Ten Things to Do to Have a Long-Term Organ Transplant
When I was only 13 years old, my kidneys quit working, and I began dialysis. A very long story short, 36 years later, I am still going strong, even competing at the national level in a popular sport.
The secret to my longevity is simple. I've had two great kidney transplants, thanks to donors I will never meet. My first kidney transplant lasted an astounding 31 years before finally "wearing out" due to its old age. Before needing dialysis again, a second, perfect match transplant came just in the nick of time, and that transplant has been doing fantastic for three years.
People have asked me what the secret is to my transplants' longevity, so here are my top 10 things to do keep an organ transplant going strong for a long, long time.
#10 Watch Out for Viruses and Infections
Our immune system's job is to keep the body as clear and free of viruses and infections as possible. Left unchecked, bacteria and viruses would kill a human quickly. Fortunately, our immune system recognizes these tiny bacteria and viruses when they enter, and the immune system mounts an attack.
Because of this, transplant patients must take immunossuppresent drugs that keep their immune systems from "seeing" and attacking their transplants which are viewed by their bodies no differently than a virus or bacteria. A normal, healthy immune system would immediately see this new organ and begin an attack, causing the rejection and eventual failure of the organ.
So a transplant patient takes these immunossuppresent drugs to suppress his or her immune system to the point that the body will no longer view the transplant as dangerous. However, the patient is then left with a weakened immune system, leaving the patient susceptible to infections and viruses.
For me, I find the common cold takes two months to go away. People with normal immune systems can throw a cold off in a matter of a few days to three weeks. People with suppressed immune systems need to come to terms with their situation. An infection or virus that is easily cured in someone with a normal immune system can be deadly for a transplanted patient. It is a serious situation.
Because of this transplant patients must become germ phobes. Patients should learn how germs are spread and what steps to take to best avoid infection. People living with a transplant patient need to become germ phobes as well. A transplant recipient needs to wash their hands often, carry and use anti-bacterial solution, avoid crowds (especially during cold and flu season), avoid sick family members or co-workers, etc.
Do not be afraid of coming across rude if someone with a cold or flu sits or stands near you. Your health is more important than their feelings, and friends and family will understand your special needs.
Good hygiene, home cleanliness and simple common sense can keep you from contracting a deadly virus or infection. Talk with your doctor about symptoms of infection, and be constantly aware of this possibility. If you at all suspect an infection is starting, contact your health care team immediately. The sooner it can be addressed with antibiotics, the more likely the infection will not get out of control.
My germaphobe habits and adherence to infection symptoms have kept my transplants going strong.
#9 Develop a Relationship With Your Healthcare Team
One of the biggest mistakes patients of all kinds make is to rush through their doctor's appointment. Your health care team is vital to your care. You need to develop a working relationship with your team, and you'll need to maintain that relationship.
To do this, make sure you are ready for your doctor's appointments. Take with you a list of questions, any prescriptions you have questions about and an open mind. Don't hesitate to ask questions and take notes. Sometimes doctor's appointments can be very stressful as "bad news" is discussed. Our minds can shut down, and only a small percent of what the doctor said might be remembered. Notes or recording the visit can help minimize this. It may also be good to bring along a family member or friend educated in the situation to "remember" important details for you.
Be kind and respectful to the staff, but do get your questions answered. Be ready with the answers to their questions as well. And be honest. Lying about your diet, your pill taking habits, etc. will only serve to make the rift between you and your health care team greater. They usually know when a patient is lying. I have found doctors appreciate a well prepared patient eager to be educated on their specific health issues.
All this said, do not be afraid to leave a doctor if you feel you are not getting the care you deserve. Listen to your gut. Remember, you really are a customer. You are not a helpless patient without choices. Openly examine your reasons, and if the relationship isn't working or you feel you are not getting good healthcare, look elsewhere.
#8 Gather a Support System
Surrounding yourself with supportive family members has proven to help patients be healthier. Be sure to keep your life open to your family. In today's society, jobs can disperse families across the nation and world. Yet also with today's technology, staying in touch with these relatives who live far from us has never been easier. Make sure to keep the bonds of family tight as love and support are very important to maintaining a positive outlook and a healthy body.
But don't overlook friends. Even if family are a long distance off, friends can be developed around the corner. If your circle of friends is small, look for ways to expand it. Your transplant team may have a transplant patient support/activist program available that you can join. Instantly, you will have a group of people with something you very much share in common. Other places to find friends include churches, hobby clubs, through volunteering, work, civic groups, and more.
And don't forget our pets. Studies have shown that people with dogs live longer than those that don't have them. Pets of all kinds give companionship, love and are another heartbeat in the house during times when you feel alone. Adopting a pet is great way to save a life and in return be given longer life due to the devotion and loyalty your pet will provide. I personally love dogs, and have found them indispensable in my large support system. They are very much my furred family members.
#7 Live a Healthy Lifestyle
Many people might skip this suggestion, thinking it both a "duh" and also really not wanting to acknowledge their poor lifestyle habits. But don't ignore this.
Eating healthy, watching your weight and exercising are extremely important to long-term transplant success. Almost all of the long-term transplant survivors I have known are not obese. They are within their BMI (body mass index) for a normal, healthy weight. The medications we have to take to keep our bodies from rejecting our organs is already taking a toll on us physically. Why add the strain of extra pounds to the situation?
Developing a healthy lifestyle that doctors tell people without transplants to do applies to transplant patients as well. Talk with your doctors about your diet and about your exercise (or lack thereof). Discuss with them ways to start a healthy lifestyle and stick with it. Your doctors may be able to send you to a nutritionist or to a program in the hospital to help you get jump started on a new, healthy lifestyle that can take your organ transplant to the half-century mark!
Video Author Made About Four Years After Her 2008 Transplant
#6 Don't Just Live—LIVE!
Many organ transplant patients are used to being sick. As their organs failed, they may have found themselves bedridden or disabled. Long periods of inactive behavior may have caused a habit to develop.
Because of this lethargic lifestyle, even after transplantation many patients retain their sickly habits. Those I have known with long-term transplants defy this lifestyle of apathy and go out and grab life by the horns!
Successful transplant patients find activities they love, and they get involved with them. There is a difference between just living and being alive!! Find something that you really love to do and go do it! Whether that be a sport, volunteering, something in the arts, traveling, politics, gardening, fixing up your house or any number of wonderful activities, it's vital to get involved. Getting out, getting active and finding something that makes you feel, well, alive is exceedingly important.
LIVING for me involves doing a physically active dog sport. This sport is addictive, and I feel most alive when I am out running one of my dogs at an agility trial (see video at end). The sport is literally keeping me alive, physically fit, social and active. And, it gives me an adrenaline rush with each agility run.
Those who continue with their lethargic lifestyle may well find themselves with a shortened transplant. You've been given a second chance. Grab it and RUN!!! Possibly literally!!
#5 Educate Yourself and Ask Questions
So many times, patients are afraid to ask their doctors questions. One of your biggest allies in learning how to live healthy with a kidney transplant is knowledge. Your doctors are your best and finest access to this knowledge.
Be wary of the internet and information gathered there. It may be very good information, or it may be outdated or incorrect. Always run such information past your doctors before believing it to be fact. I have found the internet abounds with falsehoods about transplantation and post-transplant care. I have discovered this only by running things I have found on-line past my doctors, who have discarded it "old news" or completely false.
But while the internet is full of false information, I do use the websites I know to be accurate to get good information. The National Kidney Foundation is one site that will have good, quality information you can use to educate yourself.
Learn about all aspects of your organ transplantation. Knowing your pills, their side effects, how your reduced immune system can affect you, etc., will allow you to catch side effects, illnesses, and other issues before they become a problem.
#4 Stay Positive
Having a sunny outlook on life is paramount to living successfully with any disease. Studies have shown that from cancer to diabetes, those who are positive fair far better than those with a negative outlook. Renal, liver or heart failure is a hard diagnose, but there are treatments. Yes, these treatments will be lifelong and will require a lifestyle change for you, but life is still full and wonderful.
If you are having troubles with depression and are a transplant patient, talk with your doctors. This is a very common problem for many people dealing with chronic disease. Your doctors can help you find your balance and sunny outlook again.
#3 Follow Your Doctor's Orders
Being a compliant patient means you do what your doctors tell you to do. Being stubborn and ignoring your doctors' orders is not a sign of bravery, strength or courage, but instead is a sign of stupidity.
Your doctors know what can go wrong with transplant patients as that's what they do for a living. They've seen patients lose transplants, and they know why those transplants were lost. They've read studies. They been through years of training. They know much more than you do.
I've seen transplant patient after transplant patient lose those precious gifts just because they thought they knew better than the doctor or because they were stupidly stubborn and refused to do what the doctor ordered. If the doctor tells you to rest for two weeks - then rest for two weeks! If you don't, you might live to regret it the rest of your life.
If you want a long-term transplant, you simply do what your doctors order. If you have questions about those orders, speak with your doctors or get a second option, but don't ignore their orders.
#2 Take Your Meds EVERY Day
The second best thing to do keep your transplant going strong is to take your medications every day at the proper time. With today's transplants, the immunosuppressant medications are often to be taken once, twice or more a day. When we take our meds, we are keeping a proper level of that medicine in our systems. If we skip a pill or take it late, that level drops.
If the level drops low enough, our bodies will begin to recognize our transplants as the foreign bodies they are, and the body will begin to attack. This will cause rejection—and damage or possible failure—of the organ.
Taking the meds every day at the proper time is paramount in keeping the proper levels of these immunosuppessants in our bodies. Some of today's anti-rejection medications need to be taken several times a day. The times for these dosages must not be missed or late in order to keep a correct level.
I have found the best way to ensure that I don't forget to take my meds is to have a strong routine built around pill taking time. It becomes a habit, and habits are hard to break. Currently, I am taking Rapamune, Cellcept, and Prednisone as my anti-rejection medications for my kidney transplant, and I take different dosages of these pills in the morning and evening.
For my morning pills, I make sure my daily routine is exactly the same each morning until my pills are consumed. Every action from the time I wake up until my pills are in my mouth is the same each morning. For me, this involves getting up, letting the dogs out, getting my insulin out of the fridge, gathering my breakfast, getting something to drink and then heading to where I keep my pills. Then, I take my pills. After that, my routine can vary.
At bedtime, my routine also falls back into habit. Upon letting the dogs out before bedtime, I immediately go to the fridge for something to drink and head straight over to the pills. Upon taking the pills, I can again slip out of habit.
I have attached both my morning and evening pill taking to something that I must do at those times of days. The dogs must be let out, or the consequences will affect my carpets! Because I WILL be letting the dogs out, I can then slip into a habit of behaviors following the morning and evening dog potty time. These habits ensure my pills get taken and at the proper times.
If I know I'm going to not have my normal routine available to me because, let's say, I'm away from home, the night before I will take my pill minder and set it somewhere I am sure to run into it the next morning to remind me about my pills. For me, this is usually on top of my toothbrush and makeup. After taking my morning pills, I will immediately place my pill minder back somewhere that I'm sure to see it to remind me to take my pills that night, like on my pillow. Then at night, I replace it back on my toothbrush and makeup for the morning. In this fashion, even when out of routine, I always remember my pills.
Those needing to take pills throughout the day might find wristwatches with alarms on them helpful for remembering their pills at the proper time. I was on Prograf for a short time after my second transplant, and it had to be taken several times a day. The wristwatch alarm helped me remember to take my meds in the middle of the day when a "routine of habit" was difficult to develop.
As a Christian, I believe the number one thing to do to keep a long-term transplant is prayer and faith. Studies have shown patients who pray or are prayed for do better than others. Prayer is a great way to reduce stress, lower blood sugar, and relax. And for the believer, prayer is communication with a loving God. This communication builds hope, and hope is a mainstay.
I believe miracles do occur as my life is abundantly filled with them. God has worked through medicine to keep me alive for 36 years after my diagnosis of kidney failure. I see His hand in my life daily. I strongly believe that faith and the hope it generates are the most important parts of keeping a long-term organ transplant.
Some Transplant Statistics
- The first cadaveric kidney transplant was performed in 1950. Before immunosuppressive therapies, the patient kept the transplant for 10 months before rejecting. The transplant helped the patient's original kidneys recover, and she lived for five more years.
- Bill Thompson is the longest surviving American non-related kidney recipient. He was transplanted in 1966, and his still functioning kidney has survived for over 45 years.
- The first kidney transplants done between living patients were performed in Boston and in Paris in 1954.
- The Boston transplant was done between identical twins. The patient died eight years later.
- The Quarter Century Club is a group of organ transplant survivors of 25 years or more.
- Immunosuppressive therapies to keep the body from rejecting organ transplants was introduced in 1964.
- The world's first adult heart transplant was performed in 1967 in South Africa.
- Tony Huesman was, when he died in 2009, the longest surviving heart transplant having survived 31 years.
- The first liver transplant was performed in 1963 in Denver, CO, but short-term success wasn't achieved until 1967 when a patient lived for one year post-transplant.
This Video Was Created About Two Months After My 2008 Kidney Transplant
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Questions & Answers
At what point does the doctor put you on dialysis?
Each case will be different, I believe. Anyone with kidney disease needs to have a good, open relationship with their doctor and feel comfortable asking questions. I take a list of questions with me into my doctor appointments, so I don't forget to ask what is on my mind. If you are asking for yourself, you will need to discuss it at length with your medical team.Helpful 2