Testing 1, 2, 3…

Last Wednesday I spent most of the day at the Pre-Heart Transplant Clinic talking to doctors, dieticians, nurses and social workers about the possibility of a heart transplant.  If you haven’t been following along, I have something called Idiopathic V-fib a rare arrhythmia that has puzzled the medical profession.  I have been to all kinds of specialists, my case has been shared with Electrophysiologists from around the world and no one has been able to come up with a treatment to stop my heart from going out of rhythm.  I have tried all the drugs that I can try, all procedures have been done that can be done yet they can’t seem to give me my life back. The events are so random in when they occur and why they occur that we rarely leave the safety of Vancouver, we feel safer staying close to the hospitals and doctors that intimately know my condition.  Thankfully, the events most often happen at home, but we just recently had my first “Public” event while on BC Ferries coming home from a visit with my in-laws, 20 minutes out from Vancouver.  It was scary as they always are.  I do have a device called an ICD implanted in my chest that jolts me with 35 joules when necessary, but I am most always unconscious when this happens.  The last two and a half years have been a roller coaster, with many ups and downs in regard to my condition.  I did have a brief period of time when I was stable, but that came to a crashing halt after 14 months and was followed by three events within a 2 month period.  This is why I am being considered for a transplant, I am told that they look at maybe one case per year where the issues are similar to mine.

 

They say that having a transplant is like trading one disease for another, but in my case, at least the transplant will have more predictability and from my perspective, it will give me back some semblance of my former life.  Currently, I can’t drive, work, travel or plan anything long term and I still have lots of living to do, lots of places I want to see and people I want to meet.  This terrible turn in my health has devastated us financially, before all this, we had well paying productive jobs, now we are both living on what little I get as far as long term disability from my former employer.  I can’t be left alone so Douglas has had to leave the workforce in order to be with me.  We live each day wondering if the rug will be pulled out from underneath of us because of a decision made by someone at the insurance company, it would be devastating and we would be homeless, not something you want to face when you are fighting for your life. Some days the stress is unbearable, we do the best we can to cope.

 

During this meeting on Wednesday, it was decided that we would go forward with the transplant assessment, they take a microscopic look at my health at this moment to make sure there are no surprises.  They look at all aspects and no stone is left unturned, they want to be sure I am free from cancer and infection and that I am going into this surgery with the best chance of long term survival.  Before I will even be considered for transplant I have to have a number of vaccinations, a dental check up, a pap test, a mammogram, samples are taken of my urine and stool, I will have doppler scans on my neck and legs to be sure there are no blockages, an ultrasound on my abdomen, a lung function test, a CT Scan of my body to look at my internal organs, a chest x-ray,  a bone density test and a right heart catheterization which looks at the blood pressure in the lungs.  I also have to meet with a Social Worker, a Psychologist, a Dietician and the Surgeon, the evaluation is all encompassing.  After all of this information has been gathered, my case goes before a team of doctors who decide if I am a suitable candidate for transplant and if this is the right time to do the surgery.  The whole process takes 4 to 6 weeks, if the answer is yes, then I am given a pager and the wait begins, it could take anywhere from a day to over a year to find a suitable donor, the average wait time is 6 months.  If the answer is no,  I will continue to be monitored for any changes to my condition and the possibility exists that somewhere down the road I will be considered again.  For me, a no would be devastating, we have already put our lives on hold for over two years waiting for a day when we could resume our exploration of the world.  I want to be able to go to Ontario to visit my family, it’s been over 10 years since I have seen many of my relatives and there are so may new little ones I have never met.  My parents are getting older and my Dad is not doing well, and I really need to see old friends who support me from afar.  I want to go to Portland for a weekend, a city I love dearly, there are so many places that I want to return to, places that have touched my soul and make me feel a part of this earth.  There are so many places left to explore with the person that I love the most.

 

I really hope they say yes, I really, really miss my life and all it used to be.

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