Friday, October 31, 2014


Below is the decision I made, taken right from my FaceBook note. I am running out of time (figuratively and possibly literally). I'm now in fundraising mode, packing mode, etc. All this needs to be completed in a little over 2 months. Yikes!

I made the decision to have intra-cardiac reparative surgery. What that means is that the pieces I was born without will be created and rewired into my heart/lung connections. I also have a large hole in my heart that will be filled (or partially filled) depending on preoperative pressures (during the surgery itself). The left lung might be disconnected as it's sick. My right lung is really strong (it's the one that received a stent last year in it's mapca).

For the science minded: I have PA with VSD and MAPCAS complicated by PAH in Left lung (Pulmonary Atresia with Ventricular Septal Defect and Major ArtoPulmonary Collateral Arteries; Pulmonary Arterial Hypertension).
Yes, I seriously have all that and have never been repaired!

The surgery is more complicated than a double-lung transplant but the outcome (if successful) is much better. Surgery will last 10-12 hours easy, with bypass being anywhere from 6-8 hours possibly in 2 batches (depending on pressures once patched). 

My surgeon explained that regular/routine surgeries carry risk of 1-5% for anyone. OpenHeart surgeries (bypass, coronary etc.) are upwards 10-15% and this one is 30%. (don't shoot me if these #s are wrong, this is his opinion). There are so few of me that the N value (number of us studied) is low (I checked). However the outcome, if successful, is much better than a heart/lung transplant which would only give me 3-5 years at best. For which, I'm not even a candidate because my plumbing is too weird. Theoretically this could give me much, much more time.

My risk isn't so much in the surgery itself, but in the ICU: for every hour after 6 hours of bypass (death by) complete organ failure rises dramatically. I will expect to be in in ICU for at least a week, several days on ventilator. If longer, they will have to do a tracheotomy (insert tube through neck). I will expect to have dialysis and cross fingers that it clears up after a week. In one of their 10 cases, the patient remained on dialysis the rest of their life. We'll also hope that I don't bleed out, get vent-related pneumonia, have a stoke, or am left with paralysis.

Why am I doing this with all the risks: without it my MAPCA-stent may not last long. I will remain on O2 for whatever few years I have, won't be able to work or travel. I'm bored, I want more. If I don't do it I know myself enough to know I will forever wonder "what if". I can't live like that. I could postpone it but I am at my strongest now which is the answer to the question: why are they offering it if it's this risky: unlike last Nov. when they met and theorized about this, I am much stronger/fitter. I am motivated and they know I will do the work to breath on my own, get off the vent, ICU (they have another patient in her 20s looking into this right now and told me they are hesitating with her as they don't know if she will do what it takes). I also have no co-morbidity, i.e., aside from this problem, I'm really healthy. I also have a "virgin sternum" which makes cutting and breaking the breast bone so much easier for them.

Why am I being so candid? What do I have to lose? My life is on the line anyway. If nothing else from my journey, I want people to appreciate their health and take care of themselves. You really don't know how important your health is until you lose it. Without it you're not free. Do everything you can to not squander your health. And to appreciate our healthcare system (despite it's brokenness). It may be in bad shape, but if I were in the US I would not be alive today.

What I need from folks: support (if you're in TO), prayers. Even my science-minded docs said they'll do their best and they have theories but in the end, it's a guessing game because it's a mystery. Whatever or whomever that mystery is for you, in January, I, and my team will need it. I kindly ask that I not be told things like "you've come this far, you'll be ok" or other new-agey nonsense (yes, "I" just said that). It diminishes my reality to a saying and it's just not supportive. You're welcome to give it to the universe if you'd like.

may have to fundraise a bit as my sister will have to live in TO for up to 2 months being my support-person. We are looking into caregiver-EI and my own savings but we'll be paying for accommodation there, and we both still have mortgage payments to make here. Never-mind that for each trip I've already been using savings for the last few trip/consults etc.