- Disabilities & the Disabled
How to Prepare for and Survive a Kidney Transplant - Take charge of everything!
How to Prepare yourself and your family for a Kidney Transplant
As you have probably already noticed in my profile, I am a Kidney Transplant recipient.
Luckily for me my Brother, was a perfect match, and he gave me one of his Kidneys in 1996, and it is still doing well after all this time. Looking back, I realize that I have gone through a number of unique experiences, mostly good, but also, I am afraid, some that were bad.
I am going to list some things that a potential or even a recent Kidney transplant recipient, and especially the recipients family, should know and do. This information is forged by experience, and it's worth can only be measured by how much it might help you, now and in the future.
I caught a rare disease called Wegener;s Granulomatosis and went from being in perfect health to being in a near-death condition within a couple of weeks. I went through about eighteen harrowing months of experimental treatments and drugs, until a team of Doctors and Specialists, in three different states were able to pronounce my condition as stable.
My Kidney function was finally in a state (22% functional) that I was allowed to go back to work. But, within two years, my Kidney function had dropped to the point where a transplant was necessary ...... soon!
I went through the whole Kidney Donor process, Transplant Surgery, and Recovery as a novice to all of the in's and Out's of the process. I was very lucky and passed through all of this, with a great Kidney, and am still enjoying it now, over 15 years later. I hope the following information will help you be a prepared and knowledgeable Transplant recipient.
Microscopic picture of a section of Kidney Tissue
First you must Educate Yourself - and your Spouse about Kidney transplants
Before you go any further you need to educate yourself on your local state laws on transplants, as well as the differences in these same laws in neighboring states.
The laws and waiting lists for organs for different states vary dramatically, and you need to consult your two best sources of information on this. The first person that you need to consult is your Nephrologist, not your GP, but your Nephrologist.
As you have probably figured out by this stage in your disease, your Nephrologist is now your primary care physician, and all other medical professionals now defer to him/her.
Your second source of information is the web. You need to get online and search and read until you have exhausted the subject. One good article is from the National Kidney Registry. Yet anouther source is the National Kidney Foundation. There are many more, but these are a start for you.
You will need to be knowledgeable enough on all facets of your treatment in order to watch and manage your treatment; if something goes wrong, or even worse, if you recognize something being done wrong or sub-standard in your treatment during the transplant process..
The other part of your web searches should be to know all about your home state's transplant requirements, restrictions and support systems. Then you should compare them to your neighboring state's to know how they all stack up. 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 higher up the list.
Know the Brutal Facts about Your Condition
Talk frankly with your Nephrologist.
Doctios have personalities, just like you and me.
Some of them are open and up front with patients with the information about their health, and about the prognosis for the future.
At th same time, others are hesitant to tell the patient and their family all of the facts. Many of these tend to filter the worst information and some will even give bad news a positive twist, so as not to upset you or your family.
You do not need this!
If you are going to attack 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 need to ask your Doctor
Sit down in a special meeting, and bring a list of questions for your doctor. 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?
- Do I have anything else you are concerned about regarding my overall health, that I need to know,
- Will I require dialysis before I receive a transplant? If so, what type of dialysis, and where will it be performed?
- What drugs am I on now, and what exactly do they do, and what are the side affects of these drugs?
- What drugs will I be on after the transplant, what do they do, and what will be their side affects. Both Short Term and Long Term.
- What are the potential complications that might arise after I receive a transplant?
- Where will the transplant be performed, and what is that hospital's success percentage with Kidney transplants.
- What is the selected hospital's record regarding cleanliness, infections and in-house errors during surgeries, and during recovery.
- Who are the surgeons that you have selected for the surgery and why did you pick them.
- Most important, what are these Surgeon's success record with 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 his/her belt. You want experience and a high batting record.
- Inform your Nephrologist that from that point forward you want copies of all Blood tests and other data on you. You should read them, keep them in a history file, and learn to understand the abbreviations and names of the tests, and what all of your own personal data means.
- And if you are married, make sure your spouse is in on these meetings and also understands the questions and the answers. He/She will be your partner through this whole transplant process, and needs 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? 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. This includes, the Hospital, the Doctors, all of the different sub-contractors that take X-Rays, perform blood test, etc. are notified that they must be participating providers with your insurance company. You will be amazed at the number of bills that you will see from people and companies you never knew.
Book on Pre-Surgical Exercise
I was lucky because a doctor recommended this book for 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 and decide, is what type of Donor you will receive your new Kidney from. The three main categories 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 Kidneys survival is high.
Many transplants come from Cadavers that die, and either they were thoughtful enough to be an organ donor, or as sometimes happens, their family decided to donate their organs. Again, even with these, there must be sufficient matching characteristics for you to receive one of these.
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 and 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 alive, I was not on any kind of list, and my testing and surgery could be planned and scheduled. This really helped everyone's nerves as opposed to being on a list of people who are waiting for a matching donor, and have to wait for a phone call to rush to the hospital for surgery immediately.
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 experience. Includes hot of the press research. I used this as my personal health bible for the first couple of years after I became ill.
Surviving after the transplant Surgery
The reason for all of the questions I mentioned in this document, is that you must be in charge of your care.
The doctors will tell you not to worry about anything, and that your main job is to heal and recover.
Actually, you and your spouse must make sure everything is done the right way, through every step you take in this complex process of giving you a new Kidney.
And, I'm sorry but you can't be polite to the point that someone, through negligence or just mistakes, puts your life or the success of your transplant in danger.
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 and get it resolved.
Some of the most common problems I have experienced in hospitals are listed below. But, be aware that you may you may end up with your own list to add to these.
Bed Sheets- They are supposed to be changed daily. Hospital rules. This is done to reduce the chance for infections, if for no other reason. 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 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 even your room or bed. And, the Doctors 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 get ordered wrong, or switched far too often in hospitals.
Medications, Drips, etc.- When someone comes in to your room, and changes your drip bag, or drip rate, or gives you medications, ask questions. What are you doing, Why are you changing that, I don't recognize these pills, what are they? 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 spouse to pick up a box of doughnuts and give them to your main nurse to share with the others.
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 at arms length. You will be surprised how many people will visit a hospital room, with the Flu, a Cold, etc. and think nothing of coming over and laying a big smooch on you. Catch them as they come in to your room, and remind them of your condition.
Cleaning people- 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 equipment 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 manage the care you receive after your surgery. Every little thing you do adds to your probability of a successful recovery.
A Kidney Transplant from the Patients perspective.
The Kidney Transplant Explained
© 2009 Don Bobbitt