Looking for the magic bullet

I feel a bit down today.

 

The past two weeks have been stacked full of appointments, tests and procedures as part of my Heart Transplant Assessment, I have had something booked almost every day and I’m tired.  I still have a few more tests for next week so almost done and a meeting with the Heart Transplant Clinic again,  next up will be a number of vaccinations that quite frankly scare the shit out of me.  My heart can be so easily aggravated and I worry that introducing the vaccines into my body on a rapid basis will set me up for shocks…but I can’t go on the list until they are completed.  It’s a catch 22.

 

The scariest of the procedures was a Right Heart Catheterization where they put a scope into the right side of my heart through the jugular vein in my neck to determine how well the heart was pumping and to measure the pressure in the heart and lungs.  I was awake for the procedure so when my heart rhythm started to go wild, I could feel panic set in.  Prior to starting the procedure, the surgeon put a large magnet over my device so that it wouldn’t unnecessarily shock me and to help them control the situation to some degree.  It’s such an unsettling feeling to have your heart beat so erratically, I heard the Doctor tell the person operating the scope to watch my rhythm after he heard me say “Oh my Gawd”, they slowed down and my heart seemed to settle down.  The procedure took all of about 20 minutes and when it was through, I told the technician that it was one of the coolest but yet horrifying things I could remember having to go through.  Within an hour I was sent home with a long list of instructions in case the wound started to bleed again.

 

I also met with a surgeon, his job was to look at my case to see if I would be a good candidate for surgery.  One of the big discussions has been my weight, I am and always have been a big girl, very muscular but reasonably fit, despite that, he thought I would be.  It gave me some relief for him to say that but they have also expressed concern that it will take longer to find me a suitable donor heart.  One thing he mentioned during our meeting was that there was a 2% chance that whatever is causing my arrhythmia now could reoccur in the new heart.  I was stunned! I thought I was looking at the magic bullet that would make this all ok so I could get on with  my life and I realized then and there that there probably isn’t one and it was about as good as it was going to get.   He also asked me to think about how many shocks a year would be acceptable to me, he said that it may be a reality that I would be stable for awhile then experience a little “storm” like the one I just had with three shocks in two months.  Thinking about this lately, I realized that in the 26 months that I have had my ICD, I have had 31 of those shocks, that’s a little more than one a month…that is unacceptable.  The shocks are so random, with no warning how am I expected to put them into the back of my mind and carry on and live a normal life?  It’s more confusing now than ever, just when I thought having a new heart would lend some predictability to my situation, a little tidbit of information changes the entire game.

 

I guess that thankfully for me, I have an awesome team of doctors working to try to decide what is in my best interest and they have a whole community of international doctors they can go to for ideas in my very difficult case.  There are a couple of other ideas floating around, things they would like to try before giving me someone else’s heart and I am quite willing to try them, but in the end, it means more time in limbo and more time away from my productive life and I don’t like it one bit.  It makes me sad.

 

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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.

Heart Transplant?

If it weren’t for my life threatening arrhythmia, I would be perfectly healthy.  OK, I could stand to loose some weight, but other than that I am reasonably fit and active and I eat good food.  Gone for the most part are my junk food days, I have slowly removed much of the bad stuff from my diet over the years, realizing that it wasn’t worth the headaches and jittery feeling that much of it left me with.  I still have a few vices, but slowly I am whittling them down.  Since my Sudden Cardiac Arrest, my heart just doesn’t seem to want to calm down, other than the 14 months of stability I enjoyed up to June 2, since that time, I have had 3 more events  One of them corrected itself just 2 seconds prior to shocking me and then two of them just recently within a week, so for those of you keeping track, it’s 32 events, 30 legitimate shocks from my device.

My Electrophysiologist referred me to the Pre-Heart Transplant Clinic because there is nothing more that can be done for me.  I have tried all the medications that can be tried, they have done all of the procedures that can be done and performed all the tests that can be performed,  eventual transplant is my only option.  To me, it’s overwhelming to think that it has come this far and it’s very frustrating on a personal level because I have done all I can to ensure that I stay shock free, despite being the perfect patient, nothing makes any difference.

Thankfully the wait for clinic wasn’t a long one, on August 11, I met first with a very nice nurse for an informative “teaching session” and to discuss my medical history.  She gave me a folder full of reading material and we discussed my heart and the impact my arrhythmia has had on my life, we talked about my physical health, my mental health and discussed what resources I have managed to access to help both and what possible resources she could refer me to going forward.  Much of the information that she had to share didn’t apply to me since my case is “outside the box”, you see, as a rule, people only get new hearts when theirs in in failure.  Many of the people she sees at the Clinic are people with advanced disease who can barely walk, have problems breathing and have lots of chest pain, these people have a low ejection fraction, mine is 65 and within the normal range.  For the first time, I realized what impact the shocks were having on my body and she told me that if they continued to happen, my heart too would eventually fail and my ejection fraction would start to fall.  Their goal, and rightly so, is that their patients hold on to their own hearts for as long as possible, this clinic helps people manage their illness and then the doctors step in when the window of opportunity starts to close and they give them a new heart.  Since my case is not part of the norm, I am really not sure when that opportunity will be for me, you see, they rely on a formula and they don’t have one for my situation, so in my case, the decision will be made when they have all of the information and test results and it gets presented to a committee of doctors whose sole purpose is to vet patients and their eligibility for a transplant, it takes about a month and I would have lots of hoops to jump through to move forward.

In order to officially go on the transplant list and along with all other tests they will perform, on their end, I will have to make arrangements to have a pap smear, a mammogram, a TB skin test and see a dentist for a check up to make sure that my teeth are in good form.  I will have scans on all of my arteries to make sure that there are no blockages, blood work to ensure all organs are functioning properly so that complications during the surgery can be avoided.  People who have a transplant go on drugs to suppress their immune system and they are susceptible to infection and certain types of cancer, there is a chance of stroke during or just after the surgery.  There will be 10 to 12 medications that I will need to take for the rest of my life including anti rejection drugs.  Organs are matched by body size and blood type, not by gender, race or age.  It’s all so interesting and overwhelming at the same time. 

We meet with the transplant doctor tomorrow at 9 am and we will have more information.  I have absolutely no idea which way this will go, all I know right now is that we could have a very important decision to make.  I know that I am in good hands and I trust that the right decision will be made by the doctors in charge of my care.