Did you wonder what happened to last Thursday’s blog post? Well, it was suspended after five days of hospital gowns, blood tests, alarmed chairs, ultrasounds, doctor rounds and countless interviews. I think I reached to many of you in the last two weeks to let you know that I had been admitted to the hospital for tests to determine if I was a candidate for a heart transplant, a left ventricle assistive device (LVAD), both or neither.
It was an odd time in the hospital. I would go hours without doing much of anything and then all of a sudden, have technicians wheel an ultrasound machine into my room at 11:00 p.m. to conduct a test. You would think that I missed out on a lot of sleep, especially with nocturnal blood draws. But the last few nights I was in the hospital I did get some restful sleep – although not 8 hours worth. Maybe the rest was due to some medication they gave me, but I think it was also due to the fact that I knew my medical health was in good hands. The end result was that last Thursday I was advised that the board at this hospital decided that I have been approved for both a heart transplant and the LVAD. The goal is to go straight to transplant if possible, but the LVAD is out there if we need it.
You’re probably wondering how did I get to the point that I needed to be hospitalized and approved for some pretty dramatic interventions? You’re probably remember that I was raving early in the year about how great I was feeling as a participant in the meteoric – heart failure study. Well, sometimes the health of a well-compensated heart failure patient can plunge down to the earth just like a flaming meteor. Friends, my heart health is flirting with that downward trajectory as I type this post.
I first suspected something was wrong about the third week of June. I wrote about it in a recent blog post. I noticed that after my colonoscopy, my weight creeped back up from that awful purge period which was to be expected. But then it creeped beyond and my clothes suddenly felt tight. I seemed to be short of breath during walks at times when I had not been in the past. I don’t know if it was a fatigue or an apprehension or what, but I felt very out of sorts. Then I had an echocardiogram and I was very apprehensive about what this test would show – and you do not get the results right away.
During the same week of the echo, I scheduled my cardio pulmonary exercise test (CPET) to end the meteoric study. I was required to get a COVID test in advance. In the hospital on my way to the test I ran into my heart failure doctor and I had a meltdown. I was fearful that maybe my heart was deteriorating again, and that fear came tumbling out in what were probably incoherent sentences. My doctor promised to find the echocardiogram results from two days earlier and see what was going on. Coincidentally, I was also scheduled to have the CPET that next Monday and to see him a week later. The planets were lining up so that he would have lots of data to interpret about the state of Melanie’s heart.
I actually walked a little longer on the treadmill during the CPET. But I was not optimistic that this was a good sign, because I have come to realize that it is not the time you spend on the treadmill that matters. Rather, it is how your heart is pumping blood and processing oxygen that makes the difference. When I saw my doctor, I learned that in addition to some data in the echo that were not encouraging, there was a marker in the CPET data that had worsened. This same marker had caused some concern a few years ago during a CPET. My lay interpretation is that the marker related to the steepness of the slope of the incline in the VO2 data. The highest it should be is around 35. A few years ago it was around 36. But all the other markers in the test were fine and I had good readings in a right heart cardiac catheterization performed during the same time frame.
I learned that when I did the CPET at the beginning of the meteoric study, the steepness of the slope was 44 and for the end test in July it was 55. This was not good, especially taken in conjunction with the echo results. The doctor wanted to schedule another right heart catheterization as soon as possible – even the next day. Since my family does not live in Northern Virginia, I did not know if I could get someone to take me with less than 24 hours notice. Fortunately, I was able to get my minister on the phone while the doctor was talking with me and he said he could transport me. The doctor was impressed that I could nail this down in a matter of a few minutes. I told him that is why I belong to a church – beyond the spiritual connection you have a faith family that never lets you down. That is fortunate for me as my heart was beginning to let me down in a big way.
In fact, the doctor gave me a heads up that if the cath showed what he expected, he would need to admit me to the hospital. The purpose of the hospital stay would be to run some evaluations, and to perhaps experiment with a drug called milrinone, and to consider more aggressive interventions. The doctor was glad that I was able to come in the next day because the next possible window could be as far as two weeks away. He said he didn’t want to worry about me that long. He also said something to the effect that he wasn’t losing me!
The cath was performed around noon the next day and showed exactly what the doctor anticipated. There were some changes in the pressure in the lung area and the heart function had fallen to below normal. We needed to act now while my organs were still in good condition. Acting now meant trying this new drug milrinone while they also evaluated me to see if I was a good candidate for a heart transplant or a left ventricle assistive device, or both or neither.
You might wonder if I freaked out as they were wheeling me up to the cardiac intensive care unit. The answer would be no. When you have been seeing a doctor for 7 years in a clinic that says “heart transplant clinic”, it isn’t a mystery that some day in time, you might be needing a heart transplant. In fact, I have been trying to prepare friends and family for this possibility for the last 3 or 4 years. But when you have a doctor who is so committed to not losing you, well that goes a long way – maybe even all the way – to building a rock solid comfort level. That – and my faith in God.
My minister was able to come to my room in the cardiac intensive care unit to visit me. It was good that he was there because he had talked to my doctor and I was able to get his perspective on what the doctor observed in the cardiac cath lab that required me to be admitted to the hospital. He reinforced what I heard in terms of how my heart function had decreased. But like me, he also heard the optimistic view of my chances for a heart transplant or other intervention that would extend my life and make it more fulfilling. It also reinforced what I have known to be true for a long time. There is still something that God has planned for me to do on this earth. I just need some of the old Melanie energy back to do it.
I know you will find it hard to believe but my stay in the hospital – while often boring – was actually a good and comforting experience. I met lots and lots of people – doctors, nurses, lab technicians, social workers, residents and med students. I learned a lot about medicine, but more important, I learned that even in the midst of a time of turmoil and pandemic, there are lots of good and kind and compassionate people out there. Lots of people who don’t want to lose their fellow men and women. I’d say that is something we should praise God for and celebrate. I will share more in future posts about the time I spent in the hospital.
But right now, I just wanted everyone to hear from me that more than a week later I’m still very happy that my name has been added to the heart transplant waiting list. Yes, it is very major surgery. Yes there are many risks. But the risk of being Melanie with no energy because her heart is slowly dying is a much greater risk and dire outcome to me.
You may be surprised to know that I will still be out walking as much as I can (with a mask) and I will also be incorporating some new exercises into my routine. My heart failure medical team has told me that I need to be as strong as possible going into the transplant surgery. I also participated in my first on-line heart transplant support group. While the information in those meetings is confidential, I think it is appropriate to say that the common theme for those going in for any kind of transplant is that you need to build your strength before the surgery. As part of this effort, I will also be trying to build up my protein stores. This means my diet and my exercise will be even more disciplined and focused than they were before. I will also continue to attend transplant support group meeting to gain emotional strength from these heart and other organ warriors.
As you can see, I am doing everything I physically can to make myself strong for the surgery. I am also reaching out to God to make myself as spiritually strong for this surgery as possible. I welcome any prayers you can send up there on my behalf – prayers that my next hospital vacation will be with the goal of getting a new and long-term heart.
Melanie discovered that she had heart failure in 2013. She spent the next 7 years learning how to live with the condition, and how to achieve balance and personal growth. Then in October 2020, she received a heart transplant. This blog is about her journey of the heart.