Kaiser and social security

Last week, I got my first big illness post transplant. I had a fever for 3 days. After being sick I was so run down. I know the anti-rejection meds have my immunity so low I shouldn't be surprised how a little cold could knock me down so hard. But, it was still shocking. I began to get sick a week ago, and I spent most of today in bed. I have been SO exhausted. I am trying to give myself a break and remind myself that my body has to work harder to fight anything, but after 4 years of being sick...I am just tired of it.

I am ready to have a life. I want to get control of the normal things everybody else does that I have not been able to for so long. This week I feel like I accomplished nothing. I start each day with a large to do list, and it seems every day I end with almost all the to-dos I began with plus some new ones. I just keep plotting forward hoping I will finally reach the point I look back at this time as the past..and not the present.

I had a new hiccup this week. I went to visit my Nephrologist in San Jose and was informed my Kaiser was cancelled. It is a really long complicated story, but lets just say what a mess. I was told by the social worker while in the hospital that if I did not sign up for Medicare, my normal coverage would be cancelled. As a kidney transplant patient I was eligible to be on Medicare and as I already had medical coverage I would therefore be double covered. It was explained to me that the cost of my medication and future transplants would be so expensive, that the 2 would both bare the burden of the costs. My insurance does not have to carry that burden alone. But, I had to have all this paperwork in by a certain date or Kaiser had the right to drop me. Of course I had all my ducks in a row. Filled out all paperwork and the next time I went to the doctor, I had no coverage. After running around in full panic for a couple of hours, it turned out this had nothing to do with Medicare, but with my husbands work. Apparently there was a "clerical mistake"..but through this mistake I learned Kaiser was unaware that I signed up for Medicare. Apparently I had to go into the office and discuss this with them. And they were saying I had to choose one or the other. I left there office completely dumbfounded. A social worker and social security office explained it one way, and the Kaiser rep said they didn't understand Kaiser policy. Now I am completely confused. If everyone tells me something different, who is right? I want to do the right thing. I understand the importance of not loosing my insurance for one minute as a transplant patient, but who is right. This has been my whole experience of being disabled.

Everyone tells me about what to do and how important each step is. I leave his or her office with a complete understanding of what needs to be done. Complete each step of the process just to be told by someone else that it was completely wrong and to start over with a new process, which I find out was incorrect also. My disability lawyer sent me a letter saying I am not to speak with Social Security alone. But Social Security is not only where my disability comes from, it is also responsible for Medicare. So is my lawyer in charge of Medicare also? It isn't like I can pick up the phone and get my lawyer. I spend hours talking to legal secretaries. I have never actually talked with my lawyer and have only received 2 pieces of correspondence from him in over 2 years. The rest is all from his help. I can not believe what a mess it is. Every step I take forward I feel I am pushed backwards down a flight of stairs. No wonder I am not getting the things done in my life I need.

The fallout from this week was I did not get to go to my first visit with Kaiser San Francisco and their post transplant team. As I stated before, because I hit the 3 month mark, I am suppose to be moved from UCSF to Kaiser San Francisco. I finally got that all straightened out, and I had my first appointment set up and had to cancel because according to Kaiser, I am not a patient anymore! The whole thing is so bizarre. I don't understand why I am even going to Kaiser SF anyway. Here is the weirdest part. When I go to Kaiser San Francisco, I see UCSF Nephrologists. I know this is because Kaisers transplant team in San Francisco was terminated. But the only difference is who I make the appointment with and what nurses I see. The UCSF doctors go to Kaiser and look over my blood work. Just seems like a waste of every ones time.

So this week, I will be attempting to clean up the Kaiser mess and ATTEMPTING to talk to my lawyer about who is to help me with this Medicare vs Kaiser situation. As well as filling out a huge stack of paperwork for my long term disability company which includes pages of questions about social security in which I have no clue how to answer. So I guess cleaning the fish tank and laundry are going to have to wait...again.

Let me know if anyone is still reading this. I guess I figure since it has been so long since the surgery, most have stopped. I am just curious.

More soon..I promise!
Cath