My transplant evaluation was originally scheduled for 4 days, to our surprise they were able to cancel day 4 being that the only appointment scheduled was a heart cath which i had completed back in June. That was the good news, might go as far and say the only good news of the week.
I was able to post about Day 1 on social media but I will briefly run through it again as it pertains to what occurred on Day 3. We started the day with a lengthy blood draw followed by a 2 hour transplant class. The class was a general overview of what to expect throughout the entire transplant process including pre and post surgery. Most of the information we were familiar with although we did learn about how patients are classified once listed. If the team decides you need to be listed they will then assign you a status 1-6 (1 being the most needy, 6 the least). During the class, when asking questions they answered that our personal transplant coordinator will have better answers since they know the ins and outs of my case. They made it sound as if this was the most important meeting of the week.
As for Day 2 & 3, I barely made it out of the car at the end of the day. Day 2 was primarily filled with testing, CT scans, X-Rays, Ultrasounds, Pulmonary Function (Breathing test for lungs) followed by a meeting with my Social Worker and then my Dietician. My Dietician was the longest part as she broke the news to me that I need to get my BMI down from 35 to 31 by losing close to 50lbs. How?...well that's the question. See, I'm retaining fluid in my abdomen AND I can't exercise or do any kind of physical activity, I can barely make it through cleaning a round of dishes. Also, I informed her before I was diagnosed with Heart Failure I was on a strict 1500 cal/day meal plan for months but was not shedding any pounds. She informed me my sedentary body needs 1900 cal/day and that it's possible I was undereating. She also stated that bodies sometimes find a weight they like to maintain and that it can be extremely difficult to stray from that. The plan is to go back on the 1500 cal/day for a month and if no change we will go up to 1600 cal/day and if that doesn't work we will reassess all together. I will also be making sure I spend those calories wisely, all whole grain, less simple carbs, etc. I walked away from that meeting feeling positive about achieving that goal.
Fast forward to Day 3, the most extensive and exhausting of them all. I started the day with one of the longest echo's (ultrasound of the heart) of my life; I get them yearly. After the echo and an EKG I went to the appointment I was dreading the most, the CPET, the test that initially diagnosed my heart failure at the end of May, the Cardiopulmonary Stress Test aka CPET. I had to do this test at 60 RPM's which was much higher than my last test so my legs started to feel fatigue almost immediately. I lasted 10 minutes and as soon as I stopped pedaling my entire body gave out and basically fell off the bike even though the nurses were there to catch me and were able to lay me down. I literally had no use of my muscles, even in my hands. After about another 10 minutes my body finally started to return to normal. The results? Well not what we were expecting. My max VO2 dropped from 11.3 to 10.3 within 3 months time. We were all expecting my test to improve slightly because I am now at sea level as opposed to 5000ft in elevation. That was not the case. Just so you know a normal VO2 level is considered excellent in females if it's greater than 35 and poor if it's below 21.
After all the testing, the plan was to meet the surgeon and then my transplant coordinator. The surgeon was...well a surgeon. He rarely made eye contact, just went through the steps, wasn't very informative or personable but that's why he's not my social worker. I'm sure he is a damn good surgeon just not great with people. We did discuss having only Right Ventricular failure and how rare it is to receive a transplant without failure of the left ventricle as well. There is a national governing body for transplants called UNOS and stated that the team will have to speak with them directly and plead my case to put me on the list if in fact they decide to add me on the list. And if they do decide to list me, more than likely I will fall into the bottom status, Status 6. This means I will likely need to wait until I am hospitalized before I can receive a transplant, which my cardiologist was trying to prevent.
So after meeting with the surgeon we were even more eager to meet my coordinator to put all of these pieces throughout the week together and see what she thought of my case but of course that never happened. She had something come up. We were never able to meet her and was told she would give us a call which also did not happen. I am still upset about this. Everyone we spoke with throughout the week mentioned how important our coordinator is and how knowledgeable she is about my case. This caused frustration and stress and a feeling of just being another number. I am supposed to hear from her by the end of next week. The transplant team will meet this coming Thursday the 19th to discuss and decide on my case which then the coordinator will contact me to inform me of their decision and what the next steps will be. I would have liked to meet with her beforehand in person to discuss her thoughts but it is what it is.
This was a very hard week physically and emotionally. The takeaways: 1) I need to lose 50lbs (open to suggestions) 2) It is very rare with someone solely with Right Ventricular failure to make it onto the list 3) At best I will be a status 6 meaning I won't be able to get a transplant until I become much sicker.
I'm not sure what will be next or what to expect. I'm too exhausted to think about anything anyways so we will wait until Thursday. Thanks for the continued love and support. Writing this was very difficult because my mind is not able to think and concentrate very well these days which is a side effect. I will update you all when I hear something. Help Fund My Transplant Process
