How to Prepare for and Survive a Kidney Transplant: Take Charge of Everything!
Receiving a Kidney Transplant Is a Complex Process
As you have probably already noticed in my bio, I am a kidney transplant recipient. Luckily for me, my brother was a perfect match, and he gave me one of his kidneys back in 1996—and after all of this time, the kidney and I are still doing well.
Looking back, I realize that I have gone through a number of unique experiences as I was treated by the medical industry. My experiences were mostly good, of course; but I'm sad to say that a few of my experiences were not just bad but dangerous.
I'm going to list some things that a potential transplant recipient of a kidney (or any other organ, for that matter), and especially the recipient's family, should know and be prepared to do. This information is from my real-life experience, and it's worth can only be measured by how much it might help you—now and in the future.
How It All Started
At the time, I was a normal healthy individual going about life without a care. But I caught a rare disease called Wegener's granulomatosis (granulomatosis with polyangiitis), and I went from being in perfect health to being in a near-death condition within a couple of weeks. This disease was, as I said, rare, and the survival rate at the time was around 96%.
Suddenly, I had all of these doctors and specialists working over the next 18-plus months to save my life. During this time, I was subjected to a number of experimental treatments, drugs, and even exploratory surgeries until, eventually, my healthcare team—working in three different states—were able to pronounce my condition as being stable.
After being declared stable, they found that my kidney function, though stable, was determined to be operating at a limited capacity (22% functional). I was allowed to go back to work, but the damage had been done. Over the next two years, my kidney function dropped to the point where a transplant was necessary—and urgent!
I went through the whole kidney donor process, transplant surgery, and recovery as a novice to all the ins and outs of the process. I was very lucky and went through the transplant process with a great kidney that I am still enjoying now, over 22 years later.
I hope the following information, gleaned from my own experiences, will help you be a prepared and knowledgeable transplant recipient yourself.
Lifestyle Plan for People With Kidney Disease
A step-by-step guide for people not on dialysis to improve their kidney health and avoid dialysis. Written by a board-certified renal dietitian with over 15 years of experience, it includes hot-off-the-press research. I used this as my personal health bible for the first couple of years after I became ill.
Educate Yourself (and Your Family)
As a potential transplant recipient, you absolutely must educate yourself on everything about the transplant process, including your state's laws, and the three phases of process: the pre-transplant preparation, the actual surgical process, and the life adjustments needed during recovery.
State Transplant Laws
Before you go any further, you should learn about your state's laws on transplants, donors, and recipient qualifications, as well as the differences in these same laws in your neighboring states. There are laws and regulations on such things as waiting lists for organs, donor qualifications, costs and insurance restrictions, as well as available support organizations.
These factors vary dramatically from state to state, and they can sway your decision on where to have your transplant performed. You do not want to be on a long waiting list in one state, only to find that a couple of states away, you would be much higher up on the list of recipients.
Consult your two best sources of information on these matters: your nephrologist and the Internet. As you have probably figured out by this stage, your nephrologist is now your primary care physician, and all other medical professionals now defer to him/her.
Do Your Own Research Online
Your second source of information is the web itself. Get online and search and read all you can find about your organ problem. One good source is the National Kidney Registry. Yet another source is the National Kidney Foundation. There are many more, but these are a great places to start.
Doing your own research is important for recognizing when things are going right, and more importantly, when things are going wrong. It's smart to be knowledgeable enough about all facets of your hospital treatment so that you are comfortable with everything that's going to be done to you.
Educate Your Family Too
As you go through this education process, make sure your spouse and other supporting family members also understand the process too. As your advocate, this will help them make sure you get the best treatment possible.
Know the Brutal Facts About Your Condition
Talk frankly with nephrologist and ask numerous questions. Doctors have personalities, just like you and I, and some will not like being interrogated, but they know that talking to and educating the patient is an important part of making the transplant process go smoothly for everyone. Some doctors are open and upfront with patients with the information about their current condition and prognosis.
At the same time, others are hesitant to tell the patient and their family all of the facts; these physicians tend to filter out the worst information, or they'll give you bad news with a positive twist, so as not to upset you or your family. You do not need this!
If you are going to confront your health problem, as you should, you need ALL of the facts—especially the bad ones. At this point in your life, you need brutal honesty and not some sugar-coated platitudes.
Questions You Should Ask Your Doctor
Sit down with your nephrologist, and bring a list of questions with you. This list should include not only your own personal questions, but a list of brief bullets of what you understand about your condition. I suggest the following as a starting point for your list:
- How bad is my kidney function?
- How soon must I have a transplant?
- Is there anything else I need to know regarding my overall health?
- Where will the transplant be performed? What is that hospital's success rate with kidney transplants?
- What drugs am I on now, and what exactly do they do? What are the side effects?
- Will I require dialysis before I receive a transplant? If so, what type of dialysis, and where will it be performed?
- What drugs will I be on after the transplant, and what do they do? What are their side effects—both short-term and long-term?
- What are the potential complications that might arise after I receive a transplant—both in the near future and long-term.
- What is the hospital's record regarding cleanliness, infections, and in-house errors during surgeries and during recovery?
- Who are the surgeons that have been selected for the surgery? Why were they selected?
- Most important: What are these surgeons' success records with transplant surgeries, specifically kidney transplant surgeries? You definitely do not want to be the training dummy for a new surgeon—or even one with only a few transplants under their belt. You want people with experience and a high batting record.
- Inform your nephrologist that from this point forward, you want copies of all blood tests and other data taken on you and your condition. You should learn how to read the abbreviations, names of tests, and results and understand what they mean. Keep them in a file as part of your medical history.
- If you are married, make sure your spouse sits in on these meetings and that they also understand the questions and the answers. They will be your partner through this whole transplant process, and they need to understand the process as much as you do.
- Does the hospital have facilities for your family, especially your spouse? Are there any charges involved for you for these services? Many hospitals now have rooms or special deals with nearby hotels for your spouse, as well as for you during your acclimation to your new kidney.
- If you have insurance, make sure that everyone involved in your transplant and recovery are participating providers. These people and services include, the hospital, the doctors, and all of the different sub-contractors that take X-rays, perform blood test, etc. You will be amazed at the number of bills you get after the surgery from people and companies you never knew or met.
Book on Pre-Surgical Exercise
I was lucky because a doctor recommended this book to me before I had my transplant surgery. If you didn't already know it, such major surgeries can knock your whole body out of whack. I was lucky enough to have read this book and exercised steadily right up to the date of my surgery.
Selecting the Right Kidney Donor
Another thing you will have to consider is what type of donor you will receive your new kidney from.
The three main types of donors are:
- Living Related Donor: This is someone genetically related to you that has sufficient matching characteristics. This is the preferred match to assure the highest probability of a successful transplant.
- Living Non-Related Donor: This category includes those great people that, although not genetically related to you, still have sufficient matching characteristics that the probability of the kidney's survival is high.
- Cadaver Donor: Many transplants come from cadavers—bodies of those who were either thoughtful enough to be an organ donor, or as sometimes happens, their family decided to donate their organs. Again, there must be sufficient matching characteristics for you to receive an organ from a cadaver.
I Received My Kidney From My Brother
I was lucky enough to have a brother that was a perfect match, and he was willing to give one of his kidneys to me. All of my immediate family were tested, but only he was a match, so I was really very fortunate.
Had he not been a match, or had he not been willing to donate to me, I would have had to drop to one of the other options. Because my brother was a living related donor, I was not on any kind of waiting list, and my testing and surgery could be planned and scheduled right away. This really calmed everyone's nerves; there would be no wondering of when it would be my turn to get a transplant, or waiting for a phone call to rush to the hospital for immediate surgery.
Caring for Your Transplant
When you wake up after your surgery, you need to realize one very important fact. You are no longer that person who was rolled into the operating room earlier that day. You are now a transplant recipient, and as such, you are very special in several respects. There will be changes in your day-to-day life that you'll need to acclimate to as you recover.
Your body now has a strange object in it, and your immune system will continually try to reject it. Because of this, you will need to take a combination of medications referred to as anti-rejection drugs. These medications are designed to suppress your immune system enough to prevent it from attacking your kidney.
The tricky part is that your doctors need to adjust the strength of these anti-rejections drugs to levels where your body won't reject the kidney but can still protect you from the outside world (i.e., fight off infections, colds, and and other diseases). This is a delicate balancing act that your nephrologist will constantly monitor as you and your new kidney go through life together.
Of course there will now be some limitations to what you can do while getting used to this new kidney in your body, most of which are to protect your kidney from physical harm.
Perpetual Blood Tests
Because your kidney's function is still fragile, your nephrologist will not only be prescribing you medications, but they will also perform regular blood tests check on your kidney's health.
Regular Office Visits
Your nephrologist will require you to visit them regularly for check-ups and to go over your blood test results.
Surviving in the Hospital After Transplant Surgery
A hospital is, by it's very nature, a place full of sick people. And because of this, you need to watch out for those instances where you and your new kidney could be jeopardized.
Recovering in the Hospital
Your doctors will tell you not to worry about anything and that your main job while in the hospital is to heal and recover. Actually, you and your family must also make sure everything is done the right way—through every step of your stay in the hospital. I'm sorry, but you can't be polite to the point that someone, through negligence or just mistakes, might endanger your life or the success of your transplant.
You must make sure that you are given the very best care, and if anyone in the hospital drops the ball, even if the problem is seemingly simple, you have to stand up to the hospital and get it resolved.
Problems During My Hospital Stay
Some of the most common problems I have experienced in hospitals are listed below. But, be aware that you may end up with your own list to add to these.
- Bed Sheets: They are supposed to be changed daily. This is a hospital rule. This is done to reduce the chances of infection—from leaking body fluids, if for no other reason. I have seen that the nurses and nurse aides will often skip this task if they think they can get away with it.
- Hand Washing: Your immune system will be suppressed by some very strong drugs when you wake up so that your body will not reject your new kidney. You do not need people that have dirty hands—or even worse, hands that have just left the room of someone with God knows what kind of disease—coming into your room and touching you or other items in your room. By the way, the doctors themselves are often the worst offenders. Just point to the sink and remind everyone of the hospital rules.
- Meals: Make sure you are scheduled for the appropriate foods for someone in your condition. Meals can get ordered or fulfilled wrongly, or they'll be switched far too often.
- Medications, Drips, etc.: When someone comes into your room and changes your drip bag or drip rate or gives you medications, you should smile and ask questions. What are you doing? Why are you changing that? I don't recognize these pills, what are they for? What is in that bag? These are all good questions—that you have a right to ask.
- Nurses and Staff: Know your nurses. They can make a big difference in your care. Chat with them, and get to know them quickly.You want them to feel like they are taking care of a friend, not just another face passing through the hospital room. Ask them about their schedule. Get your family to pick up a box of doughnuts or candies to give share with your main floor nurse and other staff members.
- Doctor Visits: After your surgery, your doctors and surgeons will visit you at least daily to monitor and manage your recovery. Have a list of questions to ask when they come in. They are not going to stay long in anyone's room unless you are prepared for them.
- Family and Friends: Keep them all at arm's length. You will be surprised how many people will visit a hospital room with the a flu or a cold and think nothing of coming over and laying a big smooch on you. Catch them as they come into your room, and remind them of your precarious condition.
- Janitors: OK, they clean things that are dirty. They may be wearing hospital scrubs, but they are not medical professionals to any extent. Make sure that they keep their mops, brooms, and other cleaning supplies away from you, your bed, and if possible, your room furniture.
- Cart People: Do not let the people that push carts around the hospital and deliver flowers, sell candy, bring books, or peddle any other items up and down the halls into your room. They could be a bigger danger to your health than the cleaning people.
I know that I have probably scared the hell out of you, but you really need to monitor the care you receive after your surgery. Every little thing you do can influence the probability for a successful recovery.
Transplants and the Immune System
The Kidney Transplant Explained
A Kidney Transplant From a Patient's Perspective
Transplant Patient Life Over the Years
The survival rate for the average transplant recipient is actually unlimited. As technology, techniques and drugs improve, the longevity of transplanted organs continues to increase.
Probably the most important things for you as a transplant recipient to do are;
- See your nephrologist as required
- Take your prescribed medications regularly
- Do not smoke and only drink the occasional alcohol beverage (talk to your doctor about this)
- Adopt a healthy, low-carb (little to no sugar) diet
- Develop a regular exercise program that works for you
I have found that over time, there are ups and downs as far as my health is concerned, but if I adhere to these standards I have listed, I have and can continue to have a healthy life.
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.