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.