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.
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 hsg. Show all posts
Showing posts with label hsg. Show all posts
9.18.2013
6.29.2012
My Time in Omaha-Peeing My Pants, Poop on the Floor and, eventually, the Results
I will try to handle this in sub topics for those of you that don't want/need every detail...
Regarding the Cost...I was happy I was sent a run down of the charges from PPVI ahead of time with my appts and initial paperwork. I do not like surprises. We knew we were fortunate to have in network coverage, so we were going regardless of cost, but I didn't think it would be quite as much as it was and so learning this allowed me to break the news to Craig before the bills started rolling in. Our coverage isn't as good as the first time I went down (I used to have 90% coverage in network after a $500 deductible with a $1500 out of pocket max-last time I had no problem meeting this, but I had the ultrasound series and the hormone series done as well). This time we have 80% coverage and a $3k out of pocket maximum. We have $1700 left in our flex account (so we can use that medical expense money pre taxed) and I thought that would close to cover it. Haha. Not exactly. The bill from Hilgers that showed my 20% said $880 if they lasered endo. But the bill from Creighton (I had to call specifically to get these numbers) were astronomical. For example, one procedure, the hysteroscopy I think, was $11k. That may not have been my portion, but you do the math. That was one thing of several. So...we skipped the details and dear Lynn cut right to the chase. I had barely touched my deductible. The $3k is on top of that. I was definitely hitting the maximum. So my question to you all is...what else should I be seeking to get done this year?! Insert husband's small heart attack. Now, fyi, Creighton gives you 10% off of what you pay within 5 day, so there you go. Where else are you gonna make 10% these days? I know our bills are nothing compared to what you out of network and out of country folks are dealing with, so I won't dwell on this. I will say that out of country, I would do it again. I would. Hands down.
On being there in general...I must say, I wasn't worried about the surgery really. That may seem weird, but I will do my best to explain to you the range of emotions I was going through. I was back. in omaha. With my children. Rewind to 6 years ago, no idea if I would have children. And now I was back. I honestly know that if we can't have more children, we have already been blessed beyond words. So I guess that took some stress and anxiety away. I also just knew this was where I needed to be and I knew how blessed I was to get to be there. We drove just three hours to get there, so I am grateful to be so close. I desperately wanted to go to the celebration they had at PPVI but couldn't. This was my time. To say my thank you's. To introduce my babies. My "reunion" started a little earlier than expected, at my pre op appt for the hospital. Of all things, Nina remembered me, knew I had longer hair, a different last name, knew my story (I had shared it with her last time), remembered that she found my murmur (I have 3!). What a joy to share what has happened since I left Omaha. Her sister who lives 2 hrs away is also now a patient of Hilgers. I have a strong hunch she didn't know about Hilgers until I told her and that is why her sister saw him, but that is just part of my vague memory and I didn't realize it until after I left so that is unconfirmed. I left flying high and kept hearing my mother in the back of my mind telling me to come down off the ceiling. I was flying high and talking fast! I wanted to kiss everyone I encountered there and the tears flowed easily as I drove from Creighton to my pre op ultrasound at Pope Paul VI. I did call my mom and TRIED to pull myself together.
The ultrasound was supposed to be with Jeanine, but it was with the new girl. Young, cute, heart in the right place, knows she has the best job ever, I loved sharing our story with her. Then on to my appt. I wasn't sure who it was with there, and then I saw Dr. H. Yes, I was a little freaked out to be in the same room with him. Seriously. I wasn't sure if my appt was with him or Dr. Kargas (sp?) but it was both. Hilgers was first and he has a doctor from Mexico shadowing him. I told him my mind would be mush with him in the room, but I swear the Holy Spirit took over and I was brave and succinct and articulate like I haven't been in the last 20 months. Thank you, Jesus. It felt so good not to be tongue tied! I laughed at the thickness of my chart and was told it was 2 of 2, haha. I was able to recap my story for him, and even though he knew it in general, it was nice for him to have a succinct summary (yes, me succinct; now you know it was the Holy Spirit!) and you could tell he was thrilled to hear it and have the other doctor hear it as well. I really enjoyed my time in the room. Of course we bonded about how the pill is the cure all for everyone I know, how ob/gyns have defined life conveniently after implantation, frustration with the HHS mandate and how people think pill=healthcare, etc, and how evil and insidious infections are. He told me that 20% of his patients are positive for infections, but 60% respond positively to antibiotics. He thinks there are simply bugs out there we don't know about yet. I mentioned my desire to have the surgically trained Napro docs distinguished in some way on the website. He has felt that way too, and expressed that before, and is working on it (but seriously how long does it take-add a star or something, lol!). He is also working on the phone ap and confessed he received a package to start it recently but had been busy. He gets a pass. The man is crazy busy. I mentioned a little frustration about people not getting the full benefit of Napro when they don't take advantage of mailing in the blood work and he completely agreed that it was a major part of what they need to do their job. Its explained in his text book and he stresses it to everyone he trains-that was new to me. I know it is expensive folks, but it is so necessary to get the full benefit of what he does. He said nice things about how he is always impressed at what a smart group of clients he has so I wanted to pass that on to all of you. When he left, I felt set with the plan we had for the next day. I got to see Dr. Karges as well and tell her my story (Dr. H asked me to). She was wonderful. She relocated her family to Omaha and worked under him a year. When she goes back she is it for Texas and they are lucky to have her. Her time is almost up so Texas, here she comes you lucky dogs!
Surgery Day...What to say? This is the time I began to think about how my dear friend stopped breathing during the meds used to calm her prior to anesthesia-this happened just one week before my surgery. That was my only nervousness and I still knew it was rare and kept it pretty much in check. I took my time to stress with everyone that I get crazy nausea with anesthesia and CANNOT take narcotics. I have learned these things the hard way given I have had 5 eye surgeries, 2 D&Cs, 2 cysts removed, and this was my fourth laporoscopy. Yeah, I guess this is what I do in my spare time! They did all the things that worked well last time PLUS a motion sickness patch behind my ear. Which was great except it did totally dry me out and I could not swallow crackers without chugging a ton of water. They put these like, support hose things on to prevent blood clots, and they also had me wipe down again with those crazy wipes. But I knew I was in good hands and they put up with me desperately wanting my kids in the room even before the IV. I just didn't want the only hr they were there to be dh chasing them in the waiting room. So they came back and all was well. Charlie didn't even notice the IV (he was on the other side), but he has seen me get plenty of blood work. (We did prep him a lot and got pearls of wisdom from him such as "mom, if they give you a shot in your belly button, run!") The kids were actually really good in the room and entertaining and distracting for sure. Then back I went. They didn't tell me they were giving me something to relax until I asked because the room was moving as I switched beds. I am glad b/c if it was what Nan had it would not have relaxed me! Before I knew it, it was over. I had zero stomach pain that day (I guess they numb it up good), but that night the shoulder pain hit hard. First right, then left, then right again. I was told to sit up 45 degrees and use ice packs and that was the only thing that helped. I never did really get too nauseated. I remember women saying they couldn't leave the hospital until they went to the bathroom. I thought that meant a bowel movement, but am glad that was not the case. I have a tiny bladder and peed almost immediately out of recovery (all that IV fluid, I am sure). But a bm, well that finally came tonight-a full 72 hrs post pre surgery enema. And if that is TMI for you, well then you probably are not in the right place :)
Surgery Results...The next day I brough the whole family in for results. Dh knew to take the boys out if I couldn't hear, but again, they were super good which is crazy. They did have each other though, usually all the entertaining they need. And cheerios. Pretty sure we left a few of those crunched everywhere we went. Anyhow...there were some unexpected results. I wish I had details of my last surgery on my blog, but I don't. I knew this time they would likely find endo, but not a ton. The soreness I experienced hadn't been back very long. They found 3 spots and lasered them. They also found a micropolyp (associated with infection and/or inflammation) and a cyst in the cervical canal (which was inflammatory in nature). He found a mini/accessory fallopian tube-crazy right? He said it is common in women with endo. They also found, in general, a lot of inflammation on the wall (they can only treat with abx b/c surgically it would cause too much scar tissue)-do you see a theme here people?! Inflammation can be from endo or infection so not a lot of answers on that one but consistency is clearly my middle name. Hoping the results of the cultures will clarify the culprit. They saw spots from previous lasering, but not a lot of scar tissue, which was good news. Now for the 2 pieces of shocking news (to me at least). First of all, my tubes were blocked. What?! Yes. I got confused on the details because it sounded contradictory, but he couldn't get the dye through at all and they were blocked, but then he did eventually with a different technique. They are open now, yet he couldn't get the wire through? This sounds like Alive in Hope, so if T or anyone has clarification on this, I would appreciate it. But I am sure it is either infection or endo related because that is the theme in my life. And secondly, I have an abnormality that is assosciated with 2nd trimester miscarriages. Its a large septum. I suck at anatomy so he drew a triangle pointed down and then another triangle inside it attached at the top (flat edge). He said the space it is taking up can affect the baby as it tries to grow. It is associated with miscarriages around 16, 18, or 20 weeks. Ladies, can I just tell you how important it is to have a lap-I learned so much! They are not just for folks that suspect endo. I think they are a good idea for anyone with infertility, they are meant to be exploratory in nature and IF is as good a reason as any to have one done IMO. I know it is surgery, and no one wants unnecessary surgery, but exploring is necessary when questions are unanswered. He said that any ob/gyn that worked with me would need to do frequent ultrasounds and keep an eye on my cervix around that point. I think the treatment is a stitch (cerclage-anyone here need one of these?). I have comfort knowing that for whatever reason, it wasn't an issue with my 2 kiddos here (and the miscarriages I had were earlier, with TEBB cycles and good prog so we are still confident they were due to infection) and therefore there is less chance it will be in the future. I seriously can't imagine a 2nd trimester miscarriage. Someone would have to commit me.
On the logistics of being there with children...let's see, one room, 2 adults, 2 young children. Hmm. I don't know how you cosleepers do it, maybe it is because you start them out doing this early, but I don't know if even that would have helped. My kids have never really been a good match to sleep with us. Charlie will literally say, you can go back to your room now (we do some snuggling with him in his bed, but just for a minute). lol. And he is a talker. So anyway, we had Charlie in one bed, dh and I in another and AJ in the pack and play. Since the world series was going on there, and then after that the Olympic swim team trials, there was NO ROOM AT THE INN! Eventually we got a hotel (two, dh had the pleasure of changing hotels with both boys while I was in surgery b/c our hotel didn't have a 3rd night) but our hotel had none of the amenities that would have made it go smoother. Like location. Or a microwave. Or a fridge. Or a hot breakfast. Heck, continental would have been nice. Nada. So I packed. And packed. And packed. I organized. I printed off directions from every which way and researched kid friendly things to do. I packed swimsuits and bouncy balls and a entire thing of toys (heck, they play well with them on their own at home, why not at a hotel?) Let's just say if we could have kept the luggage rack wheely cart thing (why yes, that is the technical name for that), we would have. That was prime entertainment. And the telephone, unplugged. AJ enjoyed spilling powdered coffee creamer on the hotel carpet and then spent the next 24 hrs there sneaking licks of it. Ewwww! Rock star immune system-check. And flushing the toilet was big fun for him, as was unwinding toilet paper. He could open the doors there thanks to the long doorknobs. The schedule went out the window and the naps were all off. Charlie alternated between fake snoring and every possible attempt to engage us in conversation. AJ slept fabulously in pack in play in the pitch black bathroom (we had a handicapped room for the first hotel) when we finally got to town and to bed after a late dinner that next night (my appts ran long with all that talking), but that presented a bit of a problem. Let's just say I wet my pants one night and dh peed in a cup. No lie. Okay, now realize that I needed do an enema pre surgery. What did that look like? Wheeling AJ out of the bathroom asleep. Administering it laying down on the bathroom floor-both 'approved" positions were laying down-on towels of course. Using the bathroom. Showering. Wiping myself down with those nasty antibacterial wipes. Go to get dh to do my back and he is sound asleep. Because what else is there to do in a dark quiet hotel room with all the lights off at 10pm. Something about laying on that floor made me all too aware of how much I probably needed those nasty wipes, but I didn't like how dirty I felt having to use them. Dirty times 100 even post shower. The next hotel we had didn't give us a handicapped room so that was probably the worst sleep ever for me and kids (post surgery), but we all managed and there was plenty to laugh about. (I go to pick dh and kids up after pre op appts and receive this text-"C just pooped on the floor." Um, evidently potty trained for a year doesn't mean we don't regress at a totally foreign place (referred to repeatedly as the Cozy Cone by my Cars loving child, his only previous hotel/motel experience). Shockingly, the kids were not crabby at all despite the crazy schedule. Example-they woke an hour earlier (at 6am), never took a nap in the new hotel, and went to bed about 2 hrs later than normal. We really squeezed in the activities too (arrived Monday pm, Tues 9am-1pm zoo, Tues afternoon all my appts while they napped, Wed one of those bouncy inflatable places before my surgery which was scheduled for noon (yes, I starved. It didn't start until 1:45pm actually!), and we even hit the children's museum after my post op (there were lots of benches and I let dh do the running and lifting). We headed home after that since dh wasn't able to get Friday off (today. My mom came and stayed with me). They were clearly happy to be back in their own beds because C took a 3 hr nap, ate dinner, and went back to bed; AJ had to be woke at 8pm for dinner and was easily put back to bed. All in all, it was a pretty great trip, and like I said, plenty to laugh about when you throw the kids into the mix.
Back home and feeling alright...So that's it. It was plenty of news, as you can imagine, and I am ready for life to be dull again. I am fine with all the diagnoses. As usual, I feel better to know what I am dealing with and attack it head on. I wasn't expecting to get the green light to ttc again so soon, but here it is. Not this cycle (I am on CD 6) BUT NEXT. Again, I just feel like we are plugging our nose and jumping. If we stand around analyzing this too much, we may just stay on the ledge and what fun is that? So here we go again. Stay tuned...But first things first, does anyone know how soon I am allowed to be intimate? The pelvic rest box was checked but it said f/u with doc or X weeks and that number was blank. Obviously my f/u was the next day, I didn't think to ask Dr. H about it, figured it would be in my discharge instructions. Just curious.
Some bad news from friends...Completely changing topics, today has been a funk due to some really bad news I received from 2 dear friends. First of all, my friend Nan underwent her double masectomy last Wed. We are grateful that her scare with anesthesia turned out alright and was reversed quickly, but SCARY! But now, as of today, those lymph nodes they expected to be okay ARE NOT. It has spread. She will be doing radiation. Of which her mom died of (not from cancer, she was cancer free, but the radiation had done bad dammage to her lungs). We are devastated by this news. We were flying so high, the chemo had shrunk that tumor so that it wasn't even recognizable. Back to reality. Nan has cancer and she is still in the fight of her life. Prayers needed. And my dear friend Laura, who only has one brother in his thirties whom she is very close to, lives in town, has three YOUNG kids (oldest is eight)...has mesothelioma. They have no idea how he got this rare cancer from asbestos, which makes it all the more scary (who else was around it? Laura? the parents?). They gave him a month or two (actually his family-he and his wife didn't want to know). They flew him to Boston to the people who specialize in this. He was on the list for surgery. They just did some serious bloodwork and testing and determined he is no longer a candidate. That was the news this Wed, the day of my surgery. He is still in Boston, half the family there, half at home in my state. Then the email today came that he will be in heaven soon and his dad and three kids are desperately trying to make it to Boston to say goodbye. My.heart.is.breaking for this family and their very young children. Please take some time out of your day to pray for them and the soul of Sam.
Regarding the Cost...I was happy I was sent a run down of the charges from PPVI ahead of time with my appts and initial paperwork. I do not like surprises. We knew we were fortunate to have in network coverage, so we were going regardless of cost, but I didn't think it would be quite as much as it was and so learning this allowed me to break the news to Craig before the bills started rolling in. Our coverage isn't as good as the first time I went down (I used to have 90% coverage in network after a $500 deductible with a $1500 out of pocket max-last time I had no problem meeting this, but I had the ultrasound series and the hormone series done as well). This time we have 80% coverage and a $3k out of pocket maximum. We have $1700 left in our flex account (so we can use that medical expense money pre taxed) and I thought that would close to cover it. Haha. Not exactly. The bill from Hilgers that showed my 20% said $880 if they lasered endo. But the bill from Creighton (I had to call specifically to get these numbers) were astronomical. For example, one procedure, the hysteroscopy I think, was $11k. That may not have been my portion, but you do the math. That was one thing of several. So...we skipped the details and dear Lynn cut right to the chase. I had barely touched my deductible. The $3k is on top of that. I was definitely hitting the maximum. So my question to you all is...what else should I be seeking to get done this year?! Insert husband's small heart attack. Now, fyi, Creighton gives you 10% off of what you pay within 5 day, so there you go. Where else are you gonna make 10% these days? I know our bills are nothing compared to what you out of network and out of country folks are dealing with, so I won't dwell on this. I will say that out of country, I would do it again. I would. Hands down.
On being there in general...I must say, I wasn't worried about the surgery really. That may seem weird, but I will do my best to explain to you the range of emotions I was going through. I was back. in omaha. With my children. Rewind to 6 years ago, no idea if I would have children. And now I was back. I honestly know that if we can't have more children, we have already been blessed beyond words. So I guess that took some stress and anxiety away. I also just knew this was where I needed to be and I knew how blessed I was to get to be there. We drove just three hours to get there, so I am grateful to be so close. I desperately wanted to go to the celebration they had at PPVI but couldn't. This was my time. To say my thank you's. To introduce my babies. My "reunion" started a little earlier than expected, at my pre op appt for the hospital. Of all things, Nina remembered me, knew I had longer hair, a different last name, knew my story (I had shared it with her last time), remembered that she found my murmur (I have 3!). What a joy to share what has happened since I left Omaha. Her sister who lives 2 hrs away is also now a patient of Hilgers. I have a strong hunch she didn't know about Hilgers until I told her and that is why her sister saw him, but that is just part of my vague memory and I didn't realize it until after I left so that is unconfirmed. I left flying high and kept hearing my mother in the back of my mind telling me to come down off the ceiling. I was flying high and talking fast! I wanted to kiss everyone I encountered there and the tears flowed easily as I drove from Creighton to my pre op ultrasound at Pope Paul VI. I did call my mom and TRIED to pull myself together.
The ultrasound was supposed to be with Jeanine, but it was with the new girl. Young, cute, heart in the right place, knows she has the best job ever, I loved sharing our story with her. Then on to my appt. I wasn't sure who it was with there, and then I saw Dr. H. Yes, I was a little freaked out to be in the same room with him. Seriously. I wasn't sure if my appt was with him or Dr. Kargas (sp?) but it was both. Hilgers was first and he has a doctor from Mexico shadowing him. I told him my mind would be mush with him in the room, but I swear the Holy Spirit took over and I was brave and succinct and articulate like I haven't been in the last 20 months. Thank you, Jesus. It felt so good not to be tongue tied! I laughed at the thickness of my chart and was told it was 2 of 2, haha. I was able to recap my story for him, and even though he knew it in general, it was nice for him to have a succinct summary (yes, me succinct; now you know it was the Holy Spirit!) and you could tell he was thrilled to hear it and have the other doctor hear it as well. I really enjoyed my time in the room. Of course we bonded about how the pill is the cure all for everyone I know, how ob/gyns have defined life conveniently after implantation, frustration with the HHS mandate and how people think pill=healthcare, etc, and how evil and insidious infections are. He told me that 20% of his patients are positive for infections, but 60% respond positively to antibiotics. He thinks there are simply bugs out there we don't know about yet. I mentioned my desire to have the surgically trained Napro docs distinguished in some way on the website. He has felt that way too, and expressed that before, and is working on it (but seriously how long does it take-add a star or something, lol!). He is also working on the phone ap and confessed he received a package to start it recently but had been busy. He gets a pass. The man is crazy busy. I mentioned a little frustration about people not getting the full benefit of Napro when they don't take advantage of mailing in the blood work and he completely agreed that it was a major part of what they need to do their job. Its explained in his text book and he stresses it to everyone he trains-that was new to me. I know it is expensive folks, but it is so necessary to get the full benefit of what he does. He said nice things about how he is always impressed at what a smart group of clients he has so I wanted to pass that on to all of you. When he left, I felt set with the plan we had for the next day. I got to see Dr. Karges as well and tell her my story (Dr. H asked me to). She was wonderful. She relocated her family to Omaha and worked under him a year. When she goes back she is it for Texas and they are lucky to have her. Her time is almost up so Texas, here she comes you lucky dogs!
Surgery Day...What to say? This is the time I began to think about how my dear friend stopped breathing during the meds used to calm her prior to anesthesia-this happened just one week before my surgery. That was my only nervousness and I still knew it was rare and kept it pretty much in check. I took my time to stress with everyone that I get crazy nausea with anesthesia and CANNOT take narcotics. I have learned these things the hard way given I have had 5 eye surgeries, 2 D&Cs, 2 cysts removed, and this was my fourth laporoscopy. Yeah, I guess this is what I do in my spare time! They did all the things that worked well last time PLUS a motion sickness patch behind my ear. Which was great except it did totally dry me out and I could not swallow crackers without chugging a ton of water. They put these like, support hose things on to prevent blood clots, and they also had me wipe down again with those crazy wipes. But I knew I was in good hands and they put up with me desperately wanting my kids in the room even before the IV. I just didn't want the only hr they were there to be dh chasing them in the waiting room. So they came back and all was well. Charlie didn't even notice the IV (he was on the other side), but he has seen me get plenty of blood work. (We did prep him a lot and got pearls of wisdom from him such as "mom, if they give you a shot in your belly button, run!") The kids were actually really good in the room and entertaining and distracting for sure. Then back I went. They didn't tell me they were giving me something to relax until I asked because the room was moving as I switched beds. I am glad b/c if it was what Nan had it would not have relaxed me! Before I knew it, it was over. I had zero stomach pain that day (I guess they numb it up good), but that night the shoulder pain hit hard. First right, then left, then right again. I was told to sit up 45 degrees and use ice packs and that was the only thing that helped. I never did really get too nauseated. I remember women saying they couldn't leave the hospital until they went to the bathroom. I thought that meant a bowel movement, but am glad that was not the case. I have a tiny bladder and peed almost immediately out of recovery (all that IV fluid, I am sure). But a bm, well that finally came tonight-a full 72 hrs post pre surgery enema. And if that is TMI for you, well then you probably are not in the right place :)
Surgery Results...The next day I brough the whole family in for results. Dh knew to take the boys out if I couldn't hear, but again, they were super good which is crazy. They did have each other though, usually all the entertaining they need. And cheerios. Pretty sure we left a few of those crunched everywhere we went. Anyhow...there were some unexpected results. I wish I had details of my last surgery on my blog, but I don't. I knew this time they would likely find endo, but not a ton. The soreness I experienced hadn't been back very long. They found 3 spots and lasered them. They also found a micropolyp (associated with infection and/or inflammation) and a cyst in the cervical canal (which was inflammatory in nature). He found a mini/accessory fallopian tube-crazy right? He said it is common in women with endo. They also found, in general, a lot of inflammation on the wall (they can only treat with abx b/c surgically it would cause too much scar tissue)-do you see a theme here people?! Inflammation can be from endo or infection so not a lot of answers on that one but consistency is clearly my middle name. Hoping the results of the cultures will clarify the culprit. They saw spots from previous lasering, but not a lot of scar tissue, which was good news. Now for the 2 pieces of shocking news (to me at least). First of all, my tubes were blocked. What?! Yes. I got confused on the details because it sounded contradictory, but he couldn't get the dye through at all and they were blocked, but then he did eventually with a different technique. They are open now, yet he couldn't get the wire through? This sounds like Alive in Hope, so if T or anyone has clarification on this, I would appreciate it. But I am sure it is either infection or endo related because that is the theme in my life. And secondly, I have an abnormality that is assosciated with 2nd trimester miscarriages. Its a large septum. I suck at anatomy so he drew a triangle pointed down and then another triangle inside it attached at the top (flat edge). He said the space it is taking up can affect the baby as it tries to grow. It is associated with miscarriages around 16, 18, or 20 weeks. Ladies, can I just tell you how important it is to have a lap-I learned so much! They are not just for folks that suspect endo. I think they are a good idea for anyone with infertility, they are meant to be exploratory in nature and IF is as good a reason as any to have one done IMO. I know it is surgery, and no one wants unnecessary surgery, but exploring is necessary when questions are unanswered. He said that any ob/gyn that worked with me would need to do frequent ultrasounds and keep an eye on my cervix around that point. I think the treatment is a stitch (cerclage-anyone here need one of these?). I have comfort knowing that for whatever reason, it wasn't an issue with my 2 kiddos here (and the miscarriages I had were earlier, with TEBB cycles and good prog so we are still confident they were due to infection) and therefore there is less chance it will be in the future. I seriously can't imagine a 2nd trimester miscarriage. Someone would have to commit me.
On the logistics of being there with children...let's see, one room, 2 adults, 2 young children. Hmm. I don't know how you cosleepers do it, maybe it is because you start them out doing this early, but I don't know if even that would have helped. My kids have never really been a good match to sleep with us. Charlie will literally say, you can go back to your room now (we do some snuggling with him in his bed, but just for a minute). lol. And he is a talker. So anyway, we had Charlie in one bed, dh and I in another and AJ in the pack and play. Since the world series was going on there, and then after that the Olympic swim team trials, there was NO ROOM AT THE INN! Eventually we got a hotel (two, dh had the pleasure of changing hotels with both boys while I was in surgery b/c our hotel didn't have a 3rd night) but our hotel had none of the amenities that would have made it go smoother. Like location. Or a microwave. Or a fridge. Or a hot breakfast. Heck, continental would have been nice. Nada. So I packed. And packed. And packed. I organized. I printed off directions from every which way and researched kid friendly things to do. I packed swimsuits and bouncy balls and a entire thing of toys (heck, they play well with them on their own at home, why not at a hotel?) Let's just say if we could have kept the luggage rack wheely cart thing (why yes, that is the technical name for that), we would have. That was prime entertainment. And the telephone, unplugged. AJ enjoyed spilling powdered coffee creamer on the hotel carpet and then spent the next 24 hrs there sneaking licks of it. Ewwww! Rock star immune system-check. And flushing the toilet was big fun for him, as was unwinding toilet paper. He could open the doors there thanks to the long doorknobs. The schedule went out the window and the naps were all off. Charlie alternated between fake snoring and every possible attempt to engage us in conversation. AJ slept fabulously in pack in play in the pitch black bathroom (we had a handicapped room for the first hotel) when we finally got to town and to bed after a late dinner that next night (my appts ran long with all that talking), but that presented a bit of a problem. Let's just say I wet my pants one night and dh peed in a cup. No lie. Okay, now realize that I needed do an enema pre surgery. What did that look like? Wheeling AJ out of the bathroom asleep. Administering it laying down on the bathroom floor-both 'approved" positions were laying down-on towels of course. Using the bathroom. Showering. Wiping myself down with those nasty antibacterial wipes. Go to get dh to do my back and he is sound asleep. Because what else is there to do in a dark quiet hotel room with all the lights off at 10pm. Something about laying on that floor made me all too aware of how much I probably needed those nasty wipes, but I didn't like how dirty I felt having to use them. Dirty times 100 even post shower. The next hotel we had didn't give us a handicapped room so that was probably the worst sleep ever for me and kids (post surgery), but we all managed and there was plenty to laugh about. (I go to pick dh and kids up after pre op appts and receive this text-"C just pooped on the floor." Um, evidently potty trained for a year doesn't mean we don't regress at a totally foreign place (referred to repeatedly as the Cozy Cone by my Cars loving child, his only previous hotel/motel experience). Shockingly, the kids were not crabby at all despite the crazy schedule. Example-they woke an hour earlier (at 6am), never took a nap in the new hotel, and went to bed about 2 hrs later than normal. We really squeezed in the activities too (arrived Monday pm, Tues 9am-1pm zoo, Tues afternoon all my appts while they napped, Wed one of those bouncy inflatable places before my surgery which was scheduled for noon (yes, I starved. It didn't start until 1:45pm actually!), and we even hit the children's museum after my post op (there were lots of benches and I let dh do the running and lifting). We headed home after that since dh wasn't able to get Friday off (today. My mom came and stayed with me). They were clearly happy to be back in their own beds because C took a 3 hr nap, ate dinner, and went back to bed; AJ had to be woke at 8pm for dinner and was easily put back to bed. All in all, it was a pretty great trip, and like I said, plenty to laugh about when you throw the kids into the mix.
Back home and feeling alright...So that's it. It was plenty of news, as you can imagine, and I am ready for life to be dull again. I am fine with all the diagnoses. As usual, I feel better to know what I am dealing with and attack it head on. I wasn't expecting to get the green light to ttc again so soon, but here it is. Not this cycle (I am on CD 6) BUT NEXT. Again, I just feel like we are plugging our nose and jumping. If we stand around analyzing this too much, we may just stay on the ledge and what fun is that? So here we go again. Stay tuned...But first things first, does anyone know how soon I am allowed to be intimate? The pelvic rest box was checked but it said f/u with doc or X weeks and that number was blank. Obviously my f/u was the next day, I didn't think to ask Dr. H about it, figured it would be in my discharge instructions. Just curious.
Some bad news from friends...Completely changing topics, today has been a funk due to some really bad news I received from 2 dear friends. First of all, my friend Nan underwent her double masectomy last Wed. We are grateful that her scare with anesthesia turned out alright and was reversed quickly, but SCARY! But now, as of today, those lymph nodes they expected to be okay ARE NOT. It has spread. She will be doing radiation. Of which her mom died of (not from cancer, she was cancer free, but the radiation had done bad dammage to her lungs). We are devastated by this news. We were flying so high, the chemo had shrunk that tumor so that it wasn't even recognizable. Back to reality. Nan has cancer and she is still in the fight of her life. Prayers needed. And my dear friend Laura, who only has one brother in his thirties whom she is very close to, lives in town, has three YOUNG kids (oldest is eight)...has mesothelioma. They have no idea how he got this rare cancer from asbestos, which makes it all the more scary (who else was around it? Laura? the parents?). They gave him a month or two (actually his family-he and his wife didn't want to know). They flew him to Boston to the people who specialize in this. He was on the list for surgery. They just did some serious bloodwork and testing and determined he is no longer a candidate. That was the news this Wed, the day of my surgery. He is still in Boston, half the family there, half at home in my state. Then the email today came that he will be in heaven soon and his dad and three kids are desperately trying to make it to Boston to say goodbye. My.heart.is.breaking for this family and their very young children. Please take some time out of your day to pray for them and the soul of Sam.
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