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.