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.
I thought taking medication was becoming oppressive with heart failure. It seems to me like I am taking a lot of medications. In general, each day I take 2 or 3 over the counter pills, 4 prescription drugs and Vitamin D once or twice a day. After the heart transplant I will take up to 15 prescription drugs almost all of which are new to me. This count doesn’t even include drugs I might have to take if I have a donor who is Hepatitis C positive. (Yes, it is possible that I will have a Hepatitis C donor, but with drugs, the condition is very treatable).
A number of the drugs are immunosuppressant drugs. These drugs are important because they help to assure that your body does not reject the new heart. You see, the body tries to protect itself against invaders and this is how it could view a new heart. The job that the doctors and I have is to make sure the drug and I convince my body that the new heart is just part of the Mel team and not a space invader. I will have to take these drugs for the rest of my life. I like the way the heart transplant notebook puts it: “For the rest of your life, you and your doctors will trick your immune system so it does not recognize the new heart as something you were not born with.” I view this as the ultimate, life-saving charade.
Alas, the immunosuppressant can have some grody side effects. One of them is fungal infections of the mouth and the throat. I will need to take a lozenge to prevent this from happening. I will also take something to prevent a viral infection known as cytomegalovirus. This term just rolls off my doctor’s tongue. Of course, I had never heard of it before, much less had reason to attempt to pronounce it.
According to the Mayo Clinic: “Cytomegalovirus (CMV) is a common virus. Once infected, your body retains the virus for life. Most people don't know they have CMV because it rarely causes problems in healthy people.” If this virus is so common, why have I never heard of it – or its acronym? It sounds like the stealth virus. It lurks around inside you, but does not cause issues in healthy people. So, why do you have to take a prescription drug to prevent CMV?
It is that word “healthy” that is probably the key – in this instance helping a recipient remain healthy. CMV will definitely become a concern for me. As the Mayo Clinic points out: “For people who have weakened immune systems, especially people who have had an organ, stem cell or bone marrow transplant, CMV infection can be fatal.” I have strived for the last 7 years to avoid a fatal consequence. Sign me up right now for Valganciclovir, the drug used to prevent CMV.
Another side effect of one of the immunosuppressant drugs is that in can cause mood swings. Hopefully, this will not happen in my case, but if it does, humor me. If you had to deal with all these grody side effects, you might be a little cranky too!
The list of drugs includes a statin to help lower bad cholesterol. Right now, to my knowledge I have no cholesterol issues and have never taken a statin. I need to ask if the doctors are trying to proactively prevent an issue with statin that might result from the transplant. This may explain why the pharmacist said that the herbal teas I have been drinking are definitely forbidden going forward. A number of them impact statins.
The next drug on the list raised my eyebrows. It is Potassium Chloride ER. The description of this medication is that it is used to “treat or prevent low amounts of potassium in the blood.” I’m going to have to quiz the doctor and nutritionist on this. Is it necessary for me to take this drug? Why can’t I just go back to eating all those tasty fruits and vegetables that were banned from my diet because they put too much potassium in my blood. I’m talking about brussel sprouts, asparagus, potatoes, butternut squash, artichokes, avocados, etc.
These are the drugs and conditions that stood out in the post-heart transplant phase. As you can guess, each drug on the list the heart transplant team gave me is critical to life and heart health. I will need to muster all my organizational skills, pill boxes and iPhone reminders to make sure I am right on target taking each pill at the appointed time every day.
In addition, there are other rules I will have to comply with to make sure that the new heart stays healthy and keeps me on this earth for a long time to come. Some are just rules for the first three months. One rule, which will be kind of fun to enforce is the one that says I have to be a passenger in the back seat of a car. I immediately guessed the reason for this rule. The front seats are equipped with air bags. If an air bag should deploy, the damage to my chest and heart could be catastrophic. To me it will be like having a chauffeur. To my sister and friends who take me places, I’m sure it will be more like driving Miss Daisy.
If I can’t sit in the front seat for three months, I obviously cannot drive my car for three months. The reasons for not driving include not just the air bag issue but the fact that I’m still recovering from a dramatic surgery. Of course, as the tv stations warned us during the onset of COVID and the shutdown, you need to drive the car for a while once a week to keep it in good repair. My sister will take the car with her when she returns home so that she can take it out for a spin each week.
The second 3 month rule is I have to wear a mask for three months after the surgery. As you can imagine, the COVID mask mandate actually produced a benefit because I now have plenty of masks can continue to wear throughout my recovery. This means even if the mask mandate is lifted, I will continue to mask up. I know there are people out there who think wearing a mask has become a political statement. Trust me, if I had something to say about politics, you’d hear it loud and clear coming from my mouth, mask or no mask. This is purely a health precaution and one I will comply with faithfully.
Then there are a few rules I will apparently have to follow for the rest of my life. The first is I can never have any fresh flowers. Someone asked me what the reason for this is. I do not remember much discussion of this, but I told my friend I think it has to do with the fact that flowers are grown in dirt, and bugs and animals come into contact with the flowers and may introduce a variety of germs. So, to cut down the risk of infection, no fresh flowers. The alternate (and completely facetious) reason I gave my friend is perhaps the American College of Cardiologists had a falling out with the floral industry!
The next apparently forever rule is I can never again eat at a buffet (which also includes salad bars). Again, the reason appears to be that a buffet – where people reach in and get food – is a breeding ground for germs. This brings up an interesting question. I am scheduled to go on a cruise in December 2021. On previous cruises on the same cruise line, we ate breakfast and lunch often at the buffet. What will I do in 2021? Well, I guess I could just eat a big dinner and subsist on protein bars for the rest of the day – just kidding! The cruise line always has a restaurant open. If my traveling companions want to eat at the buffet, that is fine. If I survived a heart transplant, I can certainly survive eating a meal alone in a cruise ship restaurant. Maybe I will meet some interesting people when I am on my own and strike up new friendships.
Some of the other apparently forever restrictions I can easily live with are: no raw meat, no raw fish, no raw eggs and no grapefruit. I have never been a fan of steak tartare, sushi, or any raw egg products. As for grapefruit, I have always hated it. I did have to wonder what makes a grapefruit different from an orange or a lime?
What I learned is some of the drugs a heart transplant recipient must take do not interact well with grapefruit or grapefruit juice. Here is what the website thetransplantnetwork.com says:
Transplant recipients taking cyclosporine, tacrolimus, or sirolimus are advised to avoid grapefruit and grapefruit juice. Research shows that grapefruit juice can block an enzyme in the intestines that is responsible for the breakdown and absorption of these medications, leading to increased amounts of these medications in the body, which may hurt the kidneys.
I have not owned a pet in my adult life. I think the closest thing I have had to a pet since I left my family home is my milrinone pump; however, in every apartment or condo building I have lived in, I seem to always make friends with the dog owners. I have often wondered if I should get my own pet. Well, the guidance says dogs and cats are okay but no poop scoop duty or litter box cleaning for life. What I take from this is it is okay to own a dog or cat, and to hire a dog walking or cat care service to do the things you are forbidden to do, but I should never ever take up dog walking as a career.
Of course, I need to avoid being around people who are sick. I also need to avoid people who have received certain types of live virus vaccines to avoid getting sick. This includes the mumps/measles/rubella vaccines (MM), Flu-Mist and Shingles vaccines. I do need to clarify this guidance as it says I have to avoid these people for four weeks. It isn’t clear whether this means I avoid people who get these vaccines for a four-week period after I have my heart transplant surgery, or for the rest of my life, do I avoid people who get these vaccines for a four-week period after they have received the live vaccine?
While I am in the hospital, the nutritionists and my medical team will give me comprehensive food safety training. I will have to use a thermometer when I cook to make sure meat and poultry and fish are sufficiently cooked. As you probably have guessed, I am not much of a cook, but suspect that I will have to pick up that skill for the rest of my life. This is why it is a good thing that my sister will be providing me care for a while. She is an outstanding cook and hopefully she can give me some lessons and tips. As I sometimes have difficulty boiling water, she might find this chore more of a challenge than dealing with the consequences of immunosuppressant induced mood swings!
As you can see, there are a lot of new forever rules and challenging behavior changes post-transplant, but at the end of the day, it is just adjusting to a lot of new routines. I have many things in my favor to help me nail this. I take after my Mom, which means I have unending reserves of discipline, hope and most important faith to help me make any changes that are needed. I have many people like you guys who have my back as I enter this new phase. Thanks so much! Last but not least, I say to my old heart and new heart: Be strong my hearts, because our God loves us, and our God has our backs!
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.