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.

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)

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.

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.

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.

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.