I apologize for not posting. I have been trying to attend some of Donovan's Halloween festivities and then resting as much as possible.
I never dreamed I would be able to attend Donovan's Halloween Parade. But with my mom as acting chauffeur, I was able to get there and watch the event. Donovan was dressed as a pirate and announced that he was going to be like Daddy, dress up and wave to the crowd. He led his class out and waved and smiled. The first lap around the parking lot, he didn't even notice me or his Grandmother. I am so happy I was able to attend this event. I feel like I have missed so much the last 4 years, but I am so excited to not miss things in the future.
As for my kidney update, my temperature, and blood pressure have been stable since Monday and I had a blood test today. I didn't hear anything back, which means everything is stable. I talked to Sarah yesterday. She sounded much better. Still not walking any hills, but her spirits were up. I take this to mean her pain was down which makes me really happy.
I expected my weight to fluctuate due to the steroids to keep me from rejecting the kidney. Last time they dumped steroids into me, I put on 35 pounds in 2 weeks. I had mentally prepared myself for that. But, my main surgeon is not a fan of long term steroids and filled me full of prednisone for 5 days, then pulled me off completely. I am on Cellcept and Prograff to keep me from rejecting the kidney. I take 12 pills of those 2 medications alone each day. But, I have lost 20 pounds since my surgery. I was pleasantly surprised. I hope that continues. Between the dialysis solution and steroids, I had almost given up trying to get back to my normal weight. This gives me hope that in the next year, I will be back to a decent size. A size in which I can wear my "cute" clothes and suits again.
Its late, and I am tired. I am excited to try to do a little Halloween celebrating tomorrow with Donovan (I even carved a pumpkin). This surgery has been hard..the hardest I have ever gone through, but I prepared for the worst. I am excited I am not missing all of Halloween. This is the first year Donovan is old enough to anticipate Halloween. I am glad I am "conscious" enough to enjoy it.
Off to bed.
Love to all.
Catherine
Friday, October 31, 2008
Tuesday, October 28, 2008
1st trip back to UCSF
Today Sarah and I had our first follow up appointment at UCSF. It was really long and a lot of information was thrown at me, but I will try to sum up.
Sarah and I began with blood tests. We had almost every blood test under the sun, but the point was to see overall kidney function. The best test for that is creatinine.
(http://www.medicinenet.com/creatinine_blood_test/article.htm)
Sarah's creatinine was 1.2, and mine was 1.35. (You can see normal creatinine scores on previous link) My creatinine was over 2 while I was pregnant and escalated to almost 10 before I was on dialysis. This is excellent news. Sarah, however started at 0.6. They don't expect her to ever be that again.
Sarah got to see the nurse first as I had to meet with a social worker to discuss medical, medication expenses and overall issues I will be dealing with the rest of my life. I have to balance trying to not get dropped from insurance due to my chronic illness and not rejecting the kidney.
Sarah had decided she had given herself a hernia (like me after my last surgery). She really pushed herself to walk, and she got a small blood clot. This was very alarming to me as how serious it was when my father had a blood clot. But, I guess this was just under the skin and the Drs were not worried. She was told to not push herself as much.
I got a clean bill of health...under the circumstances. Sarah's kidney seems to love my body and it is clearing everything out. I am being reminded to pee every hour as to not tear my stitches on my bladder (which Sarah does not have to worry about thank god) and go over more medications. I think at the end of this, I should consider being a pharmacist. I could say "oh, I know that drug...I was on it once" for almost anything that was given out.
After that Sarah and I went to pick up our new prescriptions. Sarah and I both got more pain pills and I got some additional nausea pills as when I take 15 pills without nausea medication..I can't keep them down.
I was also told to not push it and to let myself heal. The worst news I got today was that I would not be able to pick Donovan up at 6 weeks. I am too pick up less than 10 pounds the first 6 weeks and 5 pounds each week after. Which means if Donovan doesn't gain any weight, I can hold him in 10 weeks, or 8 weeks from Thursday October 30th. That is a long time to not pick up my baby.
I am tired, hope this helps inquiring minds.
Love to all
Catherine
Sarah and I began with blood tests. We had almost every blood test under the sun, but the point was to see overall kidney function. The best test for that is creatinine.
(http://www.medicinenet.com/creatinine_blood_test/article.htm)
Sarah's creatinine was 1.2, and mine was 1.35. (You can see normal creatinine scores on previous link) My creatinine was over 2 while I was pregnant and escalated to almost 10 before I was on dialysis. This is excellent news. Sarah, however started at 0.6. They don't expect her to ever be that again.
Sarah got to see the nurse first as I had to meet with a social worker to discuss medical, medication expenses and overall issues I will be dealing with the rest of my life. I have to balance trying to not get dropped from insurance due to my chronic illness and not rejecting the kidney.
Sarah had decided she had given herself a hernia (like me after my last surgery). She really pushed herself to walk, and she got a small blood clot. This was very alarming to me as how serious it was when my father had a blood clot. But, I guess this was just under the skin and the Drs were not worried. She was told to not push herself as much.
I got a clean bill of health...under the circumstances. Sarah's kidney seems to love my body and it is clearing everything out. I am being reminded to pee every hour as to not tear my stitches on my bladder (which Sarah does not have to worry about thank god) and go over more medications. I think at the end of this, I should consider being a pharmacist. I could say "oh, I know that drug...I was on it once" for almost anything that was given out.
After that Sarah and I went to pick up our new prescriptions. Sarah and I both got more pain pills and I got some additional nausea pills as when I take 15 pills without nausea medication..I can't keep them down.
I was also told to not push it and to let myself heal. The worst news I got today was that I would not be able to pick Donovan up at 6 weeks. I am too pick up less than 10 pounds the first 6 weeks and 5 pounds each week after. Which means if Donovan doesn't gain any weight, I can hold him in 10 weeks, or 8 weeks from Thursday October 30th. That is a long time to not pick up my baby.
I am tired, hope this helps inquiring minds.
Love to all
Catherine
Saturday, October 25, 2008
A trip to Disney on Ice
So, after having my son stay with grandparents and aunts for the week following my surgery, I really wanted to try to take him out to let him know his family is still here for him. My dear friend Tricia got us handicap tickets to Disney on Ice tonight. We went and had a "family date". Donovan had a blast, but it was quite an experience for me.
I took 2 pain pills before the trip to try to enjoy it as much as possible. The big event for me, was maneuvering to the bathroom before the 1st intermission. I now know I am very good at getting around s turns in a wheelchair. What were the Arena folk thinking making those bathrooms. They are not very handicap friendly!
After all was said and done, Donovan had danced and laughed and hugged and kissed us all night. So, in our minds, it was worth the hassle. Thanks Tricia~ We had a blast.
More soon.
Cath
I took 2 pain pills before the trip to try to enjoy it as much as possible. The big event for me, was maneuvering to the bathroom before the 1st intermission. I now know I am very good at getting around s turns in a wheelchair. What were the Arena folk thinking making those bathrooms. They are not very handicap friendly!
After all was said and done, Donovan had danced and laughed and hugged and kissed us all night. So, in our minds, it was worth the hassle. Thanks Tricia~ We had a blast.
More soon.
Cath
Friday, October 24, 2008
A Busy Day
So, I decided to be daring today and hit the road for something other than Dr visits. I have visited Sarah, but this was my first "public appearance".
I met my dad, mom and niece for lunch. Chris was kind enough to drive me, and it was very painful, but I really liked the idea of being normal again.
I made it all the way through the meal, although I was very uncomfortable, I was glad I went. I came home, immediately took some additional pain medication and am now comfortably resting in my bed.
On a positive note, my kidneys are working so well, I get to drop 2 rejection medications in the morning. That means I am down to 15 pills before breakfast. I will celebrate each pill I decrease!
Cath
I met my dad, mom and niece for lunch. Chris was kind enough to drive me, and it was very painful, but I really liked the idea of being normal again.
I made it all the way through the meal, although I was very uncomfortable, I was glad I went. I came home, immediately took some additional pain medication and am now comfortably resting in my bed.
On a positive note, my kidneys are working so well, I get to drop 2 rejection medications in the morning. That means I am down to 15 pills before breakfast. I will celebrate each pill I decrease!
Cath
Thursday, October 23, 2008
Homecoming!
Today after a "fun filled" trip to UCSF, I made the trek home.
I went for a blood draw to see how the new kidney was doing (well, actually the anti-rejection medication). I had to wait 20 minutes to get into the lab tech. FYI, after surgery, sitting in a waiting room chair for 20 minutes feels like 10 years!. I get in and the tech was angry as I did not have the appropriate paperwork. After explaining that I was fasting and could not take my meds and was in no condition to run around and try to rectify the situation, she reluctantly took my blood. She poked me as I have been poked 1000 times the last 3 years, and of course, nothing. So she jabbed the needle all the way in, as hard as she could. My blood flew up the tube..and all over the place. I was scared to death. I really don't feel pain at all with most blood draws. Needles are not a fear of mine. This nurse...is! After that, I got a lecture about what to do before my next draw on Monday. Then I scurried back to the car as fast as my injured body could take me. I could not get out of there fast enough.
The next hour I spent in the car, with a pillow firmly placed between my stomach and the seat belt. Good news, I arrived home much more comfortable than expected. Other than some nausea from the medications, I had a good day from that point on.
So glad to be home. So glad to have my son around. So glad to go to bed...in my own bed.
Till Tomorrow,
Love
Cath
I went for a blood draw to see how the new kidney was doing (well, actually the anti-rejection medication). I had to wait 20 minutes to get into the lab tech. FYI, after surgery, sitting in a waiting room chair for 20 minutes feels like 10 years!. I get in and the tech was angry as I did not have the appropriate paperwork. After explaining that I was fasting and could not take my meds and was in no condition to run around and try to rectify the situation, she reluctantly took my blood. She poked me as I have been poked 1000 times the last 3 years, and of course, nothing. So she jabbed the needle all the way in, as hard as she could. My blood flew up the tube..and all over the place. I was scared to death. I really don't feel pain at all with most blood draws. Needles are not a fear of mine. This nurse...is! After that, I got a lecture about what to do before my next draw on Monday. Then I scurried back to the car as fast as my injured body could take me. I could not get out of there fast enough.
The next hour I spent in the car, with a pillow firmly placed between my stomach and the seat belt. Good news, I arrived home much more comfortable than expected. Other than some nausea from the medications, I had a good day from that point on.
So glad to be home. So glad to have my son around. So glad to go to bed...in my own bed.
Till Tomorrow,
Love
Cath
Wednesday, October 22, 2008
Wednesday Night
So, I didn't post earlier as it was a hard day. I was very nauseous today and struggled much more than yesterday. The most normal of bodily functions have become more difficult. I felt like I took a step back today, but I hope that I continue tomorrow my forward progress.
I am cleared to move back to San Jose tomorrow to recuperate in my own home. This is exciting and scary all at the same time. My day consists of rest, trips to the bathroom and meals. Tomorrow I will travel to UCSF for blood work before the drive home. It will be uncomfortable..but I will make do.
Going to bed as it is late. More soon.
Cath
I am cleared to move back to San Jose tomorrow to recuperate in my own home. This is exciting and scary all at the same time. My day consists of rest, trips to the bathroom and meals. Tomorrow I will travel to UCSF for blood work before the drive home. It will be uncomfortable..but I will make do.
Going to bed as it is late. More soon.
Cath
Tuesday, October 21, 2008
Tuesday begins
Today I continue to improve. I am spending the day doing...NOTHING. I really want to make sure I am rested and able to go home on Thursday.
Yesterday I had Michelle and Payton visit, as well as Donovan and Chris' brother and sister in law. It was so good to see Donovan but he almost kicked my stomach a couple of times..that could give me a heart attack. At the end of the day, I was definitely tired and ready to lie and heal.
So, I said I would let all know some of my restrictions. My binder is HUGE..so here are a few of my favorites.
1) I can never be around people who have live immunity shots given 2 to 3 days following their shots as I will not be able to fight off the virus. (mumps ect) This includes Donovan.
2) The next 2 months my food must be cooked. No med rare steak or Eggs over easy and definitely no sushi (sniff sniff)
3) No visits to the dentist for 6 months..no visits to the dentist for life without first taking medication and clearing with transplant team
4) Must pee every 2 hours all night every night for next 6 months as to not tear stitches in bladder
5) Always wear sunscreen and sunglasses as my risk for getting skin cancer has increased almost 20% due to low immunity for kidney.
This is all part of my transplant training. It will be life changing, but I still have a lot more freedom. Now I am going back to doing what I do best these days..nothing.
love to all.
Catherine
Yesterday I had Michelle and Payton visit, as well as Donovan and Chris' brother and sister in law. It was so good to see Donovan but he almost kicked my stomach a couple of times..that could give me a heart attack. At the end of the day, I was definitely tired and ready to lie and heal.
So, I said I would let all know some of my restrictions. My binder is HUGE..so here are a few of my favorites.
1) I can never be around people who have live immunity shots given 2 to 3 days following their shots as I will not be able to fight off the virus. (mumps ect) This includes Donovan.
2) The next 2 months my food must be cooked. No med rare steak or Eggs over easy and definitely no sushi (sniff sniff)
3) No visits to the dentist for 6 months..no visits to the dentist for life without first taking medication and clearing with transplant team
4) Must pee every 2 hours all night every night for next 6 months as to not tear stitches in bladder
5) Always wear sunscreen and sunglasses as my risk for getting skin cancer has increased almost 20% due to low immunity for kidney.
This is all part of my transplant training. It will be life changing, but I still have a lot more freedom. Now I am going back to doing what I do best these days..nothing.
love to all.
Catherine
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