I miss this blog. What's happening lately? Well, I celebrated my 3-year kidney anniversary in December 2010 so that's good. I'm still feeling very good overall, but there are some new, irritating side-effects (?) to share.
1) Hair loss. Serious hair loss. It started in September 2010. I'm wearing a "top piece" wig to cover my bald head. I've lost most of the hair right on the top of my head. I still have long hair on the sides and back of my head. Freaky. Initially, the dermatologist (#3) thought this was due to the mysterious rash I'd started seeing her for in July. Now my nephrologist suspects it's a side effect of the Prograf. I have an appt with her in 2 weeks. Fingers crossed.
2) Skin rashes. Starting in January 2009, I started getting a rash. Ultimately, it covered nearly ever part of my body. Little pink circles and RELENTLESS itching. Thank goodness for prescription antihistamines and pretty scarves...and long sleeves. Dermatologist #2 diagnosed me with pityriasis rosea. I finally began to see improvement in late April and it mostly cleared up by June.
3) Skin rash #2. I initially thought the pityriasis rosea was returning, but it was different. Instead of pink circles, there were large areas on my tummy and back where every hair follicle was inflamed, pink and itchy. Derm #2 was stumped and her office staff was rude so I looked for derm #3. She was great, initially, and was excited to solve the mystery. After several visits and 2 skin biopsies, there was no firm diagnosis. Then the rash started changing. The spots were scaly and some would fade only to leave small (1-2mm) bumps where the spots were formerly. This is also about the time my hair started to fall out...leading us back to #1 above.
This rash has continued to evolve. I still have pink spots that start out scaly and then just stay pink for a while until they fade away...after months. They itch, too. In addition to this, I have the follicle inflammation and even infection, but only in certain areas...armpits, breasts and pubic area. The inflammation makes the hair fall out. So no hair there and no hair on my head.
I'm losing my faith in Derm #3. When I asked her about the rash and her thoughts on it, she did one of those classic doctor brush-offs that avoids providing any real, useful information. She doesn't know why my hair is falling out and she can't explain the rash so instead of doing more tests or referring me to another doctor, she is treating the symptoms. Again, I'm hoping my Neph can help and am seeing her in 2 weeks.
I don't know if other post-transplant patients have noticed the same, but I have observed that most specialists I see give up on my diagnosis relatively easily. They don't know much about transplant and they suggest I speak with my Nephrologist. I try to relay what they say, but they don't call each other. Derm #3 even knows of my Nephrologist because she did a residency with her, but she doesn't offer call her.
Another observation about Dermatologists. They aren't very good at clinical medicine. They seem to get into the career to make money on Botox and other money-making cosmetic procedures. When it comes to real medicine, I've been disappointed. I'm very disappointed with that field of specialty.
Tuesday, February 8, 2011
Thursday, April 23, 2009
Hey Jack
I don't think I did anything specific to get out of my rut. I think your wife can help by making suggestions and/or pushing you to do stuff. Six weeks is still pretty soon after the transplant to expect the depression stage to be over. I was away from work for 3 months - only because I took full advantage of the leave time I was given by the doctors. I could have returned to work in 8 weeks. It IS life changing so it was easy for me to dwell on my own struggle - almost feeling sorry for myself. But when I returned to work, finally, I wanted to be normal. I didn't want people to see me as a sick person. That was my priority even though I realize now, I was still a bit depressed when I came back.
I tried to return to the gym as soon as I was allowed because being fit makes me feel normal. The routine was difficult to keep up because I was such a slug for so long (even prior to the transplant I was a slacker about going to the gym). I finally hired a personal trainer to meet with twice a week. It was an investment, but well worth it because when you're paying, you're more likely to go to the gym. Being active is the best thing I know to do to feel better physically and to change my attitude. The rest fell into line as I felt stronger and more fit. When I wrote that blog at 8 months, that was when I was nearly out of my funk. It might take others less or more time, but that's how long is was for me.
Still it's been 16 months now and you feel more and more normal at every milestone: 6 months, 1 year, 14 months, etc. Especially when the docs tell you not to come in again for 3 months. Initially, I was reluctant thinking "What if something goes wrong?", but after a couple of 3 month intervals, that feeling fades. I still go in for 6 week blood tests and those are reassuring.
Something else happened at 8 months that made a huge difference. A friend of mine died of stomach cancer. He was just 36 and he was one of the phone calls I didn't return during my 3 month recovery. I never felt so awful in my life. He took advantage of every free, healthy moment during his health struggle. Visiting friends all over the states, being outdoors, training his dog, buying a new, fast car, and just generally enjoying life. I realized that my transplant was really no big deal. I mean, it's an amazing thing and a miracle that people like my cousin exist, but I'm here, I'm alive, I'm healthy and I should do everything possible to embrace the positive and the excitement in every moment. I want to DO things and being fit gives me the strength to feel capable. I think exercise is the cure for most mental struggles. (you know, that aren't chemically based). :-) The mind-set seems to follow from the after effects of feeling strong and fit.
Good luck to you in your recovery. Don't beat yourself up if it takes time to get out of a rut. You'll get back to "normal" as you are able.
I tried to return to the gym as soon as I was allowed because being fit makes me feel normal. The routine was difficult to keep up because I was such a slug for so long (even prior to the transplant I was a slacker about going to the gym). I finally hired a personal trainer to meet with twice a week. It was an investment, but well worth it because when you're paying, you're more likely to go to the gym. Being active is the best thing I know to do to feel better physically and to change my attitude. The rest fell into line as I felt stronger and more fit. When I wrote that blog at 8 months, that was when I was nearly out of my funk. It might take others less or more time, but that's how long is was for me.
Still it's been 16 months now and you feel more and more normal at every milestone: 6 months, 1 year, 14 months, etc. Especially when the docs tell you not to come in again for 3 months. Initially, I was reluctant thinking "What if something goes wrong?", but after a couple of 3 month intervals, that feeling fades. I still go in for 6 week blood tests and those are reassuring.
Something else happened at 8 months that made a huge difference. A friend of mine died of stomach cancer. He was just 36 and he was one of the phone calls I didn't return during my 3 month recovery. I never felt so awful in my life. He took advantage of every free, healthy moment during his health struggle. Visiting friends all over the states, being outdoors, training his dog, buying a new, fast car, and just generally enjoying life. I realized that my transplant was really no big deal. I mean, it's an amazing thing and a miracle that people like my cousin exist, but I'm here, I'm alive, I'm healthy and I should do everything possible to embrace the positive and the excitement in every moment. I want to DO things and being fit gives me the strength to feel capable. I think exercise is the cure for most mental struggles. (you know, that aren't chemically based). :-) The mind-set seems to follow from the after effects of feeling strong and fit.
Good luck to you in your recovery. Don't beat yourself up if it takes time to get out of a rut. You'll get back to "normal" as you are able.
Sunday, August 10, 2008
8 months from surgery
On August 8th, it was 8 months. Things are still going well. My kidney is functioning well. I have made some additional observations that I thought I would share.
First, don't be surprised if you become depressed after surgery. I was depressed, but not until about 3 weeks out. After my family left and my husband went back to work. At the time, I thought I was just "enjoying" my time alone and away from work. But now I realize I was depressed and avoiding most all tasks...cleaning, fixing meals, bathing, doing laundry, returning phone calls, sending birthdday cards/presents and so on. My biggest regret is not returning the phone calls. thus far, people have been very understanding, but one person did take it personally. I wish I had known this could have happened.
Second, my hair has thinned. I see new 1.5" growth at the top of my head now so I think it's growing back. I have no clue why it thinned, but it wasn't severe. Nobody noticed except me and my hairdresser.
Finally, my ankles swell when I eat too much salty food or when I am on my feet a long time. Also, if I sit in a hard chair a long time...of course my legs are short so there is a lot more pressure on my legs since my feet often don't support my legs rather they hang from the chair. Does that make sense. Anyhow, there is a significant difference in the leg swelling when I make an effort to avoid salty food.
I think I mentioned before that I get shaky sometimes. I *think* it's from the prograf, but I'm not sure. Obviously, it's worse after some caffeine, but I'm not giving up coffee. Cola I can give up though. It's only bothersome when I am at work trying to type or when I am doing some fine work, like, say, plucking my eyebrows. :-)
The doctors have had to reduce my myfortic dosage from 720 to 360 twice per day and then to 180 twice per day. They did this because my white blood cell count was getting too low. It went as low as 2.5. The Nephrologist said this is a bad side-effect of the myfortic. I go in tomorrow morning for my labs so we'll see what the latest numbers indicate.
Today is my donor's birthday so my kidney is also celebrating! It's processing a celebratory beer right now! Happy Birthday Connie!
First, don't be surprised if you become depressed after surgery. I was depressed, but not until about 3 weeks out. After my family left and my husband went back to work. At the time, I thought I was just "enjoying" my time alone and away from work. But now I realize I was depressed and avoiding most all tasks...cleaning, fixing meals, bathing, doing laundry, returning phone calls, sending birthdday cards/presents and so on. My biggest regret is not returning the phone calls. thus far, people have been very understanding, but one person did take it personally. I wish I had known this could have happened.
Second, my hair has thinned. I see new 1.5" growth at the top of my head now so I think it's growing back. I have no clue why it thinned, but it wasn't severe. Nobody noticed except me and my hairdresser.
Finally, my ankles swell when I eat too much salty food or when I am on my feet a long time. Also, if I sit in a hard chair a long time...of course my legs are short so there is a lot more pressure on my legs since my feet often don't support my legs rather they hang from the chair. Does that make sense. Anyhow, there is a significant difference in the leg swelling when I make an effort to avoid salty food.
I think I mentioned before that I get shaky sometimes. I *think* it's from the prograf, but I'm not sure. Obviously, it's worse after some caffeine, but I'm not giving up coffee. Cola I can give up though. It's only bothersome when I am at work trying to type or when I am doing some fine work, like, say, plucking my eyebrows. :-)
The doctors have had to reduce my myfortic dosage from 720 to 360 twice per day and then to 180 twice per day. They did this because my white blood cell count was getting too low. It went as low as 2.5. The Nephrologist said this is a bad side-effect of the myfortic. I go in tomorrow morning for my labs so we'll see what the latest numbers indicate.
Today is my donor's birthday so my kidney is also celebrating! It's processing a celebratory beer right now! Happy Birthday Connie!
Tuesday, April 8, 2008
Side Effects
I can't believe how long it has been since my last post. I just decided I wouldn't make myself post when I didn't really feel like it. After all, this blog was about me dealing with my PKD and planning for transplant, not about being accountable. Today I feel like posting.
I feel mostly normal. I'm not really in shape still, but I'm back at the gym and getting in better shape every day. I haven't lost all of the post-transplant weight, but it'll happen gradually (just about 15 lbs to go.) The bummer is that I don't fit into most of my clothes and I don't want to shop for a bunch of new stuff. I'm on a 6-week plan to get back into them.
Otherwise, I am having some mild side effects. Insomnia and "intestinal problems" (if you know what I mean.) A lot of the latter. If you can believe it, my transplant coordinator suggested I take citrucel or the like to "add bulk." Why would you prescribe more fiber that is typically for folks with the opposite problem to someone with this problem? I am a vegetarian besides so my diet is full of "bulk." I have a call out to my doctor to get further advice. From what I read, it's bad to have diarrhea in the long term because it causes dehydration and, as you know, dehydration is no good for the new kidney. I'm drinking as much as I can to counteract the dehydration.
They gave me Ambien for my insomnia, but after being on it for a few days, my blood tests showed some elevated liver readings - which didn't necessarily proving any causation -- The doctor suspected the Prograf telling me that Prograf in high doses can damage the liver. The following week, my blood tests showed my liver was just fine - the numbers were back down to normal. They want to keep watching it and not make any medication changes. After that happened I decided only to take the meds I absolutely have to take. I just stay up as late as I want until I am truly exhausted so I fall right asleep. After about a week, I think I am finally adjusted to going without the Ambien. The thing is that the Prograf causes my hands to shake and my mind races...I get fidgety and can't chill. It's a bummer.
One more thing. I mentioned I'm a vegetarian, but I do eat eggs and dairy. Not a lot, but I do eat them. Anyhew, my latest blood tests included a cholesterol test. I apparently have high cholesterol: 220 total, 141 LDL and 59 HDL. The transplant coordinator told me that the Prograf can also cause elevated cholesterol levels. DUDE! I'm now trying to minimize my dairy and egg consumption since that's the only cholesterol I consume. I'm limiting myself to 1 egg per week maximum and will cut back on dairy. My only sources of dairy are whole cream in my daily coffee, low fat yogurt 2-3 days per week, cheese 3-4 times per week and occasionally I'll have sour cream with my Mexican food or cream cheese on a bagel. Not much, but I'm going to cut back anyhow. I really don't want to take a pill for cholesterol, but I will if I have to. We'll see.
I feel mostly normal. I'm not really in shape still, but I'm back at the gym and getting in better shape every day. I haven't lost all of the post-transplant weight, but it'll happen gradually (just about 15 lbs to go.) The bummer is that I don't fit into most of my clothes and I don't want to shop for a bunch of new stuff. I'm on a 6-week plan to get back into them.
Otherwise, I am having some mild side effects. Insomnia and "intestinal problems" (if you know what I mean.) A lot of the latter. If you can believe it, my transplant coordinator suggested I take citrucel or the like to "add bulk." Why would you prescribe more fiber that is typically for folks with the opposite problem to someone with this problem? I am a vegetarian besides so my diet is full of "bulk." I have a call out to my doctor to get further advice. From what I read, it's bad to have diarrhea in the long term because it causes dehydration and, as you know, dehydration is no good for the new kidney. I'm drinking as much as I can to counteract the dehydration.
They gave me Ambien for my insomnia, but after being on it for a few days, my blood tests showed some elevated liver readings - which didn't necessarily proving any causation -- The doctor suspected the Prograf telling me that Prograf in high doses can damage the liver. The following week, my blood tests showed my liver was just fine - the numbers were back down to normal. They want to keep watching it and not make any medication changes. After that happened I decided only to take the meds I absolutely have to take. I just stay up as late as I want until I am truly exhausted so I fall right asleep. After about a week, I think I am finally adjusted to going without the Ambien. The thing is that the Prograf causes my hands to shake and my mind races...I get fidgety and can't chill. It's a bummer.
One more thing. I mentioned I'm a vegetarian, but I do eat eggs and dairy. Not a lot, but I do eat them. Anyhew, my latest blood tests included a cholesterol test. I apparently have high cholesterol: 220 total, 141 LDL and 59 HDL. The transplant coordinator told me that the Prograf can also cause elevated cholesterol levels. DUDE! I'm now trying to minimize my dairy and egg consumption since that's the only cholesterol I consume. I'm limiting myself to 1 egg per week maximum and will cut back on dairy. My only sources of dairy are whole cream in my daily coffee, low fat yogurt 2-3 days per week, cheese 3-4 times per week and occasionally I'll have sour cream with my Mexican food or cream cheese on a bagel. Not much, but I'm going to cut back anyhow. I really don't want to take a pill for cholesterol, but I will if I have to. We'll see.
Wednesday, January 23, 2008
New transplant research -- No immunosuppresants!?
According to some research published in the NEJM, some doctors are experimenting with doing bone marrow transplantation along with kidney transplants in order to change the recipient's immune system and avoid the need for immunosuppressive drugs! Check it out:
1) News article written for the non-medical professional: http://www.reuters.com/article/email/idUSN23648705
2) New England Journal of Medicine articles:
http://content.nejm.org/cgi/content/short/358/4/362 (Volume 358:362-368, January 24, 2008, Number 4)
http://content.nejm.org/cgi/content/short/358/4/353 (Volume 358:353-361, January 24, 2008Number 4)
1) News article written for the non-medical professional: http://www.reuters.com/article
2) New England Journal of Medicine articles:
http://content.nejm.org/cgi/content/short/358/4/362 (Volume 358:362-368, January 24, 2008, Number 4)
http://content.nejm.org/cgi/content/short/358/4/353 (Volume 358:353-361, January 24, 2008Number 4)
Exercise, Work...
I don't even open my work email. It's such a relief not to have to worry about any of that. I still don't want to go back. Maybe I'll miss it soon...I hope so because I don't want to go back on a negative note. I plan to go back WANTING to go back.
I've been knitting non-stop. The transplant coordinator says the Prograf I'm taking can make my mind really active and my body somewhat -- my hands shake -- so the knitting really keeps my mind busy. It could also be that I'm not used to the clearheadedness after being so mentally muddled prior to the surgery. I think it's both. Another side effect of this...call it restlessness...is trouble sleeping. I put up with it for weeks thinking it was because of my physical discomfort, but it just got worse and worse until it was taking me 1 1/2 - 2 hours to fall asleep and then I'd wake up very easily all night long. The doctor's office suggested benadryl, but that didn't help. Then they prescribed Ambien. That's been helpful, but I worry about becoming dependent on it since is can be habit forming. Still, I want to sleep so I called and asked for a refill today. Then I did some research on sleeping meds and found something online about other sleeping meds that may not be habit forming. Now I'm wondering why they gave me Ambien so quickly when they could have given me Lunesta. I guess I'll see what they prescribe as a replacement today.
I was given the approval to do cardio exercise when I saw the doctor last Thursday. I started on Saturday with a brisk 25 minute walk. Sunday we walked a lot because we went to Ikea. It wasn't exactly cardio, but it was a lot of walking. I walked again on Monday and went to the gym on Tuesday. My first cardio walk was difficult because my thigh wound was sore and pulling. The pulling and tightness are really uncomfortable. Not painful, but uncomfortable. I stopped mid-way through to stretch a bit and was able to finish up going slowly at first. I felt stronger on Monday and didn't even have to rest mid-way through. But yesterday was the best. I did 25 minutes on the eliptical machine with my heart rate around 150 the entire time. Prior to the surgery I had anemia and I wasn't able to get my heart rate up any higher than 140 without losing my breath. I'd shoot for 138 for 30-40 minutes. I was shocked that 6 weeks after major surgery I could do 25 minutes of cardio at such a heart rate level, but with no anemia, I guess it makes sense. I'm very thankful.
I've been knitting non-stop. The transplant coordinator says the Prograf I'm taking can make my mind really active and my body somewhat -- my hands shake -- so the knitting really keeps my mind busy. It could also be that I'm not used to the clearheadedness after being so mentally muddled prior to the surgery. I think it's both. Another side effect of this...call it restlessness...is trouble sleeping. I put up with it for weeks thinking it was because of my physical discomfort, but it just got worse and worse until it was taking me 1 1/2 - 2 hours to fall asleep and then I'd wake up very easily all night long. The doctor's office suggested benadryl, but that didn't help. Then they prescribed Ambien. That's been helpful, but I worry about becoming dependent on it since is can be habit forming. Still, I want to sleep so I called and asked for a refill today. Then I did some research on sleeping meds and found something online about other sleeping meds that may not be habit forming. Now I'm wondering why they gave me Ambien so quickly when they could have given me Lunesta. I guess I'll see what they prescribe as a replacement today.
I was given the approval to do cardio exercise when I saw the doctor last Thursday. I started on Saturday with a brisk 25 minute walk. Sunday we walked a lot because we went to Ikea. It wasn't exactly cardio, but it was a lot of walking. I walked again on Monday and went to the gym on Tuesday. My first cardio walk was difficult because my thigh wound was sore and pulling. The pulling and tightness are really uncomfortable. Not painful, but uncomfortable. I stopped mid-way through to stretch a bit and was able to finish up going slowly at first. I felt stronger on Monday and didn't even have to rest mid-way through. But yesterday was the best. I did 25 minutes on the eliptical machine with my heart rate around 150 the entire time. Prior to the surgery I had anemia and I wasn't able to get my heart rate up any higher than 140 without losing my breath. I'd shoot for 138 for 30-40 minutes. I was shocked that 6 weeks after major surgery I could do 25 minutes of cardio at such a heart rate level, but with no anemia, I guess it makes sense. I'm very thankful.
Monday, January 14, 2008
5 weeks after surgery
Well, it's been 5 weeks now and the time has gone very quickly. At first, my days at home were slow and long, but I have grown accustomed to it and I have something of a routine that seems to make the days go fast...unfortunately. I'm still not ready to go back to work. I could probably go back part time, but I don't feel right about it yet. I don't miss it. I thought I would miss it. If I didn't have to, I wouldn't go back. I just don't care about that career right now. In fact, right now I dread going back. I don't care if I ever see that place again. What I'd really like to do is buy some land and start an organic ranch where I can have cows, goats and chickens. I could make organic milk products and sell free range, organic eggs. Why not? Reason #1: How would I afford my meds? According to my insurance company, my prograf and myfortic alone cost $1500 a month retail. Thankfully, I pay a hell of a lot less (more like $35.) Maybe being a librarian isn't so bad.
Most of the swelling in my abdomen and leg has dissipated. I'm not sure I mentioned that the abdominal scar begins about 2 inches into my pubic hair and runs diagonally up to my right hip. You can imagine the swelling...it has been quite unattractive. I finally caved in and bought high waisted "granny" panties since all of my bikini panties rubbed on my scar. It's nice for the swelling to finally be going away.
The doctor indicated I could begin doing aerobic exercise at 6 weeks. I'm looking forward to trying to jog a bit. I'm ready. I thought I would be off the prednisone by now, but they keep having to increase my prograf to try to get me to the "appropriate level." I'm supposed to get my blood work done twice weekly so they can adjust the prograf accordingly -- twice a week, but since the lab was closed for the holidays for 2 Mondays/Tuesdays in a row, I think I got off schedule. Two weeks ago, my levels were finally good and the surgeon took my prednisone down to 15 mg per day, but last Friday, they were not good any longer. They increased the prograf again. I only have to stay on the prednisone as long as the prograf levels are too low. I believe I'm beginning to see the effects of the prednisone -- eating a lot, gaining weight, a little puffiness and being unable to sleep. I finally asked for a sleeping pill -- that has been a life saver.
Overall though, things are really really good. I feel lucky and grateful every day. I owe a lot of phone calls though since I haven't felt like talking on the phone for weeks now. There are just so many people who have called. I feel like a heel for not having dealt with it sooner. I will try to call one person every day this week...and next...to catch up.
The graft wound on my thigh still hasn't healed. It seems that a lymph gland was cut and it has been draining and draining, making it difficult for the wound to heal. Finally, last week, it stopped draining long enough to heal over mostly, but not completely. There is a lump under the scar where the lymph fluid seems to be collecting. It's sore like a bruise, but no big deal. The doctor is "optimistic" that it will heal although he did indicate that in a worst case, they have to "go back in" to fix the gland. I hope that doesn't become necessary. In the meantime, I clean and change the bandage a couple times a day. I cover it when I shower. The tape has made my skin raw so the doctor gave me this stretchy, circular netting type stuff to hold the gauze pads in place without adhesive. That was a relief as it gave my poor skin a break.
I am walking around normally, but still feel pressure in the abdominal wound. In fact, I can feel individual stitches through my skin! I look forward to being able to exercise because that's what will help me feel most normal again. All this sitting around is making me lazy. I want to get back into shape. When I go for walks I get knots in my leg muscles I am so out of shape. That's most uncomfortable when I'm trying to get to sleep. I have to remember to do a lot of stretching when I start exercising again in order to prevent the knots.
Most of the swelling in my abdomen and leg has dissipated. I'm not sure I mentioned that the abdominal scar begins about 2 inches into my pubic hair and runs diagonally up to my right hip. You can imagine the swelling...it has been quite unattractive. I finally caved in and bought high waisted "granny" panties since all of my bikini panties rubbed on my scar. It's nice for the swelling to finally be going away.
The doctor indicated I could begin doing aerobic exercise at 6 weeks. I'm looking forward to trying to jog a bit. I'm ready. I thought I would be off the prednisone by now, but they keep having to increase my prograf to try to get me to the "appropriate level." I'm supposed to get my blood work done twice weekly so they can adjust the prograf accordingly -- twice a week, but since the lab was closed for the holidays for 2 Mondays/Tuesdays in a row, I think I got off schedule. Two weeks ago, my levels were finally good and the surgeon took my prednisone down to 15 mg per day, but last Friday, they were not good any longer. They increased the prograf again. I only have to stay on the prednisone as long as the prograf levels are too low. I believe I'm beginning to see the effects of the prednisone -- eating a lot, gaining weight, a little puffiness and being unable to sleep. I finally asked for a sleeping pill -- that has been a life saver.
Overall though, things are really really good. I feel lucky and grateful every day. I owe a lot of phone calls though since I haven't felt like talking on the phone for weeks now. There are just so many people who have called. I feel like a heel for not having dealt with it sooner. I will try to call one person every day this week...and next...to catch up.
The graft wound on my thigh still hasn't healed. It seems that a lymph gland was cut and it has been draining and draining, making it difficult for the wound to heal. Finally, last week, it stopped draining long enough to heal over mostly, but not completely. There is a lump under the scar where the lymph fluid seems to be collecting. It's sore like a bruise, but no big deal. The doctor is "optimistic" that it will heal although he did indicate that in a worst case, they have to "go back in" to fix the gland. I hope that doesn't become necessary. In the meantime, I clean and change the bandage a couple times a day. I cover it when I shower. The tape has made my skin raw so the doctor gave me this stretchy, circular netting type stuff to hold the gauze pads in place without adhesive. That was a relief as it gave my poor skin a break.
I am walking around normally, but still feel pressure in the abdominal wound. In fact, I can feel individual stitches through my skin! I look forward to being able to exercise because that's what will help me feel most normal again. All this sitting around is making me lazy. I want to get back into shape. When I go for walks I get knots in my leg muscles I am so out of shape. That's most uncomfortable when I'm trying to get to sleep. I have to remember to do a lot of stretching when I start exercising again in order to prevent the knots.
Sunday, December 23, 2007
Public Relations
I don't think I mentioned that a medical center public relations staff member came to visit me in the hospital. She somehow heard about my 22 hour stay in post-op and came to get my story. While she was there, we complained about the doctors not answering their pages, too. She brought a fleece blanket with the name of the medical center printed on it. She also offered my husband her business card with a note on the back that would allow free parking for the rest of our stay. We were only there for one more day, but my husband did try to use the card. The parking lot attendant didn't know what do make of it and didn't want to accept it. She even tried to take away the card, but he managed to get it back. We are planning to call her back to see what they are going to do to fix the post-op/no-rooms-available problem. Whatever. At least my post-op nurse was the best nurse I had for the entire stay. She was terrific.
I'm a bitch
I have tried to let this go, but after an hour in bed unsuccessfully attempting sleep, I figured I'd get my rant out and be done with it. Before I do, I want to note that several individuals from my work have sent me very nice get well cards. I also want to note that I understand it's holiday time and people have a lot of things going on in their lives. Here's my rant:
My workplace has not sent me flowers or a card -- I'm talking about the group as a whole. The cards I mentioned before came from people in the department where my office resides. I had only worked near them for about one month prior to leaving for surgery. Previous to that I worked with 2 other departments quite closely -- for a 1 1/2 years. I would quite easily chalk this oversight up to the holidays and the fact that many of the people in those departments are big social dorks, but for one fact: Six months ago, another co-worker in one of those two departments was out for hip replacement surgery. While she was out, I chipped in to send her flowers and a card NOT ONCE, BUT TWICE. Fucking twice! While I was in the hospital, the head of one of those departments sent me an email message through the hospital staff. (They apparently have some way to received such messages.) A nurse printed the stupid thing out and delivered it to my room. Otherwise, nothing. And it's not just these 2 departments, I am faculty and the faculty chair didn't send me anything either. When I mentioned this to my mother, she was surprised. Isn't it normal that your workplace sends you at least a group card when you're out for surgery?
I have mixed feelings...I feel bad for complaining because they really don't HAVE to do anything. Also, I feel angry for being slighted. Then again, I tell myself not to take things personally -- and don't EXPECT anything. I mean, my expectations that they WOULD send a card or flowers is what is being let down right now and they aren't responsible for MY expectations. However, that doesn't mean I can easily think myself out of these feelings. And that's what's bothering me. If only they hadn't sent that other woman 2 FUCKING floral arrangements....TWO! It's just not right.
My workplace has not sent me flowers or a card -- I'm talking about the group as a whole. The cards I mentioned before came from people in the department where my office resides. I had only worked near them for about one month prior to leaving for surgery. Previous to that I worked with 2 other departments quite closely -- for a 1 1/2 years. I would quite easily chalk this oversight up to the holidays and the fact that many of the people in those departments are big social dorks, but for one fact: Six months ago, another co-worker in one of those two departments was out for hip replacement surgery. While she was out, I chipped in to send her flowers and a card NOT ONCE, BUT TWICE. Fucking twice! While I was in the hospital, the head of one of those departments sent me an email message through the hospital staff. (They apparently have some way to received such messages.) A nurse printed the stupid thing out and delivered it to my room. Otherwise, nothing. And it's not just these 2 departments, I am faculty and the faculty chair didn't send me anything either. When I mentioned this to my mother, she was surprised. Isn't it normal that your workplace sends you at least a group card when you're out for surgery?
I have mixed feelings...I feel bad for complaining because they really don't HAVE to do anything. Also, I feel angry for being slighted. Then again, I tell myself not to take things personally -- and don't EXPECT anything. I mean, my expectations that they WOULD send a card or flowers is what is being let down right now and they aren't responsible for MY expectations. However, that doesn't mean I can easily think myself out of these feelings. And that's what's bothering me. If only they hadn't sent that other woman 2 FUCKING floral arrangements....TWO! It's just not right.
Monday, December 17, 2007
First Week is the Hardest
I started feeling really good Sunday. I don't know why, but I'm not complaining. After more than a week of nausea from all of the meds, I am ready for feeling good. Here is a list of the pills I take daily:
6, 1 mg Prograf (Tacrolimus) - prevents rejection
2, 350 mg Myfortic (Mycophenolate sodium) - prevents rejection
4, 5 mg Prednisone (steroid) - prevents rejection
1, 450 mg Valcyte (valganciclovir Hydrochloride) - treats/prevents viral infections
1, 400/80 mg Bactrim (Sulfamethoxazole; Trimethoprim) - treats/prevents bacterial infections
1, 40 mg Protonix (Pantoprazole) -treats/prevents stomach ulcer/hearburn
1, 10 mg Amiodipine - controls blood pressure
1, 10 mg Mycelex Troche (Clotrimazole) 3 times a day - treats/prevents fungal infections
Also, I have another blood pressure medicine I am only required to take when my SBP is greater than 160. I'm a little concerned about my blood pressure. At one point today I had a 147/104 BP. That worries me. If I sit still for a minute or two and measure again, it comes down, but just the fact that it gets that high at all is bothersome. They tell me that the Myfortic can cause the BP increase, but that it should "even out" over time. It'll certainly get better when I begin to exercise again, too.
Honestly, I was so fucking bummed so often over the last week, I was thinking and even saying things that were really awful. At one point in the doctor's office last Friday, I was feeling sick from the meds. My husband was there with me and I said something like "This kidney will last me 20 years if I'm lucky, maybe 25, but then I'll be OK to die. I don't need to live any longer than that if it means going through all of this again. I shouldn't say those things to my husand because it upsets him. He knows I would like to live to be over 100 years old so it was upsetting for him to hear me say that. the good thing is that I don't feel that way any longer.
My surgeon did a beautiful job with the incision. I can't get over how perfect it is. I can see a little bit of it where the steri strips are starting to peel away. It's healing so well I think it will be almost invisible. I am looking forward to thanking him -- and for thanking him again for making the kidney work. I know another surgeon wouldn't have done such an excellent job and I'm grateful he worked on both me and my cousin.
6, 1 mg Prograf (Tacrolimus) - prevents rejection
2, 350 mg Myfortic (Mycophenolate sodium) - prevents rejection
4, 5 mg Prednisone (steroid) - prevents rejection
1, 450 mg Valcyte (valganciclovir Hydrochloride) - treats/prevents viral infections
1, 400/80 mg Bactrim (Sulfamethoxazole; Trimethoprim) - treats/prevents bacterial infections
1, 40 mg Protonix (Pantoprazole) -treats/prevents stomach ulcer/hearburn
1, 10 mg Amiodipine - controls blood pressure
1, 10 mg Mycelex Troche (Clotrimazole) 3 times a day - treats/prevents fungal infections
Also, I have another blood pressure medicine I am only required to take when my SBP is greater than 160. I'm a little concerned about my blood pressure. At one point today I had a 147/104 BP. That worries me. If I sit still for a minute or two and measure again, it comes down, but just the fact that it gets that high at all is bothersome. They tell me that the Myfortic can cause the BP increase, but that it should "even out" over time. It'll certainly get better when I begin to exercise again, too.
Honestly, I was so fucking bummed so often over the last week, I was thinking and even saying things that were really awful. At one point in the doctor's office last Friday, I was feeling sick from the meds. My husband was there with me and I said something like "This kidney will last me 20 years if I'm lucky, maybe 25, but then I'll be OK to die. I don't need to live any longer than that if it means going through all of this again. I shouldn't say those things to my husand because it upsets him. He knows I would like to live to be over 100 years old so it was upsetting for him to hear me say that. the good thing is that I don't feel that way any longer.
My surgeon did a beautiful job with the incision. I can't get over how perfect it is. I can see a little bit of it where the steri strips are starting to peel away. It's healing so well I think it will be almost invisible. I am looking forward to thanking him -- and for thanking him again for making the kidney work. I know another surgeon wouldn't have done such an excellent job and I'm grateful he worked on both me and my cousin.
Surgery Day 2, 3, 4, 5
As I mentioned before, I spent the night in post-op. We finally got a room around 2:30 p.m. if I'm remembering correctly ( I know we spent a record 22 hours in post-op). Obviously, that was bullshit about the shift change and getting a room at 8 a.m. There actually weren't any private rooms available, so we had to wait for someone to leave the hospital and for the room to be cleaned.
My graft was taken from my thigh, near the top in the front. By Saturday evening, I noticed that the wound was "leaking." I showed it to the nurse, who said she couldn't change the dressing without an order from the doctor and paged the doctor. I showed at least 2 resident's, maybe 3, on Sunday and the Sunday nurse paged whatever doctor was on call to come by to check on me. I was told over and over from Saturday evening and all day Sunday that my surgeon was coming to my room to change the dressing. By 10:30 p.m. on Sunday, I still hadn't seen the doctor so I called the transplant office and had my transplant coordinator paged. She listened to my complaints and said she'd contact the surgeon. Finally, at 11:30 p.m. on Sunday evening, the surgeon arrived with his resident...I remember 3 people, but I don't remember who the 3rd person was. My surgeon changed the dressing and applied some adhesive strips to hold the glued wound shut better than glue alone. It was completely gross because the wound was gaping open. I was relieved to have it finally taken care of.
By Monday mid-day, the graft had broken open again and was leaking again. The nurse paged the resident on call several times, but by 9 p.m. that evening nobody had come to check me. Since we had been asking all afternoon, as we had done nothing but wait endlessly since we had arrived in this damn hospital, my husband and I got very upset. We decided we'd walk downstairs to the emergency room, where we knew a doctor would be available, we would perhaps have a better chance of seeing a doctor. At least on Sunday, we were told over and over that the doctor would be coming. He even apologized (through the nurse) for the delays. While you're in the hospital, you have this heart monitor on the entire time (a "teli".) I removed them and left them on the bed as we got my robe on and unplugged the IV to prepare for our walk.
It didn't take long for someone to be alerted by the lack of my heart beat in their monitoring room. When the nurse arrived to check on me, we told her we weren't waiting any longer. We were going to see a doctor in the next 20 minutes, or we would go to the emergency room for help. She went to get the charge nurse who told us she'd try to page the resident again. We walked to the nurses station just in time to hear the charge nurse on the phone telling the doctor we were threatening to leave and that I had removed my "teli".
A doctor arrived about 25 minutes later and fixed me up properly with very strong adhesive strips. He stated that the strips that had been used previously were inadequate. He even went to the emergency room to get the proper supplies. He seemed like a very nice man and did a thorough job.
I was pretty upset about this situation. Especially, since the doctor who came was not the doctor on duty. He was the back-up for my surgeon's resident. He diplomatically assured us that she (the resident on duty - my surgeon's resident, Dr. K.) must have been tied up with something important. Dr. K visited me each morning I was in the hospital from Sunday through Wednesday when I left. She had an awful bed-side manner and when I told her my concerns she'd ignore them selectively. Say, if I said I was experiencing A, and B. She address A, but ignore B. Her answers were cursory and sometimes threatening. For example, after 2 days of solid food, I still had not had a bowel movement. (This is an important milestone when recovering from surgery.) Her response was not to "give it time" or something else supportive. She also didn't give me any sense of how long I should expect it to take. (As it turns out, it took about 6 days after I started eating solid food.) She did say "There's only one other solution for that." Clearly referring to an enema. Whatever.
I have nothing but good things to say about the nurses. Their jobs are difficult. People aren't very nice when they are sick. I tried to be as nice as possible while I was there. I would always thank them and ask please for things. Also, when we threatened to leave, I made sure to make it clear that I was upset with the doctors for not responding, but that I understood that the nurses were doing everything possible. Some nurses were better than others, but they were all very kind and proficient. I got the sense they were overworked even though the hospital certainly follows standards for patient to nurse ratios (I hope.) The reason I think that is the way they would seem to run around everywhere like they were always in a hurry. Also, the linens on my bed were only changed when we asked and I only got bathed if I did it myself, which was extremely difficult even when I was able to get out of bed after day 2 (with help.) Bending at the waist was nearly impossible. My husband helped me a lot, but I just didn't want to ask him to bath me, too. I mean, there has to be some detail sparing.
Another good thing is they let my husband stay with me in the hospital. They provided a cot for him and everything. He would go home during the day when my Mom or a friend was there with me in order to shower and check on the cats. Sometimes, he'd take a nap since we were always awakened at 6 a.m. in the morning for vitals, blood work and weighing -- which meant I had to get out of bed. What a pain, literally.
My graft was taken from my thigh, near the top in the front. By Saturday evening, I noticed that the wound was "leaking." I showed it to the nurse, who said she couldn't change the dressing without an order from the doctor and paged the doctor. I showed at least 2 resident's, maybe 3, on Sunday and the Sunday nurse paged whatever doctor was on call to come by to check on me. I was told over and over from Saturday evening and all day Sunday that my surgeon was coming to my room to change the dressing. By 10:30 p.m. on Sunday, I still hadn't seen the doctor so I called the transplant office and had my transplant coordinator paged. She listened to my complaints and said she'd contact the surgeon. Finally, at 11:30 p.m. on Sunday evening, the surgeon arrived with his resident...I remember 3 people, but I don't remember who the 3rd person was. My surgeon changed the dressing and applied some adhesive strips to hold the glued wound shut better than glue alone. It was completely gross because the wound was gaping open. I was relieved to have it finally taken care of.
By Monday mid-day, the graft had broken open again and was leaking again. The nurse paged the resident on call several times, but by 9 p.m. that evening nobody had come to check me. Since we had been asking all afternoon, as we had done nothing but wait endlessly since we had arrived in this damn hospital, my husband and I got very upset. We decided we'd walk downstairs to the emergency room, where we knew a doctor would be available, we would perhaps have a better chance of seeing a doctor. At least on Sunday, we were told over and over that the doctor would be coming. He even apologized (through the nurse) for the delays. While you're in the hospital, you have this heart monitor on the entire time (a "teli".) I removed them and left them on the bed as we got my robe on and unplugged the IV to prepare for our walk.
It didn't take long for someone to be alerted by the lack of my heart beat in their monitoring room. When the nurse arrived to check on me, we told her we weren't waiting any longer. We were going to see a doctor in the next 20 minutes, or we would go to the emergency room for help. She went to get the charge nurse who told us she'd try to page the resident again. We walked to the nurses station just in time to hear the charge nurse on the phone telling the doctor we were threatening to leave and that I had removed my "teli".
A doctor arrived about 25 minutes later and fixed me up properly with very strong adhesive strips. He stated that the strips that had been used previously were inadequate. He even went to the emergency room to get the proper supplies. He seemed like a very nice man and did a thorough job.
I was pretty upset about this situation. Especially, since the doctor who came was not the doctor on duty. He was the back-up for my surgeon's resident. He diplomatically assured us that she (the resident on duty - my surgeon's resident, Dr. K.) must have been tied up with something important. Dr. K visited me each morning I was in the hospital from Sunday through Wednesday when I left. She had an awful bed-side manner and when I told her my concerns she'd ignore them selectively. Say, if I said I was experiencing A, and B. She address A, but ignore B. Her answers were cursory and sometimes threatening. For example, after 2 days of solid food, I still had not had a bowel movement. (This is an important milestone when recovering from surgery.) Her response was not to "give it time" or something else supportive. She also didn't give me any sense of how long I should expect it to take. (As it turns out, it took about 6 days after I started eating solid food.) She did say "There's only one other solution for that." Clearly referring to an enema. Whatever.
I have nothing but good things to say about the nurses. Their jobs are difficult. People aren't very nice when they are sick. I tried to be as nice as possible while I was there. I would always thank them and ask please for things. Also, when we threatened to leave, I made sure to make it clear that I was upset with the doctors for not responding, but that I understood that the nurses were doing everything possible. Some nurses were better than others, but they were all very kind and proficient. I got the sense they were overworked even though the hospital certainly follows standards for patient to nurse ratios (I hope.) The reason I think that is the way they would seem to run around everywhere like they were always in a hurry. Also, the linens on my bed were only changed when we asked and I only got bathed if I did it myself, which was extremely difficult even when I was able to get out of bed after day 2 (with help.) Bending at the waist was nearly impossible. My husband helped me a lot, but I just didn't want to ask him to bath me, too. I mean, there has to be some detail sparing.
Another good thing is they let my husband stay with me in the hospital. They provided a cot for him and everything. He would go home during the day when my Mom or a friend was there with me in order to shower and check on the cats. Sometimes, he'd take a nap since we were always awakened at 6 a.m. in the morning for vitals, blood work and weighing -- which meant I had to get out of bed. What a pain, literally.
Thursday, December 13, 2007
My Cousin's Surgery
I don't yet have all of the details, but I do know that because there were extra veins on her kidney, she had increased blood loss. She was in the operating room longer than planned. Also, they had to change the incision to a vertical rather than horizontal one. Someone did say that was an easier incision to heal from -- who knows. She was hobbling around same as me and experienced nausea and such. They had to really jostle stuff around on her insides to get the kidney out, too. That's hard on your body. Also, she had some previous laparoscopic surgery so the scar tissue caused problems -- I think it did, at least. I've been drugged up for a lot of the last few days so some of the details were lost in the dilaudid. lol.
I can't believe her kidney is inside me making urine right now. It's awesome. She's awesome.
I can't believe her kidney is inside me making urine right now. It's awesome. She's awesome.
Surgery Day
I reported to the hospital on the day of the surgery at 7a.m. I didn't have to wait long before the admissions people took me in to sign paperwork and get my wrist band identifying me as a patient. A waited a few more minutes with my mother and husband. Maybe 30 minutes before they came to take me to pre-op. There were a lot of surgeries scheduled that morning at there was a back-log of patients in pre-op. So they took me into a short term hospital stay room -- like where outpatients recover. I got into a hospital gown and they put an IV in me. I waited in there for a really long time. Probably an hour or so. A good friend of mine who is an RN at that hospital, checked on the hold-up and discovered that my cousin went into surgery late and therefore, I wouldn't be going in on time either. While I was there, I met the anesthesiologist.
I was finally taken into the pre-op room when a bed opened up. Unfortunately, I had to be wheeled on a gurney through the fucking waiting room to get to pre-op. I had a gown and a shower cap type thing over my hair. It was embarrassing.
I must have waited in pre-op with my husband and friend for over an hour and a half. During that time, they put these squeezey things on my legs to keep my circulation going and prevent blood clots. I met the surgical resident, Dr. K. They rolled me into the operating room and gave me something to relax me. I remember the room being very bright, but there was no music. Shortly after I got there, they put oxygen on my and I remember feeling suffocated by it. It was uncomfortable. I don't know why they thought it was a good thing. Anyhow somebody tightened the mask and leaned over me, upside down, and said "we're going to put you to sleep now, Heather" and that's the last I remember until I woke up.
When I woke up around 5:45 p.m., I remember feeling a lot pain in my right arm. Someone was talking to me, but I don't know who. I was bleary eyed and felt it was difficult to speak. This is all typical when waking from anesthesia. I saw my surgeon across the room and called his name. He came over and stood next to me for a few minutes. Then I wanted my husband and started to cry. I don't remember a lot of pain. It seems like they gave me something right away. I was there with my husband for hours and hours. I was still in post-op at 11:30 p.m. because the hospital didn't have an open room for me. After 6 hours, the bussel and noise in post-op was getting overwhelming. My bed was right across from the phone and nurses station so it was really loud. They kept telling us I would have a room shortly, but I was there for hours and hours. My husband stayed with me, too.
Around midnight, they cleared a room in post-op for me because I was beginning to lose my mind with the ruckus. It was a tiny room, but at least it was private from the rest of the post-op. All of the nurses said that that since it's a trauma hospital, they can't always plan that well for a room to be available when it's needed. Emergencies and all, bla bla. We asked to see a supervisor. When she came by around midnight and told us that a room WAS available, but that there wasn't staff up there to deal with me right now. That after the 7 a.m. nursing shift change, I could be moved upstairs. Sometime around 8 a.m. we should get a room. We thought she was lying by the tone of her voice. Then her shift was over and she went home.
So we spent the night in post-op.
I was finally taken into the pre-op room when a bed opened up. Unfortunately, I had to be wheeled on a gurney through the fucking waiting room to get to pre-op. I had a gown and a shower cap type thing over my hair. It was embarrassing.
I must have waited in pre-op with my husband and friend for over an hour and a half. During that time, they put these squeezey things on my legs to keep my circulation going and prevent blood clots. I met the surgical resident, Dr. K. They rolled me into the operating room and gave me something to relax me. I remember the room being very bright, but there was no music. Shortly after I got there, they put oxygen on my and I remember feeling suffocated by it. It was uncomfortable. I don't know why they thought it was a good thing. Anyhow somebody tightened the mask and leaned over me, upside down, and said "we're going to put you to sleep now, Heather" and that's the last I remember until I woke up.
When I woke up around 5:45 p.m., I remember feeling a lot pain in my right arm. Someone was talking to me, but I don't know who. I was bleary eyed and felt it was difficult to speak. This is all typical when waking from anesthesia. I saw my surgeon across the room and called his name. He came over and stood next to me for a few minutes. Then I wanted my husband and started to cry. I don't remember a lot of pain. It seems like they gave me something right away. I was there with my husband for hours and hours. I was still in post-op at 11:30 p.m. because the hospital didn't have an open room for me. After 6 hours, the bussel and noise in post-op was getting overwhelming. My bed was right across from the phone and nurses station so it was really loud. They kept telling us I would have a room shortly, but I was there for hours and hours. My husband stayed with me, too.
Around midnight, they cleared a room in post-op for me because I was beginning to lose my mind with the ruckus. It was a tiny room, but at least it was private from the rest of the post-op. All of the nurses said that that since it's a trauma hospital, they can't always plan that well for a room to be available when it's needed. Emergencies and all, bla bla. We asked to see a supervisor. When she came by around midnight and told us that a room WAS available, but that there wasn't staff up there to deal with me right now. That after the 7 a.m. nursing shift change, I could be moved upstairs. Sometime around 8 a.m. we should get a room. We thought she was lying by the tone of her voice. Then her shift was over and she went home.
So we spent the night in post-op.
The Surgery - complications
I had my surgery on Friday. Although the stats were with me, I was in the minority. My cousins kidney has some abnormalities that made the transplant difficult. The surgery took nearly 6 hours instead of 3-4 as planned. They had to call in a vascular surgeon to help by taking a vein to from my leg to graft the kidney. They had to place the kidney in a different position than is typical, too, but it works! They spent an hour making sure it was in a good location and wouldn't move. A full hour. I had a great surgeon and I'm absolutely positive this kidney will work for at least the next 20 years. Now it's up to me to take good care of it.
I'm going to take the next few blog entries to talk about the days after my surgery, the hospital stay and what it was really like.
I'm going to take the next few blog entries to talk about the days after my surgery, the hospital stay and what it was really like.
Wednesday, December 5, 2007
Friday is Almost Here
Today was my last day at work before the surgery. (We go in early Friday morning for the surgery.) Several co-workers gave me cards and gifts like magazines and slippers. It's very thoughtful. I wrapped up my duties as well as I could. We managed to run through a lot of features of the software package before I left so that's good. I stopped in to see most of my close co-workers on my way out. Then ran into 3 more on my way out -- what good timing! I set my away message on email, changed my voice mail, and left early.
My cousin arrived Monday and we've been able to spend some time together, catching up. I want everyone to meet her. Maybe they will at the hospital. The thing is, I didn't choose to have this disease, nor is this surgery an option for me. But she chose to give me a kidney. She's doing something amazing completely out of the goodness of her heart. It's overwhelming.
But still my emotions haven't set in. I feel disconnected much of the time. I suspect that's just how my brain is dealing with the situation. I suppose I am more quiet than usual and I'm certainly much more tired, yet I don't have any clear feelings. People say 2 things to me most often: 1) You'll be fine (or something similar) and 2) How do you feel? I don't know how I feel and I'm an honest person, so I usually say that. I'm not nervous. I'm not scared. I am having a hard time believing it's really going to happen -- but I'm not going to think hard about it because the day will be here soon and there isn't any way to prepare for it after all. I think I'm a lot stronger than I knew.
My cousin arrived Monday and we've been able to spend some time together, catching up. I want everyone to meet her. Maybe they will at the hospital. The thing is, I didn't choose to have this disease, nor is this surgery an option for me. But she chose to give me a kidney. She's doing something amazing completely out of the goodness of her heart. It's overwhelming.
But still my emotions haven't set in. I feel disconnected much of the time. I suspect that's just how my brain is dealing with the situation. I suppose I am more quiet than usual and I'm certainly much more tired, yet I don't have any clear feelings. People say 2 things to me most often: 1) You'll be fine (or something similar) and 2) How do you feel? I don't know how I feel and I'm an honest person, so I usually say that. I'm not nervous. I'm not scared. I am having a hard time believing it's really going to happen -- but I'm not going to think hard about it because the day will be here soon and there isn't any way to prepare for it after all. I think I'm a lot stronger than I knew.
Sunday, December 2, 2007
Surgery in 5 days
Time is running out. I've been keeping busy. I went out for lunch with co-workers twice last week and out for dinner Thursday, Friday and Saturday with friends. My friends have been really supportive -- as have my co-workers, but especially my husband. Today he brought home Nintendo DS with the Brain Age game. Something for me to do while I'm recovering. I need to get other activities prepared for the recovery as well. I'd like to do some knitting. I'd also like to do some reading related to my job -- maybe get some ideas for an article. I figure I'll check my work email, too, since I can easily do that on my cell phone. I want to download some new music, too. I need to do some laundry. I need to pack a bag for the hospital. I guess I can wear my own PJs after a few days. I'll bring some. I'll also bring some lotion and lip stuff...I hate to dry out. Deodorant...a little make-up and my hair brush. I'm not sure what else...a bathrobe? I suspect they'll have hospital robes, but I like my robe.
I've been keeping busy with a craft project. I'm making a centerpiece holiday tree -- it's a Styrofoam tree with beads covering it (and silver ribbon.) It's time consuming. I'll have it done in the next day or two.
Tomorrow my cousin gets into town. I'll pick her up at the airport. I should clean the house, but I just don't care. Maybe I'll just run the vacuum tomorrow morning and call it good.
We got a new cat bed today. So far 3 out of 4 of the cats have tried it out. They like new stuff. Funny.
I have to begin taking a couple of anti rejection meds on Wednesday. I'll tell you more about that later. Also, I met with my surgeon on Friday. I'll tell you about that, too.
I've been keeping busy with a craft project. I'm making a centerpiece holiday tree -- it's a Styrofoam tree with beads covering it (and silver ribbon.) It's time consuming. I'll have it done in the next day or two.
Tomorrow my cousin gets into town. I'll pick her up at the airport. I should clean the house, but I just don't care. Maybe I'll just run the vacuum tomorrow morning and call it good.
We got a new cat bed today. So far 3 out of 4 of the cats have tried it out. They like new stuff. Funny.
I have to begin taking a couple of anti rejection meds on Wednesday. I'll tell you more about that later. Also, I met with my surgeon on Friday. I'll tell you about that, too.
Saturday, November 24, 2007
Thanksgiving
This year I have a lot to be thankful for. I suppose a lot of people are thinking that, too. I know there are thousands of transplant patients out there and I'm very close to joining their ranks. I haven't seen my cousin for nearly 20 years and yet she's going to give me a kidney. I saw her this week when I flew home for thanksgiving. I usually stay home with my husband and have a quiet day of cooking, eating and watching the movie Elf. That's our own tradition. This year, I thought it would be a good idea to fly home and see everyone before the big surgery. It was pretty nice. The best part is getting to see my cousin and meet her husband. We had a great time talking and getting to know one another again. She seems truly happy and ready for this surgery.
I should apologize for ranting so about the surgeon mix up. My transplant coordinator spoke with the head surgeon on Monday and I have the correct surgeon again. Thank goodness. My Nephrologist was adamant that I should have the doctor I originally chose -- she was quite firm about it. So we're back on track.
I don't have a lot to say. I'm just waiting these days. I have gained a few pounds. I am looking forward to getting back into great shape after the surgery. I was thinking of planning a bike ride across the country as a goal after the surgery, but that costs a lot of money and takes a lot of time off work. I'll be all out of vacation and sick leave after my recovery, so I found a different goal -- a sprint triathlon. I know a couple of people who are also interested and one who could help me train. I think this is a great goal.
I'm sure I'll have more to talk about after the surgery. I'll certainly plan to share the details with you.
I should apologize for ranting so about the surgeon mix up. My transplant coordinator spoke with the head surgeon on Monday and I have the correct surgeon again. Thank goodness. My Nephrologist was adamant that I should have the doctor I originally chose -- she was quite firm about it. So we're back on track.
I don't have a lot to say. I'm just waiting these days. I have gained a few pounds. I am looking forward to getting back into great shape after the surgery. I was thinking of planning a bike ride across the country as a goal after the surgery, but that costs a lot of money and takes a lot of time off work. I'll be all out of vacation and sick leave after my recovery, so I found a different goal -- a sprint triathlon. I know a couple of people who are also interested and one who could help me train. I think this is a great goal.
I'm sure I'll have more to talk about after the surgery. I'll certainly plan to share the details with you.
Saturday, November 17, 2007
Misled
I received an email message yesterday from my transplant coordinator. She wanted to let me know when my appointments are the week before my surgery. One of those appointments is with the surgeon. I have met my surgeon. Let's call him Dr. A. I med Dr. A back in May during my transplant evaluation. I'm sure I've already told you all about the evaluation, but to jog your memory, I met with the nephrologist, the neph's resident, the transplant coordinator (who was later fired and I was assigned a new coordinator), a social worker, a nutritionist, the financial/insurance person...and *MY* surgeon, Dr. A. I have attended informational workshops at the medical center featuring *MY* surgeon. I have researched his literature, his career and have asked other medical center staff/doctors for recommendations about him. All of this was positive and I confidently chose this medical center for my procedure.
The e-mail message I received yesterday indicated that I would be meeting with my surgeon...Dr. B. Who the fuck is Dr. B? When did Dr. B come into the picture? What kind of career has he had? Where was he educated? What has he published? Why didn't anyone mention this motherfucker before? Where the hell does this medical center get off introducing me to MY surgeon months ago and then pulling a bait and switch? I've been under the impression for months now that Dr. A would be my surgeon. Now, 3 weeks before the big day, I discover that this is not the case. I'm am very angry. I have my coordinator's cell phone number and called her Friday evening. She said she'd look into it and get back to me Monday. She assured me both surgeons are quite good and I don't have anything to worry about, but that's not the goddamn point, is it? I trusted them and they have now fucked it all up. How can I ever get back to the trusting point I was at previously? It's not as if I have a choice about whether I'll go there for the surgery now -- I'm too far along now -- I don't have time to be evaluated and approved at another hospital before I will require the surgery. Nice how well that worked out, isn't it? motherfucking, lying, pricks.
The e-mail message I received yesterday indicated that I would be meeting with my surgeon...Dr. B. Who the fuck is Dr. B? When did Dr. B come into the picture? What kind of career has he had? Where was he educated? What has he published? Why didn't anyone mention this motherfucker before? Where the hell does this medical center get off introducing me to MY surgeon months ago and then pulling a bait and switch? I've been under the impression for months now that Dr. A would be my surgeon. Now, 3 weeks before the big day, I discover that this is not the case. I'm am very angry. I have my coordinator's cell phone number and called her Friday evening. She said she'd look into it and get back to me Monday. She assured me both surgeons are quite good and I don't have anything to worry about, but that's not the goddamn point, is it? I trusted them and they have now fucked it all up. How can I ever get back to the trusting point I was at previously? It's not as if I have a choice about whether I'll go there for the surgery now -- I'm too far along now -- I don't have time to be evaluated and approved at another hospital before I will require the surgery. Nice how well that worked out, isn't it? motherfucking, lying, pricks.
Thursday, November 15, 2007
How Am I?
I have good days and not so great days. Mostly, I think this experience has changed me for the better. I think I’m a lot stronger and a lot more at ease with life in general. But, at times it strikes me that this is actually going to happen and I get really frightened. Last Tuesday was a rough day, but I had a lot of meetings so I was able to keep my mind busy.
I have to make myself eat because I just don’t feel like it. My body says it’s hungry, but I just don’t care. I don’t have much desire to eat it and it doesn’t taste good. Therefore, I eat stuff that tastes good, but is probably not very good for me, e.g. donuts, candy. Sometimes I get to a point where I wish someone could just put their arms around me and stop time…that all this would go away.
I have to make myself eat because I just don’t feel like it. My body says it’s hungry, but I just don’t care. I don’t have much desire to eat it and it doesn’t taste good. Therefore, I eat stuff that tastes good, but is probably not very good for me, e.g. donuts, candy. Sometimes I get to a point where I wish someone could just put their arms around me and stop time…that all this would go away.
Tuesday, November 13, 2007
Still Not Sick
I find it really difficult to believe I'm going to have a kidney transplant in less than 1 month. I feel fine most days. the worst "symptom" I'm experiencing is fatigue. I don't have pain. My latest labs from Friday show a creatinine of 5.4.
I'm having a difficult time concentrating at work. I have been working short days -- leaving to take naps in the evenings. I don't feel bad about it because, hell, I'm sick even if I don't feel more typical symptoms associated with illness. They can deal with it.
I'm having a difficult time concentrating at work. I have been working short days -- leaving to take naps in the evenings. I don't feel bad about it because, hell, I'm sick even if I don't feel more typical symptoms associated with illness. They can deal with it.
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