Monday, July 1, 2013

Down hearted

Sorry I haven't written in awhile.  It's not for lack of wanting to...just life always seems to get in the way.  Plus I spent the month of June reading the entire series of Game of Thrones (books 1-5), which was over 4000 pages, so I spent a good portion of the month reading.  I'm now in withdrawal...I wish the next book was coming out soon.

On to more important things.

No we aren't pregnant.

And after my cardiologist appointment this past week, I'm wondering if it's a good idea health-wise.

My heart is currently functioning well, however I do have a 'moderate' amount of aortic regurgitation which means that a portion of the blood passing through my aortic valve from my left ventricle tends to leak backwards through the valve rather than all flowing out through my aorta.  Basically my cardiologist is telling me that valve surgery is in my future.  She's 'hoping' I will get 10 more years out of the valve, but at some point it will need to be replaced in order to help preserve my heart function.  Currently this type of valve is replaced by open heart surgery, meaning you have to be put on by-pass while your heart is stopped and worked on through a giant incision through your chest.  According to my good friend Google, it has a 1-3% mortality rate (which is probably higher with Fontan patients like me).  My cardiologist is hopeful that by the time I need my valve replaced it will be done by catheter, making the procedure less risky and less invasive.  I'm so hoping too.

Hearing this is upsetting, although not ENTIRELY surprising.  I've done my reading, and from what I've read Fontan patients usually begin having heart problems as they grow older, and valve surgery is fairly common in heart patients. It is hard to begin applying those statistics to yourself though.  It's scary. If I were to get a non-tissue valve, I'll have an increased risk of clotting and will need to be on blood thinning medication indefinitely.  A big annoyance and not a pleasant prospect.

However, what was worse, was that this cardiologist started telling me about the possibility that one day I may need a heart transplant.  I know my parents were told when I was a child, that I was not eligible for a heart transplant and that the Fontan operation was my only option.  This cardiologist is telling me that things have changed in the last 25 years, and now would be considered for a heart transplant if I needed one (yippee!), however Fontan patients like myself have a 30% chance of DYING ON THE TABLE during the surgery (definitely not yippee).  If they survive post op, the outcomes are usually good...but the risks are high.  It also means living on the transplant list.  You can't travel, you're tied to a pager every day, wondering "will this be the day my heart arrives"...and there is the possibility that one won't be found and you'll die waiting.  Also, fun fact: women who have had children have a harder time being matched due to the antibodies they have made against the fetus.

A transplant also isn't a cure'll be on anti-rejection medications forever (increasing your risk of infection and cancer) and transplanted hearts fail on average around 15 years, meaning you'll either die or need another one.  Only 69% of female transplant patients are alive at 5 years.

This is VERY upsetting because damn it all, I want to be an old lady. I want grey hair and wrinkles. I want to go back to school and change my career trajectory.  I want to travel with my family, or alone with Brian, and one day I might even want to retire!  I want to see my grandchildren grow (should I be lucky enough to have them).  I want a full life, with the normal expected life span.  Hearing all this stuff about my heart is making me think about my life long term.  For example, I better stay in a job that has good medical benefits, good disability benefits and life insurance, because at some point, I might (will?) need them.  So scratch working in a small medical clinic, I'll have to stay at a big hospital.  I should also definitely get on with my plans for school.  I need to move towards a career that is less physically demanding. We should also not plan to move to a smaller city. The hospital I need is here.

Those concerns are obviously all long term, and in my own benefit. In the short term, I (we) want another baby.  I want a sibling for Kaia.  Especially if there is a chance I might not be around to see her as an adult, I want her to have the comfort of a (living) sibling. It's so maddening because part of what has come with living so well with my heart defect, is my own expectation that I will pretty much be able to live a normal life, including having the number of children I want (or at least TRY to have the number of children I want).  If I let myself be scared off trying for another child, fearing that it may damage my heart, I feel it would be tantamount to letting my heart defect stop me from achieving my dreams.

It's put a lot of thoughts in my head this week.  How to I reconcile my short and long term desires? It's led me back into looking into surrogacy.  Here in Canada, surrogacy is legal, however you aren't able to directly pay for a surrogate the way you are in the States. You are however, responsible for many other costs.  Including, (but not limited to, of course), the IVF fees ($10,000+), the lawyers ($1000s), DNA testing ($1500) the expenses the surrogate will incur including travel costs, maternity clothes, extra food costs, and the possibility that she will need time off work which means you'll be paying her salary.  The website I went to listed $35,000 as a total conservative estimate.


This is all well and good, but first someone (out of the goodness of their own heart) has to offer up her uterus for 9 months. And maybe, maybe, if all goes well, you get a baby (or two?) out of the deal and the lovely woman who has helped you gets a few more stretch marks and the knowledge of a job well done.

Makes me wish my parents had tried a little harder to give me a sister (preferably one who loved me lots and liked being pregnant).  My brother is fairly useless in this case.  Thanks for nothing Mom and Dad. ;-)


  1. I'm sorry you have to deal with heart issues. I don't really know what else to say....just that I'm sorry. I hope that when you do need the valve surgery, it can be done less invasively and that you never need a heart transplant.

    The costs for a surrogate are staggering. I'm not sure if we will be having another baby. I want to but Ted doesn't because of his age, which I understand. But I want Emily to have a sibling she grows up with and will be there for her after we are gone. It's something I think about every day.

  2. I'm so incredibly sorry that you're dealing with these health issues right now :( I just found your blog and look forward to following.

  3. Gosh, I had no idea the severity!

    One thing Aidan has probably taught you loud and clear is about the uncertainty in life, but then you have your heart, wanting a sibling for Kaia and the possibilities you'll have to consider for your own well being.

    Goodness. That's quite a bit to toss around at the dinner table discussion. I'm sorry to hear about all this. I sure wish they were giving you different, more miraculous news.

  4. Man oh man, this is not simple. I would not carry another baby, too much stress on that valve, shortening perhaps the time until you'll need the replacement. You would be better off with a surrogate carrier. I have looked into it, in India in particular, and would have gone for it if the option of carrying myself did not work out.
    As for the future and for getting old, and the transplant, worry about what you can control and realize that the future is not here yet, and will not be for many, many years. It is the only way to survive a chronic illness.

  5. Damn. This is hard shit to believe, and to understand at all.

    You make such beautiful babies. I wish you could have four more just like Aidan and Kaia. I hope something works out for you. The surrogacy, the miraculous conception which last a full 38 weeks before a living, screaming, perfectly healthy baby arrives.. Oh, and causes no further damage to your heart.

    Such a complicated situation.