Welcome to My Life as a Medium !
For the many of you who have asked about the transplant process (significant to my son, age 25, heart transplant patient) ~
I always thought that when Cameron was truly ready for a new heart, a doctor would simply state, "you're on the list!" ~ but I am far off! :) This is what has transpired for Cameron...
(born w/Congenital Heart Disease - Hypoplastic right heart syndrome with L-transposition, Tetralogy of Fallot, interrupted aeorta - basically single ventricle).
(First open heart surgery performed at 11 months of age. Next 2, same week, at 4 years old. Last open heart in January of 2000 at 7 years old "Fontan Surgery". 2 open chest surgeries performed, ages 12 and 16. Much more)
In February of this year (2017), Cameron was to have his pacemaker replaced. He's had his pacer since age 12 and has always battled with his top leads not functioning properly. When he was 16 years old, they went in and replaced those leads - but still, always a situation. (note: because of Cameron's condition and the proper pacemaker placement, both of these surgeries were 'open chest').
So I flew up to NY to be with him thru his pacemaker surgery only to rapidly find out (the day I landed) that after much consult, his doctors agreed that another pacemaker was simply band-aiding Cameron's future. His liver was found to be 'sick', as well. So I spent a week living at the hospital with my son while he endured extensive tests such as liver biopsy, cardiac cath, scans and more. After all, it was determined that he should consult a transplant hospital and team. I will never forget that conversation - with the doctors walking into his room, closing his door, just Cam, his father and I present. But those doctors (Strong Memorial, Rochester NY) were so loving - I will be forever grateful.
Due to Cameron's condition (and being a "Fontan Patient" - one of the specialized surgeries he had at a younger age), our only NY option would be Manhattan (a 5-hour drive from our hometown).
So, we asked about Florida (where I now live) and the options opened up pretty wide! Tampa, Miami and Gainesville...all within 3 hours of my home. **Blessed**
I flew Cameron down to me on April 23; his first appointment with Dr. Hardin (Tampa) was the next morning.
More blood tests, exams and meeting of other doctors ~ it was found Cameron also has PLE - so is also losing muscle due to the lack of protein in his body. Dr. Hardin changed a few of Cameron's medicines and found a 'nice cocktail of meds' which should help aid in his PLE as well as his cardiac condition. He also talked with us about the transplant team in Gainesville, Florida - stating they have better experience in dealing with Cameron's "Fontan" condition. A cardiac cath was scheduled for May by this Tampa team of docs - and so we moved Cameron to Florida as we found hope!
It was also explained to us that a patient needs to really exhaust ALL MEDICINAL MEANS first before going into a transplant option. When a patient receives a new heart, the timer begins to count down (yes, to death of the body). This is because it is the last and final option. If medicine can extend a patient's life - even for a few more months PRIOR to a transplant - well, then that's what you do. And again, THEN the 'timer' counts down after transplant. But I suppose we all have timers now, don't we? ;)
Moving from NY (and Cam's independence) to Florida ~
My father, step-mother, brother and son (Cam's younger brother) all helped Cam clean out his apartment and store items at the different homes (grandparents). My brother purchased Cam's car (and still lends it to him when he visits NY!). It was a very difficult time for my son but the family was fantastic!
I switched around his primary doctors, his address, his insurance paperwork and anything else that came up on this end. I quickly turned our guest room into his full-on space.
On May 25, his cardiac cath was again completed and it was determined that his liver was not any worse - holding steady as "stage 1 fibrotic....not cirrhotic. This was good. The new cocktail of meds was surely working. Cam was looking better and feeling good!
He had a follow-up appointment in Tampa beginning of June and that's when it was decided that meds are doing their job - it's time to meet the transplant team in Gainesville while things are 'quiet'. As they say, "You need to be sick enough for a transplant BUT well enough to go thru it".
On September 27, we finally met the transplant team at University of Florida Health - Shands Hospital in Gainesville, Florida. Cameron had an echocardiogram as well as much lab work done.
One of the first steps is this lab work includes a special anti-body blood panel to determine "to what degree" a patient is susceptible to rejecting a transplant. In Cameron's case, it was determined as "negative" which means....onto further testing! Still on track for transplant! And so, a 4-day transplant evaluation was then scheduled for November.
During the transplant eval -
Cameron was out-patient the entire week. Because we live 3+ hours from Shands Hospital, we drove up a day early and checked into our hotel for the week. They did give us a "Shands patient" discount - so it was about $80 per day. Nothing fancy at ALL - esp considering we'd hardly be there except to shower and sleep.
Cameron endured the following that week:
cardiac cath (yes, again)
liver biopsy (one had not be updated since Feb)
CT Scan with contrast
Psychiatry visit (to be sure he understands this process and can handle it, mostly)
Nutritionist visit (there will be follow-ups to this, as well)
Social Worker visit (conversations about affordability, living arrangements during surgery, post-transplant and beyond....so much information covered)
And now, we wait for this entire team (above) to present his case and determine one of 3 things:
1. Yes - he is on a transplant list. (for heart? for heart and liver?)
2. No - he is not on transplant list (could medical means continue until exhausted? Is the transplant seemingly to be too much for him to endure? - lots of reasons)
3. Need more testing/information.
We were told the Team gets together to present cases each and every Monday. So this process is handled quickly.
Other information we took away with us:
If he is determined to be on the transplant list ~
When the call comes in that there is a heart available for my son, we are to be at Shands within 3 hours for the surgery. This means bags will be packed and ready to go on a moment's notice.
Cam is expected to remain in the hospital up to a month post-transplant surgery. I will remain in Gainesville, as well. There are apartments affiliated with the hospital (2 bedrooms, furnished) for approx $1200/month. We will need it for at least 2 months.
After he is discharged from the hospital, he needs to stay at least a month nearby (hence the 2 bedroom apartment). They will be closely monitoring his (tens of) rejection meds thru blood work, etc. God forbid he gets sick or acquires a fever, it could be rejection. So this will be a very trying time for Cam. Only positive thoughts though!!! xoxo
After being allowed to go "home", he will still need to visit Shands every month - perhaps twice a month - for testing and check-ups. And eventually, these appointments will wean off to every few months or when needed.
I ask for prayers not only for my son - but for his brother Brandon (age 24), his little sisters Rhiannon, Aleah, Morgan, Olivia and Chloe and for his littlest brother Griffin. Prayers also for his father and step-mother (Cam is the oldest of now 8 children between our new families!) :) Prayers for all grand-parents. Prayers especially for his loving friend Nick (lives in Chicago).
In May, this Tampa team of doctors performed another cardiac cath on Cameron to look for themselves.