I was really happy to when I was discharged from the hospital on October 23, 2020. It had been nine days since my heart transplant, but I was able to get up and walk around. It was nice to be home, but a little scary after 9 days of intense monitoring by doctors, nurses, various technicians, and a bunch of machines.
The discharge papers noted that I had 23 drugs to pick up and take home with me. My sister placed the drug bottles on my kitchen counter, and at various times of the day, we would go through a very conscious process. She would read the list provided by the transplant nurse and take out the required amount, I would double check the amount against the list. Then she would hand me the pill or the medicine cup with the liquid medication and I would take it.
The liquid medications were disgusting. The first was Nystatin, an antifungal medication used to treat conditions like thrush. I had to take it four times a day. In the hospital, there were different views on how to take this drug. Some nurses told me to swish it around my mouth and then spit it out. The majority told me to swish it around my mouth and then swallow it. I followed the majority rule, even though the taste was unpleasant.
But even worse than Nystatin was Mepron. Mepron, also known as atovaquone, is an antimicrobial medication used for the prevention and treatment of pneumonia. It has a bright yellow color. One of my nurses compared it to yellow titanium paint, except I would venture a guess that yellow titanium paint tastes better. Thankfully, I had to take this medicine only once a day. It is very thick and often would stick to the side of the medicine cup. A tip I got from the nurses in the hospital was to put a little bit of water in the medicine cup before you add the Mepron. The water prevents the Mepron from sticking to the cup and gets it inside you.
One of the biggest concerns with a transplant patient is to make sure that the body does not reject the transplanted organ. Immediately following the transplant, I was taking substantial doses of three medications that would hopefully keep my body from rejecting my heart. According to the Unos Transplant Living website, these anti-rejection medications reduced my immune system’s ability to reject my transplanted organ. These drugs also allowed me to maintain enough immunity to prevent overwhelming infection.
Immediately following the transplant, I was taking prednisone, tacrolimus (also known as Prograf) and Mycophenolate mofetil (alco known as CellCept). The first challenge is to get the balance of the drugs at the optimal level. The second challenge is to deal with the side effects that all of these drugs have. Common to all of these medications are major stomach issues, to include loss of appetite and stomach ulcers.
A cath lab technician who had a kidney transplant 5 years ago told me that all she could eat for quite a while after her transplant was spaghetti with butter. Unfortunately, this and a wide variety of foods did not appeal to me. People felt sorry for me because I could not seem to find anything that I wanted to eat. The person you should really feel sorry for was my sister. She made wonderful meals, but the most I could eat were small portions. I felt happy if I could get anything down, but I know that was not much of a compliment to my sister and her awesome cooking skills.
Even if I could get some food down, I did not like the impact it had on my stomach. There is a reason you take Pepcid after the transplant. You are battling acid reflux and other stomach consequences that I do not want to mention in a blog. I kept hoping as time passed, things would get better. I started to lose weight.
One of the other anti-rejection drugs had consequences that caused something other than loss of appetite and stomach issues. I began to notice that portions of skin were peeling off my foot. I asked the transplant nurse, and she said that this was caused by prednisone. She recommended Aquaphor which I found was helpful in taking care of the issue on my feet. But then the same issue appeared on my hands. I began to feel like a snake shedding my skin.
I remember that during my transplant evaluation, I received a briefing on things that I could expect as a result of the transplant. The transplant team told me that prednisone could impact the condition of my hair. The notebook they gave me on transplant issues said that hair dye and tints could make my hair brittle and break off. What?!?!?!? No red dye?!?!?!? Everyone remembers Melanie as a redhead. But I decided that I could either have the color of hair I wanted, but the hair itself would be in really bad condition. Or I could have nice hair, but not the color I preferred. I chose to go gray and hoped that the condition of my hair would remain good.
I had attended some online transplant support group meetings before my transplant. I remember one transplant recipient said that prednisone caused pronounced mood swings. I do not remember that symptom early on in my recovery. Perhaps this is because part of my weight loss included the loss of mood. But stay tuned for another blog post that will discuss this particularly annoying side effect of prednisone.
My sister and I started to walk early in the morning. It seemed like I was doing well. I could not walk as fast as my sister, but I was walking pretty fast for a transplant patient.
Unfortunately, my blood work showed that my hemoglobin had dropped to a really low level. The transplant team sent me to get a blood transfusion. Transfusions last a long time. I recall that this one lasted about 4 hours or more. Unfortunately, my blood levels remained low.
I also began to feel some fatigue. I thought it might be due to the fact that I had no appetite and was losing weight because of some of my stomach issues. But the transplant team ran a battery of tests to see what was causing the anemia.
Stay tuned for the next post to see what they found.
My previous post on this blog site was published in October 2020. The reason for my year long absence from the blogosphere is that I received a heart transplant on October 14, 2020. I have been a little preoccupied since that time.
As you may recall from my previous posts, I was placed on the heart transplant waiting list in late July 2020. I had been told that because of some factors, including my blood type, a heart likely would be available soon. A transplant nurse told me to pack a bag so I would be ready to go to the hospital as soon as a heart was available.
I had heart failure for seven years before I was placed on the transplant list. I decided to learn about the transplant process about 3 years before I was placed on the waiting list. I had a feeling that at some point, my heart failure would worsen so much that I would need a transplant. I wanted to be prepared, although I wondered “Will I really be ready when the time comes for the transplant?”
Early in the afternoon of October 13, 2020, my question was answered. I received a call from a heart transplant nurse providing notice that a heart might be available. She wanted me to stay by the phone because she would be calling to update me.
My sister lives about 2 hours away from me, so I gave her notice. We decided that I should see if someone was available to give me a ride if I got the call to report to the hospital before she arrived. She would need to pack. Her husband would drive her to my condominium and drop her off so that she could take my car to the hospital.
I called my minister, and he was available to take me to the hospital. I told him I would keep him posted as I received updates from the transplant nurse. Shortly after that conversation, the nurse called to let me know that the heart was available and that a hospital room was waiting for me. I called my minister and he said he was on the way.
Once I got to the hospital, I was taken to a room. I changed into a hospital gown, and a hospital nurse took my vital signs. My minister was allowed to come into the room to stay with me, and after a while, my sister arrived. The transplant surgery was scheduled for the next morning. However, we were told that due to Covid restrictions, no one could be with me in the morning before the surgery. Visiting hours ended, and I said goodbye to both my sister and my minister. No tears at this time, even though it looked like I would be facing the surgery on my own the next morning. No problem. I just wanted to get the process started.
After they left, I remember that I was tested for Covid, and the result was negative. The rest is kind of a blur until the next morning. They took into the surgery area where I was greeted by a nurse who was very pleasant, which is what you need when you are facing transplant surgery. She told me that the rules were not as tight as I was led to believe. She said my sister could come and wait with me prior to the surgery. I called my sister, and she immediately came to the hospital.
When the doctors evaluated me for a heart transplant, I was confident that a transplant was the right move. But now I was about to go into the operating room. Did I cry, or was I afraid, or did I wonder if I had made a mistake? The answers to all these questions are no. My sister and I both remember that she told me she would see me when it was all done. We remember that I was very ready to move forward with the transplant. There were no tears or doubts or fear.
The first thing I remember after leaving my sister is waking up in a room with a bunch of nurses hovering over me and checking monitors. I remember feeling very hot. This is an unusual feeling for me, because I tend to be cold. I am always putting on sweaters or hoodies when I am home. Apparently, I was given a number of drugs after the transplant surgery and my temperature spiked. This explains the gathering of nurses in my room.
I tried to tell the nurses that it was so hot in the room. Sound would not come out of my mouth, and the nurses kept saying “don’t talk”. What I did not realize was that I was on a ventilator, so I could not talk. I tried to make motions to let them know I was hot. The nurses tried to figure out what I was concerned about, but also said “don’t move”. They came up with a number of interpretations of my gestures, none of which had anything to do with the heat in the room. I learned from this experience that I would suck as a professional charades artist.
I eventually fell asleep, due to all the drugs that were in me. I woke up a little later with two nurses in my room. I heard them giving me some instructions as they bent over me. They pulled something out from my throat area. I realized that they had taken out the ventilator. I felt no pain or discomfort as they removed it.
The next few days were spent monitoring my wounds, introducing me to all the meds I would be taking, and introducing food back into my life. There were two tubes in my stomach that were drains, and a Foley catheter to take care of the urine. And, there were the ever popular blood draws.
One thing I learned in the transplant process is that my bodily functions would become a subject of great interest to every doctor and nurse I saw. I felt like a toddler again, because the medical folks were so happy when I could pee or poop. However, I also understood that it was necessary to monitor these functions to make sure that my body was returning to normal. I decided it was time to just put dignity aside, and to praise the Lord that I was alive.
Of course, my sister came to visit me every day. As I recall, because of Covid, I was limited to one visitor each day between the hours of 1:00 and 5:00 p.m. My minister and a few church friends stayed connected with me through texts and e-mails, and the minister sent an update to the church members. My sister sent updates to my family and to the friends I had formed from my former job, my neighborhood, and other organizations. Some people wanted to send flowers, but alas, a transplant patient is not allowed to receive fresh flowers.
Believe me, the e-mails and cards I received from friends throughout the time I was in the hospital were more than enough. I was able to talk to my church friends on FaceTime. I had lots of people letting me know how loved I was and how brave I was. Personally, I doubt the bravery part. I was just too stubborn to let heart failure rule my life any longer if I could find an alternative.
There is a picture of me attached to an IV pole during the transplant recovery. There are bags of drugs and at least twelve infusion boxes attached to the pole. The pole was so loaded that I suspect it weighed more than I did!
In the picture I was also napping. It was daytime, but if you have ever stayed in a hospital, you know you do not get a lot of nighttime sleep because people keep coming in to take your vitals and draw blood. Plus, I was only allowed to sleep on my back, as I had a major wound in the sternum area and lots of tubes. I am not a back sleeper, so I never got a lot of rest at night in the hospital. This would explain the impromptu catnaps during visiting hours.
As I progressed during my first week in the hospital, a team from the rehabilitation services department came in to show me the best way to get in and out of bed without disrupting the big wound around my sternum. We also went for walks in the hall. I think after a few visits, they were convinced that I had no mobility issues as I was walking well and keeping up with them as we walked the hallways.
One of the heart transplant doctors told me that my transplant surgery was like a textbook case. There were no complications, and everything went according to plan. I attribute this to the fact that I exercised as much as I could prior to the transplant, ate a good diet and kept my spirits up. The doctors had always told me that I would need to be at the peak of my strength when I went in for the transplant. Obviously, it worked for the transplant itself.
I was released from the hospital on October 23, 2020. My sister took me home, and started a 5 week visit to help me get through the first stage of my recovery. Everyone was convinced that I would bounce back in record time. Was that the case? Stay tuned for the next series of posts to find out!
As I have discussed in past blogs, patients with heart failure or other serious heart issues might do well to avoid a lot of drinking. Sure, I know that there is a theory out there that consumption of wine is good for the heart. But I think if you read a little about the studies that support the theory, the people they are talking about who can engage in the “moderate” consumption of wine are generally in good health. My good health hit a speed bump and crashed about 7 years ago.
That means in my case, while I can have alcohol, it is never at the moderate level of wine or alcohol consumption. First, I’m just not a wine connoisseur. It is not my drink of choice, regardless of the health claims I have read about red wine for about 30 years. I do like liquor, but I have learned that especially with heart failure, I need to avoid having alcohol become more than a once in a while thing. Or maybe having a drink each night on the cruise, but then returning to just drinks on special occasions when I get home. I can’t speak for other heart failure patients, but this works for me. and my doctors.
I know you are wondering what the Grinch has to do with heart failure. If you stick with me, I’ll make my case! By way of background (a phrase lawyers love to use!), I have now been on Milrinone since July 23rd of this year. What does Milrinone do for the heart? The definition I found for Milrinone on many websites, to include the drugs.com website, is this:
My heart failure doctor and a heart transplant coordinator have told me that Milrinone acts as a whip to keep the heart pumping. They have stressed many times that milrinone does not cure heart failure. It just keeps the heart going while another method of treatment is pending.
It seems to me when we confront a crisis in our life, it helps to think back on our life like a novel. We look at the chapters and we see patterns and themes we never noticed before. As we recall these chapters, we come to appreciate the treasures in our lives that we often take for granted. We pledge to write additional chapters revealing new treasures.
It may be things that are parents said to us or did that when we were teenagers sounded or seemed lame, but now resonate like the wisdom of Solomon. It may be things that occurred in our life that at the time seem like a coincidence, but now we realize were blessings God created just as we faced adversity, or as we needed strength to overcome a challenge that had blocked our path forward.
Finding out that you have been placed on the heart transplant waiting list is a major life change. It injects a great deal of uncertainty in your life because you never know when you are going to get the call that a heart is available. In my experience, the anticipation is always more intimidating than the actual event.
When it comes to a transplant, you are not only dealing with anticipating the surgery itself and how you will feel during your recovery. You are also anticipating what it will be like when you get the call. Even though I have already packed a bag and set aside an outfit to wear, I suspect chaos will descend upon me as I quickly get dressed, arrange for transportation to the hospital and grab my bag and purse.
I have been thinking about how my life changed with the onset of Covid and my milrinone treatments. I think I am turning into several cartoon characters from my youth. I thought I would share with you some humorous takes on how my life now resembles Looney and other tunes.
The first time I felt like I was on a Saturday morning cartoon show was when I began to wear a mask every time I left my condo unit. I had an assortment of disposable and cloth masks. It didn’t seem to matter which type of mask I wore. The mask would begin to creep up into my eyes and obscure my vision. It wasn’t long before I was my one of my favorite cartoon characters – Mr. Magoo!
Believe it or not, after a month I am still tracking down friends I worked with over the years to update them on my condition. Even though I have not seen or heard from some of these people for five years or more, I knew they would be interested.
Sometimes, the last e-mail addresses I had for them went were no longer valid. I have found LinkedIn to be a valuable source to find old friends. I used LinkedIn to locate a former colleague, friend, and boss I worked for circa 2010. He got back to me within 15 minutes. While he knew I had retired because of a heart issue, like most of my friends he did not know that my heart had entered the danger zone and would require a transplant. His first comment was about how much I had been through recently. He noted my positive attitude and then said something that appealed to my spiritual needs.
If you are a Tom Petty fan, you are familiar with a song that he wrote that seems applicable to my current point in life. It’s called, “The Waiting is the Hardest Part.” One iteration of the chorus says:
The waiting is the hardest part
Every day you get one more yard
You take it on faith, you take it to the heart
The waiting is the hardest part.
In countless blog posts I have complained about all the arcane rules related to living with heart failure, but after being briefed on the aftermath of a heart transplant, I realize that I was in the minor leagues. It was good training for someone who would eventually get a heart transplant. Once I get a new heart, I will graduate from the minor leagues to the major leagues in terms of and need to adjust to an even more structured life.
All I can say is that it is a good thing that all my personality tests show that I thrive on rules and regulations. Discipline and routine are my nicknames. People sometimes make fun of how rule oriented I can be, but it looks like I will have the last laugh. This is because discipline will become my best friend, and the thing that will keep me alive and well and laughing for a long time to come.
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.