So, I left off where Meriam told me to come on down to Omaha for prep. I really appreciated the anonymous blogger who assured me it likely wasn't for nothing. And it wasn't. The irony is that my period start Wed at 10:30pm. I don't know about y'all, but I almost always start first thing in the morning. But by starting when I did, surgery actually became CD3. How about that?! Not bad for scheduling a month out and all the stress, etc when the goal was 4-8. Not bad at all. God has a funny sense of humor :)
Omaha was good. We stayed at Hawthorne Suites about 2 min from ppvi. It was only $64 for a king suite and it included a kitchen and hot breakfast. It was a great recommendation off the discussion board. It was great to do my preop at Creighton with Nina. Nina. Who last year recognized me from six years prior. She is kind of amazing. It was good to see a familiar face. Then was the ultrasound with Rachel. She was pretty new last year when I went. Then I got to do my favorite part, say a big thank you to every nurse I see. Teresa is pregnant with child number 8! And Stefani is just as young and adorable as she sounds on the phone. Meeting Dr. Hilger's son Steve went well. And we were all set for the next day. We found a great little cafe and cupcake place not far aways, Jones Cupcakes. Yum!
We were at the hospital bright and early at 5:45am. I did get a little teary after the nurse put the IV in, thinking this is likely my last surgery and hopeful for the outcome. The last thing I remember is a nurse asking me if I wanted a rosary and slipping it into my hands, telling me it was blessed by the pope! I love Dr. H!
I woke up and things were mostly good. A surgery is never easy, but they handle my nausea with anesthesia well and know better than to even suggest a narcotic. I had less shoulder pain with the gas, though there was definitely some. They seemed a little short staffed and let me sleep until 3pm, which seems unheard of. I am used to getting kicked out when I can barely stand. I thought I could go home late that same day, but I didn't really factor in that a late check out isn't really at all that late so we extended another day and went home Saturday. I almost didn't have a choice, there was some rodeo in town, but someone expected cancelled.
My mom is so cute, she knew that my follow up with Dr. H wasn't until Oct. 10 and that I needed all the info before then if we were to try same cycle as Dr. Toth wanted. She totally recorded verbatim what Dr. Hilgers said. He agreed we could try this cycle and confirmed my tubes were OPEN! He didn't have to do a thing. Great news, of course!
He reviewed my meds when he got back to the office, and advised me for this cycle. He wants me off the turmeric, fyi, and he did say I needed to do the dreaded inflammation diet. Everything inside the uterus where I had the washes looked great. Unfortunately everything outside the uterus was very inflamed.
Today is Sunday, I am off the pain meds and doing more around the house. I get tired easily, but that is okay. I definitely feel I can go back to work tomorrow. I am not 100% today, but good enough. The not lifting for two weeks is definitely going to be the challenge. Thank you all for your prayers! ***Update-while the gas in my shoulders isn't as much of an issue as it was before, it seems to come when I am sitting or laying down making rest quite difficult at night or during the day. This seems more drug out then I remember and adds to an overall crummy feeling. Pain meds don't help for this, I think the only thing that really helps is being up and around. Also, the anesthesiologist took a little knick out of the roof of my mouth, so eating is painful unless its soft foods. I might work a half day today (Monday) from home. Feeling pretty puny.
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 blocked tubes. Show all posts
Showing posts with label blocked tubes. Show all posts
9.29.2013
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.
8.28.2013
IV Day 10 and Beyond, HSG questions, and news re Dr. Hilgers -updated
I don't think I mentioned this Monday, but I definitely did start my period yesterday, so actually Monday was probably CD1. Also Monday, I had called and left a message first thing with Dr. Hilgers office. I wanted them to hear from me exactly what we had done in NY, as well as the next steps layed out for us. Also, it occurred to me that though Dr Toth had said an HSG could be done anywhere in 30 days, I realized Dr. Hilgers may think differently. First of all, I know Dr Hilgers gets more info from his selective HSG. Secondly, I know Dr. Hilgers unblocked my tubes during the procedure where he was checking the tubes. I didn't want to turn this into two procedures when it only needed to be one. Third, I didn't know if I needed antibiotics on board just for checking. Finally, I wanted to talk to Dr. Hilgers about the need for me to do a cycle review this cycle and have all my meds back on board starting next cycle in case my tubes were unblocked.
On Tuesday morning, I took both my husband's and my IV out yesterday without incident. I just removed all the bandages, covered the spot with an alcohol pad and gauze and pulled out the tiny spaghetti string. It was maybe 10 inches or so. it didn't hurt, and it didn't really bleed at all. I packed up the pumps in bubble wrap and sent it insured to Dr. Toth's office right away. Yesterday was antibiotic free after that. My stomach is not hurting, I continue to have looser stools, but they haven't gotten worse at all.
Yesterday I also talked to Dr. Hilger's nurse, Teresa, and I am glad I did. First of all, she was very interested to hear about NY, as well as Dr. Toth's retirement plans. She had already received a copy of the D&C and HSG results. She listened to everything I said. If I understand right, she did think Dr. Hilgers would like to do an selective HSG, but potentially during a lap to get a better look. I don't know how I feel about that for a few reasons, mostly because I don't know if the risks outweigh the benefits. Once the procedure becomes surgery, I have great fear about spreading any potential remaining infection. Also, who knows when I can get in as we all know his surgery schedule is crazy and timing with this is key. And it just makes the logistics more difficult. I could be wrong, but I thought I could drive to Omaha, have the HSG and drive home. If it turns out I am under anesthesia, I might have to coordinate to bring my mom or someone else with. Just more hassle. If its worth it, fine. But the idea that we might undo $15k worth of treatment with something that may not be necessary...well I think I just stopped breathing for a second there. This is sort of our one chance at this full treatment per dh, you know? Teresa was going to check the surgery schedule and then talk to Dr. Hilgers either by writing it up and getting a written response or at their weekly meeting on Monday. She asked me which I preferred and we both just agreed that this is time sensitive. Obviously, I am going to wait and see what Dr. Hilgers recommends, but I do think he is new to this controlling infection during surgery. It seems there is a good chance it is inflammation and they will open without us even checking. I mean, Dr. Hilgers was able to open them last time with a wire during the selective HSG. That would indicate it probably wasn't scar tissue last time. If its the same, they may open on their own. We could potentially try without even checking them. However, there is risk in that. We are as clean as we will be. We are abstaining. Once we start ttc, we will start sharing any bugs we have that may have been left in either of us. We don't want to "waste" ttc and potentially spreading infection for three months with blocked tubes. So that makes me think we should check them as Dr. Toth suggested. He said anyone could do the procedure and I don't think he was worried about infection spreading for the typical checking of tubes. However, I could be wrong. I don't know much about the procedure and I thought a former patient said the Dr. Toth should be the one to unblock tubes because he can minimize infection. However, Dr. Toth told me he doesn't unblock tubes anymore. I don't know. So then, the question is do i have a local person do an HSG, Dr. Hilgers do an HSG or Dr. Hilgers do a lap HSG? Again, I am open to hearing people's thoughts because I don't know enough about the differences. It seems maybe if Dr. Hilgers does the lap HSG, then he can unblock with a wire whereas he can't unblock them if he is just testing them? However, if you can only unblock the tubes that are closed due to inflammation, that seems to me they will already be opened if that is the case so that isn't a big threat? If they are really blocked due to scar tissue, could that be done during the same lap? I assume not, but I don't really know. If they are blocked and Dr. Hilgers finds out through HSG that doesn't include a lap, will he have teh full info he needs to determine if it is a minor versus major repair. If it's minor surgery repair, obviously I will be facing the surgery decision regardless if we avoided the HSG lap. So lots of unknowns about the procedure and risk. I will wait for Dr. Hilgers input, but in the meantime I would like to hear from those of you with experience.
Teresa also had some helpful recommendations for immune support.
This morning we started the oral antibiotics. We are on once a day 300 mg and 500 mg Zithromax. The is the one that can tint your sweat, tears, urine etc red so that would be crazy. It also might upset your stomach, but is best taken on an empty stomach. I took it at 7, felt nauseated around 8:45am despite breakfast by then, and then felt better around 10:30am. That makes me think it was the medicine, but we'll see. Charlie said he feels sick to his stomach after breakfast, so it could be a bug or a something we both ate.
The news I wanted to share about Dr. Hilgers that I am excited about is that both his son and daughter are ob/gyns and doing a fellowship with him. How cool is that?! I wish Dr. Toth would work more toward training others, but I am so grateful to Dr. Hilgers commitment to continue his life's work!
On Tuesday morning, I took both my husband's and my IV out yesterday without incident. I just removed all the bandages, covered the spot with an alcohol pad and gauze and pulled out the tiny spaghetti string. It was maybe 10 inches or so. it didn't hurt, and it didn't really bleed at all. I packed up the pumps in bubble wrap and sent it insured to Dr. Toth's office right away. Yesterday was antibiotic free after that. My stomach is not hurting, I continue to have looser stools, but they haven't gotten worse at all.
Yesterday I also talked to Dr. Hilger's nurse, Teresa, and I am glad I did. First of all, she was very interested to hear about NY, as well as Dr. Toth's retirement plans. She had already received a copy of the D&C and HSG results. She listened to everything I said. If I understand right, she did think Dr. Hilgers would like to do an selective HSG, but potentially during a lap to get a better look. I don't know how I feel about that for a few reasons, mostly because I don't know if the risks outweigh the benefits. Once the procedure becomes surgery, I have great fear about spreading any potential remaining infection. Also, who knows when I can get in as we all know his surgery schedule is crazy and timing with this is key. And it just makes the logistics more difficult. I could be wrong, but I thought I could drive to Omaha, have the HSG and drive home. If it turns out I am under anesthesia, I might have to coordinate to bring my mom or someone else with. Just more hassle. If its worth it, fine. But the idea that we might undo $15k worth of treatment with something that may not be necessary...well I think I just stopped breathing for a second there. This is sort of our one chance at this full treatment per dh, you know? Teresa was going to check the surgery schedule and then talk to Dr. Hilgers either by writing it up and getting a written response or at their weekly meeting on Monday. She asked me which I preferred and we both just agreed that this is time sensitive. Obviously, I am going to wait and see what Dr. Hilgers recommends, but I do think he is new to this controlling infection during surgery. It seems there is a good chance it is inflammation and they will open without us even checking. I mean, Dr. Hilgers was able to open them last time with a wire during the selective HSG. That would indicate it probably wasn't scar tissue last time. If its the same, they may open on their own. We could potentially try without even checking them. However, there is risk in that. We are as clean as we will be. We are abstaining. Once we start ttc, we will start sharing any bugs we have that may have been left in either of us. We don't want to "waste" ttc and potentially spreading infection for three months with blocked tubes. So that makes me think we should check them as Dr. Toth suggested. He said anyone could do the procedure and I don't think he was worried about infection spreading for the typical checking of tubes. However, I could be wrong. I don't know much about the procedure and I thought a former patient said the Dr. Toth should be the one to unblock tubes because he can minimize infection. However, Dr. Toth told me he doesn't unblock tubes anymore. I don't know. So then, the question is do i have a local person do an HSG, Dr. Hilgers do an HSG or Dr. Hilgers do a lap HSG? Again, I am open to hearing people's thoughts because I don't know enough about the differences. It seems maybe if Dr. Hilgers does the lap HSG, then he can unblock with a wire whereas he can't unblock them if he is just testing them? However, if you can only unblock the tubes that are closed due to inflammation, that seems to me they will already be opened if that is the case so that isn't a big threat? If they are really blocked due to scar tissue, could that be done during the same lap? I assume not, but I don't really know. If they are blocked and Dr. Hilgers finds out through HSG that doesn't include a lap, will he have teh full info he needs to determine if it is a minor versus major repair. If it's minor surgery repair, obviously I will be facing the surgery decision regardless if we avoided the HSG lap. So lots of unknowns about the procedure and risk. I will wait for Dr. Hilgers input, but in the meantime I would like to hear from those of you with experience.
Teresa also had some helpful recommendations for immune support.
- D3 (start at 4000 iu a day for a month and then go to 2000ius)
- The dose of Tumeric is 1000mg twice a day-turmeric is a powerful anti inflammatory-Dr. HIlgers later took me off this saying there is preliminary evidence of birth defects and he didn't want to chance it.
- a 12 strain probiotic -The probiotic is called thera biotic complete from a company called Prothera inc. You need a doctor's code to order it.
- a concentrated antioxidant drink you take 1 fl oz daily, contains acai, blueberry mango seed...I need to refer back to my notes but you can buy it at whole foods or through other places. I found this on amazon and it looks the exact same. Note, price is for 3 bottles, each with 32 servings.
http://www.amazon.com/SUPERFRUIT-ELIXIR-Concentrated-Liquid-Antioxidant/dp/B0097XGLE0/ref=sr_1_1?s=hpc&ie=UTF8&qid=1377710480&sr=1-1&keywords=concentrated+antioxidant+drink
This morning we started the oral antibiotics. We are on once a day 300 mg and 500 mg Zithromax. The is the one that can tint your sweat, tears, urine etc red so that would be crazy. It also might upset your stomach, but is best taken on an empty stomach. I took it at 7, felt nauseated around 8:45am despite breakfast by then, and then felt better around 10:30am. That makes me think it was the medicine, but we'll see. Charlie said he feels sick to his stomach after breakfast, so it could be a bug or a something we both ate.
The news I wanted to share about Dr. Hilgers that I am excited about is that both his son and daughter are ob/gyns and doing a fellowship with him. How cool is that?! I wish Dr. Toth would work more toward training others, but I am so grateful to Dr. Hilgers commitment to continue his life's work!
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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