Kidney transplant - The Journey from the Donor's Side

Health insurance determines where I live. I spent almost 51 years with brittle type one diabetes thus insurance wasn't fun. Since my one year anniversary of my transplant I had to move across the country to now be seen at JAX Mayo. I'm 62. Will be checking in with the transplant insurance department at Mayo 6 months prior to my 65th birthday. They will guide me as to which insurance includes them. Next I check out the plans to figure out which is best for prescriptions. You need to stay 5 steps ahead and that's time consuming but well worth it. I have found the JAX Mayo transplant - department to be absolutely wonderful.

@beckyjohnson, The transplant process is different and similar for each recipient whether they receive organs from a living or a deceased donor. All transplant recipients will take anti-rejection (immunosuppressant) drugs for the rest of their lives. You, as a donor, will not need these medications, nor will you need to make the life changes that are necessary for recipients. Also, you don't need to worry about the life changes that many recipients have shared in other discussions.
When anyone is evaluated for transplant donation as a recipient, or donor, there is are complete medical evaluations to determine if the patient is able to withstand the surgery and also to rule out any complicating medical issues. There is also a very thorough workup and conversation with the recipient about current and future medication and insurance issues.
This is, as I have said, a very complex journey. There are National standards that every transplant center must adhere to. If you are evaluated and are eligible to move forward, then you will be made aware of the things that will apply to you. Of course, take a list of all of these questions with you. We, here, are not the experts.
I want to add that this is an eye opener for you because you have not been around the world of kidney disease and dialysis. For those of us with the kidney issues, it is a fact that we already know. That is why we have insurance. That is why a social worker is on staff to provide resource information. When we receive a transplant - Gift of Life - we accept each day for the gift that it is, freely given without any expectation or guarantee.
Hugs and Hope,
Rosemary

Yes that is Medicare's policy as of right now, it used to be one year twenty or so years ago, there are some medication assistance programs, I think there's links on the NKF website. It doesn't make good sense because it cost more for dialysis...but there's a lot of things that don't make since these days.

The reason I'm a donor is because I truly care about each & everyone of you, your unique testimonies that shaped you & what brought you to this point & beyond today. Together with hundreds of thousands of voices we fight the "good fight" for access to life saving medication regardless of ones financial status. The following links are a result of our collective voice.
ADVOCATE to get immunosuppressive prescriptions for under insured & economically disadvantaged:
http://www.kidneyfund.org/advocacy/; https://www.ncbi.nlm.nih.gov/books/NBK225251/;
https://nkfadvocacy.wordpress.com/immunosuppressive-drug-coverage/
BLOGS
http://www.kidneyfund.org/kidney-today/protect-immunosuppressive-drug-coverage.html
PRESCRIPTION ASSISTANCE
https://www.americantransplantfoundation.org/receive/; https://www.kidney.org/patients/resources_Prescription; https://www.phrma.org/advocacy/access/patient-assistance; https://advocatemymeds.com;

@donnan As a donor it doesn't make sense to set my kidney up for failure which is exactly what it is when the recipient is cut off & denied their medicine based on their financial status. I was very pleased in researching this grave matter I found hundreds of thousands of people advocating for life safe prescription assistance. I posted a variety of Advocacy/ assistance links in Journey From the Donors Side for anyone who is interested in advocating for the under insured, economically disadvantaged and/ or in need of immunosuppressant prescription help. I can handle the idea of failure due to medical cause but not because of deliberate financial failure as in withdrawing prescription assistance.

@rosemary Thank you for clarifying recipients need their antirejection medicine for as long as they live & that it is the same thing as immunosuppressant. If I did not care about people (Strangers included) I would not be subjecting myself to testing, surgery & the loss of my own organ. Albeit I'm not as scrutinized as the recipient but I'm also not the one in need. Therefore I feel it is important to pay attention to their stories.
Medicare is insurance that clearly falls short of providing for the needs of recipients after 3 short years of (presumed) improved quality of life. More people than not lack the financial ability to pay excessively high premiums for pre existing conditions or extremely high costs of immunosuppressant.
As a sociologist I researched this grave matter & found some (I hope) helpful links which I posted in Journey From the Donors Side. Giving an organ is not an easy come easy go gift. It is one person's loss is another person's gain regardless of rather it is a living or deceased donor.

@ca426 Well I'm part of the human race who live & breath for the betterment of life. It is a cruel thing to give hope for a quality life then take it back a few months later because one cannot afford a great insurance policy or high dollar prescriptions. There is so much wasteful spending that it boggles my mind this is perfectly acceptable to some people.
I'm well aware that we face resource depletion, overpopulation, mass polution and other world class issues but medical care should not be one of them. I'm by no means a push over but I am a philosophical humanitarian & as such I have an obligation to "Pay it Forward". Everyone who has ever recieved anything from anyone without expectations should also feel that sense of responsibility to pay it forward. But that's just me looking through my rose colored lenses again.

@beckyjohnson I just thought of a tip for your 24 hour blood pressure cuff.
I had to wear one for 18 hours. It was attached to my arm like a regular cuff and I was provided a small purse that held the monitor that I wore across my body. It wasn't much different than carrying a purse all day but I was worried that it would slip off in my sleep and I'd have to start over. I wore a long sleeved, long length t-shirt to bed and it held the cuff and the "purse" in place. It looked really dumb but I slept better knowing it would stay put.
I also had to do a 24 hour urine collection and luckily was able to do that at home. I'll have to figure out how to MacGyver something to carry around during my follow up appointments. Maybe a stylish cooler bag to carry through the streets of Rochester?

@mauraacro Since I sleep alone I doubt exterior beauty matters. Thank you for the tip. I've been accused of having the patients of a saint. If those same people saw me now? I have not recieved my cuff yet. How long does it take? Shouldn't it have been here by now? Oh wait...was it just 3 days ago my coordinator said she would work on it? It feels like a week. Now I get it. Waiting is sooo hard, even for me lol.

@mrasmith15 How are you doing? Do you have a surgery date?