When I was only 13, my kidneys quit working. My first kidney transplant lasted an astounding 31 years before wearing out due to its age.
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.
Read More From Patientslounge
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
Tell Us About Your Transplant
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Questions & Answers
Question: At what point does the doctor put you on dialysis?
Answer: 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.
Question: Can I keep my cat despite my long-term organ transplant?
Answer: This is a serious question for transplant patients. I got my cat about 13 years after my first transplant. At that time (in the late 80s), my doctor said I could get a cat if my husband emptied the litter box. You will need to talk with your transplant team to determine how to handle a cat with today's stronger immunosupprant meds. I'm sure something can be worked out.
Kristin Kaldahl (author) on August 04, 2017:
Congrats on your new kidney!! I wish you a lifetime of health. Our transplants are blessings that go beyond words. Thanks for taking the time to comment.
Eiko on August 03, 2017:
Thank you for you experience and was helpful. I hope my transplant kidney will last as close to yours. I'm coming up to two years since I received my precious kidney. I appreciate my kidney everyday!
Dr.A.M.NURUL AHAD on February 26, 2017:
I highly appreciate the advice given to transplant patients.
Simple but effective.Will help to boost up the moral and help to live a better life.
God bless all transplant patients and doctors who helped them.
Rajeswari on January 30, 2017:
very good motivation for me when i feel depression
James Artre on September 12, 2016:
Almost 22 years into my cadaveric renal transplant!
M P Ravindra Nathan MD FACC on August 11, 2016:
Thanks for your excellent advice and a great service to fellow human beings. I attest to everything you say because I myself am in my 22nd year after a kidney transplant from my loving sister. And my principles are exactly the same as yours. And being a physician I give similar advice to all my patients going for transplant.
Can you give me your full name and position and do I have your permission to quote you if I use any part of your article in a book I am writing about my transplant experiences? Thanks.
Kristin Kaldahl (author) on August 05, 2016:
It's my understanding that those of us who are transplanted now, are compliant with doctor's orders and do well for several years are expected to have very, very long-term transplants. I think the odds are very much in your favor.
There is an organization called the "Quarter Century Club." It's filled with folks who have had their transplants for over 25 years. Every transplant is represented. Many, many of the members are now senior citizens, living life with their families and playing with their grandchildren. You can find the Quarter Century Club on Facebook.
God's blessings to you!
Ma.Cristina Coronado(philippines) on August 04, 2016:
Thank you so much for all the information you've given to us.i got my kidney transplant last january 12,2007and until now i'm doing fine...I'm hoping that my kidney last forever... To grow old with my husband to see my grand children and probably to play with them...
Zoya on July 22, 2015:
Thank you, and you too!
Kristin Kaldahl (author) on July 21, 2015:
No. As the article says, there are still other antigens that play a role. Years ago when I got my first transplant, they only matched four. Now they match six. In the future, they may discover other important antigens and match more. However a zero match can do great too with the newer drugs being used, so it isn't as important as it was years ago when I got my first transplant. :) Congrats on your kidney!!! May you have a lifetime of great blood results with it.
Zoya on July 21, 2015:
That's amazing! I only matched 3 out of 6 with my mother.. My transplant doctor said matching 6 out go 6 is like winning a lottery! He also made it sound like in such cases people don't have to take immunosuppressants.. or may be I misunderstood him.
Kristin Kaldahl (author) on July 21, 2015:
No. I still have to take immunosuppressants. When looking at who gets kidneys, doctors also consider the genetic "match." They match six antigens these days, and I matched all six. It is a 1 to 100,000 chance. Here is an article that will best explain what a "perfect match" is. http://www.ucdmc.ucdavis.edu/transplant/learnabout...
Zoya on July 20, 2015:
Love your dogs and your outlook on life!!
What do you mean when you say "a prefect match" with your second transplant? Does it mean you don't have to take any immunosuppressants, like in case of identical twins?
(I had a transplant over a year ago from my mom.)
subash vajja on June 26, 2015:
Thanks man its very good information and i will follow as you say and you have a great time
Kristin Kaldahl (author) on April 06, 2015:
When I was first transplanted in 1977, all transplants took steroids. Because I was on them for so long, my body quit making its own steroids. Thus, I have to be on a small dose of steroids the rest of my life. I *think* most of the transplants done today at my clinic start with steroids but end up completely steroid free after six months to two years. I, personally, would not be worried about short term steroid use, but if I had the opportunity to go safely off of steroids now, I would. This isn't an option for me though.
Good luck to your daughter. The outlook for her is very bright as transplants done today have a great chance of doing well long term.
Karen on April 05, 2015:
My 14 year old daughter has started transplant evaluation having battled kidney failure for 11 years. I have heard of steroid free transplants and the benefits on the body. I am curious if you used prednisone or any steroids during your transplant and if you have any opinion on the issue. Thank you soooo much for the inspiration of your story and your faith.
Beatriz on January 05, 2015:
As a former kedniy transplant patient, I can concur that it will be a slow, daily process gaining your strength and energy back, Bob. JUST TAKE IT ONE DAY AT A TIME!!!! You're performing well, Buddy! KEEP BELIEVING IN YOURSELF AND GOD!!!! Coach.
Kristin Kaldahl (author) on November 16, 2014:
Congrats, Mary, on your transplant!!! I am so pleased to hear it. Take good care of yourself. :D
mary on November 15, 2014:
thank you very much for your encouragement, am a post transplant in
kenya transplanted five years ago and a mother of two young children I agree with all the ten points and shall tell our team to read your story you ar e a blessing thanks
Kristin Kaldahl (author) on November 05, 2014:
Congrats Salam!!!! Yay for you!!! Soon you will be feeling so good and ready to take on anything. Prayers for you and a full, happy, healthy life.
Salam on November 05, 2014:
Thank you very much for giving us such important information... I had a transplant a month ago and I pray to let it live forever...
kapilankapil on July 01, 2014:
More useful information..Thanks..
Kristin Kaldahl (author) on May 31, 2014:
Wow!!! You had twins while having a transplant!! That's just awesome. Congrats on 20 years!!! What a milestone. When you reach 25 years, consider contacting the "Quarter Century Club." They are a group of transplant recipients of all kinds who have had their transplants for 25 years or more. Often MUCH more. :D
Thank you so much for your kind words. Transplants and the struggle to keep them healthy is something we will always have to deal with, but you've obviously proven you're up to the job. May God continue to bless you and your family!
Ma. Theresa G Lopez on May 31, 2014:
You're an angel sent from above to inspire and give strength to transplant recipients..and I am one of them. I strongly agree that prayer is the no.1 key to a successful and happy life after a kidney transplant. My faith has kept me going...I am a kidney transplant for 20 years now and I gave birth to 2 beautiful angels on my 10th year as a kidney recipient. Everything was made possible coz of my positive outlook and faith in our loving Father.:) thank you for sharing this with us...it lifted me up on my down moments which usually comes once in a while...but prayer is always the answer...pray hard when it's hardest to pray.:) God bless.
Kristin Kaldahl (author) on May 12, 2014:
Oh yes!!! He most certainly can!! And today's drugs are so much better than 35 years ago. It will be a bit of a journey, but he can have many long years of life left. :D
brynnn on May 12, 2014:
Thank y so much for your article. My husband has just been diagnosed with Iga Nephropathy with kidney function of 29%. His function is declining quickly. It isn't a matter of "if" he will need a kidney it is "when." I am so scared of losing him. Reading your article made me feel like he could live quite awhile with a transplanted kidney.
Kristin Kaldahl (author) on October 20, 2012:
Thank you Manoj!! I appreciate you reading my hub, and may God bless you too. :)
Manoj Padmanabhan on October 20, 2012:
Quite a useful site. Lots of valuable information and I feel highly positive. Thanks much. Keep up the good work. May God Bless you with a long quality life.
Kristin Kaldahl (author) on September 08, 2012:
Thank you so much!!! I do believe it's important to be active and LIVE - not just survive. :) Thanks for reading it. :)
Shelley Watson on September 08, 2012:
As innerspin says you honour your donors by living such a full and rich life. Well done, I admire you and your achievements. Voted up and across
Kristin Kaldahl (author) on August 30, 2012:
Oh, thank you!!! I hadn't even thought it would be good advice for other patients, but I think a lot of it would. I really appreciate the comment about my donors. I've never met their families, but of course, think of them all often. :) Thanks for dropping by!!
Kim Kennedy from uk on August 30, 2012:
Oh, wow, how fantastic is this? You've provided immensely important information for long term patients of all kinds. Your donors would be proud, you are showing them respect and then some. I'll have to read back throught your hub again, it's brilliant. I'm not a transplant patient but the pointers are transferable to other situations. I will print this and show it to the transplant co-ordinators at work. Thank you so much.