Do you have a plan?

[Eyak1971]

We often think of emergency plans when it comes to a fire or storm. If you are on pd at home and the electricity goes out , what do you do? If you have a fire and have a transplant, is your medication stored conveniently for easy access to take with you? We all have thought about these situations from time to time and usually make decisions prematurely since they can often be disastrous without a plan. Even if it does not happen, we take the possibility seriously. Today, we have one more plan to consider even if it does not happen. It is probably the most difficult plan to develop, let alone accept. What if medicare cuts aid to transplant patients or dialysis patients. There was a time when that was true, but with the efforts of doctors and patients that changed. Today, we often forget that the past can not define the future without the same effort of activism. So, do you have a plan? What will you do to make sure that you have the same medication and care that you receive today? Will you give up retirement, or will you change employment? Will you move abroad? Just like any disaster, it may not happen, but it may. There are forest fires and floods that destroy communities, and there may be a federal decision that destroys the transplant community. Like many minorities in our nation, unless you have walked in our shoes, you really do not know how fragile life is. A plan does not mean you are fearful. It means you are powerful. You face that possible disaster and move forward. Please share your plan to encourage others. Any plan shared would be appreciated even if it is for a house fire or a tornado?

[Darlenia]

Your concerns are valid and your advice to have a contingency plan in place is good. One never knows what may happen in this unsettled world. My husband (with a transplant) and I would likely plan extended stays in Mexico City (which has a transplant center) if Medicare no longer covers his immunosuppressants. The medications and medical care would be far cheaper there. It gives us peace of mind knowing we have options.

[Eyak1971 in reply to Darlenia]

Thanks for sharing. So many of us will have to make that difficult decision. Will be interesting to see how other countries react to immigration from the US. It will definitely increase their economy. But will Americans face the same rebuff that immigrants face in the US? Take care and the best to you and your husband.

[MomofRecipient]

Thanks for your very valid post. I help to care for my adult son who has mild autism (why he is on SSD) with a history of a repaired aortic aneurysm, mechanical aortic valve, IGA nephropathy, home hemodialysis for 2 + years, and transplant 6+ years ago. His disease has returned in the graft but is so far under control. We live in a very conservative Midwest state. He lives with us and we are in our late 60's with health problems. We are very worried, have sold our home and our only plan is to move to a neighboring blue state and hope for the best. Canada does not need nor want more ill residents. I have researched. So sad to see my once independent, college-educated son face this uncertain and scary future.

[Eyak1971 in reply to MomofRecipient]

My heart reaches out to you. You are very brave to take the steps you have taken. Family is so important at this time. It will take hope and strength to fight what is happening. May you and others have both. We are not just fighting to protect ourselves but our neighbors. Take care.

[Ar2D2]

when I was on PD they suggested that I notify the electric company that I was on dialysis, To prioritize service return to my street due to medical necessity.

I normally did PD with the Cycler, but my PD nurse had me get those hand held foot warmers they make for people who ski to use to warm the PD fluid if if had to do manual PD and had no other way to heat the fluid bc had no power. Never had to use them but seemed like a good idea in case of emergency.

[LavenderRabbit in reply to Ar2D2]

Just so people know. The hand warmers you referred to have a shelf life. So replace them from time to time.

[Eyak1971 in reply to LavenderRabbit]

Thanks for sharing.

[Eyak1971 in reply to Ar2D2]

Thanks for sharing.