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

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

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

Happy Late Thanksgiving

This week was a long week for me. I really pushed myself on a long Thanksgiving day, and even cooked a turkey dinner for 7. For my family, 7 is nothing. There are usually 20 just with immediate family, so 7 is nothing. I promised to make it low key and just do the basic turkey, stuffing, gravy, potatoes and green beans. But by the time dinner was served, I was so tired I was nauseous. Donovan had run a turkey trot and then there was brunch with the in-laws. The day was very busy. Our real family thanksgiving was on Friday, so I was suppose to just rest after dinner, but my brother from New York was in town and wanted to visit and came over with his 3 kids and grandson a day early. They stayed until 1am and by the next day I was really sick.

I was a no show for my traditional early morning shopping trip with my mom and sister and slept until dinnertime. I got enough energy to get to my sisters for dinner, and then came back home and went to bed. I had almost the same day Saturday. There were many family events planned while my brother and his family were in town...most not attended by me. I again made it to dinner and to say goodbye. They left very early this morning.

I spent early this week resting up for this holiday weekend. Needless to say I ended up very disappointed. I feel like I disappointed my brothers family and missed most of the fun. I was really hopeful that I would be great by Thanksgiving. I am actually a little worse.

I have had headaches all week. If that wasn't bad enough, today I tried to make up a little holiday shopping. At the first store, I seemed to have pulled something in my stomach. I was in so much pain I struggled to get back to the car. I drove home trying not to cry. My mom was with me. She put Donovan in the car and helped load everything from the cart, but the trip was very disappointing. Chris is off playing hockey for the first time. I am sad that I will have to tell him the bad news when he gets home. I am sure like he feels like he can't leave for a second.

Tomorrow I am off to see my surgeon at UCSF early in the morning. I will have a lot to ask about...the headaches, and now the stomach. For tonight, I am just resting so more laying around.

I will end with a small "shoutout" to my cousin. She had an eventful weekend. She came home to find a burglar with his car packed with her flat panel television. She is a single mom and blocked the burglar in with her car, her two daughters with her, and called the cops. Us girls may look sweet and innocent, but we are tough as nails. Looks can be very deceiving. Congrats Suzanne. We are so glad you, your girls, and all your property are all ok and the bad guy is off the streets.

Catherine

a late post

Sorry for not posting for a while. It was hard with Chris gone, and since he has been back, I have just been trying to catch up. The last week has been very difficult for me. Not because I am really sick, or in tremendous pain, but because I am not normal yet. I don't have the energy to do all the housework yet, or handle everything life gives us each day. But I feel like I should be better by now. I look around and I see a million things to do. But, I still have a lot of limitations. I just hope that down the road I can be back to the way I was before I got sick...or even better.

Today I went to my month check up. I counted my month as 4 weeks post surgery. But, the doctors considered the 16th of this month as my month post surgery. I am losing one medication, Fluconazole or Diflucan. That is a pill I take once a week. Everything else is staying the same, but even that one pill is a start. I also was given permission to drive a little bit and take a bath. I wasn't suppose to be allowed to do these things for two more weeks. Amazing how little advancements are such victories.

The time Chris was gone was very hard on me. I rely on him so much. He really is my rock. My mother was great. She was constantly here making sure I was ok and taking care of Donovan. My in-laws even took Donovan for 24 hours. I can't tell you how empty my house is without my boys. It is just so hard to take care of a 3 year old when you can't pick him up. Its very difficult to convince yourself you are a good mother when you can't be alone with your child all day.

I had my usual tests today at UCSF. I didn't hear anything back, so I guess that is good. Everything seems to be stable. I tried to stop by Sarahs on the way home, but I didn't get a hold of her until I was back in San Jose. I leave for UCSF at 6.15 am. I usually leave to come back home around lunch. I just couldn't get ahold of her before then. I will post an update on her as soon as I hear.

I can't thank you all enough for your support. The meals, helping with Donovan..even the littlest chores mean so much to me. None of it goes unnoticed. I think it is human nature to concentrate on the negative. I have lost friends who expect me to be the same person I was before I got sick. They look at me to be there for them in a way I can't be right now. But so many more have stepped up and become amazing sources of strength for me.

For that I am really greatful.

Catherine

Lonely Week

Let me start by apologizing for the mistake in my last post. I said I would miss Chris last week. I meant I would miss Chris next week...which is now.

Chris left Sunday very early and caught a flight to Ft Lauderdale via Houston. The flight from Houston to Florida was an adventurous one. He said there were 15 rows, 3 seats each row on the flight and it was EXTREMELY bumpy. He finished by saying how glad he was that I wasn't on that flight. Didn't sound fun at all. For now he is studying hard at the PGA educational center in Port St Lucy..or somewhere near there.

I have been doing as well as can be expected while he is gone. I have not had a bad headache and my mom has been helpful. I know it is really hard for her. She is trying to balance taking care of me, my 3 year old Donovan, and my ailing father. Tomorrow night, Donovan will spend 24 hours with Chris' parents. It should be a nice break for him and my mom can concentrate on my father. I am fine, but not being able to pick up Donovan or drive anywhere...makes it very scary if there is an emergency. I just do not want to be alone with him. Not being able to pick Donovan up is a very scary thing. And if I needed to drive him to the emergency room, I couldn't. I really do feel trapped. I can't wait until I can drive again. I feel like a teenager dreaming of his/her driver's license..and impending freedom.

I continue to have blood draws an average of 2x a week. No real changes to report. Everything seems to be stable. On the negative side, I am not getting a reduction in pills yet. But, I will take the stability any day.

4 more days until Chris' return..but who is counting. :)

Catherine

3 weeks post surgery

Today marks three weeks since I had my transplant. In a lot of ways I am better than expected. I am trying to slowly take myself off pain pills. The incision pain has decreased a lot over the last week, but with my headaches, it is hard to take nothing.

The hardest part for me right now is that I am tired of excepting help. I still can't lift more than 10 pounds and I can not drive. So, there is a lot I can't do. My father was admitted into the hospital for an infection and is not expected to get home for a couple of days. This means Mom is helping Dad and not going to be around. This wouldn't be as tough, but Chris is off to the PGA offices in Florida next week for some testing. So I am going to be struggling alone. Mom has told me not to panic as she will find a way to keep me from being alone and stranded, but I know that taking care of me and Dad will be overwhelming for her.

I never expected to be so dependant on Chris. I was so independent when we met. Being sick is really teaching me to accept help and lean on Chris in a way I never knew I could. I am just so glad he is so patient with me. I will miss him greatly last week.

Sarah is doing great. She is learning to do little walks and even some very light weightlifting. By light, I mean 3 pound weights. Her and I are both very cautious as to not tear our internal stitches. I learned that lesson the hard way my last surgery when I didn't listen and tore my stitches and ended up with a surgical hernia. Now I know better. I always have to learn things the hard way. :)

Thanks again for all the support. The meals that come 3x a week are a life savor. Not having to worry about dinner or large grocery shopping is extremely helpful to me. The food has been amazing. I love to cook, and cant wait to be healthy enough to do so, but I definitely have some new recipes to try.

Had a blood test this morning to test my anti-rejection levels. I will let all know if there is any news.
Cath