TEBB false alarm? Stay Tuned for the Meth and Family Preg Update

I was going to title this post "This and That", but then I figured it's been used and is totally nondescript so I ended up the other direction completely. What can I say?

Sorry for the long pause in posting. Life has been anything but dull. I thought if I waited a little to post it would be less like dragging out a situation and drama-ish (wow, I am clearly not articulate at 1:30am, but then again who is?!) However, drama has only increased. Since I am not writing because I am thinking "yeah, drama, good blog material" perspective and more from a "good grief we need prayers" and it's been so long I may start forgetting the cycle stuff...Also I didnt write before because I am not good at expressing how I feel. As a result, I dump the information, most people would think I am in a place I am not, and I don't want to give that impression and have you all feel sorry for me. We are okay. My sister, however, is not. More about that in a minute. Enough with the disclaimers. Time for info.

Last cycle is something I wanted to update on, mostly for myself and the sake of remembering. I took the usual CD 1-10 abx, only this time at night. On about CD 8 (lazy, not looking up), I thought I saw TEBB. I was sure, at the moment, that it was brown blood. I had total deja vu about last Dec when we conceived Nicholas when something similar happened. However, I totally forgot I was on Rifamp.in in that moment, which turns my urine orange about once a day. This was complicated by the fact I had recently switched to taking it at night. In hindsight, I am not at all confident that it was TEBB. When it occurred, I called Dr. Toth. He said he was sure it was the Rifamp.in. I called Dr. Hilgers in a panic. In my mind, ideally, I would sit out the cycle ttc and take Cipro the second half of my cycle. I would only ttc based on my period the next cycle and things being clear. Exactly what I had wished I had chosen with Nicholas. However, Dr. Hilgers was out of town. In Mexico. Stefani was as nice as could be, understood my stress over the situation, etc. But there was no one to talk to and it sounded super clear there would be no Cipro. It was Dr. Hilgers call. She offered to consult with Dr. Steve Hilgers, Dr. H's son, which came back to say don't worry. One time. One small observation. I thought, easy for you all to say. However, dh and I did talk and decide that, since I wasn't getting scripted Cipro, that nothing would be different next cycle. I could look at my blood to feel better and see if clear, but if it was brown now it would be brown then too likely and if it wasn't then it would be clear, as we were not getting any "intervention". It's hard to explain even to myself, but we decided to still try and just trust it wasn't TEBB. Well, the next day I got a call that the Cipro script had been called in. What?! We chose to not utilize any other days to ttc and let the antibiotic work on things. If we would have had TEBB and we would have still tried on the Cipro we would have exactly mirrored the Nicholas situation, one year later almost to the day. The Cipro was something we really "needed" anyway per Dr. Hilgers based way back on Aug cultures done on my lap. Toth disagreed and I never got clarity from Hilgers. Timing never worked out to take them due to being on pre peak abx since Toth treatment-it had to be worth taking off a cycle and we didn't get any clear answer from Hilgers on that. I am glad we have the Cipro done and have moved on. This cycle the blood looked fine. That meant a lot of abx though-pre peak, during ovulation (both Toth) post ovulation Cipro and don't forget the amox for CM. Dh is doing much better with his symptoms since I was sure they were yeast and got aggressive with the Dif.lucan. Dr. Toth and Hilgers are committed to us having the script whenever we want. We don't know the drawbacks of taking too much, but we def chose to utilize the scripts as needed and feel great. We know the abx anti yeast meds cycle will be relatively short term but there is the back of the head concern. Basically, we chose a path and we now have to follow it. I am not into diluting something or going rouge, if that makes sense. So we will play this out.

Needless to say, I was pretty relieved at not being pregnant that Dec cycle. This cycle the blood looks great, the CM looks great, and we are taking advantage of a lot of days. After all, its now cycle 4 post treatment and only the 2nd one we have really tried. It's now or never, time to learn if the treatment will bear fruit and move on from this antibiotic/antiyeast cycle we are stuck in.

I have so much more to say, not at all cycle related (meth and pregnancy in the family related) but I can't this second. Charlie and AJ have been taking turns (or together) sick since Halloween, taking turns waking at night. AJ is now potty trained at night, wonderful!, something Charlie isn't, but there was always him waking at least once to go sans 4-5 days in there. Add in Charlie's bad dreams, pottying out of pull-up until we found a solution, etc and it was a lot of disrupted sleep for us. It hit an all time low the last ten days when one of the two would wake AND STAY UP at least two hrs requiring multiple re-entry into their room. Now I am just dragging myself through the day. I can not live like this-it's def worse than newborn nursing IMO. Add family drama and I am spent. Here, tonight, both are sleeping, and an unusual event-I couldn't turn my brain off after my stomach waking me upset. So, at least I am into this update I have been meaning to do and I will come back this weekend and post about the family drama. For now, prayers prayers prayers for my sister JC and KT.  Ah, and one question? If you use a Reader, which one do you use for blogs? I have got to figure out a new one and get it on my phone!

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.

• 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!

Dr. Toth on board my IF team

Okay, so we are convinced we have bacteria. We are taking the oral antibiotic. But will it be enough? I am scared to try unless we have a great reason to believe it will be enough. We scheduled a phone consult with Dr. Toth and again hovered over the speaker. Dr. Toth spends over an hour and a half pouring over the family history forms we worked hard to fill out. This same risk assessment is found in the back of Dr. Toth’s other book-Fertile v. Infertile. It includes cancer, heart disease and other things that people don’t currently typically associate with infertility. Forty four or higher means that you are at high risk. We scored a 77, nearly doubling that. Most of it was from my side. Dr. Toth definitely thought bacteria was at least one of the culprits to our miscarriage. He mistakingly thought that the antibiotic I was on currently was done in the past so he recommended we immediately come to NY for diagnosis and treatment. He is out of network and that meant a full $17,000, not considering room and board. But he was the only doctor doing this, so did we have a choice? This wasn’t in vitro, which was also expensive. This might be a one shot that would work for a whole family of children. Cheaper then adoption….worth more to us then a new car…and here is the real kicker. Where God really blesses us-we would be healthier ourselves (problems we had no idea were associated to bacteria were, so we would feel better and also have less risk of heart problems and cancer, prevalent in my family!) And our children would be healthier-a healthier full term birth, healthier in childhood, and they could be reproductively healthy so we could stop this awful cycle of infertility! And less risk our children would get cancer and heart disease! God is good! So Good!
I also realized that DH’s major drive to have biological children was helping him get through this-all the hormones, and the needles, and the medicine and all the money we had dreamed we would be spending in other ways. God must have known that desire could be used to get him through this, and I thanked God for it.
I realized that Dr. Toth might be confused the next day, so I sent an email to him (very reachable, very kind). He said he understood now and did agree that we had a good shot moving forward with trying to conceive on the oral antibiotic regime that Dr. Hilgers had prescribed. And if I didn’t get pregnant by the end of the year or if we miscarried, then we would come for full diagnosis and treatment at that time. I told him I didn’t want to try unless we knew that he would continue to be involved during the pregnancy, as I had now learned that we might still need oral or iv antibiotics. I wasn’t going to get pregnant in a healthy manner, just to have the bacteria come back and take my baby. Dr. Toth agreed to provide all necessary support and I felt comforted.
I still had peace, but I did try to control everything anyway. I was a bit worried that the antibiotics would lead to a later miscarriage. I knew that some folks got all the treatment and had one more miscarriage because their immune system hadn’t calmed down quite yet. But then they went on to have healthy babies. Over 60% of them did and Dr. Toth saw the worst of the worst that had already tried everything else (even though he kept trying to get people to come see him FIRST). I thought how we might have a miscarriage this time, and then get treatment and have another miscarriage. I usually am comforted by worst case scenarios, but the idea that the fifth pregnancy would work out just didn’t comfort me. I felt out of control with my emotions. This had truly taken over our lives. I couldn’t stop researching and talking about it. I wanted to help others, as many as possible, and I wanted to make every chance for this one to be the right one. Because I didn’t think I could take another one. That is how I felt in my darkest hours. My friend was experiencing her fourth at this time and already had her and her husband’s appt to get cultured by Dr. Toth. I didn’t feel strong.
But, again, knowledge is power. So I emailed Dr. Toth and asked him what the plan was for pregnancy if it occurred this cycle. It was time to try again (and we hadn’t rested since the miscarriage at all!). Dr. Toth said I would need a ten day IV of full therapeutic dose of Clindamyacin. He uses an ambulatory IV, but I could get it locally done if a doctor would be willing to consult with Dr. Toth. After my last ob/gyn experience, I was doubtful.