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.
Yes, transplant anticipation anxiety is different than what I have experienced before, but like every other anxiety, it just means adapting the anxiety coping mechanisms I already have in place. Like so many other things in my life, if I can make it as routine as possible, then I can adjust. One routine task I perform when I am embarking on a new adventure, for example, a trip out of town, is I make lists. I have lists of what needs to be in my bag. I also make a list of what I need to do to make sure my condo is in order before I leave. The last thing I want (although I have kidded about it to my friends) is to worry as I’m rolled into the operating room that I might have forgotten to turn off my curling iron! Accordingly, developing a transplant call routine will help me overcome transplant anticipation anxiety.
I have also tweaked my daily routines to adjust my life and body to the drug milrinone, and to build my energy so I am at my peak of strength at the time of the surgery. My medications have basically stayed the same with two exceptions. The first is while I am still taking Entresto for my heart failure, I am taking a lesser dose than I was on prior to being placed on the heart transplant list. The second is a much bigger exception because it involves the drug milrinone. Milrinone is just one more drug to add to my list in one way, but it changes my normal routine because of how it is delivered. How so? All my other drugs I can put in a handy pill box and just conveniently pop into my mouth as either a morning or an evening dose. Unfortunately, Milrinone is not available in pill form.
No, as I have recounted here in previous posts Milrinone is an infusion drug. This means that I cannot use a pill box to keep track of when to take the drug. In some respects, it is easier because the drug is pumping through me 24/7. I don’t have to worry about forgetting to take a pill; however, it is much more high maintenance because I have to switch out the pump and pouch every two days. Plus, I don’t believe I have ever had a pill box beep at me!
The maintenance is a little more complicated than just swapping out the old pump/pouch for the new ones. The drug pouches are delivered to me once a week by courier, and the pouches must be refrigerated. This means that one night each week I am on standby for a call to meet a courier in the lobby and sign for the delivery. Then I need to get it get back to my unit as soon as possible and put it into my refrigerator.
The box with the pouches includes other supplies that I use to help me keep the infusion pump process humming along – like batteries, and alcohol swabs to keep my hands and any part of the connection tubing sanitized. There are other supplies that my nurse and I use to change dressings and flush lines. This means I have to inventory my supplies once a week to make sure I never run out of supplies. Otherwise, I might lose the energy boost of the Milrinone, and I risk an infection if I do not have the supplies to keep the medication line sterile.
Because the milrinone is refrigerated, I also need to msimilarake sure that each time I switch out th e pump and pouch, I take the pouch out of the refrigerator a few hours in advance to make sure it is at room temperature before I make the switch. I have found that the best way to make sure I don’t miss a pump deadline, or a deadline to flush a line, is to put a reminder on my phone setting out each task that needs to be done. Thank God for the smart phone because my muddled brain has not missed a deadline yet.
In preparation for the transplant, the doctors had to assure that I was doing appropriate health screening and maintenance. They checked my record to establish I was up to date on my mammogram, pap smear, colonoscopy, pneumonia vaccine and dental screening (and probably much more). Once I was released from the hospital, I was told to make sure I got the flu vaccine for the upcoming flu season. This is part of my annual routine, and I normally get the vaccine in August or September. I was able to get the current vaccine on August 25, but there is a new vaccine I had to obtain, one for Hepatitis B. I need this vaccine in case I get a heart from a donor who has Hepatitis B. My doctor’s office recommended that I get a vaccine known as Heplisav-B.
The first thing I learned was pharmacies in my immediate area did not have this vaccine. But they all had a vaccine known as Engerix-B. While both vaccines protect you from Hepatitis B, they are not similar. Engerix-B is a series of three injections given over a period of six months. Heplisav-B is a series of two shots given over a period of one month. As you can imagine, I would prefer to get the shots as soon as possible. I kept searching on the Internet till I found two locations in Alexandria, Virginia where I could get Heplisav-B. I received the first dose on August 28 and will get the second shot within the next week or so.
You may wonder what would happen if a heart becomes available before I have a chance to have the second dose. I asked one of my heart failure nurses this question. I was told that I should still have the first dose beforehand to keep the process moving. If I receive a heart that is NOT high-risk, then I would get the second shot of the Hepatitis B series while in the hospital. If I receive a heart that IS increased risk, I would receive a specific medication to protect me against Hepatitis B. Then I would finish the series on an outpatient basis.
I have been able to keep up my Covid era routine of early morning walking. The only difference is that I have some extra baggage added to my routine. I would say the weight of the pump with batteries is about 3 pounds. Carrying around this extra weight is the easy part. The more troubling aspect is the tubing that winds out of the fanny pack and up to my PICC line. Because I am so short, there is a lot of tubing that can get in the way. It catches on objects I pass by. When I get up in the morning, I have to remember to tuck as much of the tubing as I can into the fanny pack, but eventually it does start to creep back out.
Before I was on the heart transplant waiting list, I would go out to walk in a light rain and not be too concerned. Now, I have to be careful not to get the PICC line wet. Each morning, if I look out the window and/or at the forecast and see a sprinkle or a few drops, I go into full scale waterproof mode. I wear one of the plastic shower sleeves on my arm, I put on a windbreaker with full sleeves and I take an umbrella. If I see anything more than just a light mist or shower, I opt to stay in. Since our fitness room is closed due to Covid, I walk through my garage. This way, I do not threaten the PICC line, I just threaten my sanity with the monotony of lots of parked cars.
My diet is the same as before I was placed on the heart transplant waiting list; however, in preparation for all the food safety precautions I will need to take post-heart transplant, I am now using a thermometer to check the temperatures on meat and other products that I cook or microwave. The first thermometer I purchased was a dud. Food temperatures were about 30 degrees off, a fact which was proven when the thermometer registered the room temperature as 43 when the thermostat in my condo unit was set at 73 degrees. Happily, the second thermometer I purchased is reliable.
I am also studying the food safety booklet I received during one of my heart transplant interviews. The booklet is issued by the United States Department of Agriculture and contains useful information. For example, we all know not to buy canned food if the can has bulges or is dented; however, I learned you should make certain you clean the can lids before opening. All the tips are to help protect me from food borne infections, which can be deadly to a heart transplant recipient
There is some work that I was debating to do around my condo unit, but I have learned from the doctor that I cannot have any construction work done in my unit until after I stop taking the drug prednisone. This includes dry wall work or anything that could release dust and other germs into the area. This is a drug that suppresses the immune system, and I will be taking it for a while after the transplant surgery.
What this all means is I need to be careful and avoid any situations where I can be exposed to infecting germs and bacteria when my immune system is compromised. Again, the immune suppressants are needed because we must trick my heart into thinking that the new heart has been part of my old body for my entire life.
I suspect that throughout this transplant process, I will continue to be tweaking and adapting my routine; however, any tweaks and renovations I have been considering for my condo will be on hold for quite some time. On the plus side, planning for those renovations gives me something constructive to anticipate. What a blessing!
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.