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Back To Normal

I’m now 8 months post-transplant, and despite a sick December, I’m doing great once again. Appetite back to normal, only sporadic kidney pain (in my “native” kidneys), and my labs are back to what they should be. I don’t have access to them now, but on my labs this past Tuesday, my creatinine is 1.3 (I usually run 1.2 to 1.3), hemoglobin 12.9, white blood cell count 5, CO2 normal at 23 (had been 17), and my Prograf level is 7.7 (they want it 6-8).

Current transplant meds/immunosuppressants: Prograf 3 mg in am, 2mg in pm, and CellCept 500 mg every 12 hours. I’m also back on Prilosec, and take a bunch of vitamins as well as a baby aspirin.

I’ve noticed more hand tremors lately. After talking to someone who works in our building and also had a kidney transplant for PKD (small world), she has tremors as well, and was told it’s from the Prograf, even with it being a normal level. Again, if that’s the worst I have to deal with it, I’ll take tremors over dialysis any day.

I also had an abdominal ultrasound on Tuesday, which was ordered right before Christmas when I was having the kidney pain and abdominal pain. I asked my doc if it was necessary, and he wanted it done, even though I’m feeling fine. The ultrasound showed some semblance of a kidney on the right, and nothing but cysts where my left kidney was. My gallbladder was fine (no stones), and I got to see my transplant on the screen.

This is the first I’ve gone more than a month between doctor visits with the transplant surgeon, but that’s ok; I’m stable enough to do that now.

In other news, the child I take care of on weekends was in the clinic today very briefly, and was leaving via ambulance within 20 minutes. He looked absolutely terrible, as he probably has a bowel obstruction. He’s on a ventilator now, but I haven’t had an update recently. I guess the docs are giving him a 50/50 chance of surviving, but based on when I saw him today, I would say those are very generous odds. I won’t go into too many details, but he is 15, has severe brain damage from “shaken baby syndrome”, but has been well cared for by his adopted family.

I’ve been doing a lot of computer work lately. Kevin sold my computer to a friend, so I had to redo the hard drive on that; I had to get set up Kevin’s computer to access the wireless router, and finally, I had to redo Kevin’s OLD computer for myself, since it had a virus. He lost his Windows disk, and I wasn’t about to spend any more money on it, so I installed OPENSuSE, a Linux operating system. I really like it, but there’s a rather steep learning curve to it. Advantages: it’s free, and so far, there are no viruses to attack it, as you must type in a password before making changes to the system.

I’m actually off this weekend, for the first weekend since late October/early November, and I’m looking forward to it. There is a gun show locally that I’ve always wanted to go to, but never took the time to go, so I plan on going there. I also plan on just relaxing, and possibly going to the movies to see Gran Torino. We saw Marley and Me a week ago, and both thought it was a great movie, except for one part that was sad.

  1. Kathy
    January 13, 2009 at 5:16 pm

    Hi Jeff, I just want to thank you for sharing your journey with others. I have know I had pkd for 20 years and knew my day had come to get a transplant this fall. My mother has had her kidney from her sister for 28 years. she was a perfect match. she is 70 and doing well as expected . lots of drug tradeoffs along the years.Like her,I had my transplant at Univ of Chicago. I had two people tested my brother and my husband and unbelivably my husband was a better match, 5 out of 6. My kidneys needed to come out, so we planned on taking them out and putting my husbands in all at the same time. They were each about 8 lbs. and my new kidney only under 1lb. I have a waist again. It was a 8 hour surgery. It was alot harder than I thought but know that it has been 7 weeks, I’m glad there out. I am taking prograf 7mg morning and night and myfortic. I tried the cellcept for 4 weeks and suffered gi problems. the myfortic helped that thankfully. I also take 10 mg of prednisone twice a day, eventually none is the goal. And of course all the others that i will be done with in a couple of months except for the lopressors and baby asprin. I also have the hand tremors. I wanted to know if you experience night swets and waking up a night not being able to sleep. I also have a fast pulse of 90 -100 quite often. I just figure the meds. Any way, I just wanted to say thank you for your story and I’m glad your doing well. And Hopefully in our time there is a PKD cure for our children. Stay well!!!

  2. January 14, 2009 at 4:16 pm

    Nice to hear from you, and glad to hear you got a transplant, and that everything is working well.

    A transplant that lasted 28 years is amazing!

    I still have my “natives”; I hope that they will shrink up and whither away soon, as I no longer need them.

    I’m used to hand tremors, as I have a neuropathy, and probably benign tremors as well. I haven’t had them in a while, but it’s annoying to get them again. But if that’s the worst I have to deal with, I won’t mind.

    I haven’t gotten the night sweats, except when I was sick a few weeks ago; it was most likely from the virus I had.

    I’ve had sleep problems for several years, and never addressed them until recently. I’m now on Trazadone 50 mg at bedtime, and after taking it, I’m COMATOSE! At higher doses (150 mg-400 mg), it’s an antidepressant (it’s been around for a long time). My doc offered me some others that could possibly be addictive, so I chose the Trazadone, and am glad I did.

    My pulse is usually in the 70’s-80’s, so I don’t have that problem.

    No problem with the CellCept, but I’m only on 500 mg twice a day.

    Keep in touch.


  3. Kristen
    January 28, 2009 at 11:57 pm

    Really, tremors are better than dialysis?
    Because honestly sometimes I wonder…. Not that dialysis is so great (!!) but having not yet had a transplant I honestly don’t know. I worry about the post-surgery drug side effects alot.

    • January 29, 2009 at 5:47 am

      The unknown is always worse than the known. The tremors aren’t so bad, but I’ve had tremors all of my life, and I guess I’ve adapted. And it’s not like they are all of the time.

      As for better than dialysis? I would say so. With everything, there is a trade off. For example, when I was on dialysis, I never had to worry about finding a bathroom when I was out, but now I do. But I’d rather the inconvenience I have now over going to dialysis. It’s all relative.

      How’s everything going with you?

  4. Kathy
    January 29, 2009 at 2:21 pm

    I’ts 9 weeks and I am feeling tired as I am able to do more which I know in my mind I’m physically not ready to show snow or vaccuum the whole house. It’s amazing how much energy you have with a working kidney. My creatinine is 1.3, hemoglobin 10.4, hemocrit 29.6, RBC 3.3. These numbers have been the same for quite awhile. That maybe the reason for some of the fatigue and out of breath at times. They said they would address this after giving it some time. They could give me a shot of medication. I should of asked more about it, but forgot. My prograf is 5.4 and we up to 8mg a.m. and 8mg p.m. Still taking myfortic twice a day and 10 mg of prednisone. I’m going to labs only once a week now. So really everything is going very well. And would always encourage anyone to go for transplantation. We only have a short time here, so live it to your fullest not just half way , if its possible.

    I’m glad your staying well. The flu month is upon us. Take care.

  5. January 29, 2009 at 3:35 pm

    The difference in energy level IS striking.

    I wouldn’t worry too much about the anemia; it can cause shortness of breath, but at 10.4, I doubt the shortness of breath is from that (but I’m not a doctor).

    I had anemia as well, ended up on Procrit for 5 months, yet once I went off Valcyte and Dapsone (both known to cause anemia), and BAM! my hemoglobin shot up 2 grams, and no more Procrit.

    Yep, I work in a Pediatric clinic, and we rarely check for flu, but this week, of those we checked, we had several positive for Influenza A. This is the first year in about 18 that I haven’t had a flu shot (not allowed until next year by my surgeon).

    Keep in touch.

  6. Kristen
    January 30, 2009 at 1:52 am

    I’m sure you’re right about the unknown….

    I continue to struggle with low BP during dialysis (but much less with the near-blackouts afterwards thankfully!) and weight gain.

    But overall I’d say I’m doing quite well…thanks for asking! 🙂

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