Awake Again With Old Pics

I have a headache, and pain in my left side (tummy)..so I am awake. Since I couldn't sleep I decided to look at old pictures and I found these. This was one of the first times Donovan came to visit me in the hospital days after my transplant. Funny how this brings everything back. My cheeks are red because of the anti rejection meds. They were like crack. Ok, I have never had crack but that is the best way I can explain the way I felt. I was super hot and jittery. I hated the way it made me feel. I was always freezing, so I was really worried something was wrong, but I was repeatedly told that it was the medication. After all the surgeries I have had, the easiest way to get through the first couple of days was to sleep as much as possible. I think it was the drug Prograff that made this impossible. When you are taking 35+ pills a day it is hard to pick one, but that is the one the Drs kept mentioning in relation to the crack like side effects. I couldn't sleep at all. I had a fan on high and no blankets. It was crazy.

Looking at the pictures, I feel for my son. I can't imagine what was going through his head. I know he still has nightmares about me being in the hospital. I was never away from him before the trasplant more than a day or 2, and I didn't want him to see me right after my transplant. Hospitals can be so scary to anyone, let alone a 3 year old. Notice he is eating the bread from my hospital food. I think I just ate the soup the first week or so.

I am dealing with my first Christmas season without my father. Knowing that he was there for my transplant makes it seem like it was so long ago. I still can't believe he isn't here now.

I have so much to do for the holidays and can't get the energy to do it. Having a small child is really a gift. You can't just pretend the holiday doesn't exsist. I have to go on. Santa has to come...rain or shine..dad or no dad. Between the constant pain in my stomach and the cold I haven't been able to get rid of for weeks it has been so difficult. I am trying to stay on top of the small things, but I am overwhelmed. The fact that the Dr doesn't see a fix to my pain has really put a damper on things for me. I am overwhelmed by the thought of a long future like this. I try to write myself a to do list and cross off as many things as I can, but these days I am lucky to get done more than a couple.

I am off to try to sleep again..without pain meds. Hope you like the pics.

Cath

Tummy Trauma

I write an update every night in my head, but I just never know what to put down on paper (or computer screen). There is so much to say and it all just overwhelms me.

I sit in bed in the middle of the afternoon...because I hurt. I hurt a lot these days and I am paralyzed on how to deal with it. I spent 9 months working with a trainer. "Building my core" and working to make my lower stomach muscles strong to rehab the stomach area where all the surgeries were. I saw great improvements in myself. I was squating and lifting and feeling like life would be back to normal one day. But, every time I tried to do anything that involved stomach muscles, I would hurt myself and take a huge step backwards. It hurts to roll over in bed. It hurts to stand up or sit down. I just don't know if it will ever be better. I finally decided to go to the surgeon. My pain is where my hernia was, and there is mesh covering the hernia. I could actually feel it moving inside me. It is so painful. It sits on my hip bone. If I rotate my body, it feels like the hernia is pulling all the way to my belly button. After days in bed on vicodin I finally talked to the transplant team in San Francisco. They thought my hernia may have popped out of the mesh and sent me to a local surgeon to see what to do.

I had a cat scan and had hope that this would lead to the surgery that would end my pain. The results were devastating. The hernia is still under the mesh and the pain may be permanent. The multiple surgeries have left nerve damage and scar tissue. The dr went on to say that he never expects to be Brad Pitt, and I should just walk. He doesn't do sit ups, so I should be fine. I just wanted to cry. It is like he has no understanding of what your core does. It hurts to lay down. It hurts to get up. It hurts to cough. It hurts to laugh. How does that have anything to do with vanity.

Little things that I do through out the day cause shooting pains (nerve pain I believe) and really uncomfortable "twinges". On days like today, being anywhere but in the bath/shower or bed seem so difficult. I dream of the warmth of the bath, or the comfort of a heating pad as the heat dulls the pain. I just can not accept this as a long term answer.

I have seen people in much worse positions move on to live normal lives and that is what I am demanding. I want to swim, and be able to do flip turns. I want to dance again. I want to ski and go tubing in the snow. I am tired of living in a way where I am in constant pain, or fear that any movement will lead to more pain. I refuse.

So now I must decide how to move forward. I must find a doctor who will listen and find a solution. I am willing to do anything. I have heard everything from physical therapy to nerve shots. I just am in so much pain I can't think straight. I just don't have the energy to fight right now. I am making small lists and trying my best to move forward, but it is so hard.

I still have my battle with social security, Sackett & Associates, and Assurant (long term disability). All of these are time sensitive and so important. But right now, my focus has to be my pain.

The other day there was a news story about an athlete who had stomach surgery to remove scar tissue. He was saying it helped his pain so much. I continue to ask questions and fight. I never thought I would be the side-lined parent watching while the kids skiied, swam, or just lived. I accepted the fact that I had to be that for a while, but I now want to live again. I just have no idea on how

So for now, I am off to shower..trying to numb the pain without reaching for pain meds AGAIN. I really hope to get a "walk" in today, but it isn't looking good.

More soon.
Cath

quick update

I owe everyone an apology. I have not been posting for a while. The truth is I have been so frustrated, I haven't wanted to post. I sit and think of all the things I have to say, and decide I am too tired to write it all! So here is the post I hope leads to me getting back on track.

There are two developments in my health/disability.

The first is my side effects. For months I have been sick. I spend hours a day in the bathroom. I hate to complain as I am so much better than I was pre-transplant, but I am not where I want to be. I don't know when I will feel sick...or for how long. I do not know how to get life back on track until I settle this. The doctors are so excited about my kidney, I think this is not as important to them. The bad part is, if I skip a dose..the next 8 hours or so I feel better. The last week I have been skipping doses during the day which allowed me to do a lot more. But, I am way overdue for a blood test. I know if I go the doctors will see my levels are much lower and freak. I can not continue this trend.

The second is the mess with my lawyer. I will save this for another date, but this has become a huge mess. The Bottom line is my lawyer was paid the max amount he could get before he did anything. So, he did not have any motivation to do anything. The infuriating part for me, is that I found out when appealing my case, he never turned in anything on my behalf..nothing for years. I got a copy of my file from his staff, (after throwing a fit until I received it) only to find out the only coorespondance he had in my file was the paperwork I signed making him my lawyer, the paperwork he filed with social security asking for some of the money which I had received before I hired him (which was declined) and then a check from social security to him taking money from my sons Social Security. Then there are just piles of notes from me and social security which his firm chooses to ignore, and then a letter saying he wouldn't represent me anymore. I now have to go before a judge to discuss my case. I have to figure out what recourse, if any, I have against the lawyer. Then I have to explain to Assurant that the lawyer took 6K they believe belongs to them. The part I don't think anyone understands about this whole mess is that I probably owe the 6K my lawyer got to Assurant, and will have to pay for it out of my pocket. The story is much longer..much more complex, but for now I hope this gives you some idea with what I am dealing with. More soon.

Cath

Moving Forward

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

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

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

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