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
Monday, October 20, 2008
Happy Monday
I am suprising Aimee with a post of my own, although she has been doing an awesome job.
I just left the hospital and have reached my 2nd destination of the Comfort Inn in San Francisco. I have a great view of the Golden Gate, room service, good cable and high speed internet. I am content. This is to help adjust with all my changes before I go home where Donovan, all my pets and responsibilities lie. The last 5 days has been very intense. But, today is a happy one for me.
The surgery was harder than I thought in some ways, but exactly what I thought as well. Sarah continues to struggle with nausea and pain. That is hard on me. She really has given me the ultimate gift in her kidney. She keeps joking I get nothing else for Christmas this year, but I really can't express my gratitute. How do you thank someone for doing something so selfless and loving. SHe is an amazing friend and I am so greatful she was willing to make such a sacrifice.
I must admit, I am on a lot of drugs at the moment and fear that my blog won't make much sense. I really should leave this to Aimee, but I had an opportunity to say thanks for all the thoughts and prayers. The last 24 hours I have continued to improve and believe I am on my way to a good recovery.
The next 6 months will be tough for me. I have a lot more restricitions than I realized, but to be off dialysis should change my life enough that the others won't seem like much of a comprimise at all.
I will post more with my restrictions later.
love to all.
Cath
I just left the hospital and have reached my 2nd destination of the Comfort Inn in San Francisco. I have a great view of the Golden Gate, room service, good cable and high speed internet. I am content. This is to help adjust with all my changes before I go home where Donovan, all my pets and responsibilities lie. The last 5 days has been very intense. But, today is a happy one for me.
The surgery was harder than I thought in some ways, but exactly what I thought as well. Sarah continues to struggle with nausea and pain. That is hard on me. She really has given me the ultimate gift in her kidney. She keeps joking I get nothing else for Christmas this year, but I really can't express my gratitute. How do you thank someone for doing something so selfless and loving. SHe is an amazing friend and I am so greatful she was willing to make such a sacrifice.
I must admit, I am on a lot of drugs at the moment and fear that my blog won't make much sense. I really should leave this to Aimee, but I had an opportunity to say thanks for all the thoughts and prayers. The last 24 hours I have continued to improve and believe I am on my way to a good recovery.
The next 6 months will be tough for me. I have a lot more restricitions than I realized, but to be off dialysis should change my life enough that the others won't seem like much of a comprimise at all.
I will post more with my restrictions later.
love to all.
Cath
Sunday Update!
Catherine is continuing to make progress down the road to recovery. Saturday was filled with plenty of pain and nausea meds, so Cath was pretty comfortable all day. All the pills make her stomach hurt, but no worse than she imagined. She is plugging through with a positive attitude, and is very excited that Sarah's kidney is working so well in its new home!
Sarah left the hospital on Saturday. She was still in some pain and suprised that the doctors let her go so soon, but she is very excited to be sleeping in her own bed!
Today, Cath was very happy to have her catheter removed! Once the catheter is out, it's important to pee every hour so the stitches in the bladder don't tear. Once she does this a couple times with no complications, she gets her IV removed and can be discharged from the hospital. Cath says this is the hard part, and she had a little trouble with it today. Hopefully things turn around soon so Cath can be cleared to leave. Fingers crossed!
Once Cath is discharged, she will move to a hotel in San Francisco for a few days while she continues her post-op treatment. It won't be long before she is back at home, catching up on her Tivo :)
More to come soon!
Sarah left the hospital on Saturday. She was still in some pain and suprised that the doctors let her go so soon, but she is very excited to be sleeping in her own bed!
Today, Cath was very happy to have her catheter removed! Once the catheter is out, it's important to pee every hour so the stitches in the bladder don't tear. Once she does this a couple times with no complications, she gets her IV removed and can be discharged from the hospital. Cath says this is the hard part, and she had a little trouble with it today. Hopefully things turn around soon so Cath can be cleared to leave. Fingers crossed!
Once Cath is discharged, she will move to a hotel in San Francisco for a few days while she continues her post-op treatment. It won't be long before she is back at home, catching up on her Tivo :)
More to come soon!
Saturday, October 18, 2008
The Days After Surgery
Catherine was doing well on Friday, despite the fact that she suffered through a 12-hour shift with "Nazi Nurse" who switched her from the good, strong painkillers to oral Vicodin. She was feeling quite a bit of pain, but managed to make it down the hallway to Sarah's room four times! Catherine was glad that Sarah had a much nicer nurse, especially since Sarah was really hurting.
When shift change came, Nazi Nurse was replaced with Mhelanie, a much nicer nurse who remembered Cath from the day of her surgery (Catherine came out of the OR and tried to hug her, called her Mom and said "Thank you for taking care of me!"). Mhelanie gave Cath some stronger pain medicine, which made Catherine very happy.
Sarah was released from the hospital on Saturday. The doctors are expecting to release Catherine on Sunday, but might hold her for another day or so. She was feeling better on Saturday, and enjoyed listening to the Coyotes play the Canadiens on XM Radio.
More to come soon....
When shift change came, Nazi Nurse was replaced with Mhelanie, a much nicer nurse who remembered Cath from the day of her surgery (Catherine came out of the OR and tried to hug her, called her Mom and said "Thank you for taking care of me!"). Mhelanie gave Cath some stronger pain medicine, which made Catherine very happy.
Sarah was released from the hospital on Saturday. The doctors are expecting to release Catherine on Sunday, but might hold her for another day or so. She was feeling better on Saturday, and enjoyed listening to the Coyotes play the Canadiens on XM Radio.
More to come soon....
Friday, October 17, 2008
Making some progress...
Good Morning all!
Catherine had an okay night last night. After the surgery, she was in a little pain. But the nursing staff at UCSF is doing everything they can to make her as comfortable as possible. Cath says she enjoyed the "bar" in the operating room and loved the pain cocktails the anesthesiologist gave her. Apparently, they make her pretty funny to talk to... She slept from about 3am-6am, and felt good enough this morning that she wanted to get up and visit Sarah. Standing up made her feel really nauseas, so the nurses sent her back to bed. They said she couldn't see Sarah unless she was able to walk there. A few hours later, our tenacious Cath walked down the hallway!
Cath and Sarah were so happy to see each other for the first time after the surgery. Unfortunately, Sarah had a difficult night. The anesthesia made her very itchy and her face puffed up. She was worried that she was having an allergic reaction, but the nurse said it was nothing to worry about. Chris stayed up all night running back and forth between Cath and Sarah, taking care of both of them. What a guy.. :)
Catherine says her pain is well under control. Although all the pain medicine makes her very sleepy, she is in good spirits.
More to come later tonight!
Catherine had an okay night last night. After the surgery, she was in a little pain. But the nursing staff at UCSF is doing everything they can to make her as comfortable as possible. Cath says she enjoyed the "bar" in the operating room and loved the pain cocktails the anesthesiologist gave her. Apparently, they make her pretty funny to talk to... She slept from about 3am-6am, and felt good enough this morning that she wanted to get up and visit Sarah. Standing up made her feel really nauseas, so the nurses sent her back to bed. They said she couldn't see Sarah unless she was able to walk there. A few hours later, our tenacious Cath walked down the hallway!
Cath and Sarah were so happy to see each other for the first time after the surgery. Unfortunately, Sarah had a difficult night. The anesthesia made her very itchy and her face puffed up. She was worried that she was having an allergic reaction, but the nurse said it was nothing to worry about. Chris stayed up all night running back and forth between Cath and Sarah, taking care of both of them. What a guy.. :)
Catherine says her pain is well under control. Although all the pain medicine makes her very sleepy, she is in good spirits.
More to come later tonight!
Thursday, October 16, 2008
Transplant Update!!!
Hello Everyone, this is Aimee. I'm Catherine's niece and I'll be helping her manage this blog while she is in the hospital. I will post updates as often as I can to let you all know how Catherine is doing...
I just got the latest news from Chris and the rest of the family up at UCSF that the surgery is over and everything went very well! The new kidney is working, and both Catherine and her donor Sarah are in recovery.
I'm sure it's been a long, emotional day for everyone, and I'm so glad to give you some great news!
Thank you so much for your thoughts and prayers through the first step in this process, and I know Catherine appreciates your love, strength, and support for the long road ahead.
I will keep you posted with the latest as soon as I hear more...
I just got the latest news from Chris and the rest of the family up at UCSF that the surgery is over and everything went very well! The new kidney is working, and both Catherine and her donor Sarah are in recovery.
I'm sure it's been a long, emotional day for everyone, and I'm so glad to give you some great news!
Thank you so much for your thoughts and prayers through the first step in this process, and I know Catherine appreciates your love, strength, and support for the long road ahead.
I will keep you posted with the latest as soon as I hear more...
Wednesday, October 15, 2008
The day before
Today I embark on my journey to San Francisco for my kidney transplant. ok, since I live locally, it is journey in theory only ..but a journey nonetheless. I have been waiting for a kidney transplant for almost 4 years. You would think I would be excited and anxious to be getting off dialysis and moving on to a better life. But unfortunately I don't feel that way at all. I can't see past the struggle I will endure the next few weeks to see the positive and I have so many fears.
Fear the transplant will not work
Fear there will be complications during the surgery
Fear I will reject the kidney and therefore cause pain and suffering of myself and my best friend (donating the kidney) for no reason
Fear this will not do what everyone says and many will be disappointed
Fear that I will again be forced to accept the help of my friends and family just to survive.
Anticipation is the hardest part of surgery..major or minor. I was always comfortable with doctors and took all the hard medical treatments with a smile. But, this one is the most difficult for me. I can't wait for it to be over so I can move forward and deal with whatever results may come.
I always try to smile. I don't tell when I am hurting, and I pretend to be fine when I am incredibly sick. This blog is not going to be like that at all. I want to be honest. In the weeks to come I will have both good days and bad. I hope this not only allows my loved ones to follow along but also helps someone else one day. On days I am too sick, I will have others post for me. I will do my best to keep all informed.
Thanks for all the support..until next time.
Cath
Fear the transplant will not work
Fear there will be complications during the surgery
Fear I will reject the kidney and therefore cause pain and suffering of myself and my best friend (donating the kidney) for no reason
Fear this will not do what everyone says and many will be disappointed
Fear that I will again be forced to accept the help of my friends and family just to survive.
Anticipation is the hardest part of surgery..major or minor. I was always comfortable with doctors and took all the hard medical treatments with a smile. But, this one is the most difficult for me. I can't wait for it to be over so I can move forward and deal with whatever results may come.
I always try to smile. I don't tell when I am hurting, and I pretend to be fine when I am incredibly sick. This blog is not going to be like that at all. I want to be honest. In the weeks to come I will have both good days and bad. I hope this not only allows my loved ones to follow along but also helps someone else one day. On days I am too sick, I will have others post for me. I will do my best to keep all informed.
Thanks for all the support..until next time.
Cath
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