Funny how things can kind of blind side you. We've been going along pretty well here at our house. I have not had PMS the last two cycles, so the HCG remains on the shelf. I have avoided returning to charting, blood draws, and cycle reviews for now. I am enjoying, for the most part, this new season of life. I am blessed by my two children beyond words. And yet, there is still the hole of course. Of children that were conceived, yet not held, and all the "what could have been."
My 5 1/2 yr old is starting Kindergarten in the fall. We are blessed to have him in a good Catholic school. I am excited for him to go to K. Some say it comes fast, but for us he is almost six (barely missed the cut off) so I just feel grateful we got a little extra time together. And I know he is ready. My 3 1/2 yr old has recently turned a corner. He is pretending to read books by retelling them, he is trying to count to 30, he counts and labels letters wherever he goes, he is rhyming, and he has started to play Hi Ho Cheerio with us. It feels a bit like the end of an era.
I continued to look on the bright side, ahead to travels with the boys, etc. And I was able to do something I have wanted to do for years. I switched my part time work schedule so I could participate in the diocese's women's bible study on Thursday mornings. My 3 1/2 yr old will go to Catechesis of the Good Shepherd (CGS) with all the children 3 and older, while I attend the study. I can't wait to be surrounded by practicing Catholics. I didn't have as many like-minded friends as I thought I would through the Catholic preK. I am hoping, through moving to the big school (K-8) community and the bible study, this will change. I know some women in the study, and they are awesome. Women of all ages join.
Yesterday, as I was registering, I had a realization that slapped me across the face. My baby is almost four. He will be in the atrium doing CGS. The study is large, so the woman are in smaller groups. The mom's group of the bible study are the ones with children under three that stay with them. I have no children under three. I won't be with the mom's my age. I won't be with the friends I know with their beautiful large families. None of them have a four year gap in their children. They will all have children on their laps. My lap is empty. [Cue the waterworks.]
I shared this with my husband yesterday. The women I am looking forward to being with are different than me. There will always be this divide. I won't have finally found my home, as I often thought. This is a really hard realization.
I don't fear being judged. honestly, likely only because its mostly a non-issue. I am quite open about our circumstances. I have thought about this a lot, and I don't think it is just because of pride and not wanting to look like we contracept. It's for education purposes, enlightenment, for them to appreciate what they have, and for me to spread the word about help and hope through the Creighton Model of Family Planning and Naprotechnology. It's also to break the silence. I never know who else might be suffering.
Perhaps these realizations were harder to swallow because I don't think we will ever adopt. My husband is too comfortable where we are at with the boys' ages, things being easier every day. He doesn't want to restart the roller coaster. It's also a money thing. Or maybe that just his excuse to avoid it. Either way, I don't want to talk him into something he may just resent me for later; or worse, our future adopted child. I had wondered before if fostering to adopt was just too outside his comfort zone. I am giving it over to God and saying a novena to St. Joseph for him.
So that is where we are right now. Eternally grateful and doing fine most days. Totally at peace with our decision to not actively pursue biological children, and that doesn't ever change. But still, there are moments that come out of nowhere and slap you in the face.
It's like, in some ways, I feel more infertile now that we have given up ttc. I guess that is because, on Clomid and HCG, and antibiotics, and B6, and mucinex, and amoxicillian, with endo treated and tubes clear, I could always conceive. I was always pregnant within 3 cycles of ttc. Six out of six. I know many of you would kill for that. But our love mostly brought forth death and not life; suffering not joy. And that is my reality. I last conceived Dec. 2012. Our Nicholas. This is by far the longest we have gone without a pregnancy; even when I nursed Charlie and didn't cycle for 13 months, we still conceived Anthony on the first cycle trying. This is just new territory for me. And it just takes some getting used to.
I am on the journey we are all called to-to accept God's will and perfect love. Whether I am white knuckling it with my eyes shut tight or standing up with my arms outstretched enjoying the ride, I try always to let God be the driver and not bail out the side when there are bumps (like IF!). On good days, I trust He won't run me into a tree. :)
Showing posts with label Infertility. Show all posts
Showing posts with label Infertility. Show all posts
7.24.2014
9.25.2013
Attempting to Let Him Lead
From the last post you may recall reading: "Here we are. Facing potentially $20k in surgery. We are done. Unless God swings the door wide open, we will try with what we have. Tubes blocked or unblocked, we don't know."
Things appear to have changed. While I don't know the outcome and if this path will lead to surgery Friday, I continue on the path that God has lead us by continuing to walk through the doors swinging wide open. The turn of events happened after I posted, of course. I called Dr. Toth to tell him we are canceling the selective HSG due the chance it may not be covered since it isn't within the context of a lap. Dr. Toth's response was unwavering. Do it. Do it in the context of a lap. I confirmed with him about surgery risk and how I thought it was risking infection spreading. His response. Do it. No putting it on me to decide. No ambiguity. Just do it. Couldn't be more clear.
So instead of calling to cancel, I called Dr. Hilger's nurses to ask first of all, this wasn't how it was already set up right? and also, is Dr. Hilgers willing to do this? Again, I was going off my prayer-doors open if this was the path we were meant to take. The nurse brought up two more potential barriers: 1) does Dr. Hilgers have time in his schedule and 2) does the hospital have time for Dr. Hilgers to do this in their OR?
The response was clear again. Yes, Dr. Hilgers will do this, yes he has time, yes the hospital has time. Again, Renee clarified it is likely to be covered. The only "risky" thing is really the unblocking with a catheter, if necessary. I would happily pay that $900 if the hospital bill is paid by insurance.
So we continued to move forward with one more piece unknown. Would I end up in the CD 4-8 window Dr. HIlger's prefers? It looked like it when we set this up but so far, no period. Stress is for sure the likely culprit. I may have had a double peak. Being concerned your job is at risk, a huge deadline coming up with a lot riding on it, a sister that is likely on drugs, a potential upcoming out of state surgery, and my oldest child have some major behavior struggles will do that to you. In talking with Cheryl, the surgery scheduling nurse, she made it sound like there is no way Dr. Hilgers would do it post peak, but he may be willing to do it a day or two earlier. I clarified we were asked to abstain so pregnancy isn't a concern and was told there was more to it than that. So we waited.
A few questions occurred to me that I received clarification on. First, I realized the change to a lap might mean a request for me to abstain and heal. I asked Dr. Toth if he intended for that and he assured me even post lap he wants us to try that very same cycle, unless of course I needed a tubal surgery and required healing from that. Teresa agreed that it was likely alright unless we encountered anything major. I also clarified that likely Dr. Hilgers would not be able to do a tube repair during the surgery, only run the catheter through. Most of those require the robot and that would be another surgery (one I don't imagine we would do). Dr. Toth reminded me that he absolutely believes the tubes are still blocked and doesn't want us to "waste" unprotected intercourse on not tic, so for that reason I hope the surgery will be soon. Miss the hubby. If we have to wait another month, I am not sure that is best for us. I imagine I'd let hubs make that decision if we got there. I can't think that far ahead though.
Today is Wed. Surgery would be Friday. I would leave town tomorrow morning. No period yet. So I called Mariam who is subbing for Cheryl, at her request, to let her know where I was at with things. I am on cycle day 32, but a little unclear about when my peak was. If I went by point of change, it had long past. But if I went by peak-type CM, then it was pretty recent. For these reasons I skipped my draw (after confirming I could get a green light for Clomid without it). Mariam said something I never expected to hear. Come anyway. I was hoping that came from Dr. Steve Hilgers, but it sounds like isn't there. She said the policy is not to cancel surgery, but to still have me come in for all my pre-op appts. Sounds like I am to keep moving forward to me. To be honest, if he does go through with the surgery, then two weeks of healing before ttc sounds a lot better than potentially only a week. Ouch :( That doesn't exactly sound like what God meant when he creates children out of love making.
I am a tad nervous they will cancel only after I get down there and do three pre-op appts (Creighton is first, then ultrasound, then pre op with Dr. Steve Hilgers). But then again, I am still on the path as I promised I would be as long as the doors don't swing shut. Should they swing shut tomorrow after appts, well, then that's what they do. I promised I would keep walking.
Things appear to have changed. While I don't know the outcome and if this path will lead to surgery Friday, I continue on the path that God has lead us by continuing to walk through the doors swinging wide open. The turn of events happened after I posted, of course. I called Dr. Toth to tell him we are canceling the selective HSG due the chance it may not be covered since it isn't within the context of a lap. Dr. Toth's response was unwavering. Do it. Do it in the context of a lap. I confirmed with him about surgery risk and how I thought it was risking infection spreading. His response. Do it. No putting it on me to decide. No ambiguity. Just do it. Couldn't be more clear.
So instead of calling to cancel, I called Dr. Hilger's nurses to ask first of all, this wasn't how it was already set up right? and also, is Dr. Hilgers willing to do this? Again, I was going off my prayer-doors open if this was the path we were meant to take. The nurse brought up two more potential barriers: 1) does Dr. Hilgers have time in his schedule and 2) does the hospital have time for Dr. Hilgers to do this in their OR?
The response was clear again. Yes, Dr. Hilgers will do this, yes he has time, yes the hospital has time. Again, Renee clarified it is likely to be covered. The only "risky" thing is really the unblocking with a catheter, if necessary. I would happily pay that $900 if the hospital bill is paid by insurance.
So we continued to move forward with one more piece unknown. Would I end up in the CD 4-8 window Dr. HIlger's prefers? It looked like it when we set this up but so far, no period. Stress is for sure the likely culprit. I may have had a double peak. Being concerned your job is at risk, a huge deadline coming up with a lot riding on it, a sister that is likely on drugs, a potential upcoming out of state surgery, and my oldest child have some major behavior struggles will do that to you. In talking with Cheryl, the surgery scheduling nurse, she made it sound like there is no way Dr. Hilgers would do it post peak, but he may be willing to do it a day or two earlier. I clarified we were asked to abstain so pregnancy isn't a concern and was told there was more to it than that. So we waited.
A few questions occurred to me that I received clarification on. First, I realized the change to a lap might mean a request for me to abstain and heal. I asked Dr. Toth if he intended for that and he assured me even post lap he wants us to try that very same cycle, unless of course I needed a tubal surgery and required healing from that. Teresa agreed that it was likely alright unless we encountered anything major. I also clarified that likely Dr. Hilgers would not be able to do a tube repair during the surgery, only run the catheter through. Most of those require the robot and that would be another surgery (one I don't imagine we would do). Dr. Toth reminded me that he absolutely believes the tubes are still blocked and doesn't want us to "waste" unprotected intercourse on not tic, so for that reason I hope the surgery will be soon. Miss the hubby. If we have to wait another month, I am not sure that is best for us. I imagine I'd let hubs make that decision if we got there. I can't think that far ahead though.
Today is Wed. Surgery would be Friday. I would leave town tomorrow morning. No period yet. So I called Mariam who is subbing for Cheryl, at her request, to let her know where I was at with things. I am on cycle day 32, but a little unclear about when my peak was. If I went by point of change, it had long past. But if I went by peak-type CM, then it was pretty recent. For these reasons I skipped my draw (after confirming I could get a green light for Clomid without it). Mariam said something I never expected to hear. Come anyway. I was hoping that came from Dr. Steve Hilgers, but it sounds like isn't there. She said the policy is not to cancel surgery, but to still have me come in for all my pre-op appts. Sounds like I am to keep moving forward to me. To be honest, if he does go through with the surgery, then two weeks of healing before ttc sounds a lot better than potentially only a week. Ouch :( That doesn't exactly sound like what God meant when he creates children out of love making.
I am a tad nervous they will cancel only after I get down there and do three pre-op appts (Creighton is first, then ultrasound, then pre op with Dr. Steve Hilgers). But then again, I am still on the path as I promised I would be as long as the doors don't swing shut. Should they swing shut tomorrow after appts, well, then that's what they do. I promised I would keep walking.
It reminds me of the thick fog this morning.
I may only be able to see my own feet and not the path ahead, but I do know who is holding my hand and I trust Him with everything. So here we are. And eventually the Son will come out and burn off a little of that fog, as He always does when the time is right.
Until then I will just grip a little tighter.
9.18.2013
The End of the Road?
Dramatic title, much? Yes, I know, but I do want to ponder this topic out loud.
But first, quick updates and background. We will wrap up our oral antibiotics on Sept. 26th. It's been good, for the most part. I do have bright orange urine once or twice a day, but thankfully my tears and sweat didn't change color. There have been a lot of sweaty 100+ days around here. That could have been...awkward.
I am taking a pretty benign probiotic, Syntol, and a second one called Yeast Management. These are mostly aimed at yeast and probably not as comprehensive as some. Dh takes align, nothing special, and hardly takes it daily. He does eat yogurt regularly, which I think can help but isn't the end all. We are, again, in general, doing great. I did have one day with very loose stools that could have been very embarrassing had I been working from my office. And that's all I am going to say about that! My dh has survived in that area. He did, we believe, have symptoms of yeast he got from me prior to all this. Those continued. My symptoms of yeast went away after treatment until about day 12 on orals. And then I died the slow death known as the yeas.t infection. Lord knows I am not exaggerating and if I could have physically removed my lady parts in anyway, I would have, and been quite happy about it. But this from someone who also didn't show enough restraint around the halloween candy.
I decided to be so smart and go to the drug store for an OTC treatment. I always forget about those. One day treatment does not in one day heal, fyi. More like 3-7. Ugh. The cream had another bad effect-making me unsure of my observations. On a month that correct charting is essential. Not good.
Dh was also treating OTC for yeast and he felt he wasn't improving. I called Dr. Toth's office as they suggested if not better and they were about to script Difl.ucan for both of us (despite me not mentioning my problem) when...oops. It decreases the effectiveness of Rifampin. So don't take together. So you should probably stop taking Rifampin and finish up after Difl.ucan. My question-will that put taking Rifampin during my fertile time or even post ovulation? Is that safe? I didn't really like the idea of disrupting our protocol. Dawn put Dr. Toth on the line who promptly said he didn't like the idea of me taking Rifampin on it's own. Our choices were to: a) ride it out. Difl.ucan (one pill, twice a week for two weeks totally four pills each) after Rifampin is done on the 26th or b) take Difl.ucan now if we must, but quit Rifampin permanently. Guess whose riding it out? Yup. These suckers.
So I continue to heal and dh continues to tread water. I can tell you he doesn't seem to be near as uncomfortable as I was or even am now 5 days post 1 day treatment so I don't feel too bad.
Some other updates, Dr. Hilger's office has been amazing in that they came back with a SHSG date of 9/27/13. Yup, the day after I finish abx. The catch, I need to be CD 4-8. Not like a reg HSG where I could be any old day. A very tight window of cycle combined with a very tight window of when Dr. Toth wanted it. They seemed to align. I got a call a few days later from Cheryl, the surgery scheduler with more info. Did it look like I would ovulate on time? I told her I might be late. Work was crazy stressful. Like I have responsibility for $25 million work of human subject protection work to take care of in a short timeline when new info keeps coming out of the woodwork. I was kind of freaking out I wouldn't meet my deadline, meaning we could not get approved to collected the data in time, when folks were scheduled with plane tickets already. That kind of pressure. Then Cheryl is on the phone saying here is your pre-op appt (wait, I have to go down a day early-I was thinking this was a one day deal?) and you'll also need an u/s the day before and a hospital pre-op. Yikes-I am thinking if my mom goes with me so the hospital will release me, then who will watch the kids...and you are telling me, don't stress, we need you to ovulate so you will be on CD 4-8?! Aaaaaahhhhh!
But my head didn't explode. instead I had peak type mucus that day, because I am weird like that. My prayer was for things to line up if we should go and they were. I have childcare. I have someone to go with me. I have a date that works with cycle (so far) and Dr. Toth's requests. So what's the problem. It's a teensy thing Cheryl said in all that "don't stress" talk. I said, just a little concerned that my insurance won't cover the HSG in a hospital. Clearly that bill could be huge. Her response? Oh, those are rarely covered. Okay.....I trust you, God. Really. But really?!
I called Rene to pre cert. The thought was, if it isn't covered then we won't go. Period. My tubes could be freaking open, people. I don't want to pay a surgery on my own dime to find this out!!!! On the flip side, they could be closed. And a little catheter through and they could be open. A little procedure. With a big price tag. A $20,000 hospital only self pay price tag, not including any of the doc bills (Hilgers, radiology, and anesthesiology) per Rene. Insert more bad news. First of all, BCBS will say they never pay SHSG. But the good news, they always do in the context of a lap. But the bad news, I am not having a lap. More bad news, there is no one that she knows that has done it this way so nothing to go on. And while precert isn't necessary, she would do it. But it's no guarantee. And they will say no, because they always say no to SHSG. Despite the fact they say they will cover dx of but not tx of infertility. To check the tubes, in my book, is to dx. To unblock is to treat. Heck, I would pay the $900 to unblock them if they were blocked if the $20k hospital bill was tied to the dx and not the tx. She guessed it was a 50/50 chance. She will talk to her supervisor, but that's what she is thinking. That, my friends, is not a risk I am willing to take. On tubes that may be already blocked. Oh, Erin, I hope you are right!
So, I have heard a lot of discussion on the yahoo health board about when to say when with ttc. And while I am sure it is different for everyone, I can tell you my journey, I have had enormous peace come over me in the last 18 months and time to absorb the fact that I may not have another child. There are moments of sadness, but it didn't have to come all at once. It was an adjustment over time. I am extremely grateful for my boys. I would love another child. But I have peace. I do not feel desperate. I do not ever want to make ttc my life or my God. Despite all we've done, it hasn't bothered me. Everyone is different on how much is too much. For me, what has bothered me is the losses. The four babies I can not hold. That will never snuggle into me and let me sniff them or squeeze me tight when they are scared. The hair I can't brush out of their eyes. Their cries I can't comfort. In a therapy session, I drew a line I didn't know I had until it came out. One more loss and I am done. Dh agreed. Dr. Toth confirmed, said completely independently. In that office we came up with another line we'd draw. If the tubes were blocked, as in tubal reconstruction blocked, we were done. Here we are. Facing potentially $20k in surgery. We are done. Unless God swings the door wide open, we will try with what we have. Tubes blocked or unblocked, we don't know. But we will not pursue further expensive treatments. We will take these next three cycles to try. The tubes may very well be open after inflammation goes down, but they may be shut in a minor way or a big way. And we are going to let it go. We will not have turned over every possible leaf. That's okay. I know in my heart it is not for us to spend this money. It won't be good on my marriage. I don't feel responsible spending it. God has a plan for us. It may be our two boys. It may be future adopted children. I have no idea. But I trust in His plan. It really wasn't a hard decision to make. It made sense to both of us and we are at peace. It wasn't even a hard decision. We just stepped outside of the situation and thought spending that money is nuts. For us, its nuts. Sometimes when you are too close to the situation, you come up with all sorts of what ifs and how our circumstances make this special. For us, stepping outside made it clearer. We have not drawn a line yet, but in the future we may have to decide again when to stop actively ttc with clomid. We know 3 cyles was enough for each of our other pregnancies, but perhaps we will need 6 to let go. I don't know. And it will be hard if we don't conceive. But despite hard times, there can still be peace in our decision. I sure know that from experience that day in the airport. I am excited about what lies ahead. If God writes our story, it will continue to be incredible.
But first, quick updates and background. We will wrap up our oral antibiotics on Sept. 26th. It's been good, for the most part. I do have bright orange urine once or twice a day, but thankfully my tears and sweat didn't change color. There have been a lot of sweaty 100+ days around here. That could have been...awkward.
I am taking a pretty benign probiotic, Syntol, and a second one called Yeast Management. These are mostly aimed at yeast and probably not as comprehensive as some. Dh takes align, nothing special, and hardly takes it daily. He does eat yogurt regularly, which I think can help but isn't the end all. We are, again, in general, doing great. I did have one day with very loose stools that could have been very embarrassing had I been working from my office. And that's all I am going to say about that! My dh has survived in that area. He did, we believe, have symptoms of yeast he got from me prior to all this. Those continued. My symptoms of yeast went away after treatment until about day 12 on orals. And then I died the slow death known as the yeas.t infection. Lord knows I am not exaggerating and if I could have physically removed my lady parts in anyway, I would have, and been quite happy about it. But this from someone who also didn't show enough restraint around the halloween candy.
I decided to be so smart and go to the drug store for an OTC treatment. I always forget about those. One day treatment does not in one day heal, fyi. More like 3-7. Ugh. The cream had another bad effect-making me unsure of my observations. On a month that correct charting is essential. Not good.
Dh was also treating OTC for yeast and he felt he wasn't improving. I called Dr. Toth's office as they suggested if not better and they were about to script Difl.ucan for both of us (despite me not mentioning my problem) when...oops. It decreases the effectiveness of Rifampin. So don't take together. So you should probably stop taking Rifampin and finish up after Difl.ucan. My question-will that put taking Rifampin during my fertile time or even post ovulation? Is that safe? I didn't really like the idea of disrupting our protocol. Dawn put Dr. Toth on the line who promptly said he didn't like the idea of me taking Rifampin on it's own. Our choices were to: a) ride it out. Difl.ucan (one pill, twice a week for two weeks totally four pills each) after Rifampin is done on the 26th or b) take Difl.ucan now if we must, but quit Rifampin permanently. Guess whose riding it out? Yup. These suckers.
So I continue to heal and dh continues to tread water. I can tell you he doesn't seem to be near as uncomfortable as I was or even am now 5 days post 1 day treatment so I don't feel too bad.
Some other updates, Dr. Hilger's office has been amazing in that they came back with a SHSG date of 9/27/13. Yup, the day after I finish abx. The catch, I need to be CD 4-8. Not like a reg HSG where I could be any old day. A very tight window of cycle combined with a very tight window of when Dr. Toth wanted it. They seemed to align. I got a call a few days later from Cheryl, the surgery scheduler with more info. Did it look like I would ovulate on time? I told her I might be late. Work was crazy stressful. Like I have responsibility for $25 million work of human subject protection work to take care of in a short timeline when new info keeps coming out of the woodwork. I was kind of freaking out I wouldn't meet my deadline, meaning we could not get approved to collected the data in time, when folks were scheduled with plane tickets already. That kind of pressure. Then Cheryl is on the phone saying here is your pre-op appt (wait, I have to go down a day early-I was thinking this was a one day deal?) and you'll also need an u/s the day before and a hospital pre-op. Yikes-I am thinking if my mom goes with me so the hospital will release me, then who will watch the kids...and you are telling me, don't stress, we need you to ovulate so you will be on CD 4-8?! Aaaaaahhhhh!
But my head didn't explode. instead I had peak type mucus that day, because I am weird like that. My prayer was for things to line up if we should go and they were. I have childcare. I have someone to go with me. I have a date that works with cycle (so far) and Dr. Toth's requests. So what's the problem. It's a teensy thing Cheryl said in all that "don't stress" talk. I said, just a little concerned that my insurance won't cover the HSG in a hospital. Clearly that bill could be huge. Her response? Oh, those are rarely covered. Okay.....I trust you, God. Really. But really?!
I called Rene to pre cert. The thought was, if it isn't covered then we won't go. Period. My tubes could be freaking open, people. I don't want to pay a surgery on my own dime to find this out!!!! On the flip side, they could be closed. And a little catheter through and they could be open. A little procedure. With a big price tag. A $20,000 hospital only self pay price tag, not including any of the doc bills (Hilgers, radiology, and anesthesiology) per Rene. Insert more bad news. First of all, BCBS will say they never pay SHSG. But the good news, they always do in the context of a lap. But the bad news, I am not having a lap. More bad news, there is no one that she knows that has done it this way so nothing to go on. And while precert isn't necessary, she would do it. But it's no guarantee. And they will say no, because they always say no to SHSG. Despite the fact they say they will cover dx of but not tx of infertility. To check the tubes, in my book, is to dx. To unblock is to treat. Heck, I would pay the $900 to unblock them if they were blocked if the $20k hospital bill was tied to the dx and not the tx. She guessed it was a 50/50 chance. She will talk to her supervisor, but that's what she is thinking. That, my friends, is not a risk I am willing to take. On tubes that may be already blocked. Oh, Erin, I hope you are right!
So, I have heard a lot of discussion on the yahoo health board about when to say when with ttc. And while I am sure it is different for everyone, I can tell you my journey, I have had enormous peace come over me in the last 18 months and time to absorb the fact that I may not have another child. There are moments of sadness, but it didn't have to come all at once. It was an adjustment over time. I am extremely grateful for my boys. I would love another child. But I have peace. I do not feel desperate. I do not ever want to make ttc my life or my God. Despite all we've done, it hasn't bothered me. Everyone is different on how much is too much. For me, what has bothered me is the losses. The four babies I can not hold. That will never snuggle into me and let me sniff them or squeeze me tight when they are scared. The hair I can't brush out of their eyes. Their cries I can't comfort. In a therapy session, I drew a line I didn't know I had until it came out. One more loss and I am done. Dh agreed. Dr. Toth confirmed, said completely independently. In that office we came up with another line we'd draw. If the tubes were blocked, as in tubal reconstruction blocked, we were done. Here we are. Facing potentially $20k in surgery. We are done. Unless God swings the door wide open, we will try with what we have. Tubes blocked or unblocked, we don't know. But we will not pursue further expensive treatments. We will take these next three cycles to try. The tubes may very well be open after inflammation goes down, but they may be shut in a minor way or a big way. And we are going to let it go. We will not have turned over every possible leaf. That's okay. I know in my heart it is not for us to spend this money. It won't be good on my marriage. I don't feel responsible spending it. God has a plan for us. It may be our two boys. It may be future adopted children. I have no idea. But I trust in His plan. It really wasn't a hard decision to make. It made sense to both of us and we are at peace. It wasn't even a hard decision. We just stepped outside of the situation and thought spending that money is nuts. For us, its nuts. Sometimes when you are too close to the situation, you come up with all sorts of what ifs and how our circumstances make this special. For us, stepping outside made it clearer. We have not drawn a line yet, but in the future we may have to decide again when to stop actively ttc with clomid. We know 3 cyles was enough for each of our other pregnancies, but perhaps we will need 6 to let go. I don't know. And it will be hard if we don't conceive. But despite hard times, there can still be peace in our decision. I sure know that from experience that day in the airport. I am excited about what lies ahead. If God writes our story, it will continue to be incredible.
9.05.2013
Responses to Questions and Comments on our Treatment Posts
I so appreciate those following and I apologize it took a bit to respond to questions. I have cut and pasted them below, from comments, but if I forget one, don't hesitate to let me know.
1. Once you complete the treatment, can the infection return or does it cure it for good? Also, is this the extent of his treatment or do some people have to go through even more invasive things.
Great question. Our hope is certainly that the infection will be gone for good, but we don't believe that will be the case. It all depends on how long you have had the infection as well as other things I am sure. Dh was first diagnosed with Ch.amydia before we met in 2003, so I don't recall the exact year. That mean at least 10 long years of the infection in his system, definitely that goes against us curing it forever. Now, he hasn't had active signs that he has known about all that time. He took the usual short course of meds and felt better. Then when there is no way he could have been reinfected, he had symptoms again. And again. One time he tested negative I believe, and still received the meds. The third time they didn't bother testing him. The test (swab) is very painful and not particularly accurate. Dh also tested negative on the new urine test he had recently prior to going to NY and testing positive. Does this mean he didn't really have it? Quite the opposite. We believe the meds killed some of the Chlamydia, but only in its active phase (it has a life cycle, that may not be the right word). If any is left, it can spread and remain in the system, each time perhaps getting nastier and more resistant to the antibiotics provided. Repeat doses of the orals only hurt my dh, didn't help him.
Additionally, there is a good chance Chlamy.dia came down my family line as well. We will never know for sure, but my mom had a miscarriage, as well as both of my older sisters. There are a few classic signs, like my littlest sister (the one after the miscarriage) has a lot more signs of infection and has never been pregnant despite lots of opportunities. She has constant bladder infections, almost no immune system, lots of problems. One of Dr. Toth's book (which I have both as free docs on my computer if you want them) has a quiz in the back to determine risk factors. I can send it to anyone who would like. My family had other risk factors. If my family has passed this through generations, then that is another sign against a complete cure.
Honestly, I think knowing we wouldn't necessarily get a complete cure from treatment was helpful up front. I know more than one person quite disappointed because that is what they were expecting. Treatment is invasive. It's expensive. Like most things in life, it doesn't come with a guarantee, unfortunately.
What we did do was treat something we know we have with the most comprehensive treatment available for it. And for that, we feel good.
I learned the typical "full" testing treatment is: testing in the form of a swab for the guy, cervical culture for the girl, ultrasound on the male's prostate, ultrasound on the female, a semen sample for the male. Treatment is a 10 day IV for each (clindamyacin), 5 days of a broad spectrum antibiotic cocktail shots for the male (all five days include 2 prostate injections each day, two of the days included two seminal vesicle injections). [By the way, my dh perseverated on the number of shots prior and it didn't end up really being a factor. Harder days were given more meds, etc. Many days the second shot wasn't felt at all, etc.] Women typically do the cervical D&C and receive 10 uterine lavages of the broad spectrum antibiotic cocktail (some days can be doubled up-for example two after the D&C is common). Changes can be made to meds based on allergies. There is also 30 days of antibiotics following the IV done to tailor the treatment to the results of the cultures. Add ons, to my understanding, are bladder lavages for those with severe reoccurring bladder infections (women), a full D&C for those women that need it, and for the men who have burning symptoms they can numb the penis completely and do what is referred to as a flagyl cream fill inside the penis. We did not do any of the add on items listed. We also did not do a semen analysis (dh had one in 2008 when we were there). We did not test for everything possible. We tested mycoplasma and CT for me, aerobes and anaerobes and just CT for dh.
2. What have you done as far as probiotics to protect your system during treatment? Have you had any issues with yeast infections with this or past treatment? I struggle with that just under Hilgers antibiotic treatment. Thanks! -Renee
Ironically, we were likely struggling with yeast prior to the treatment so I was worried about that. I had signs of yeast infection, but I let it go assuming it would continue if it was the real deal. It came and went, so I thought it was something else. Dr. Toth said yeast fluctuates based on your cycle so that could have been the cause. One of several symptoms dh was having was likely yeast. We thought it may be due to our internet research prior to going to NY. That has not gone away, he doesn't think. He is going to pay more attention and knows if he still has it, he can get a OTC or prescription cream from Dr. Toth. Since we are not have sex right now, we aren't passing the yeast back and forth and I have had no symptoms during or after treatment related to yeast. I take a probiotic called Syntol, and another called "yeast management" recommended by a friend. I have taken about two a day and will take them a full four weeks following the end of the orals, so it is expensive. I give my dh align or culturelle, so not expensive probiotics really. He always eats greek yogurt daily with his lunch so he continues that. Both of us feel fine on the orals. I have had some loose stools, but my stomach isn't upset at all so far and it hasn't gotten progressively worse. Dh said he feels the same. Physically, we feel pretty great. Dr. Toth actually says the research on probiotics is very mixed. Dr. Hilger's office offered a suggested probiotic and various immune support. I am completely frustrated i can't find the paper I wrote them down on, but I will update the post if I come across them.
3. Hi, thanks for sharing this information. I have a few questions for you if you get a chance to address them. Do you know how prevalent this level of infection is? Are we all walking around with latent infection? Can two people who have only had sex with each other have this type of infection? If you have trouble conceiving but were able to carry the baby to term does that mean you do not have infection? Thanks!
This is so important to discuss.
- First of all, Chlamydi.a itself is the #1 sexually transmitted disease. It is highly prevalent.
- Then consider this: those diagnosed with it think they can take a pill or a few pills and it will be gone. I subscribe to dr. Toth's and other's belief that this is not the case and it can be much more persistent than that. So men that "do the right thing" and get tested and treated and then are given the all clear, could be continuing to spread it to partners.
- Then think about how they test for it: the swab. Men hate the swab, it is by far the most painful thing my husband has ever experienced (yes, worse than prostate injections). So I imagine most men avoid it.
- For those that do test, there are many false negatives. These tests are now machine read to save time and money and that leads to less accuracy. Testing the way dr. Toth does leads to more positives, but he also has a lot more positives than the general population because of who comes to see him. They come to him because they know they have an infection or they know they have all the symptoms. Even Dr. Toth will tell you the test is limited to the area they test-is there active infection in that area at that time. So if all your history and symptoms scream infection, then you probably have it even if your test is negative. In fact, some couples only have one member test positive. Of course both should still be treated.
- Unfortunately, Chlamydi.a is spread more ways than just by se.x. It is spread to children through delivery. So you can be a virgin and have Chlamydia and not know it. You can be married and both you and your husband were virgins before you got married, and both have Chlamydia. Most people don't realize this.
- Finally, Chlamydia isn't the only infection that causes infertility. It isn't the only infection Dr. Toth tests for and treats. He is a pathologist. He treats all infections. Traditional "STDs" aren't the only ones that cause infertility. Many infections affect fertility. So if you have had STD testing, or are a virgin, you can still have an infection that affects your fertility. When I think about how many people have trouble getting pregnant, miscarry, deliver early..when I think of how many people have unprotected sex and premarital sex...I think infections are a huge epidemic due to being under diagnosed and under treated. One more thing-new research is suggesting Lyme disease (an infection that is spreading widely) may now be sexually transmitted and also passed on through childbirth. I think infections are a big problem in general. Dr. Toth says they are so under researched and that he believes they are tied to more than just IF-heart disease, cancer, etc. The body can't operate the way it was meant to if it is fighting a long term infection.
Airing the Chapel, that may be the result of skimming, or perhaps I didn't address it. I am not sure, so I am glad you asked if you sincerely wanted to know. While I think it is important to treat a systemic infection, I was not 100% convinced we should go to NY. I knew the treatment was expensive and we'd have to fight insurance to get even some paid for. I knew it was no guarantee to fix the problem long term. I knew there was certainly no guarantee of a healthy pregnancy. I knew it was going to painful for my dh. I knew we'd have to leave our children for over a week. I was at peace with our two children. I was also open to the possibility of adoption. I didn't have a clear sense of what we should do. Not in a tormented indecisive way. In a "I see the benefits to both sides" sort of way. So I did nothing despite the recommendation from Dr. Hilgers. And I prayed about it. And what happened was my dh got symptoms. And my dh was miserable. And my dh lead the effort of looking into it and researching it. And my dh made the final decision that we should go. For the possibility to improve our health for us and the children we already have. He also has a strong desire for a third biological child if possible, but we both agreed we would not pursue that if Dr. Toth thought it was not healthy to pursue. This was huge. Because, you see, my husband doesn't like to be away from our children (more than the average parent). He actually has paranoia that something will happen to us or them (he lost his dad in a car wreck at 12). He also doesn't typically go for unconventional treatments. He doesn't like pain (who does?) or needles in even the smallest sense. He is a reasonable guy, a CPA. He was not feeling good. He did his homework. He asked a lot of questions. And as the leader of our family, as well as the primary breadwinner, the one with the day to day symptoms, and the one that had to endure the most during treatment, he said yes. He thought it was best for us and our family. And as he was making that choice prayerfully and doing the research, barriers were removed. Plane ticket credits, hotel credits, deductibles already met, stocks increased in value, work time requested off was granted, my mom was no longer sick and could watch the kids, and things continued to fall in place. Our peace continued so we moved forward.
Regarding why my dh received shots in the prostate, I have cut and pasted some info from Dr. Toth's site:
Functional considerations: The prostate gland serves three basic functions:
Thanks for all your questions. If this sparks more, ask away. Coming soon...hsg next steps.
Regarding whether one could have an infection if they have trouble conceiving, and yet carry to term, I can only say that I don't think carrying to term in and of itself rules out an infection. People can have an infection and then pass it on to a child that is carried to term. Infection doesn't always lead to total inability to get pregnant, inevitable miscarriage, or early delivery and compilation. It can lead to problems for the child conceived in an infectious environment, but not always. The way I knew I had an infection was through multiple routes: 1) I tested positive for ureaplasma urealycticum during my lap with Dr. H-but Dr. H will be the first to tell you that many many patients test negative with him that respond well to antibiotics, 2) my dh's history with infection, 3) I had brown bleeding at the end of my period with normal progesterone levels as checked by Dr. Hilgers at his lab, 4) my miscarriages were consecutively worse-each they happened earlier then the last; plus the babies showed delay when compared to my dates of conception, 5) every lap showed a ton of inflammation that I was told was due to infection or inflammation, and 6) I did well with antibiotics and conceived healthy children until I overused them, my symptoms returned, and I lost babies again. Things that can make infection worse are: pregnancy, miscarriages, and surgery. I had two losses, had two healthy boys after aggressive treatment, then had a surgery, a pregnancy, a miscarriage, a D&C, a pregnancy, another miscarriage. So lots of making the infection worse. If you want to rule out infection, you can have cultures done during a lap with Dr. Hilgers, but since those aren't foolproof either a lot of it comes down to history and symptoms. I suggest reading Dr. Toth's book and taking the quiz. I suggest joining Dr. Toth's yahoo health discussion board found on his website fertilitysolution.com. That would be a good place to start.
1. As a stopgap, it determines whether the man is urinating or ejaculating
2. As an immunological organ, it secretes bactericidal fluid that mixes with the ejaculate and protects spermatozoa
3. Not unlike the tonsils, it serves as a filter for bacteria entering the male body through the urethra. The prostate entraps and sequesters invading bacteria, and undergoes inflammatory and structural changes. In a stationery organ this process would ideally serve the body. As the prostate gland contracts every time a man ejaculates or urinates, these sequestrations are imperfect. Escaping bacteria are squeezed into other healthy parts of the prostate. If they enter the ejaculate, the bacteria will enter the female partner’s reproductive canal and may damage both the physical integrity and reproductive performance of the female genital tract. Once pathogenic bacteria breach the prostate, ascending infection to the bladder and to the kidneys or descending infection to the epididymis can occur. I rarely see males with bladder infections or kidney infections in my practice. I meet patients with epididymal infections regularly.
2. As an immunological organ, it secretes bactericidal fluid that mixes with the ejaculate and protects spermatozoa
3. Not unlike the tonsils, it serves as a filter for bacteria entering the male body through the urethra. The prostate entraps and sequesters invading bacteria, and undergoes inflammatory and structural changes. In a stationery organ this process would ideally serve the body. As the prostate gland contracts every time a man ejaculates or urinates, these sequestrations are imperfect. Escaping bacteria are squeezed into other healthy parts of the prostate. If they enter the ejaculate, the bacteria will enter the female partner’s reproductive canal and may damage both the physical integrity and reproductive performance of the female genital tract. Once pathogenic bacteria breach the prostate, ascending infection to the bladder and to the kidneys or descending infection to the epididymis can occur. I rarely see males with bladder infections or kidney infections in my practice. I meet patients with epididymal infections regularly.
http://www.fertilitysolution.com/Treatment-for-Chronic-Prostatitis/
I hope you have read this in it's entirety. While I appreciate your concern for my husband and the pain he endured, I assure you it was quite voluntary and no one was more sympathetic to what he endured than myself. While I in noway discount what he went through, I would like to add women often go through many difficult things while treating infertility. My husband chose to take some of this on himself, and I honestly appreciate that he wasn't just willing to put me through things and then decline when it was his turn. That being said, I wouldn't have thought any less of him if he chose to not do treatment, I was honestly in a peaceful place and would have accepted that. And, I know that for me personally, going through the lab work, laps, mid lines, D&C's, and shots wasn't a big deal. Shots don't bother me, the pain was not ever severe, etc. It was the emotional part that was hard,, and he shared that with me every step of the way. Not to mention giving me the four shots a week through both pregnancies was harder on him then on me receiving them. My husband, though, has much appreciation for what I have been through. Additionally, I see that he has some pride for tackling something that he was somewhat fearful about. He learned what he was made of, in a sense. He told me before he has never been put to the test when it comes to pain. He showed such awe and appreciation for me having been through childbirth (and no, it wasn't natural; actually when my epidural worked I will go on the record as saying it was actually no big deal; but that first time when they refused to give me an epidural because I "wasn't far along yet", yet I was in hard labor due to pitocin-well, I earned my stripes that day). This was the first time I really heard him express admiration for me in this area. Because I know him, I know he would have been mad at himself if he would have let fear alone be the deciding factor in whether or not we went to NY for treatment. Also, me not nagging him, letting him make the decision, it brought us closer together. Dh, for maybe the first time really immersed himself in this research. It wasn't me. He took a very real personal interest in it this time, even more than before. I had already done the research. We were able to talk about it at a level of detail we hadn't already. We treated our infertility together for the first time. Regardless of the outcome, it was a good experience and we are glad we made the choice to go. Yes, I said we. Dh said he would do it all over again. And that, my friends, is quite the testimony.
8.25.2013
IV Day 7-9
IV days 7-9-Fri, Saturday, Sunday (I changed the way I numbered things to try and make it less confusing. I also added pics to this and previous posts, so feel free to check them out!)
Things continued to go smoothly. My IV has never really bothered me. The worst is it got mildly sore today. In addition, the clear plastic pulled on my arm hair a bit today (day 9). Other than that, nothing. It is easier than my pump I had with previous IVs because mostly they took care of it (changed bags, batteries), they wrapped it much better so I didn't have to wrap it each day to shower, and the tubing is less likely to kink meaning I haven't once heard the alarm (so dh doesn't feel nervous about going to work with it tomorrow). Other differences are it is a different brand of pump, takes smaller batteries, and the IV bag is more concentrated (i.e. less actual fluid going in). I am perseverating on the small stuff only to give you the full pic and tell you there is nothing to be worried about :).
I never got any more cramps or soreness. I am noticing looser stools, and my guess is I will be a downright mess by 30 days despite probiotics. Such is life. I am much happier home with two ply soft toilet paper than that sandpaper in the apt and the airport. And can I just say I wish I had some moist toilets in my purse? Okay, TMI. I know. But for those following in my footsteps, pack accordingly. :)
Day 7 we continued to have fun, walking half way across the brookly.n bridge (because we were that lame and TIRED-tons of walking all week). Greeting me when I returned was Wafels and Dinges. I was excited to finally be in the same spot at the wafel truck my BFF turned me on to, which was a game I figured I would lose due to technology not cooperating and thus overjoyed that it randomly happened.
Since we flew home on day 8, we each were taught how to change our bag (due to occur on day 9) and batteries (not expected, but just in case). We traveled home with the pumps on and extra IV bags in our checked luggage. Dr. Toth's office provided a 2nd letter, this one more specifically for the airport. This letter included mention of the extra IV bag. We presented the letter with our boarding pass and DL and were given instructions. We simply went around the scanner and got patted down. It was fine and there wasn't much delay.
The trip was fun and helpful, but it is so awesome to be back home with our sweet boys.
I changed both our bags this morning easily and without incident. I had some brighter bleeding this morning, so I wonder if I am actually started. Dr. Toth said it may or may not be delayed. As before, the blood is bright red and healthy, which is always awesome to see. The first time I was on the antibiotics and saw the bright red blood, I was so shocked. I had no idea it was supposed to look like that!
Tuesday morning is day 11, so I will remove the IVs in teh morning. Dr. Toth send home alcohol pads, 2x2 guaze, and bandaids. They don't expect it to bleed much, and it is just like a long piece of spaghetti (no needle or anything). Again, not concerned. We will take Tuesday off and start the orals Wed.
Things continued to go smoothly. My IV has never really bothered me. The worst is it got mildly sore today. In addition, the clear plastic pulled on my arm hair a bit today (day 9). Other than that, nothing. It is easier than my pump I had with previous IVs because mostly they took care of it (changed bags, batteries), they wrapped it much better so I didn't have to wrap it each day to shower, and the tubing is less likely to kink meaning I haven't once heard the alarm (so dh doesn't feel nervous about going to work with it tomorrow). Other differences are it is a different brand of pump, takes smaller batteries, and the IV bag is more concentrated (i.e. less actual fluid going in). I am perseverating on the small stuff only to give you the full pic and tell you there is nothing to be worried about :).
I never got any more cramps or soreness. I am noticing looser stools, and my guess is I will be a downright mess by 30 days despite probiotics. Such is life. I am much happier home with two ply soft toilet paper than that sandpaper in the apt and the airport. And can I just say I wish I had some moist toilets in my purse? Okay, TMI. I know. But for those following in my footsteps, pack accordingly. :)
Day 7 we continued to have fun, walking half way across the brookly.n bridge (because we were that lame and TIRED-tons of walking all week). Greeting me when I returned was Wafels and Dinges. I was excited to finally be in the same spot at the wafel truck my BFF turned me on to, which was a game I figured I would lose due to technology not cooperating and thus overjoyed that it randomly happened.
Since we flew home on day 8, we each were taught how to change our bag (due to occur on day 9) and batteries (not expected, but just in case). We traveled home with the pumps on and extra IV bags in our checked luggage. Dr. Toth's office provided a 2nd letter, this one more specifically for the airport. This letter included mention of the extra IV bag. We presented the letter with our boarding pass and DL and were given instructions. We simply went around the scanner and got patted down. It was fine and there wasn't much delay.
The trip was fun and helpful, but it is so awesome to be back home with our sweet boys.
I changed both our bags this morning easily and without incident. I had some brighter bleeding this morning, so I wonder if I am actually started. Dr. Toth said it may or may not be delayed. As before, the blood is bright red and healthy, which is always awesome to see. The first time I was on the antibiotics and saw the bright red blood, I was so shocked. I had no idea it was supposed to look like that!
Tuesday morning is day 11, so I will remove the IVs in teh morning. Dr. Toth send home alcohol pads, 2x2 guaze, and bandaids. They don't expect it to bleed much, and it is just like a long piece of spaghetti (no needle or anything). Again, not concerned. We will take Tuesday off and start the orals Wed.
8.22.2013
IV Day 6, Questions for You, and Dr. Toth's retirement
IV Day 6, Thursday:
KEEP THE QUESTIONS COMING. I PLAN TO ANSWER THEM SHORTLY
Today was another good one, despite not going AT ALL as planned. Oops. We had many days we were up early, no problem. One we were up late, but still on time to our late appt. And then there was today, where we were up early with a late appt (10:30am) and managed to be late. Honestly, not sure what happened there, but it involved time to make eggs and coffee, time for dh to submit a resume, but a rushed shower, an equally rushed booking of the "insider wall street" finance tour, and no time to check the weather. But I did have time to blow dry my hair and make us late, which was ironic given I walked out the door and it was pouring. Forgetting we even had an umbrella in the apt, we attempted to hail a cab while walking in the direction of the doctor's office. Needless to say we got to Dr. Toth's prior to finding a cab. Halfway there we determined dh would go back after getting his 2 vicadi.n. Normally he waits in the office to "marinate" (Dr. Toth language) a half hour or 45 min, since his shots take less than 15min while my washes take 55 min (if they are a single wash-today it was). I was a little concerned since that morning while wiping I felt tender, but the washes were fine. The only difference is I noticed the catheter being inserted, where I hadn't even noticed before. But after the first 1/2 second, I didn't even feel that. I think I mistakingly thought urinary tract when hearing catheter, but it really is in your cervix for these washes, so it isn't as big of a deal at all. I felt a little bit of cramps for the hour after. Dawn commented how healthy and pink my cervix looked now, not like I had even just had a D&C. Good news! I took an ibuprofen afterwards, just to be sure I wasn't slowed down at all for the day's events.
Dh came back with my jacket, his hat, and our umbrella and had his injections. He had no valium this day (didn't realize he had none since the first day). Today dh said the shots were even easier than Monday (Monday was also two prostate shots, no SV injections), which was a relief because he had woken a little tender today, given his four shots the day prior (SV injections plus prostate injections). But he continued to feel fine all day today, thankfully.
After our treatment, we were to do our follow-up appt with Dr. Toth. this was not to be done on the last day as Dr. Toth was not available. Which was fine because Sat was my last treatment, but dh would be done on Fri. Dr. Toth is the one that does dh's shots, Dawn the nurse does my washes. And we didn't want to do the follow-up tomorrow because dh would be on Demora.l and wouldn't remember the convo. We were going to ask Dr. Toth about this when we arrived, but they were already on top of it and told us to come into Dr. Toth's office after I got dressed.
Dr. Toth is very easy to get along with, if I haven't mentioned that before. He is funny, easy-going, has silly one liners I am sure he says to every patient. His job is to put people at ease. He is fairly easy to understand and he wants to make sure you really understand what is going on. By the way, all the staff is fantastic and so open to any questions, etc. One thing that struck me last time I was here was how often I actually got to talk on the phone to Dr. Toth afterwards. He really stays with you and is extremely committed and accessible. He reassured us of this again in his office.
First of all we discussed how Dr. Toth had only one result back and that was that we both had Chlam.ydia for sure. Prior to this trip, dh was tested with urine only at the urologist. We knew it wasn't an accurate test, but it was non-invasive so we let them. Can I just note that not everyone who goes to Dr. Toth has CT, but yes, most due. I know this because we came back negative (both of us) after heavy biaxin in 2008. At Dr. Toth's. His lab. So no, not everyone is positive. But we have a serious epidemic in this country of CT, and it is constantly perpetuated by the fact that people test negative by common testing and think all is well. So frustrating! And then if you do come back positive, the idea that one pill will take care of it when we know that it goes through various life cycles and that pill can never get the rest. So frustrating! I specifically requested no biaxin due to my suspected immunity. Dr. Toth already planned a different course for us. We would take two pills each day-one Ripamphin and one Zithromax. We would take them each a month at breakfast time, beginning 24 hrs after the IV is removed.
Okay, onto my tubes. Yes they were blocked. Dr. Toth reiterated his test was not as sensitive as the way Dr. Hilgers does it and all he knows is with even great pressure the dye would not go through. He said that when I had the miscarriages, the bacteria grows at faster rate than the baby with my immune system suppresses and that's how our babies die. He doesn't know if my tubes have scar tissue blocking them or they are merely swollen. If they are swollen shut from infection, the antibiotics can result in them reopening on their own. Smart girl, E! I had no idea! As a result, the plan is to wait one month (not one cycle) and have my local ob/gyn repeat the hsg. Prior to this we will have no intercourse because we will not want to chance any infection remains to reblock the tubes or further damage. We will be sure to have the doc view on the film if dye goes through. If it's blocked, we need to know if the dye goes only half way through and stops? If so, almost impossible to open and if so still much higher chance of ectopic. Now, if the dye gets stopped at the end, or only a little comes out, Dr. Toth said that is much easier to repair. Dr. Toth does not do surgery to repair tubes, and trusts that Dr. Hilgers to do the procedure if necessary, bringing on board appropriate abx to ensure he does not spread any possible remaining infection. Since my tubes were opened easily by Dr. Hilgers in June 2012 with the dye and open as recently as Dec 2012 when I was pregnant most recently, of course we hope they are not beyond repair. Now, we know that Dr. Hilgers is a wonderful surgeon at tube repair, so that will factor in to our decision of if we operate, etc. I would love to hear from you if you've had a tubal repair surgery with Dr. Hilgers. I am glad we can retest so soon. We certainly don't want to put off a surgery when we can do it this insurance year. Let's just say we will have no problem saying we paid over 7% AGI in medical expenses. For anyone who has claimed that, I would love to hear from you what kinds of records I should keep and questions I should be asking.
If we do operate on the tubes, we will have to wait the amount of time required to allow everything to heal (maybe 3-4 months) to ttc. Normally Dr. Toth says 3-4 months post treatment is a good amount of time to wait to ttc to allow the immune system to calm down. Not us. If my tubes are open in a month, he wants us to ttc right away if that is our ultimate intention. Dr. Toth also reiterated what we were thinking, if we have another loss, its the end of the road for us. No questions.
Now if we do get pregnant, he will likely be changing my IV from Clindamyacin to something else. I have had FIVE-ten day IVs of Clindamyacin (4 for pregnancies, 1 for treatment just now) and 2 IV's of Clindamyacin during my two full term deliveries. Yes, you read that right. That means I have moved beyond the norm for Dr. Toth even and into unchartered territory. He thought, he scratched his head, he talked out loud, he told me to remind him. Dr. Toth kept repeating he would not drop me and we would work through all of this. I did, however, push him a bit about the IV to think about it now because I have been known to get pregnant the first cycle trying. Since Dr. Toth has recommended in the past to get the IV as soon as my hcg doubles, that is a fast turnaround. Even with the local infusion company on board, a new script would slow things down, and once they receive it, they usually need a few days to prep (longer if the weekend). He mentioned rice something or Cleocin. The others tend to burn veins. Then I would continue an oral regime during pregnancy as I did with Anthony (that wasn't in place when I was pregnant with Charlie) of 10 days on, two months off. With another IV upon delivery, I assume, though it wasn't discussed.
I did ask about concern with me being on hcg. Dr. Toth said even though it suppressed the immune system, it was mild and he wasn't concerned. I FORGOT TO ASK HIM RE LDN. I also told him we didn't really want to ttc if Dr. Toth had major concerns it would put us right back here. Only way to stay 100% was to avoid intercourse always (or use condoms) and not tic. If we feel so much better after treatment and never want to go back there to those symptoms, that was our best bet. But there were good signs, like how healthy our boys were after just biaxin and how dh's prostate didn't look any worse than it did five years ago. Sure, there were infection signs, but in his eyes I am young (35) and the end of the road was only clear cut if a) the tubes are blocked in a way that is difficult to repair and not likely successful or b) we had one more miscarriage. We agreed. Time will tell. So another question, for those of you Catholics that did treatment, did you limit intercourse? Did you avoid except ttc? Did you use perforated condoms? Or did you return to sharing infection if any remained in each of you? No judgement, just contemplating.
So that's it for next steps. We tested for more bacteria that will be back in 2-3 more weeks, but CT was the big one. If I add in the Dr. Hilgers the timeline looks like this---
Fri:
Sept. 25:
Questions for Dr. Toth:
Dr. Toth's retirement plans:
Dr. Toth's retirement is not like what you and I would consider retirement. He is merely scaling back and will be only 10 days living in NY each month, and at least two weeks every month in FL. He mentioned opening a second site in FL and neither dh or I thought he was kidding.
Okay, I thought I would get to our fun stuff today, but I will just keep it brief (for me). I took us down to lower manhattan for a wall street insiders tour (dh is a CPA; i find it interesting as well). except in my hurry today I didn't realize the tour wasn't daily, so i accidentally booked it for tomorrow (a demora.l day). Oops! That caused us to unnecessary rush down to lower manhattan and miss St. Patrick's again! At least it won't start until the it should be out of his system. It was pouring and we stopped at a coffee place and regrouped. Lower manhattan has these great signs with all the attractions, so we ended up discovering a treasure we wouldn't have found otherwise: the Museum of Jewish Heri.tage. Dr. Toth's is near museum mile, but dh and I are more into history than art or natural history which was the focus of those. Even the Jewish museum on the mile was more artifacts and art focused. So we were thrilled to find this gem for $12 each, not just because of the Jewish roots of our Catholic faith, but for my own personal Jewish roots. My mother's mother (yes, that means me too) was jewish. Though sadly she knew nothing of her faith. Her parent didn't pass it down for fear of ridicule. They came over from Poland/Russia area to start a new life. My grandmother married a Catholic and the rest was history. :) The museum was great, as was the free ferry ride to S.taten island passing the statue of lib.erty. We grabbed an appetizer and tried a peach beer at a festive local bar with live music and headed home exhausted I am bummed we missed St. Patrick's, but it looks like we will head that direction again tomorrow!
KEEP THE QUESTIONS COMING. I PLAN TO ANSWER THEM SHORTLY
KEEP THE QUESTIONS COMING. I PLAN TO ANSWER THEM SHORTLY
Today was another good one, despite not going AT ALL as planned. Oops. We had many days we were up early, no problem. One we were up late, but still on time to our late appt. And then there was today, where we were up early with a late appt (10:30am) and managed to be late. Honestly, not sure what happened there, but it involved time to make eggs and coffee, time for dh to submit a resume, but a rushed shower, an equally rushed booking of the "insider wall street" finance tour, and no time to check the weather. But I did have time to blow dry my hair and make us late, which was ironic given I walked out the door and it was pouring. Forgetting we even had an umbrella in the apt, we attempted to hail a cab while walking in the direction of the doctor's office. Needless to say we got to Dr. Toth's prior to finding a cab. Halfway there we determined dh would go back after getting his 2 vicadi.n. Normally he waits in the office to "marinate" (Dr. Toth language) a half hour or 45 min, since his shots take less than 15min while my washes take 55 min (if they are a single wash-today it was). I was a little concerned since that morning while wiping I felt tender, but the washes were fine. The only difference is I noticed the catheter being inserted, where I hadn't even noticed before. But after the first 1/2 second, I didn't even feel that. I think I mistakingly thought urinary tract when hearing catheter, but it really is in your cervix for these washes, so it isn't as big of a deal at all. I felt a little bit of cramps for the hour after. Dawn commented how healthy and pink my cervix looked now, not like I had even just had a D&C. Good news! I took an ibuprofen afterwards, just to be sure I wasn't slowed down at all for the day's events.
Dh came back with my jacket, his hat, and our umbrella and had his injections. He had no valium this day (didn't realize he had none since the first day). Today dh said the shots were even easier than Monday (Monday was also two prostate shots, no SV injections), which was a relief because he had woken a little tender today, given his four shots the day prior (SV injections plus prostate injections). But he continued to feel fine all day today, thankfully.
After our treatment, we were to do our follow-up appt with Dr. Toth. this was not to be done on the last day as Dr. Toth was not available. Which was fine because Sat was my last treatment, but dh would be done on Fri. Dr. Toth is the one that does dh's shots, Dawn the nurse does my washes. And we didn't want to do the follow-up tomorrow because dh would be on Demora.l and wouldn't remember the convo. We were going to ask Dr. Toth about this when we arrived, but they were already on top of it and told us to come into Dr. Toth's office after I got dressed.
Dr. Toth is very easy to get along with, if I haven't mentioned that before. He is funny, easy-going, has silly one liners I am sure he says to every patient. His job is to put people at ease. He is fairly easy to understand and he wants to make sure you really understand what is going on. By the way, all the staff is fantastic and so open to any questions, etc. One thing that struck me last time I was here was how often I actually got to talk on the phone to Dr. Toth afterwards. He really stays with you and is extremely committed and accessible. He reassured us of this again in his office.
First of all we discussed how Dr. Toth had only one result back and that was that we both had Chlam.ydia for sure. Prior to this trip, dh was tested with urine only at the urologist. We knew it wasn't an accurate test, but it was non-invasive so we let them. Can I just note that not everyone who goes to Dr. Toth has CT, but yes, most due. I know this because we came back negative (both of us) after heavy biaxin in 2008. At Dr. Toth's. His lab. So no, not everyone is positive. But we have a serious epidemic in this country of CT, and it is constantly perpetuated by the fact that people test negative by common testing and think all is well. So frustrating! And then if you do come back positive, the idea that one pill will take care of it when we know that it goes through various life cycles and that pill can never get the rest. So frustrating! I specifically requested no biaxin due to my suspected immunity. Dr. Toth already planned a different course for us. We would take two pills each day-one Ripamphin and one Zithromax. We would take them each a month at breakfast time, beginning 24 hrs after the IV is removed.
Okay, onto my tubes. Yes they were blocked. Dr. Toth reiterated his test was not as sensitive as the way Dr. Hilgers does it and all he knows is with even great pressure the dye would not go through. He said that when I had the miscarriages, the bacteria grows at faster rate than the baby with my immune system suppresses and that's how our babies die. He doesn't know if my tubes have scar tissue blocking them or they are merely swollen. If they are swollen shut from infection, the antibiotics can result in them reopening on their own. Smart girl, E! I had no idea! As a result, the plan is to wait one month (not one cycle) and have my local ob/gyn repeat the hsg. Prior to this we will have no intercourse because we will not want to chance any infection remains to reblock the tubes or further damage. We will be sure to have the doc view on the film if dye goes through. If it's blocked, we need to know if the dye goes only half way through and stops? If so, almost impossible to open and if so still much higher chance of ectopic. Now, if the dye gets stopped at the end, or only a little comes out, Dr. Toth said that is much easier to repair. Dr. Toth does not do surgery to repair tubes, and trusts that Dr. Hilgers to do the procedure if necessary, bringing on board appropriate abx to ensure he does not spread any possible remaining infection. Since my tubes were opened easily by Dr. Hilgers in June 2012 with the dye and open as recently as Dec 2012 when I was pregnant most recently, of course we hope they are not beyond repair. Now, we know that Dr. Hilgers is a wonderful surgeon at tube repair, so that will factor in to our decision of if we operate, etc. I would love to hear from you if you've had a tubal repair surgery with Dr. Hilgers. I am glad we can retest so soon. We certainly don't want to put off a surgery when we can do it this insurance year. Let's just say we will have no problem saying we paid over 7% AGI in medical expenses. For anyone who has claimed that, I would love to hear from you what kinds of records I should keep and questions I should be asking.
If we do operate on the tubes, we will have to wait the amount of time required to allow everything to heal (maybe 3-4 months) to ttc. Normally Dr. Toth says 3-4 months post treatment is a good amount of time to wait to ttc to allow the immune system to calm down. Not us. If my tubes are open in a month, he wants us to ttc right away if that is our ultimate intention. Dr. Toth also reiterated what we were thinking, if we have another loss, its the end of the road for us. No questions.
Now if we do get pregnant, he will likely be changing my IV from Clindamyacin to something else. I have had FIVE-ten day IVs of Clindamyacin (4 for pregnancies, 1 for treatment just now) and 2 IV's of Clindamyacin during my two full term deliveries. Yes, you read that right. That means I have moved beyond the norm for Dr. Toth even and into unchartered territory. He thought, he scratched his head, he talked out loud, he told me to remind him. Dr. Toth kept repeating he would not drop me and we would work through all of this. I did, however, push him a bit about the IV to think about it now because I have been known to get pregnant the first cycle trying. Since Dr. Toth has recommended in the past to get the IV as soon as my hcg doubles, that is a fast turnaround. Even with the local infusion company on board, a new script would slow things down, and once they receive it, they usually need a few days to prep (longer if the weekend). He mentioned rice something or Cleocin. The others tend to burn veins. Then I would continue an oral regime during pregnancy as I did with Anthony (that wasn't in place when I was pregnant with Charlie) of 10 days on, two months off. With another IV upon delivery, I assume, though it wasn't discussed.
I did ask about concern with me being on hcg. Dr. Toth said even though it suppressed the immune system, it was mild and he wasn't concerned. I FORGOT TO ASK HIM RE LDN. I also told him we didn't really want to ttc if Dr. Toth had major concerns it would put us right back here. Only way to stay 100% was to avoid intercourse always (or use condoms) and not tic. If we feel so much better after treatment and never want to go back there to those symptoms, that was our best bet. But there were good signs, like how healthy our boys were after just biaxin and how dh's prostate didn't look any worse than it did five years ago. Sure, there were infection signs, but in his eyes I am young (35) and the end of the road was only clear cut if a) the tubes are blocked in a way that is difficult to repair and not likely successful or b) we had one more miscarriage. We agreed. Time will tell. So another question, for those of you Catholics that did treatment, did you limit intercourse? Did you avoid except ttc? Did you use perforated condoms? Or did you return to sharing infection if any remained in each of you? No judgement, just contemplating.
So that's it for next steps. We tested for more bacteria that will be back in 2-3 more weeks, but CT was the big one. If I add in the Dr. Hilgers the timeline looks like this---
Fri:
- Dh gets demoral, 2 prostate injections, 2 seminal vesicle injections
- I get double uterine washes
- We both change IV bags (every other day)
- remind them to send copy of records to local ob/gyn and Dr. Hilgers
- I get last uterine wash
- They teach us how to change bags and send us home with another.
- We head to the airport and get to see the boys again!
- We change the bags
- Go to work with IVs.
- remove IVs, ship to NY the pumps
- make appt for local ob/gyn to check my tubes
- start orals for 30 days
- start my period-be sure to chart with care and note if my TEBB is gone, etc
- maybe peak plus 7 draw
Sept. 25:
- last day of orals
- have local ob check my tubes and fax results to Dr. Hilgers (no intercourse since prior to treatment
- cycle review-dr toth says my prog and estrogen may be good on their own as result of treatment and hcg may not even be necessary.
- see if I can get on all my meds and ttc if tubes open (mid Oct). This would be the first time we would have green light to have any intercourse. Dr. Toth did say I may not even need hcg anymore after treatment. However, given that it won't hurt, he suggests we don't alter since we are trying to get pregnant right away.
- Dr. Toth may want me on pre peak orals, check
- if tubes not open, have Dr. Hilgers comment on surgery-if and when, ensure he will use abx to control possible infection.
- So if all went perfectly, and according to Hilgers stats we got pregnant in first three cycles as our history supports, should we carry to term we would be looking at a mid July, mid Aug or mid Sept (2014) due date. Is that getting ahead of myself, absolutely. Just stating best case scenario.
Questions for Dr. Toth:
- Will my next cycle be delayed due to D&C that occurred around ovulation and treatment in general? Some girls may be reading this that can chime in on their experience-please!!!
- Confirm wait 1 month (30 days) not 1 cycle to retest tubes.
- If we test positive for something else, will that alter our orals?
- If tubes are open and we try in what would be Oct, do we take any pre peak orals?
- What about LDN? Any concerns about use when ttc? Dr. H was going to add it in.
Dr. Toth's retirement plans:
Dr. Toth's retirement is not like what you and I would consider retirement. He is merely scaling back and will be only 10 days living in NY each month, and at least two weeks every month in FL. He mentioned opening a second site in FL and neither dh or I thought he was kidding.
Okay, I thought I would get to our fun stuff today, but I will just keep it brief (for me). I took us down to lower manhattan for a wall street insiders tour (dh is a CPA; i find it interesting as well). except in my hurry today I didn't realize the tour wasn't daily, so i accidentally booked it for tomorrow (a demora.l day). Oops! That caused us to unnecessary rush down to lower manhattan and miss St. Patrick's again! At least it won't start until the it should be out of his system. It was pouring and we stopped at a coffee place and regrouped. Lower manhattan has these great signs with all the attractions, so we ended up discovering a treasure we wouldn't have found otherwise: the Museum of Jewish Heri.tage. Dr. Toth's is near museum mile, but dh and I are more into history than art or natural history which was the focus of those. Even the Jewish museum on the mile was more artifacts and art focused. So we were thrilled to find this gem for $12 each, not just because of the Jewish roots of our Catholic faith, but for my own personal Jewish roots. My mother's mother (yes, that means me too) was jewish. Though sadly she knew nothing of her faith. Her parent didn't pass it down for fear of ridicule. They came over from Poland/Russia area to start a new life. My grandmother married a Catholic and the rest was history. :) The museum was great, as was the free ferry ride to S.taten island passing the statue of lib.erty. We grabbed an appetizer and tried a peach beer at a festive local bar with live music and headed home exhausted I am bummed we missed St. Patrick's, but it looks like we will head that direction again tomorrow!
KEEP THE QUESTIONS COMING. I PLAN TO ANSWER THEM SHORTLY
8.21.2013
IV Day 4 and 5
IV Day 4 (Tuesday)
This day I actually slept in until 9:30am NY time which is unheard of for me, even when adjusting to our local time. We through ourselves together and I went for my 1 wash while dh read across the street in Central Park. We took our books everywhere, there was lots of down time on subways etc and we loved just being outside. My treatment was uneventful except that Dr. Toth thought he saw CT on both of our slides. I say thought because he has to look at the slides several times for over an hr each, and then someone else confirms what he sees. So it can be a long process, but there is no "growing out" of a culture like I originally thought. Dr. Toth planned to look at it again the next day with fresh eyes. We left that day with letters from the office so we could do more sight seeing and avoid scanners. We took the train to lower Manhattan hoping to see the 9/11 memorial. We knew we needed advance tickets and didn't have any, but it worked out. We got tickets for an hour from then, I grabbed some cheap sunglasses from a street vendor, and we had a really good meal for cheap ($7 chicken sandwich with roasted red peppers and chipotle mayo-yum!). What to say about the memorial? I won't use the right words to do it justice. It was beautiful, meaningful, unitive experience. I felt somber and yet very peaceful there. If you don't go with a tour, be sure to talk to someone who works there. There was a ton of updates since the pamphlet had been produced. Tower 1 was now finished and replaced the twin towers. So much symbolism there and in every single detail of the memorial. I especially loved the story of the one surviving tree. And a new thing that just began, volunteers put white roses in the name of anyone whose birthday it would have been. They wanted to remind people to remain reverent and that this was basically a cemetery. It was all very moving.
Prior to that, our subway experiences were all fine. Even positive. This one though was very very crowded and hot. Yuck. But following that experience we had one where the a/c was just blasting cold air and was such a welcome change. I learned a I really needed a more appropriate size purse with me. Carrying dh's book meant I wasn't always zipped up and that is really just an invitation. A girl my age brought to my attention she could see my wallet and I was appreciative. This was one of our hotter days, approaching 88 degrees. The IV was more uncomfortable on the hotter days, just because you are basically wrapped in saran wrap for half your arm, but mostly the weather was so mild while we were here we were really spoiled (76-83 most days). Dh and I did NOT wear long sleeves like most reported. I had a light jacket I could thrown on or over my arm whenever, but it just wasn't a big deal. To date, no one asked. I am sure a few wondered, but we weren't looked at like lepers or anything. (note, someone asked on our last day, but she assumed it was a tattoo covered up, which makes total sense given how the bandage looks; in all my time with IVs, it is crazy rare that someone asks, but when they do I say I have an infection and assure them it's not contagious, I just need 10 days of antibiotics, but there is no other need for me to be in the hospital; for those that know an infection causes our miscarriages, some ask what kind of infection is it when they know us well. I say it's a form of mycoplasma or "ureaplasma urealycticum" and shrug. That is the truth, or at least it was, and you better believe no one is going to go home and google that one. Honestly, I could care less if its that important for them to know).
IV day 5 (Wednesday)
Finally up to real time! Today was my D&C and dh's first seminal vesicle injections. We could not eat or drink after 12am because we were both going to be given Demora.l. We had previous discussions about whether to be on it at the same time and decided it would be alright. Our appointment was at 9am, so this time we were told to arrive 30 min prior. I don't think I mentioned previously that every other day our IV bags were changed. This was done so quickly and effortlessly by Dawn, Dr. Toth's nurse, that several times I didn't even notice her doing it. While caring for the IV was not a big deal at home, there were several times with my previous IVs at home that I would forget to restart the pump after changing my bag or batteries. This would add time onto an already long stint, so it was nice to hand over these duties and forget about it. Also, the pump with Dr. Toth never beeped due to being kinked. It had to do with how she wrapped it and the tubing Dawn used. At home, I often worked with the pump on and would be embarrassed by it going off due to a kink. The only time I thought it kinked, it was our apt fridge beeping for being left open too long-so funny! So no beeps to date.
Anyway, we arrived at Dr. Toth's and were immediately swept into our separate rooms. My D&C wasn't full (just minor scraping of the cervix to expose infection to the wash). I have trouble with anesthesia and narcotics, often vomiting. I let them know and they weren't concerned. They were already giving me a valium type substance that blocked nausea receptors. It was really effective and I only had two slight waves of nausea. I asked Dr. Toth if he had time to relook at the slides and he said yes, they both were positive for Chlamy.dia. They put the demora.l in my IV along with the other med and I told them immediately when I felt it. I knew it was in me because the ceiling was moving :) I was awake and aware that Dr. Toth was doing the scraping, and I felt it though it didn't really hurt. The medicine worked because I didn't care that I was awake. And it was never mean to put me out, just basically really sleeping and peaceful, so I wasn't panicked or anything. I asked Dr. Toth to test the pressure in my tubes earlier in the week and he said he would during the procedure. He said he would not open them if they were closed though because he no longer does that. That info came through Dawn and I never really asked why. Anyway, I remember asking about the tube pressure and Dr. Toth told me both were closed (dang infection!). I wanted to talk next steps and he told me we would talk tomorrow because I wouldn't remember anyway. He was probably right. It's one of those things where you think you feel fine, but you are really kind of slow and out of it. After the D&C, I had my two washes. I think I slept in and out for the first one. I believe it was after the first that my dh joined me.
He found the Demora.l to be effective, and the shot didn't hurt at all. However, the full feeling that followed the shot was to the point of pain. He quickly left my room for a place to lay down and stayed there an hr and 15 min moaning in the next room. So hard to hear him not feeling well. To his credit, he said he is glad we came to NY and are doing this. And he still says the swab is the worst of all of it.
After we were both ready to go, Dr. Toth's staff told us they could call us a cab or we could go across the street cattycorner and grab a bite for 30 minutes. We chose to grab a bite to eat. After that we checked in with them and were given the all clear to walk the less than a mile back to the apt. I came back and slept two hrs since my goofiness chose to wake at 6am NY time-boo! Dh rested in the bedroom with the tv and I was glad we had a separate sleeping/tv quarters.
We caught a movie at 5pm at the 86th street theatre (the Butler-very good) and felt fine. We grabbed pizza and headed back to the apt for an early night. I really can't believe how good we feel. I only have slight spotting. The meds have definitely warn off, but not tylen.ol or anything needed. I would definitely still keep the day low key due to the demor.al. and the fact that you really do think you are fine on it when you really aren't 100%. I am just not interested in walking around the city that vulnerable.
That's it for today. Tomorrow I just have one wash. Friday, I have two and dh has Demora.l again with SV injections again. Saturday I have my last wash and we are done!
Our plan tomorrow is St. Patrick's Cathedral, Wall Street, maybe the Staten Island Ferry...good stuff!
This day I actually slept in until 9:30am NY time which is unheard of for me, even when adjusting to our local time. We through ourselves together and I went for my 1 wash while dh read across the street in Central Park. We took our books everywhere, there was lots of down time on subways etc and we loved just being outside. My treatment was uneventful except that Dr. Toth thought he saw CT on both of our slides. I say thought because he has to look at the slides several times for over an hr each, and then someone else confirms what he sees. So it can be a long process, but there is no "growing out" of a culture like I originally thought. Dr. Toth planned to look at it again the next day with fresh eyes. We left that day with letters from the office so we could do more sight seeing and avoid scanners. We took the train to lower Manhattan hoping to see the 9/11 memorial. We knew we needed advance tickets and didn't have any, but it worked out. We got tickets for an hour from then, I grabbed some cheap sunglasses from a street vendor, and we had a really good meal for cheap ($7 chicken sandwich with roasted red peppers and chipotle mayo-yum!). What to say about the memorial? I won't use the right words to do it justice. It was beautiful, meaningful, unitive experience. I felt somber and yet very peaceful there. If you don't go with a tour, be sure to talk to someone who works there. There was a ton of updates since the pamphlet had been produced. Tower 1 was now finished and replaced the twin towers. So much symbolism there and in every single detail of the memorial. I especially loved the story of the one surviving tree. And a new thing that just began, volunteers put white roses in the name of anyone whose birthday it would have been. They wanted to remind people to remain reverent and that this was basically a cemetery. It was all very moving.
Prior to that, our subway experiences were all fine. Even positive. This one though was very very crowded and hot. Yuck. But following that experience we had one where the a/c was just blasting cold air and was such a welcome change. I learned a I really needed a more appropriate size purse with me. Carrying dh's book meant I wasn't always zipped up and that is really just an invitation. A girl my age brought to my attention she could see my wallet and I was appreciative. This was one of our hotter days, approaching 88 degrees. The IV was more uncomfortable on the hotter days, just because you are basically wrapped in saran wrap for half your arm, but mostly the weather was so mild while we were here we were really spoiled (76-83 most days). Dh and I did NOT wear long sleeves like most reported. I had a light jacket I could thrown on or over my arm whenever, but it just wasn't a big deal. To date, no one asked. I am sure a few wondered, but we weren't looked at like lepers or anything. (note, someone asked on our last day, but she assumed it was a tattoo covered up, which makes total sense given how the bandage looks; in all my time with IVs, it is crazy rare that someone asks, but when they do I say I have an infection and assure them it's not contagious, I just need 10 days of antibiotics, but there is no other need for me to be in the hospital; for those that know an infection causes our miscarriages, some ask what kind of infection is it when they know us well. I say it's a form of mycoplasma or "ureaplasma urealycticum" and shrug. That is the truth, or at least it was, and you better believe no one is going to go home and google that one. Honestly, I could care less if its that important for them to know).
That evening we headed to a Yankees
game in Bronx. They won! Very festive subway home. Since there was a huge line after the game to refill our metro card, we offered to pay someone more to swipe theirs twice. Lesson learned: if they have bought an unlimited pass, they can't swipe twice in ten minute. One girl got stuck, unable to go through after letting me through with her card. A very nice gentlemen stepped in with his card that wasn't prepaid and got her and my dh through. The subway was festive on the way home after a win. I love all the languages being spoken everywhere you look. And constant acts of kindness, giving up seats on the subway for someone else, etc. Such a great experience. And no one ever minded giving us directions. We were often wanting to confirm we were catching the training going the correct direction. No one steered us wrong :) As far as IV and treatment go, I had the slightest cramping this day and a tinge of blood when wiping twice. No big deal. We truly were not hindered in any way.
IV day 5 (Wednesday)
Finally up to real time! Today was my D&C and dh's first seminal vesicle injections. We could not eat or drink after 12am because we were both going to be given Demora.l. We had previous discussions about whether to be on it at the same time and decided it would be alright. Our appointment was at 9am, so this time we were told to arrive 30 min prior. I don't think I mentioned previously that every other day our IV bags were changed. This was done so quickly and effortlessly by Dawn, Dr. Toth's nurse, that several times I didn't even notice her doing it. While caring for the IV was not a big deal at home, there were several times with my previous IVs at home that I would forget to restart the pump after changing my bag or batteries. This would add time onto an already long stint, so it was nice to hand over these duties and forget about it. Also, the pump with Dr. Toth never beeped due to being kinked. It had to do with how she wrapped it and the tubing Dawn used. At home, I often worked with the pump on and would be embarrassed by it going off due to a kink. The only time I thought it kinked, it was our apt fridge beeping for being left open too long-so funny! So no beeps to date.
Anyway, we arrived at Dr. Toth's and were immediately swept into our separate rooms. My D&C wasn't full (just minor scraping of the cervix to expose infection to the wash). I have trouble with anesthesia and narcotics, often vomiting. I let them know and they weren't concerned. They were already giving me a valium type substance that blocked nausea receptors. It was really effective and I only had two slight waves of nausea. I asked Dr. Toth if he had time to relook at the slides and he said yes, they both were positive for Chlamy.dia. They put the demora.l in my IV along with the other med and I told them immediately when I felt it. I knew it was in me because the ceiling was moving :) I was awake and aware that Dr. Toth was doing the scraping, and I felt it though it didn't really hurt. The medicine worked because I didn't care that I was awake. And it was never mean to put me out, just basically really sleeping and peaceful, so I wasn't panicked or anything. I asked Dr. Toth to test the pressure in my tubes earlier in the week and he said he would during the procedure. He said he would not open them if they were closed though because he no longer does that. That info came through Dawn and I never really asked why. Anyway, I remember asking about the tube pressure and Dr. Toth told me both were closed (dang infection!). I wanted to talk next steps and he told me we would talk tomorrow because I wouldn't remember anyway. He was probably right. It's one of those things where you think you feel fine, but you are really kind of slow and out of it. After the D&C, I had my two washes. I think I slept in and out for the first one. I believe it was after the first that my dh joined me.
He found the Demora.l to be effective, and the shot didn't hurt at all. However, the full feeling that followed the shot was to the point of pain. He quickly left my room for a place to lay down and stayed there an hr and 15 min moaning in the next room. So hard to hear him not feeling well. To his credit, he said he is glad we came to NY and are doing this. And he still says the swab is the worst of all of it.
After we were both ready to go, Dr. Toth's staff told us they could call us a cab or we could go across the street cattycorner and grab a bite for 30 minutes. We chose to grab a bite to eat. After that we checked in with them and were given the all clear to walk the less than a mile back to the apt. I came back and slept two hrs since my goofiness chose to wake at 6am NY time-boo! Dh rested in the bedroom with the tv and I was glad we had a separate sleeping/tv quarters.
We caught a movie at 5pm at the 86th street theatre (the Butler-very good) and felt fine. We grabbed pizza and headed back to the apt for an early night. I really can't believe how good we feel. I only have slight spotting. The meds have definitely warn off, but not tylen.ol or anything needed. I would definitely still keep the day low key due to the demor.al. and the fact that you really do think you are fine on it when you really aren't 100%. I am just not interested in walking around the city that vulnerable.
That's it for today. Tomorrow I just have one wash. Friday, I have two and dh has Demora.l again with SV injections again. Saturday I have my last wash and we are done!
Our plan tomorrow is St. Patrick's Cathedral, Wall Street, maybe the Staten Island Ferry...good stuff!
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