So, the medical issue has resolved itself...sort of. After hours of phone calls and multiple letters, Chris and I switched to a cobra. I can not depend on someone else as my medical is too important. While I was dealing with my fear of losing my medical, I went to the doctor and filled all my prescriptions...just in case. (I had this HUGE bag of medication. There were over 20 bottles of medication. If we were pulled over, I would have had a lot of explaining to do.) But, I got it all for under $200. If I lost my medical, I saw on the receipt, that the Cellcept alone would be $4200 a month. Did I mention the transplant alone was 500K..So, I had no choice but to take the control of my medical back. I just am so glad to get that off my list of things to worry about.
Now, on to more pressing issues. I am trying to work out the social security/lawyer dispute! I just don't know who to listen to. Social security wants a list of every doctor appointment I had from December 04 to September 05. This is very strange since I have already sent my complete medical file to both them and my lawyer and I filled out the same paperwork they are requesting March of 07. Not to mention for at least 8 weeks during that time period I was in the hospital and I had multiple surgical procedures. I called my lawyer yesterday questioning the reasons behind the dates of the doctors visits they were asking for as they did not match the dates we are appealing. I also asked why they wanted information they already had (they being both the lawyer and social security). Of course my lawyer called me back the following day when I was in with the trainer. It is so frustrating. Since Social Security said I had to have the information to them by the 17th, I have to get this issue solved by tomorrow. I feel like I am in a bad remake of "Groundhog Day". Instead of living the same day over and over in a boring town, I am living the same paperwork over and over with the same useless "help", Knowing at the end, I will wake up the next day with no more money, no more information and no more help than the day before. It is beyond frustrating. It feels like every day is a reminder of the problems with our country's medical and social security systems. I think about it all the time, and I don't know what the answer is. It is just bizarre that someone who has been healthy and worked since 15 struggles to get a program/service that she paid for her whole life. I wonder how it is for others who do not have the education or support I do. Our system is full of red tape and paperwork. It is a disaster. I just hope we come up with a better system for the generations to come.
I am tired, so more later. For now, I am off to be sad about the Sharks first playoff game. I never take playoff losses well, and without my father to discuss the game with..I am just going to go to sleep. (I hope)
Cath
Friday, April 17, 2009
Monday, April 6, 2009
so much to tell
My apologies for not posting last month. As most of you know, I lost my father. I feel like I woke up on March 5th, walked around in a daze...and POOF! 30 days elapsed. Needless to say, I behind on everything in life. Mostly I am attempting to take care of my mother. My sister and I are assuring at least for a while that she is not alone at night. We are taking turns staying with her. It seems crazy to some, but I would not have it any other way. After all not only did she care for me the first 30 years of my life, but especially the last 4 years when I was so sick. Now, it is my turn.
I am doing my best to balance my life at home, with my life at my moms. I feel like I am living in two worlds at the moment. But jumping around and being so needed is probably what is getting me through this incredibly difficult time. That said, I have a lot on my plate and I am going to have to get focused and quickly.
My medical is still a mess. In the middle of our family crisis, Chris ended up writing a check directly to the company managing his employer's medical. This seemed to fix the problem. On the April 1st, he called back just to make sure that the insurance was paid...this time by his employer. The company called him back on the 2nd and told him that when he made the payment online, he basically opted out of the company medical and onto a Cobra. And, because we didn't make a payment on the first, we are not only not going to be insured through his work, but are also no longer eligible for Cobra. So, we have called in the big guns. I am no longer able to handle this myself. As a transplant patient, I am on medicare, but this means I loose my kidney doctor who has been there since the beginning, and my entire post transplant team. This really almost pushed me over the edge.
I had to prioritize last month, and just taking care of the funeral and family was a full time job. Now that I am beginning to poke my head out into the world again, I feel like I am getting bombarded from every angle.
Hours after I found out about medical, and the fact that Chris' employer wasn't going to help at all with the issue (like pay the medical) I got a call from social security. The good news is they are now looking at my appeal from the end of 2004 - 2005. The bad news is they were calling to tell me that they had not heard from my lawyer. The short story is by law social security can not talk to me directly as I have a lawyer, they must talk to the lawyer. But since they don't have the appropriate paperwork signed by me and the lawyer, they found a loophole. So, they called me and let me know that after numerous calls to my lawyer, whose entire practice is to work with social security, social security had never heard back. Money well spent....NOT!
Lastly, it has been in discussion for a long time, that my husband would start his own teaching school. Well, we have decided now is the time. We were actually out with my father the night before he passed away, and he convinced us to move forward. We had been having initial discussions with people and just made the decision to move ahead. Chris and I thought long and hard and realized that my father would be sad if we didn't push forward, so that is what we are trying to do. As my mother owned her own business, I am well aware of what that means. I am petrified of the hard work and uncertainty that lies ahead, but I am confident in the product...my husband. He is an amazing teacher.
So now I am off to re prioritize my life. Each day I need to sit down and figure out where the biggest fire is. Do I have all my medications? Does my son need some time, What do I need to do at my moms? Do I have to contact social security, my lawyer, my long term disability insurance company? Do I need a kidney test? How am I feeling... I just hope by the end of tomorrow, I have Kaiser again.
This last week was full of tears. In the middle of my crisis, my sister, niece and I went to my fathers grave and sat with him. We put a Sharks flag up next to where his headstone will be (when it gets in). It really gave me clarity. I am trying to put one foot in front of the other, put the people most important in my life first, and take care of business.
I found a new link about my disease. I liked it, so I am adding it.
http://rarediseases.about.com/cs/iganephropathy/a/042002.htm
Cath
I am doing my best to balance my life at home, with my life at my moms. I feel like I am living in two worlds at the moment. But jumping around and being so needed is probably what is getting me through this incredibly difficult time. That said, I have a lot on my plate and I am going to have to get focused and quickly.
My medical is still a mess. In the middle of our family crisis, Chris ended up writing a check directly to the company managing his employer's medical. This seemed to fix the problem. On the April 1st, he called back just to make sure that the insurance was paid...this time by his employer. The company called him back on the 2nd and told him that when he made the payment online, he basically opted out of the company medical and onto a Cobra. And, because we didn't make a payment on the first, we are not only not going to be insured through his work, but are also no longer eligible for Cobra. So, we have called in the big guns. I am no longer able to handle this myself. As a transplant patient, I am on medicare, but this means I loose my kidney doctor who has been there since the beginning, and my entire post transplant team. This really almost pushed me over the edge.
I had to prioritize last month, and just taking care of the funeral and family was a full time job. Now that I am beginning to poke my head out into the world again, I feel like I am getting bombarded from every angle.
Hours after I found out about medical, and the fact that Chris' employer wasn't going to help at all with the issue (like pay the medical) I got a call from social security. The good news is they are now looking at my appeal from the end of 2004 - 2005. The bad news is they were calling to tell me that they had not heard from my lawyer. The short story is by law social security can not talk to me directly as I have a lawyer, they must talk to the lawyer. But since they don't have the appropriate paperwork signed by me and the lawyer, they found a loophole. So, they called me and let me know that after numerous calls to my lawyer, whose entire practice is to work with social security, social security had never heard back. Money well spent....NOT!
Lastly, it has been in discussion for a long time, that my husband would start his own teaching school. Well, we have decided now is the time. We were actually out with my father the night before he passed away, and he convinced us to move forward. We had been having initial discussions with people and just made the decision to move ahead. Chris and I thought long and hard and realized that my father would be sad if we didn't push forward, so that is what we are trying to do. As my mother owned her own business, I am well aware of what that means. I am petrified of the hard work and uncertainty that lies ahead, but I am confident in the product...my husband. He is an amazing teacher.
So now I am off to re prioritize my life. Each day I need to sit down and figure out where the biggest fire is. Do I have all my medications? Does my son need some time, What do I need to do at my moms? Do I have to contact social security, my lawyer, my long term disability insurance company? Do I need a kidney test? How am I feeling... I just hope by the end of tomorrow, I have Kaiser again.
This last week was full of tears. In the middle of my crisis, my sister, niece and I went to my fathers grave and sat with him. We put a Sharks flag up next to where his headstone will be (when it gets in). It really gave me clarity. I am trying to put one foot in front of the other, put the people most important in my life first, and take care of business.
I found a new link about my disease. I liked it, so I am adding it.
http://rarediseases.about.com/cs/iganephropathy/a/042002.htm
Cath
Wednesday, February 18, 2009
Kaiser part 2..update on last post
So, I was scheduled to go to Kaiser SF today. Unfortunately the medical insurance is still a mess and I again had to cancel my appointment. Chris spent hours on the phone today, mostly with the company that handles his employers insurance. I don't think they understand what a huge deal their "clerical error" is. They have sworn that it will all be fixed in 48 hours...retroactive to Feb 1st, but I just have no faith. I have told Kaiser what is happening and they are giving me a chance to reschedule for a 3rd time..for Monday. After this mess is fixed, I can then try to fix the whole Kaiser/Medicare mess. Then I can begin to work on disability insurance vs social security. Who says being disabled isn't a full time job. Trust me, working is a whole lot easier than this!
Catherine
Catherine
Saturday, February 14, 2009
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
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
Friday, January 23, 2009
Disability Woes
The last couple of weeks have been pretty tough. I am still struggling with headaches and sleeplessness, but I have had a ton of support from Chris and I have really been able to just take care of myself. I have been working with the trainer twice a week as well as trying to do a little cardio on my own. I can't bounce very much or my various incision sites begin to hurt. So I walk briskly up stairs, or ride a stationary bike. I am still trying to get my heart rate up, even if I can't run. I am so tired after, I usually crash. After nights of not sleeping, I really enjoy the naps. But, it is going to be a slow recovery. After not doing anything but laying around the last 4 years, I have a lot of work in front of me. I am so excited to get back to my old life. I am ready. I look forward to swimming, skiing, and running again. It is my priority to get myself back in shape for both Donovan and all those who cared for me when I was sick.
I have been spending a lot of time on my disability. I just can't believe the irony of our current disability system. I have to spend time talking with long term disability, disability lawyers, filling out disability paper work, in medical offices filling out paperwork in relation to my transplant, and visiting the local social security office. It truly is a full time job to balance every thing that has to be done to keep my disability checks coming, and my medical from being cancelled. No one wants to insure a kidney transplant patient. We are expensive the rest of our lives. People are asking when I am going back to work. I think it would happen a lot faster if all of this would go away. Anyone who truly is disabled can not do this alone. I consider myself a pretty competent person...and this takes so much time. I wonder about others, who don't' have the education or the support I do. Who is there to help them? How do they expect someone who is unable to work or take care of him/herself to deal with all of this! I think the whole system needs to be revamped. I will have Barack put this on his to do list. I am sure it will be right after the economy, terrorism, national health care and international relations (Sudan, Israel, North Korea, Afghanistan). I think he is going to be too busy for a while.
Another hoop to jump through this month is to move from UCSF to Kaiser SF. It has been 3 months since my transplant and at the 3 months I transfer from the UCSF transplant team to the Kaiser transplant/transition team. Although UCSF will be in charge of the overall function of my new kidney, Kaiser will take over the regular appointments and blood work. I seem to have been lost between the two. I am working on straightening that out. Putting that on my to do list..
Sorry if you haven't heard from me. All of this paperwork has been so overwhelming. Donovan's birthday is Tuesday. (I can't believe my baby is turning 4.) We are taking him to Disneyland. I am trying to get everything settled so I don't spend the day on the phone..instead of with my son.
Write with an update soon!
Catherine
I have been spending a lot of time on my disability. I just can't believe the irony of our current disability system. I have to spend time talking with long term disability, disability lawyers, filling out disability paper work, in medical offices filling out paperwork in relation to my transplant, and visiting the local social security office. It truly is a full time job to balance every thing that has to be done to keep my disability checks coming, and my medical from being cancelled. No one wants to insure a kidney transplant patient. We are expensive the rest of our lives. People are asking when I am going back to work. I think it would happen a lot faster if all of this would go away. Anyone who truly is disabled can not do this alone. I consider myself a pretty competent person...and this takes so much time. I wonder about others, who don't' have the education or the support I do. Who is there to help them? How do they expect someone who is unable to work or take care of him/herself to deal with all of this! I think the whole system needs to be revamped. I will have Barack put this on his to do list. I am sure it will be right after the economy, terrorism, national health care and international relations (Sudan, Israel, North Korea, Afghanistan). I think he is going to be too busy for a while.
Another hoop to jump through this month is to move from UCSF to Kaiser SF. It has been 3 months since my transplant and at the 3 months I transfer from the UCSF transplant team to the Kaiser transplant/transition team. Although UCSF will be in charge of the overall function of my new kidney, Kaiser will take over the regular appointments and blood work. I seem to have been lost between the two. I am working on straightening that out. Putting that on my to do list..
Sorry if you haven't heard from me. All of this paperwork has been so overwhelming. Donovan's birthday is Tuesday. (I can't believe my baby is turning 4.) We are taking him to Disneyland. I am trying to get everything settled so I don't spend the day on the phone..instead of with my son.
Write with an update soon!
Catherine
Monday, December 29, 2008
End of the year wrap up
The last couple weeks are a blur. They usually are for me this time of year. The time between Thanksgiving and Christmas seems like a short anxiously awaited vacation. You are full of anticipation while waiting for it to occur. You plan to use your time wisely and get the most out of every moment. But, in the end, it speeds by and you are lucky if you remember to brush your teeth..or in my case...take your medication.
There have been no major changes with me. I have thought of little things I could write about, but none that would have been longer than a line or two..so I didn't. My appointments have been regular. I missed one appointment at UCSF when my nephews suprised me and showed up at my house at 11 pm on a Sunday night. One is a marine shipping off to Afghanistan this year and the other is a Sheriff in Colorado. It was such a great suprise, but I didn't take my bedtime pills on time, which is imperitive for test accuracy, and I couln't imagine driving to San Francisco on 3 1/2 hours sleep. So I called and cancelled. I'll admit, I still feel bad. I think I will be until I get to go back.
I still am fighting with insomnia. I am up now, at 4am, which is funny since I took a sleeping pill hours ago. So unless I can type sleeping..I don't think they are working.
I must say that overall I am doing really well. I still fight with some side effects of the medications, and pee constantly..but I feel somewhat normal a couple days a week. I met with a trainer and am trying to get on a strict schedule. As I have had so many surgeries and my stomach is filled with stitches, cuts and hernias, I want to take it slow and heal everything the right way. I am excited to rebuild my core and get my general stamina back. My first session is on Tuesday. I am sure I will be unable to move the following 3 days.
I hope to go back to UCSF in the next week. Hopefully then I will feel better that my kidneys are stable. Always reassuring to hear!
Hope you all had an amazing holiday and a safe New Years.
Catherine
There have been no major changes with me. I have thought of little things I could write about, but none that would have been longer than a line or two..so I didn't. My appointments have been regular. I missed one appointment at UCSF when my nephews suprised me and showed up at my house at 11 pm on a Sunday night. One is a marine shipping off to Afghanistan this year and the other is a Sheriff in Colorado. It was such a great suprise, but I didn't take my bedtime pills on time, which is imperitive for test accuracy, and I couln't imagine driving to San Francisco on 3 1/2 hours sleep. So I called and cancelled. I'll admit, I still feel bad. I think I will be until I get to go back.
I still am fighting with insomnia. I am up now, at 4am, which is funny since I took a sleeping pill hours ago. So unless I can type sleeping..I don't think they are working.
I must say that overall I am doing really well. I still fight with some side effects of the medications, and pee constantly..but I feel somewhat normal a couple days a week. I met with a trainer and am trying to get on a strict schedule. As I have had so many surgeries and my stomach is filled with stitches, cuts and hernias, I want to take it slow and heal everything the right way. I am excited to rebuild my core and get my general stamina back. My first session is on Tuesday. I am sure I will be unable to move the following 3 days.
I hope to go back to UCSF in the next week. Hopefully then I will feel better that my kidneys are stable. Always reassuring to hear!
Hope you all had an amazing holiday and a safe New Years.
Catherine
Wednesday, December 3, 2008
post doctor follow up
Monday, I had a quick appointment at UCSF. This is the first time my appt took just 2 hours. I was very pleased about that. As usual, I started with a blood and pee test followed up by an appointment with a nurses aide, a nurse and a nephrologist (kidney doctor). I asked my nurse Melanie about both my inability to sleep and the pain from my shopping excursion. She immediately knew my lack of sleep was directly linked to my anti-rejection meds. Melanie said my Prograff was too high and lowered the meds. Hopefully in a couple of days I will again be able to fall asleep with no problem.
She had the nephrologist come and look at my stomach. The Dr was happy to see it was not where my kidney had been placed. She thinks I just pulled a stitch and everything is ok. Its a relief to hear that my kidney is fine, but I must admit it makes me feel like a big pussy. When you hurt as bad as I did, you are SURE something major is wrong.
So for now, I am just laying low around the house..hoping to get through this week with less headaches.
Cath
She had the nephrologist come and look at my stomach. The Dr was happy to see it was not where my kidney had been placed. She thinks I just pulled a stitch and everything is ok. Its a relief to hear that my kidney is fine, but I must admit it makes me feel like a big pussy. When you hurt as bad as I did, you are SURE something major is wrong.
So for now, I am just laying low around the house..hoping to get through this week with less headaches.
Cath
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