I kept the phone lines hot to the west coast tonight. First up was Dr. S and then Dr. X.
Consult with Dr. S
I just had my second follow-up consultation with Dr. S to review the results of my immune testing. He told me that while I do not have the alloimmune problem that he suspected, I do have another immune problem.
I’m so frustrated. The nurse told me that all of my immune tests came back negative. I almost skipped this consult with the doctor because of it, because there would have been nothing to discuss. I’m glad I did it anyway. I did, of course, request copies of my records, so I would have found out eventually. I was so depressed all for nothing.
My immunophenotype tests show that I have activated “T” cells. This basically means that I have an overactive immune system where cells attack everything, including the embryo. My balance of Th1 cells (the agressors) to Th2 cells (the pacifiers) is messed up and I’m Th1 heavy. My Th1 cells become overly aggressive and go after the wrong targets. So, basically I have a bunch of crazy, blood-thirsty warrior cells running through my veins. I suppose the opposite would be worse though because then I would have a weakened immune system leaving me vulnerable to infection and tumors.
Dr. Sher thinks that this is easily treatable using intralipid and prednisone, but of course he wants to treat me in Vegas. I just don’t know what to do now. I told him that I was very concerned about having abnormal embryos in addition to everything else and he said I should not be worried about that at my age and with my history. He said most of the problem embryos are weeded out by the blast stage and once they make it to blast stage, one out of every two is normal. So, if you transfer two, in theory you should be good. He also said that they invented Comprehensive Genetic Screening, but he just didn’t think it is necessary for me and would be a waste of my money.
Consult with Dr. X
Later this evening, I had my consult with Dr. X. He thinks that I have an embryo problem and suggests that I do CGS (Comprehensive Genetic Screening) to biopsy and test the embryos. I asked about PGD vs. CGS and he says that PGD is proven to not help at all and even to be detrimental. That jives with everything I have read and makes total sense. I told him about my newly diagnosed (as in one hour ago) T-cells. He thinks that is a bunch of “hocus-pocus.” He thinks we have good chances.
I could not possibly get two more differing opinions than these two. However, I knew this before I ever set up the consults. I knew which camp each doctor firmly stood in, but wanted to talk to both. I believe both of them. I believe the immune issues could be causing my problems. I also believe I could have the additional problem of genetically abnormal embryos.
What to do
Well, the decision absolutely comes down to money, unfortunately. If I had Oprah bankrolling me, I would go to get the immune treatment that Dr. S recommends and the CGS that Dr. X recommends. But, that’s not happening.
We are in a shared risk program at our local clinic. The deal is four fresh IVFs and after that if there’s no live baby, you get your $20,000 back. Frozen cycles don’t count and are included and you have to use all frozen embryos before proceeding to another fresh cycle. Even though we have done this so many times (five), we have done only two fresh cycles and the rest were frozen. So, right now we have two frozen embryos from our last fresh cycle. We can eject ourselves from the program at any time and get half of our money back.
The Dr. X CGS option is absolutely out because our clinic doesn’t do CGS and it would cost me $30,000 for one IVF cycle with CGS at the new clinic.
Next, I can try treating the immune issue. Dr. S wants me to go there, but I’d like to stay here but use his recommended treatment (if both doctors will go for that). We have the two frozen embryos that we should use anyway and the specific immune treatment would only cost about $200-400 extra. Then, if that doesn’t work, we can decide whether to:
- Try again here with a fresh cycle and same immune treatment (IVF count #3 of 4 in the program)
- Or, go to Dr. S. He said I could do the micro IVF, which costs $6400 + meds + travel = $10,000. We could get our $10,000 back locally and do this, but then all of our money would be gone and if it didn’t work, that would be it. No more IVF money and no adoption money.
- Or, we can get our $10,000 back and have about half of what we would need for adoption. I’m thinking fundraising and loans for the rest. But, this would be guaranteed. No adoption, no money.
Pretty bad when I need to flowchart to figure this out.