Lee75glom

[Lee75glom]

I currently am undergoing evaluation for a kidney transplant a major transplantation center, Perelman Center for Advanced Medicine. I passed the first stage by the transplant committee. I am wondering about how patients who have received a kidney transplant deal with transportation to their center when suffering medical issues such as infection, clotting, etc. I live about 45 minutes from the center and would have trouble arranging transportation late at night. I would find assistance for regular appointments. I live close to a large community hospital but I do not know if that would be acceptable for my care in an urgent situation. I hope My question is clear. Thank you.

[Bassetmommer]

This would have to be answered by your transplant team. Also ask the for information about support for transplant patients. There is an organization that will provide funding and housing. This might be it americantransplantfoundatio...

[6V53]

I'm a 3 1/2 hour drive to the airport and a 3+ hour flight to my transplant center. I have had problems with ER docs not listening to me or deferring every thing to my "local" nephrologist (so i have to wait for Monday and drive 3 1/2 hours). Over all my care at home has been good. I have a primary care who is an internist and there for she has a better idea about kidney issues than a general practitioner.

The whole point of the transplant is so that you can live your life. IF something happens that the locals can't help you with, they will get you there.

If you are concerned about the immediate post op period, then it may be best to stay near the transplant center for a few weeks. I stayed 5 weeks, but if I was only 45 minutes away, I probably would have gone home after 2 weeks.

[AENEASavc]

I am female, age 79. I received the gift of life 27 months ago ago at age 77 at HUP. HUP is 12 miles from my home and a 40-60 minutes drive.

The transplant team has provided me with outstanding care and compassion. Contact your team and especially your social worker who will help you problem solve and find the resources you need. Definitely join the on-line, twice a month support group conducted by the HUP social work department.

Perhaps, my experiences will help you think through your situation.

I do not go and would not go to my local (only 3 miles away from my home) community hospital because experience shows that their expertise and and delivery style to be inadequate and of poor quality.

My late husband, a cardiologist at HUP, helped me immensely but sadly passed away suddenly 5 weeks post my transplant. Despite my grief, exhaustion, and mental fog, I mobilized immediately since I was now living alone.

I have developed a strong and reliable support group. I can call on them day or night for help, including transportation. Just ask others for help. They will come through for you. My neighbors and friends stepped in. My son and daughter law live in upstate NY and will come anytime I need them. I can also call our police department who are responsive and helpful. This is not a one way street. I show my gratitude and give them little gifts such as flowers on Mother's Day, mums 3 weeks ago, support for their children's activities, and useful items from Amazon.

Although I have a reliable car and am able to drive, I take a car service, which operates 24/7 and for an acceptable cost, to go to HUP to avoid stress and the horrible parking situation around the hospital.

My son gave me an Apple watch so I can call for help 24/7. This removed worry and I feel safe and secure now.

I hope my experiences help you think through your challenging situation. Hang in there, participate in the support group, and be proud of your problem solving skills.

[Eyak1971]

The question you are asking is an important one. I registered at more than 1 center before I had my transplant. One 3 hours away and 1 one hour away. Fortunately the closer one came through. However I did make several trips to both during the waiting process. Both did extensive interviews as to my support system and my financial stability. Both concerns I understood because in our health system and social system today where families are scattered and extreme economic diversity, any type of medical care is tenuous, let alone the medical part of it. It is probably different from country to country. But that said a transplant is a life time commitment with a medication routine and handling possible side effects. So you will have life choices to make. The most important as you found out already is location. I eventually decided that living in the city where I would get the best care was a priority. So I sold my house and moved. I have never regretted it. I know this would be hard for many. But for me, the choice came down to what was most important - my health. Without that any other thing in my life would be irrelevant. As I said this is very difficult decision, but reducing the one hour to only a few minutes to access care can be the difference between in some cases a long life or a short one. In my case, there have been situations that the minutes saved have been just that. There are no guarantees in life, but your decisions can make a difference.

[littlelinda50]

My suggestion is to go to your community hospital and they will transport you to your transplant center hospital once your stabilized. That is what I do. I also would recommend that so that when you don't have to wait in the waiting room at the hospital you had your transplant done at. I have went straight to my hospital where Mt transplant was done and ended up waiting in the waiting room uncomfortable and bot being able to lay down like I need. If I would of went to my local hospital I would have been transported by ambulance and taken right away.

[WYOAnne NKF Ambassador]

This is a conversation you should have with your transplant center. I lived 90 minutes from my center. In the beginning there is no one that understands the problems of a transplant recipient like the center that did your transplant. A lot of times a local hospital just doesn't have the same expertise that a transplant center has. Even if you needed to be on an antibiotic - some are not kidney friendly

[Darlenia]

The answer to your question is "Yes! It's perfectly acceptable to go to your community hospital when issues develop!"

Here's our story (and advice) in brief. My transplanted hubby and I live a good 2 hours away from our transplant center. After the transplant, it's best to stay close to your transplant center for a month or so since labs are taken often and meds are adjusted frequently. They want to "see" you up close. Our transplant center was quick to write "orders" that granted patients from far away to stay at their non-profit "hotel" for free (donations accepted). The hotel also provided free shuttle service, free food, etc. So see if your transplant center has resources like that post surgery. After my husband returned home, trouble started. He developed a ureter leak, a-fb, and more. So I drove him back to the transplant center. He had to rest every 5 steps or so, gasping for breath and leaking fluid badly. Horrible experience all around. A home health nurse later told me that I should have gone to our little local hospital or called EMS. She informed me that, although local emergency room doctors don't work directly with transplant patients, they are very well trained and aware on how to get help for them - using ambulances, private services, air flights, etc. Since then, my husband has made his way around the various hospitals - for brain surgery, for passing out from low sugars, for utis, etc. He's since been inside an ambulance more than once. He makes sure all meds are reviewed by his nephrologist(s). Throughout, all hospitals exercised great judgement and interacted well with his transplant center. So be at peace, your community hospital will definitely get you to your transplant center if you need to be there.