Get on the specialist train

Met with my next specialist today: the high risk pregnancy specialist; to start to look at how we can be prepared to ensure a successful pregnancy, if that is something that we achieve. Big If.

Dr. M at Mt. Sinai is my pregnancy specialist. Overall, she seemed very knowledgeable and experienced. She broke down all the risk factors very clearly and how she would handle them. Most of the information she provided I was prepared for, and had some knowledge of, (thanks to my excessive googling habit). We discussed the risks, and what I will need to be careful about. Some of it was new though, and has provided much more Googling fodder for the near future. Generally though, she was hopeful that we can do our best to manage all the possible risks and give me and baby the best chance possible.

On a side note,  I wanted to mention how different the experience is at a teaching hospital compared to a private clinic. Every time I want to see a doctor I need to go through my ‘history’ with a fellow or a resident, who then reports to the senior doctor, who then, if needed will speak with me directly with the associate in the room. Today’s fellow was super annoying. Primarily based on her lack of experience and perhaps my lack of patience for people who know less than me about my particular brand of medical issues. She seemed very nervous/anxious and while she mentioned that she and Dr. M had read my file before hand, she didn’t really seem like she knew much about my case. I mean she hadn’t even read the referral sheet from Dr. Go.

I mean I had assumed that as my doctor (with my records, from the same hospital), you would know I had a history of chemo and radiation and had been seeing a fertility specialist, which is why I am here to see you. Nope. No idea. “Oh you had a bone marrow transplant?”. Yes. I also had chemo and radiation which damaged my uterus and lungs which is why I am here. Obviously she is learning and I am just a guinea pig. But it gets frustrating speaking to someone who knows nothing about what you have been through.

Dr. M on the other hand, she is most definitely in the know. She seemed to have done her homework and was familiar with various risks that we need to watch out for. And she added a few more concerns to the list (because we all know that my list ain’t long enough already). Anyways, I do feel like a teaching hospital is probably the right place for me, as at the very least these guys are up to date on the latest research and can hopefully pull from a wide knowledge base to help figure me out.

Having experienced both private clinics and hospital settings now, I believe that for someone with a rare and unique condition such as myself a teaching hospital, specifically one that is leading in its field is crucial to get the type of care and skill necessary. If I do manage to go all the way and give birth, I have no doubt this will be the hospital where I shall go to deliver. They just get me.

Ok now back to the appointment itself. Here is the rundown on the risks:

  1. Thalessemia Major – that pesky thing started this whole problem. Beta Thal was cured after the bone marrow transplant. So no real worry that it will affect any future child. Phew.
  2. HRT – Since the bone marrow transplant has left me in premature menopause, my uterus does not have the hormones it needs to sustain a pregnancy. So I will need to continue HRT (basically prometrium) throughout the pregnancy to ensure the uterus has what it needs to develop the fetus/placenta etc.
  3. Hepatitis – Apparently my old records show that I tested positive for Hep B and C. No doubt as a result of my hundreds of blood transfusions from the age of 2 to 12. Hep C I was aware of. I have been seeing a hepatologist (liver specialist) who had me taking Harvoni, a new medication to cure Hep C, for the past few months. By July we will have confirmation that I am all clear, no further meds needed. Hep B, he has never mentioned to me. So I will follow up with him about that. But even if I am a carrier, it is only a concern if we have to do anything that will cause my blood to mix with baby’s blood e.g. amniocentesis, fetal monitoring etc. So we will just have to avoid that, and to ensure we vaccinate baby when baby is born.
  4. Heart Issues – now this was a new one. Apparently certain chemo meds can impact the heart, which can become an issue during pregnancy when there is so much pressure on the heart. Luckily I have my discharge report from my transplant which shows exactly what meds I was given. Dr. M will go through that to check what risks, if any, become apparent. But for now we shall do a heart ultrasound to see if there is anything to be concerned about, and to establish a baseline to compare against, in case I do get pregnant.
  5. Lung Issues – Bronchiectasis as a result of the radiation and chemo. I know that I have small than average capacity lungs for a woman my age. I also am constantly wheezing so need inhalers to help control my symptoms. To date though it hasn’t really affected me much other than I am susceptible to chest infections (had 3 last year!) and don’t have as much stamina as most people do.  I am seeing a new pulmonologist (lung specialist) in September and will have a baseline pulmonary function test done then. I will have them fax my results over to Dr. M, so she has that too. Essentially, there is a risk that with a growing belly and the diaphragm being lifted up during the later stages of pregnancy that my symptoms may worsen. But given that I am so active now and can control my symptoms with inhalers we should be able to control any of this risk. And worst case I will have to be admitted to monitor my and baby’s oxygen levels and maybe administer oxygen. Also I will need to avoid getting sick for 9 months or keep the pulmonologist on speed dial.
  6. Uterus – Dr. M, will review all of my ultrasounds and other uterus related tests to confirm if there is any damage to the endometrium from the radiation. Essentially, I am at higher risk to miscarry so we will need to monitor any pregnancy very carefully by doing progress ultrasounds, checking to see if the placenta is attached properly and the baby is growing normally etc. So not much follow up here other than be prepared for a whole lot more doctor visits if the pregnancy happens. (I am beginning to really appreciate being a Canadian and having free healthcare!)
  7. Esophageal Varices – this is another new one for me, and ties to the liver issues from Hepatitis. Apparently when the liver is damaged (sclerosis)  veins in the liver can be blocked, so other veins take over their job. Sometimes these are smaller veins that can’t handle such a high load of work. These smaller veins are located along the lower esophagus, and can burst during pregnancy because of the increased blood pressure. An endoscopy can help rule out if this is occurring, but seeing as my liver specialist did not raise any concern about this, Dr. M said she would speak with him but did not think this was a high risk in my case.

And that’s it folks. I don’t think I have any body parts left to be concerned about. Follow up in a few months when all these test results are in and Dr. M has reviewed them. Likely sometime in October.

I don’t think people realize what it means to have a ‘miracle baby’ or ‘precious baby’. This baby, should it manage to overcome every single one of these hurdles, will truly be a miracle.



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