The intention of this post is to empower patients, their family and friends in Nigeria with information that will help them make the best decisions and have the best outcomes with kidney transplantation.
At the present time, if patient’s original kidneys fail, there is no known way to regenerate them and artificial kidneys are not yet available, so the only treatment options are dialysis and kidney transplantation. Kidney transplantation is currently the optimal treatment for kidney failure for patients that qualify. Most patients can live long and productive lives with a kidney transplant similar to that of people without kidney failure if they are careful, take their medications as prescribed, have experienced kidney specialists and perform the required routine testing. To have the best chances of success, take your time to find kidney doctors with experience taking care of transplant patients. Not all kidney doctors know how to take care of transplant patients.
Your kidney doctor will have to perform a number of tests to make sure it is safe to perform the transplant surgery and ensure the cause of your original kidney disease does not destroy the transplant kidney. The testing is also needed to determine the best treatment plan to reduce the risk of transplant kidney rejection or complications such as infections, poor wound healing and cancers. If you have pets such as cats, you must let your kidney transplant specialist know so that you can be appropriately advised. Cats can transmit serious infections to transplant patients and you need to take precautions against getting such infections
Make sure your kidney specialist has experience with kidney transplant patients. Not all kidney doctors know how to take care of transplant patients
The steps leading to a successful kidney transplant are
1. Understand the particular cause of kidney failure in your case from a kidney doctor/specialist and find a blood group compatible donor
It is important to know the cause of kidney failure as some of the causes of kidney failure can affect the transplant kidney and destroy it. Your doctor may want to treat the cause of kidney failure and stabilise it before recommending proceeding with transplant.
While these evaluations are going on, you need to look for a donor. In Nigeria, there is no option for a donor kidney from someone who has died as such are not yet legally allowed. So the only option is to get one from a living person who agrees to donate the kidney. Speak to family and friends about your condition. Let them know your increased risk of death and how difficult life is especially if you are on dialysis. These discussions can be difficult because you may be worried about being turned down. If this is the case and you have family or friends interested in learning more but not sure if they want to proceed, ask them to talk to your kidney doctor to discuss the risk and benefits involved in kidney donation. The best donor is from a healthy living person between the ages of 25 and 50 of the same blood group as you with no medical problems.
2. Work up for recipient and donor – reduce risk of bad outcome for recipient and donor.
Transplantation and the surgery involved can be stressful to the body and carry a risk of severe injury or even death. To avoid these complications, your doctor will have to perform tests on your heart, lungs, blood and blood vessels to make sure you can handle the stress of transplantation. You will also need to be tested for certain infections or cancers because transplant medications that prevent rejection of the transplanted kidney weaken the immune system that protects against infection and cancer. Part of preparation for transplant may involve getting vaccines against infections such as hepatitis B.
Your donor also needs testing done. This is to ensure the donor is healthy, can stand the stress of surgery and does not have silent kidney disease or conditions that can cause kidney disease as well. Testing is also necessary to ensure that the donor does not transmit infections or cancers to the recipient. Special testing also needs to be done to ensure the donor and recipient are compatible and help the surgeons know which kidney to take out of the donor and how best to take it out. Some transplant centers require that a donor be related to the recipient while other transplant centers do not insist on such a relationship.
3. Find expert center for transplant and discuss risks and complications
While cost is an important consideration in selecting a transplant center, it is most important to find a center with specialist doctors and experts that know what they are doing. Ask questions of the doctors of their experience taking care of transplant patients, speak to transplant patients and learn about their experiences. Take your time and don’t rush the process. It is an important decision and could be a matter of life and death or a short bad experience only leading you back to dialysis.
At the present time, there are a few centers in Nigeria that perform the surgery. There are also experienced centers outside Nigeria in India, the United States and United Kingdom where kidney transplantation can be performed. Wherever you decide to have your transplant, you must ask questions and get a good understanding of their experience and capabilities to provide excellent care to you and your donor.
4. Undergo transplant surgery
For the donor, this more recently is done by keyhole (laparoscopic) surgery lasting 3-4 hours. On rare occasion is an open surgery required. Keyhole surgery is the better option and recovery time for the donor is shorter. After successful keyhole surgery, the donor can be discharged from the hospital after 48 to 96 hours.
Your transplant surgeon has to be experienced too. Ask around for good centers. Ask about their patient and kidney transplant survival rates at 1 and 5 years after surgery. Also ask about their rejection rates and surgical and transplant medication protocols.
For the recipient, an open procedure is performed that lasts 1-3 hours. The kidney will be put in the lower left or lower right part of your belly close to your bladder. Your original kidneys will not be removed unless there is a good reason to do so such as difficult to control infection, cancer or large cysts. A stent may be put in by your surgeon during the surgery. A lot of medication will be given to you to prevent infection and rejection. You likely will remain in the hospital for 7 to 10 days before you are discharged for out patient follow up. If your surgeon puts in a stent, the stent is taken out 2-3 weeks later after the incisions have healed. This is a simple procedure that takes only a few minutes.
Your newly transplanted kidney will be placed at the lower left or lower right portion of your belly. Your original kidneys will not be taken out unless they are infected, have cancer or are too big due to some kidney diseases like polycystic kidney disease.
5 Life after transplant- doctors visits, medications, testing, etc
Immediately after discharge from the hospital after a transplant, you would have to see your doctors at least once or twice a week for the first 4-6 weeks. If there are complications, you may need to be seen more frequently. Each visit will almost alway be accompanied by tests which may be even be requested shortly in advance of the visit so the doctor has real time information on the function of the kidney. Then onwards, the frequency of the visits become less frequent. By the time you hit the 6 month time point, you probably are seeing your doctor only once a month even though you may be doing lab tests twice a month. Your schedule of clinic visits and blood testing after the 6 month time point will depend on your doctor. It is important that you keep these appointments and do the required testing as they are the only opportunities to identify problems early before they become big issues.
You will be on several medications after your transplant. ALL these medications are important. Some are for preventing rejection, some are for preventing dangerous infections due to the rejection medicine. Some patients may continue to need medication for high blood pressure. Initially you may also continue to need EPO for low blood levels (anemia) for some weeks to months till your transplant kidney is working well enough. If you were diabetic before the transplant and on insulin, you may notice that your insulin requirements even go up as the new transplant kidney starts “eating up” some of the insulin. Some of the rejection medicine may also have side effects such a headaches, nausea, vomiting, shaking of the hands, diarrhoea, bone pain, pins and needle sensations in the hands and feet, gout, or even cause high cholesterol or high blood sugar. Some patients that were not diabetic before transplant might become diabetic because of the transplant medication. You transplant doctor will help you control the new onset diabetes.
If you have any of side effects from your medications, you must tell your kidney doctor as soon as possible so that careful changes can be made. NEVER change or stop your medication on your own as this can affect you or your transplant kidney. NEVER start new medicine without your kidney doctor knowing either. Certainly do not take any herbal medicines.
You MUST take your medicine regularly. Do not start or stop any medication without the knowledge of your kidney doctor.
Many patients are able to return to a high level of functioning after kidney transplantation. Returning to work is possible but depends on a lot of things. It depends on how sick you were before the transplant, if there were serious complications during or after the transplant and how well the kidney transplant is working. Those with simple jobs like working behind a desk can probably return to work before a person that has a physically demanding job. Talk to your kidney specialist about going back to work and the best time to do so.
6. Do’s and Dont’s
– You must take your medications every day as prescribed. You can not forget to take any medications
– Do not believe anyone who tells you that you do not need to follow up regularly with your doctor after a kidney transplant. You may get away with no problems for a while but you eventually will pay a heavy and unnecessary price with the kidney failing before it should or having a serious problem that could have been prevented with close follow up. Without proper follow up, you could die, get a serious complication and end up back on dialysis.
– Do your routine testing. Sometimes it is the only way to identify a problem when it can be managed easily and cheaply. Routine testing is necessary and important to prolong the life of your kidney. A number of patients have had their transplant kidney function well for up to 30-40 years. This was only because they took really good care of the kidney and kept all their appointments and checkups.
– Don’t treat malaria without letting your transplant doctor know. Some malaria medications may reduce the level of your transplant medication in the blood and put you at risk of rejecting the transplant kidney.
– Do not take grapefruit or grapefruit juice as a transplant patient. It can affect the levels of transplant medications and increase the risk of rejection.
– If you have a fever, do not ignore it or self treat. Talk to your transplant doctor immediately. It could be a sign of a serious problem that threatens your life or your transplant.
It is important to know that transplantation in Nigeria presents a unique and challenging circumstance that patients need to be aware .
First of all, not all patients with kidney failure are candidates for kidney transplantation. It may therefore mean that certain patients will never be suitable candidates for transplant while some with the right medical advice and treatment may eventually become candidates for transplantation.
Patients above 60-70 years of age, with active infections such as tuberculosis, HIV, Hepatitis B or C, patients with certain parasite infestations, patients with active heart or vascular disease or patients with certain cancers are considered poor candidates transplant. Patients without adequate family or social support are not candidates either for transplant as there are a lot of demands before, during and after transplant that most if not all patients can not deal with on their own. Other reasons for not being a transplant candidate may be that the surgery might be too stressful for patients with bad heart or blood vessel disease and lead to death during or shortly after surgery. In addition medications for preventing rejection could worsen existing infections or cancers.
So before rushing for a transplant, speak to a kidney specialist or transplant doctor. The kidney specialist will help you decide if transplant is a safe option for you. For many patients, it may be safer to proceed with dialysis.
Secondly, transplantation worth it but is not cheap and despite the success in many patients it is never 100% certain it will work out easily without costly complications. Also, remember that the kidney transplant may fail and you may need to return to dialysis. The good news is that the cost of transplant is cheaper than dialysis after a few years. The current cost of performing an uncomplicated transplant ranges from 3-6 million Naira in Nigeria to 4-7 million in India, to 10-15 million Naira in the US or UK. If there are complications, the costs are higher. The medications to be taken after transplant to prevent rejection or infections can cost as much as 50,000 to 100,000 Naira per month. In addition, monthly testing to check on the level of transplant drugs may cost another 20,000 to 50,000 per month. As far as lab testing is concerned, some of the tests such as transplant drug levels or immune testing need to be performed outside Nigeria such as in South Africa or the UK and drive the cost of testing up. Hopefully, these tests become available locally soon at cheaper rates.
Patients need to have these costs in mind and compare them to the costs of a years worth of sufficient dialysis (3 times a week) that comes to about 5 million Naira per year. This compares to the initial cost of surgery (4-10 million Naira) and then the yearly cost of drugs and testing of about 2 million Naira. Therefore by the beginning of the 3rd to 4th year after transplantation it is cheaper to have a transplant that to remain on dialysis. The reasonable concern with transplant is the huge initial costs.
Thirdly, many patients have trouble finding a donor kidney. There is currently no option of getting a kidney from a dead person as there are not yet any laws in Nigeria to govern or control the use of organs from deceased people. Therefore, the most viable and legal option for obtaining a donor kidney is from a living donor. This person can be related or non related to the potential recipient although it should be noted that many transplant centers do not perform transplant from unrelated donors.
Getting a kidney from a living donor is also the best option for the recipient as it will last longer and work better if put in properly and taken good care of. Some patients and their families may have concerns that it is religiously unacceptable to get a kidney transplant. The Catholic and Anglican Church, the major Islamic bodies and Jehovas Witness church have approved kidney transplantation from either cadaver or living donors. In the case of Jehovas witnesses, the organ is purged/flushed of all blood and transplantation without blood transfusion while risky is possible.
To summarize, getting a kidney transplant is the best option for kidney failure. It is a complicated process and demands sufficient finances, an experienced set of doctors, a supportive family and an informed patient that follows all recommended follow up instructions for the best results.
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