New to This Mommy’s Heart? Check out my story from the beginning here – My PPCM Story
On January 7th, one of my surgeons came to my room. This wasn’t a normal occurrence and I think everyone was curious as to why he was popping in. This is when he proceeded to tell me that there was a heart for me! Not just a heart, but a really good heart. I immediately started tearing up and my husband and parents started hugging each other. This was it, this is what we had been waiting for and it was finally happening!
However, nothing is ever certain with a transplant. The surgeon explained to us that he was 70% sure this heart would work for me. There would be no way to tell for sure until we were back in the OR and the heart was there for the team to examine. Although I hadn’t been too lucky during this journey, we liked our odds and were excited to move forward with the surgery which was scheduled for the next day.
Wait a minute, how did you get a heart so fast? Aren’t people on the waiting list for months/years?
It is true, there are a lot of people waiting on an organ transplant. Every 10 minutes another person is added to the list and every day 20 people die waiting on a transplant.
So, how did I get a transplant 34 days after being put on the transplant list? The first step was getting really, really sick. So sick, in fact, that I had to have my heart removed and replaced with a total artificial heart. Obviously, after my heart was removed, it need to be replaced with a donor heart. Next was a lot of paperwork for my husband and a lot of tests for me.
Some of the evaluation testing that I received was:
- Blood Tests
- Infectious Disease Screening
- Lungs Tests
- Urine Test
- Dental Clearance
- CT Scans
- Colon Cancer Screening
- Heart Studies
Luckily for me, aside from my crap (now non-existent) heart, I was in perfect health and passed all of these tests. Another requirement was to be six months clean of any tobacco, alcohol, marijuana and illicit drugs before being listed. My only vice on that list is alcohol and I only drink occasionally. However, since I was pregnant before all of this, my system had been clean for close to a year.
I also needed to secure commitment from one or two family members to provide a support system for me. During and after the transplant you need help with things such as transportation, discharge teaching and help at home. If you do not have an approved caregiver, you are not allowed to be actively listed.
Your case is then presented to the Heart Transplant Selection Committee. You will likely be accepted for placement on the list if you are medically able to undergo the surgery, have the social support and the financial ability to pay for the procedure plus lifelong medical costs.
I was medically cleared, I had my husband and other family members as a support system and was able to handle the financial responsibilities (thanks, Army). With all of these boxes checked, I was placed on the list.
The listing status has since changed but when I was listed the different levels were:
- 1A – Patient in hospital needing mechanical support or IV medications to support their heart function.
- 1B – Patient is at home with mechanical support or infusions of medications
- 2 – Patient is at home with oral medications
- 7 or inactive – Patient is not meeting one or more of the criteria that was discussed above regarding waiting list placement.
Since I was in the hospital on mechanical support (TAH), I was status 1A.
Once placement on the list is determined, the next step is matching you to a donor. Blood type, height, weight and other medical factors are considered to find the best possible match. I am A positive which is the second most common blood type and I am smaller than most patients. A larger person needs to have a larger heart but a smaller person can accept a small or large heart as long as it fits inside them. This gives the smaller person more opportunities to find a heart.
Hearts are only viable for about 4-6 hours after they are removed from the donor’s body. With this, I had a geographic restriction to contend with, unless it was a heart in a box (see below). After getting on the list, however, I was told I was the only 1A or 1B small blood group A patient in my geographical region.
The other main thing that they are looking at when matching is HLA (human leukocyte antigen). All of this was and still is pretty confusing to me. I’m going to pass the keyboard over to my husband for the next paragraph or so and let him explain….
Antigens are substances on the surface of cells that stimulate the production of antibodies. The body may reject a transplanted organ if the recipient’s immune system recognizes the organ as foreign, i.e. the recipient’s antibodies attack the antigens on the transplanted organ. It’s not easy to be sensitized to new HLA antigens, in fact 80% of people waiting for transplants are not sensitized. A couple of the ways it is possible to become sensitized is through pregnancies and transfusion of blood products. So it was a concern in our case and something we worried about with every unit of blood she received. If recipients develop antibodies from those events, it can drastically reduce the amount of organs available for transplant and some may not be possible.
They crossmatch the recipient and donor blood to check for a reaction before transplant because, if there’s a mismatch, it’s likely the donor organ would get acutely rejected. They checked a Calculated Panel of Reactive Antibodies (CRPA) weekly and amazingly (despite 2 pregnancies, 19 units of blood, and numerous other blood products) she only had weak antibodies against certain HLA and therefore was not automatically precluded from ANY organs. There were no unacceptable antigens and therefore the transplant team could look at accepting anyone’s heart if it met all the other criteria. If some recipients have lots of HLA antibodies, it can take them years longer than others to get accepted for organ transplants.
Here is a overview about the waiting list from UNOS:
To help get a heart even faster, I opted into higher than standard risk donors and heart in a box.
Higher Than Standard Risk Donor
When an organ is considered for transplantation, the medical team will try to get all health information about the donor. This includes:
- Getting all medical information they are able to get from family members and their primary care doctor
- Tests for viral infections (like hepatitis B, hepatitis C and human immunodeficiency virus)
This won’t eliminate all risk but it will greatly reduce the chance of getting an organ with one of these infections.
Higher than standard risk donors are defined by the Center for Disease Control as having a greater likelihood of being infected with hepatitis B, hepatitis C or HIV. Groups included in this classification are:
- People with high risk sexual behaviors as defined by the CDC
- People who have been newly diagnosed with, or have been treated for, syphilis, gonorrhea, Chlamydia, or genital ulcers in the preceding 12 months
- People who have injected drugs by intravenous, intramuscular or subcutaneous route for non-medical reasons in the preceding 12 months
- People who have been in lockup, jail, prison or a juvenile correctional facility for more than 72 hours in the preceding 12 months
- People who have received hemodialysis in the preceding 12 months
- People for whom little to no medical or social history is known
- People who have inadequate blood samples
These groups are still tested for all of the viral infections. The risk is that they contracted the infection in the past few days. In that case, the tests won’t necessarily pick up the viral infection if it is present.
After discussions with my medical team, I decided that the tiny risk was worth possibly getting a heart faster. All of these infections can either be cured or are manageable with a daily pill. After transplant, you are literally taking handfuls of pills multiple times a day so what’s adding another one to the mix. I think the biggest issue for people is the stigma of having one of these infections. Personally, however, this was a non-issue to me.
While working on this post I ran across this video. This would be an example of a higher than standard risk donor. She is actually known to have hepatitis C and they are still activity looking for organ recipients.
*I don’t love this video for a few reasons but it helps create a visual.*
Heart In A Box
While I was waiting for my heart, Heart In A Box was an option as part of a clinical trial. I was already in a trial with the 50cc TAH so, hey, what’s another.
I could go on and on about the Heart In A Box but I really like this video that sums it up pretty well.
So that’s it, those are the reasons why I got my heart so fast. We found out after my transplant that I had actually been offered several other hearts before my donor’s heart was selected to be transplanted. The total artificial heart allowed for my transplantation team to be picky and choose what they thought was the absolute best heart for me.
Well, this post has gotten a bit long. I’m going to stop this one here but next time we are on to heart transplant day!
1 thought on “The Way To My Heart”
Thanks for continuing to share your story.