When I went in for my cardiac catheterization on July 22, I knew that there was a good possibility I could be admitted to the hospital. I knew that an admission would mean that my heart had really tanked, and that the doctors needed to evaluate me for some aggressive interventions – like a heart transplant and/or a left ventricle assistive device (LVAD). I also knew that the doctor would want to experiment with a drug called milrinone.
This had not come as a complete surprise. I had known for a number of years that a heart transplant might be in my future and I had read about transplants and LVADs for quite a while. Accordingly, I was not freaking out when the doctor mentioned on July 22 that a possible outcome of the cardiac cath would be to evaluate me for a transplant. But reading up on transplants does not begin to do justice to what will have to happen to get a person on the waiting list. The process of everything I went through in that five days really brought home how serious this intervention would be – plus what a miracle it would be. It is a good thing that I did not realize the full ramifications on the night before the cardiac cath because sleep would probably have been impossible. Lord knows I needed my rest for the process that was about to unfold and the decisions I would have to make.
When the decision was made to admit me to the hospital, I was taken straight from the catheterization lab to a room in the cardiac intensive care unit. Once in my room, I was hooked up to monitoring station to check my blood pressure and other vital signs. My minister had driven me to the hospital for the cath. He came to my room with the two most important things in my life at that point – a spiritual presence and my purse with my iPhone. I needed to be connected to both God and my loved ones!
My doctor soon came in to go over the plan, which was to get me started on the drug milrinone to see if my heart could tolerate this drug. The doctor explained that when it initially developed, the hope was that the drug would cure heart failure, with no need for a transplant. Unfortunately, while the drug made patients feel better, it did not extend the life of heart failure patients.
I tried to find an article on the internet describing milrinone. I saw references to the fact that it is used as a short-term treatment for life threatening heart failure. It does not come in pill form. This explains why I had a neck catheter feeding milrinone into me 24/7 when I was admitted to the hospital. The doctors wanted to see if I had a good reaction to the drug, which would include lessening the pulmonary pressures that were observed during the cardiac cath. When I initially started on the milrinone, the monitors noted arrhythmias. The hope was that I would tolerate the drug in the hospital and be able to use the drug 24/7 through something called an infusion pump. This would be a short-term measure to help facilitate the heart’s pumping mechanism.
Of course, the next part of the plan was to begin an evaluation to determine whether I would be a good candidate for a heart transplant, or an LVAD, or both or neither. This would entail lots and lots of tests, procedures and interviews. If you think I am kidding, I can assure you I had bloodwork done several times a day for the five-day period I was in the hospital. The blood tests were more than just the basic metabolic panel and lipid tests. I was tested for a variety of other things like Hepatitis B, Varicella Zoster, Epstein Barr Syndrome, Lupus, HIV, MRSA, and on and on and on. I also had an ultrasound of my leg arteries, an ultrasound of my abdomen, and ultrasound of my carotid artery, a CT scan, and several chest x-rays. Some blood work and procedures were at night and early morning. All of these tests and the blood work would be factored into the evaluation and decision as to whether we should proceed with a transplant and/or LVAD.
The milrinone was making me feel a little more energetic, which might have been a double-edged sword given that I was in the cardiac intensive care unit. On the one hand, I think the goal was to have me up and about to see if the drug was helping my heart pump so that I could get up and move around easily. But I was in the cardiac intensive care unit and there were lots of patients who were in need of direct, intensive care. I, on the other hand was getting bored and wanted to walk around.
Walking around by myself was pretty much out of the question for two reasons: 1) the floor was a fall alert area and they were leery about letting me up and walking around on my own; 2) the milrinone was injected via a catheter in my neck and the drug bag was attached to a pole – which I believe also contained some monitoring equipment. So wherever I went the pole went – but not as a companion that could hold my arm and assist me if I started to fall. Rather, it was a bit of a hindrance that was holding me back. You can imagine how my patience level plummeted during this part of the hospital stay. Eventually I was moved to another floor. While I was still attached to a pole, one nurse was able to take me out for a walk, and my sister also walked Ms. Daisy around the hallway for about 30 minutes.
During this time, I also had an interesting interview with a doctor. He stood at the threshold of my room for a while just looking in at me before he came into the room. Then he walked over near the chair I was sitting in and crouched down. His first comment was something like: It looks like you have had a bad left ventricle for quite some time. All I could do was agree because I have been living the nightmare of a bad left ventricle for six years. He also told me that my right ventricle was very strong, which is something I am grateful for because I think it is the right ventricle and my other organs that have pulled the freight for the enlarged, slacker left ventricle.
I learned that this doctor was the Director of heart surgery. We talked about all the exercise that I have been doing and the efforts to keep my diet and fluid intake right on target. He seemed impressed. He told me that he almost did not come into the room because he figured I looked too healthy to be the patient with the bad left ventricle. I told him that this has been one of my complaints about heart failure or any other chronic illness. Sometimes you look too normal to be as sick as you are, and people tend to look at you with raised eyebrows when you tell them you have a serious illness.
I told him that this is why someone in the medical community should develop a virtual reality experience where a healthy person can walk into a chamber for four hours or so and feel what it is like to have heart failure. He said – I had that experience! He told me that he had been traveling in China up a very steep mountain on a train. As the train ascended higher and higher he got really short of breath and his nose started to bleed and he just felt really tired. I said something like – exactly. That is what it feels like!
He provided some specific information on the LVAD and the heart transplant process. As I recall, he was doing either an LVAD procedure or maybe it was a transplant later on that day. He basically told me I was a great heart transplant candidate, and he would have no qualms recommending me for either the heart transplant and/or the LVAD.
I mentioned that when this doctor came by, I was sitting in a chair. Even though I couldn’t get out to walk much, I often would sit in the chair to at least feel a little less like an invalid, and to see more of what was going on around me. The problem is that because of all that stuff that had to move with me when I sat in the chair (or when I asked for assistance to use the bathroom), sometimes the call button was inadvertently left out of reach. It would have been an easy thing to just get out of the chair and walk over and get it but for the fact that my chair was alarmed. Again, this was I was on a fall alert floor. I really did not want to have to call out to get someone’s attention to retrieve the call button. So I would figure out how I could strategically and quickly get up, retrieve the call button and then return to my chair before the alarm gained the attention of the staff. It was partly a challenge, partly a form of exercise!
Happily, a few days into my hospital stay, they took out the catheter and inserted a PICC line into my arm. I know – you are wondering what in the world the term “PICC line” means. According to the Mayo Clinic website:
In my case, the PICC line is the vehicle they use to infuse the milrinone into my heart. Once again, The PICC line insertion was another nocturnal procedure performed after 9 p.m. This caused me to comment to the medical staff that the hospital seemed to do some of their best work at night. There was no pain involved in the process, and I liked the music that was playing in the hospital room where they inserted the PICC line. The best part was that if they were putting a PICC line in me, I was one step closer to being released from the hospital.
But I still had a number of interviews and a few more tests before I would be released, as the doctors had to compile all the information needed for the board to consider my case. Notwithstanding all the work to be done, the medical staff hoped that I would be released sometime on Tuesday (my fifth day) – both I think to get me back to a normal life and to cease the endless questioning of “can I get up and walk” or “is it possible to take a shower”?
My sister and I began to have our doubts on Tuesday afternoon that this would happen – but warp speed kicked in. They wheeled me out of the room for the final test, a carotid artery ultrasound. While the nurse and I were waiting for a transportation employee to wheel me back to my room, the nurse checked the computer and saw that discharge papers had been entered.
So close and yet so far. Despite the discharge order, I had to wait for a visit from a home health care nurse who would be seeing me at my condo going forward. Her job would be to show me how to use the pump that would infuse the milrinone into my heart, to flush the blood draw line and how to dress and shower with my new friend, the PICC line. The nurse would not be able to see us till around 7:30 in the evening. My sister was able to get directions to a Panera in the hospital, and I got my last hospital dinner. Happily, the nurse was on time and we had a training session and set up our first home health appointment. My sister and I left the hospital around 8:30.
My hospital escapades lasted less than a week, and for a heart failure patient, I was remarkably spry and rambunctious for most of it. A number of the nurses commented that if I am accepted for a heart transplant or an LVAD, I will be seeing them again. Of course, I think we all realize that I will be much less energetic and perky for that visit. But I am looking forward to getting a new heart and moving forward into a total new chapter of my life – with renewed energy, new insights and my enduring sense of humor and faith!
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.