I tend to get a lot of questions on this topic, but yet, when I sat down to write this I was at a loss and didn't know where to begin. For me, infection was the missing piece to the puzzle, and treating it successfully was the key to having our son. If I am fortunate to get pregnant again, we will replicate this treatment plan.
HOW DID I KNOW?
First off, Dr. Hilger's found infection (ureaplasma) during my lap with him. He treated with 2 weeks doxy (and dh) and thought that was enough (2006). Then I had tail end brown bleeding (TEBB) still and both cycles that I got pregnant with my babies I miscarried. A phone consult with Dr. Hilger's confirmed that infection was likely still to blame and I needed more. Then I chose to do a phone consult with Dr. Toth. Prior, I got on his website and downloaded his two free books that are on there full text. I read and it sounded like me. For example, there is a history of miscarriage in my family (mom and sisters); I have a history of bladder infections (so severe I was hospitalized more than once). My miscarriages were increasingly "worse" (Gabby was sick from day one). There is extensive history of heart disease and cancer in my family. The list goes on. I wrote notes to the side of the pages. I filled out the self-assessment at the end of one of the books. I scored high. I filled out the history forms sent to me by the office and I had the phone consult ($375 if insurance doesn't cover). Dr. Toth is very kind, spends lots of time talking to you, and confirmed what Dr. Hilgers already knew.
HOW DID I/WE GET THE INFECTION?
Infections can be passed vertically and horizontally. I had family history, but I also had reason to think that I got it from a past boyfriend and also my husband. So, there really is no telling-likely every way! But I have learned through all of this that blame isn't important, it is about focusing on a solution.
WHAT DID WE DO ABOUT IT?
It is very important to do something about the infection, if possible, prior to getting pregnant again. I was fortunate enough that Dr. Toth and Dr. Hilgers agreed that strong oral antibiotics were worth a shot (as opposed to having to go to NY for testing and then "full treatment" of uterine lavages, an IV for dh and I, and prostate injections for dh-this would take 10 days for treatment alone and would likely cost almost $20,000. It was unclear what would be covered by insurance, but not much!). The short reasoning for this full treatment is to really knock out any infection by putting tons of antibiotics directly on the source of the problem, combined with an IV to really hit every area hard. Dh and I were put on 500 mg of Biaxin 2x's a day for 21 days. During that time we were told to avoid. We took a probiotic to protect our stomachs and the only side effect I had was metal taste in my mouth. Water helped. (btw, it didn't take long for me to see a positive side effect-my menstrual blood became bright red-like open wound, fresh blood, bright red like I had no idea that menstrual blood could look like. This was a sign of success-the question is could I keep the infection at bay). Dh had no problems. After that, we were told we could ttc while taking Biaxin every cycle on CD 1-10. I told Dr. Toth and Hilgers that I only wanted to try this for 3 cycles (they had mentioned 3-6) because I had gotten pregnant quickly before and I figured if it didn't happen fast, I should move on to full treatment and not waste time with anbiotics that were only causing my bacteria to develop resistance. (I got pregnant on the 3rd cycle). Dr. Toth (who is very kind to be available via email) told me he would be happy to have me as a patient, even though had not come and seen him in NY, and he would follow and advise me through the pregnancy. He recommended an IV after my hcg doubled-10 days clindamyacin-and Dr. Hilgers agreed.
HOW TO SET UP A LOCAL IV?
Since I knew ahead of time I would need an IV quickly should I get pregnant, through my mom (a hospital social worker) I found a local infusion company that could do the IV in my home (no hospitalization required). The company wasn't national, but Apria is, and you can go to their website, enter your zip code, and find the local infusion center closest to you. You can find out if they take your insurance. You can find out if they place the line (mid line) or if you need to find a company that can place the line. Ask them for recommendations if they can't. If Apria isn't close, call the local hospital and ask them who they recommend to do infusions? After that, Dr. Toth's office sent Dr. Hilgers' office the information to order the IV and Dr. Hilgers' office conversed with my infusion company to set it up. They work weekends and knew I would want the IV immediately should it come to that, and they were willing and able to accomodate. Likely a day wouldn't have mattered though. I simply had to call when I needed them. They were wonderful.
LIFE WITH AN AMBULATORY IV?
The IV was in ten days. The mid line placement is a pretty big deal (lot of blood), but they numbed it and I had no idea I was bleeding everywhere until I saw the clean up. I didn't feel a thing. The pump was in a fanny pack that was black and not too noticeable. I could cover that part of my arm with a bag and not get it wet, so I could still shower. Instead of having the line go out the arm of my shirt by my hand, I threaded it back down my shirt (stomach) and it wasn't noticeable. I went to work and had no problem. It wasn't really that hard to sleep-I had it on the flood next to me. I learned to change the bags every other day. I learned to change the batteries, etc. It was surprisingly not a big deal. I.felt.wonderful on the IV for 2 reasons-I knew I was do everything I could to keep this baby, and I was probably more hydrated than I have ever been in my life. I also felt clean-placebo effect-who knows? But others have shared this sentiment.
A LITTLE MORE ABOUT DR. TOTH-
Dr. Toth and his lab are different because they are set up to test for every known pathogen; the lavages (they do uterine commonly, but also bladder) aren't available anywhere else that I can tell. His theories are unique/cutting edge; not always well received by local docs to implement and there not a network of believers like Hilgers' Napro trained docs. There are a few doctors that buy in, but not a formal network. Dr. Hilgers went to Dr. Toth's office for two weeks to study his methods. Dr. Hilgers isn't as hard core into the abx as Dr. Toth, but he does agree Dr. Toth is onto something and is working to replicate his lab. It will take time. For now, he tests for the heavy hitters in the same way Dr. Toth does (in house so no dammage during shipping, lets them grow longer, etc). This way there is less likely to be false negatives. Unfortunately a lot of folks test negative for bacteria locally and then they test positive using Dr. Toth/Hilgers methods-frustrating for sure!
AFTER INITIAL IV?
In my case, we chose to go to NY at this point and do testing after I was pregnant and had the IV. This was because we had frequent flier tickets, a free place to stay, and wanted the peace of mind. Later, I had a CT PCR test done locally and shipped to NY for Dr. Toth to analyze. I had a third one that was done and analyzed by my local ob/gyn. Even though they turned out negative, we chose to do the IV at delivery "just in case." My local ob/gyn had to be on board and order this. It was helpful to frame it as no different than the IV I would get had I tested positive for group B strep during my pregnancy. This is well accepted among the medical field and seemed helpful.
I hope this information helps answer your infection related questions. I am happy to answer any others, I just wanted to write a comprehensive post instead of you having to look back at multiple posts in my history. I think infection is crazy common. I am glad we discovered it. It isn't just about IF, but overall physical health. Dr. Toth believe infections are related to heart disease and cancer. He also believes that if you have an infection and get pregnant, you can have a very sick child-from ear infections to ADD and autism, and even a child that has infertility his/herself. I wouldn't ever mind having a sick child, of course, but I want to do everything I can to prevent it if I can help it. I hope this helps you all know where to go if you suspect infection or where to look to see if you have symptoms. The way we were able to go about doing this was incredibly inexpensive (IV was about $100-$150 out of pocket and antibiotics were pocket change), thankfully, though it easily could have run much higher.
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 local IV. Show all posts
Showing posts with label local IV. Show all posts
2.27.2010
11.11.2009
To NY or not to NY-that is the question
Sharing the bfp news with the gals on the boards, more details of the inner workings!
Well, of course the best laid plans...I was all set to go to NY (prepared in mind and body!) in March (all but plane tickets) and assumed a BFN (big fat negative-not pregnant in IF lingo) this next cycle since I had zero symptoms. However, we did have a history of getting pregnant fairly easy (1 or 2 cycles of effectove trying) I shouldn't have been too surprised when the BFP ("big fat positive," ie. pregnant) came yesterday after 3 cycles ttc (but five or so on Biaxin, since that included our avoiding time after the last miscarriage). Sooo exciting! At 15dpo (days post ovulation) I had a quant hcg of 546, which is pretty good.
I spent the day coordinating btw Dr. Toth's office, the local ob/gyn, the local infusion company, and Dr. Hilger's. I had a pretty good plan in place-another hcg Saturday and Monday, an ultrasound as soon as I hit 2000 hcg, another progesterone draw a week from Thursday (but keep in mind I am already on max dose shots), an IV put in tomorrow morning, and a trip to NY on 3/3 to see where I am at with the bacteria etc and how effective the IV was. Whew-that was definitely a full day's work!:) There was more drama coordinating the IV-the ladies at Hilger's office that set it up are out of town (yes, BOTH of them!) but left good notes and a nurse was very helpful. We were both shocked to find out today that the infusion company DOES not actually place the mid-line. They provide the pump and meds, hook it up, take care of it while it's in, and remove it. Everything but place it. I think the gals at Dr. Hilger's were aware, but somehow I missed that point so it through me for a loop. However, it turned out fine because the agency does contract out for that at the local hospitals and other companies. Midwest Vascular Access placed the line by coming to my home. It is additional money that we didn't count on, but AlternaCare is no longer requiring me to pay up front. They will bill all of it (and are a Cigna preferred provider) including what Midewast Vascular Access does. So, I did all I could in advance and now I just needed to put my faith in God that whatever happens is His will and try not to fret! Easier said than done, of course!
Well, of course the best laid plans...I was all set to go to NY (prepared in mind and body!) in March (all but plane tickets) and assumed a BFN (big fat negative-not pregnant in IF lingo) this next cycle since I had zero symptoms. However, we did have a history of getting pregnant fairly easy (1 or 2 cycles of effectove trying) I shouldn't have been too surprised when the BFP ("big fat positive," ie. pregnant) came yesterday after 3 cycles ttc (but five or so on Biaxin, since that included our avoiding time after the last miscarriage). Sooo exciting! At 15dpo (days post ovulation) I had a quant hcg of 546, which is pretty good.
I spent the day coordinating btw Dr. Toth's office, the local ob/gyn, the local infusion company, and Dr. Hilger's. I had a pretty good plan in place-another hcg Saturday and Monday, an ultrasound as soon as I hit 2000 hcg, another progesterone draw a week from Thursday (but keep in mind I am already on max dose shots), an IV put in tomorrow morning, and a trip to NY on 3/3 to see where I am at with the bacteria etc and how effective the IV was. Whew-that was definitely a full day's work!:) There was more drama coordinating the IV-the ladies at Hilger's office that set it up are out of town (yes, BOTH of them!) but left good notes and a nurse was very helpful. We were both shocked to find out today that the infusion company DOES not actually place the mid-line. They provide the pump and meds, hook it up, take care of it while it's in, and remove it. Everything but place it. I think the gals at Dr. Hilger's were aware, but somehow I missed that point so it through me for a loop. However, it turned out fine because the agency does contract out for that at the local hospitals and other companies. Midwest Vascular Access placed the line by coming to my home. It is additional money that we didn't count on, but AlternaCare is no longer requiring me to pay up front. They will bill all of it (and are a Cigna preferred provider) including what Midewast Vascular Access does. So, I did all I could in advance and now I just needed to put my faith in God that whatever happens is His will and try not to fret! Easier said than done, of course!
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