COMMON QUESTIONS ABOUT TRANSPLANT

Today in PD clinic almost every patient we saw is also either waiting for a transplant(20% are waiting for a kidney-pancreas transplant)or in the process of completing the workup.(DID YOU KNOW NATIONALLY PATIENTS ON PERITONEAL DIALYSIS ARE 50% MORE LIKELY TO GET A TRANSPLANT THAN HEMODIALYSIS PATIENTS?) A few of the questions we were asked today are common and we thought it may benefit to repeat them. Today Dr. Jorge Ajuria ran PD clinic. One patient asked us what we thought of him being listed at a second transplant center. The patient felt he did not want to "anger" the team from the first transplant center. We explained as long as the center fell in a different "catchment"area that it was a good idea to perhaps up your chances of getting a kidney to be listed at two or even three centers. Not all centers however do kidney-pancreas if that is what you are looking for. Also, it is important to speak with the social worker and find out what centers are affiliated with your insurance plan. You do not have to repeat the work-up..the records will be shared between centers. You will require periodic visits at both centers so the cost of this travel has to be considered.
More than one patient expressed dismay at not having certain centers promptly return their phone calls regarding scheduling appts. etc. While we are always happy to assist, it is important you let your coordinator and your transplant doctor know that you are experiencing these troubles BY LETTER. Be factual and be polite. It tends to get results.
Another lady asked us what she could do to increase her chances of being called. No magic answer there but some commonsense ones. First,exhaust all potentially available related and non related persons who may be willing to donate. If there are none(and this is quite common) then you are waiting for a deceased kidney. It is important to keep your visits both to PD clinic or hemodialysis and to your transplant appointments. Keep your yearly medical testing updated promptly(MANY people have to be cajoled by us to do this) and make sure it is communicated with your transplant team.Optimize your weight. Of course it matters. If the transplant team said lose 30 pounds they meant lose 30 pounds before we give you the kidney. Persons who do this demonstrate a real desire to get a transplant. Don't think we don't notice. Conversely if you don't lose weight or don't do the recommended dental work..well who is kidding who? That contributes to long waits although I haven't met too many health care providers who tell you straight up. Take copies of pertinent records and tests to your visit. This is your transplant. Don't wait for others to do this for you. YOU DO IT. If you had a stress test, make sure the cardiologist wrote a clearance letter and take a copy in your hand.Go prepared for the visits. Work out problems with your own dialysis team so your lab work is optimal when you get to your transplant visit. Present yourself as an organized, willing and compliant person. Keep up to date on your insurance and any changes that may affect transplant eligibility. Periodically-between visits-keep in touch with your coordinator.
One more thing. I will be honest. When you are non compliant with say- your phosphate binders on a consistent basis-we know. And the transplant team knows too. This patient is LESS likely to get a kidney then a compliant one. A transplant requires extreme compliance and precision with meds. Who would you give the kidney to?
Lastly, a patient seen today on the list 3 weeks was out of town and missed a call to come be tested for a kidney. I live in the real world. I get you have to travel..however make sure you carefully weigh being far out of town. Odds are you may not be called. But today's patient wasn't the first to have this happen and she will not be the last.
Just a little straight shop talk. We believe if you understand why we ask you to do the things we do regarding your care, you are more likely to be willing to do it. Teamwork. And we will get that kidney.

BEING EVALUATED FOR A TRANSPLANT

Recent articles in major publications have suggested a bias in not offering the option of transplant to all patients. It is important for patients, and their families, who have advanced kidney disease, to see evaluation for a kidney(and in the case of some diabetics a kidney-pancreas transplant) as a right.
In our office at THE KIDNEY GROUP we believe all patients should have the option of transplant presented clearly to them BEFORE dialysis is necessary. Unfortunately, when patients are referred to us late in the course of kidney disease this often has to wait until after dialysis is initiated. EARLY referral to a nephrologist is therefore desirable.
We now know that persons who have the shortest amount of total length of time on dialysis(under 2 yrs) fare better when transplanted. If this option is not presented to you and a referral to a transplant center made ask why. Not happy with the answer? Then change nephrologists. This is your life.
Of course there are a few absolute contraindications such as a very recent history of cancer or a terminal co-existing diagnosis. But that's not all that common. Sometimes a person with advance heart or lung disease is not able to undergo the surgery without great risk or another diagnosis might make long term use of immunosuppression undesirable. Patients can have policies(insurance)that exclude transplant-and for these patients our excellent social workers can sometimes work miracles.
But most patients deserve to be evaluated by transplant experts not simply the local nephrologist. DEMAND IT or find a doctor who will send you.
Age, remote history of cancer, HIV, heart disease-all of these do not exclude you for certain.
Life with a transplant can be wonderful but it has its drawbacks such as long term immunosuppression and cost of drugs. But choosing between transplant and a life of dialysis? To me there would be no hesitation.
If you have advanced renal disease, speak to your doctor and explore the pros and cons of transplant at a transplant center. (Don't let the conversation end with your local physician). If you're on dialysis and transplant was NOT mentioned to you or no referral was made-call the doctors office and make an office appointment to speak to them. Bring a family member with you. Find out why and act on it.
Maybe it sounds a little Pollyanna-forgive me-but few things surpass sitting at my desk and seeing a note on my phone that one of our patients got a transplant. I say go for it.

THE FIRST TRANSPLANT

The first kidney transplant was performed in 1954 at Peter Bent Brigham Hospital in Boston. Dr. Joseph Murray, the pioneering surgeon never dreamt he was making history. In an interview he gave to NPR, Dr. Murray stated that he was intent on saving the life of a very ill 23 year old man, Richard Herrick, and did not realize he was making history. Richard had an identical twin brother( a perfect genetic match), Ronald who was the donor. Ronald was afraid of the untried medical procedure-we didn't know then how the donor would fare long term-but he convinced Richard to go through with it.
Richard lived eight years before succumbing to his original illness(his death was not due to a failure of the transplant). However he did marry in that time and had two children-one of whom is a dialysis nurse today. The donor, Ronald, is 77 years old. In 2004 he was reunited with Dr. Murray, the surgeon who was 85 years old at their meeting which was to celebrate the 50th anniversary of the transplant. Ronald felt very privileged to have had the opportunity to help his brother and encourages others to consider kidney donation. He remains close to Richard's widow and his two children and their families.

GROWING TREND: NON BLOOD RELATED DONORS ( CLICK HERE TO READ MORE*)

Actor George Lopez is thriving after receiving a kidney donated by his wife, Ann, in April of 2005. George had suffered from kidney disease since childhood. His wife is also doing great. 99% of spouses who have donated a kidney say they would reccommend the donation to other persons in similar situations. If you suffer from ESRD and are thinking of a transplant it is important to consider all sources of donors in your family and friends who express an interest and not just those related by blood as once was the case.

INTERESTED IN A KIDNEY TRANSPLANT ? Click here*

A good place for potential kidney transplant recipients and donors to begin is THE NATIONAL KIDNEY REGISTRY. It is a great source of information and helps you to prepare for the discussion of this important topic with your nephrologist. At the KIDNEY GROUP, we believe all ESRD patients should be evaluated as potential transplant recipients. We consequently transplant a much higher-than-the -national-average of our dialysis and pre-dialysis patients. This month we will look at various topics related to the fascinating field of transplantation. To begin we recommend you start by clicking on this link and visiting this important website. As always, we welcome your questions.