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General questions at 4 mo post Transplant.

Hi! I had my liver transplant 4 months ago. I am 18 years old and I love school so college seemed like a must. I am doing several online classes for this semester to avoid the risk of infection that on campus classes carry with them. Lately, I have had a really hard time sleeping, and it's really wearing on me and I am losing A LOT of hair. This happened a year ago 3 mo after my other surgery, but my hair is falling out in clumps. I don't have bald patches yet but I am scared I will. And I have really bad cramping in my sides, like I did before my transplant. I was wondering if anyone else had issues with insomnia or hair loss or cramps and ways to lessen the side effects. I have just been feeling really fatigued and yucky lately.Also, what do you all think of returning to school six months after transplant? I am unsure still as to what to do. Andddd, how long did you wait to send your donor family a letter. I don't want to be too soon!I know these questions are all over the place so if you could answer even one I would be super happy!!

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  • I had hair loss big time post TX but when the Prograf and steroids doses were lowered it all grew back and then some. My hair grows faster now than ever at 3 yr post tx. It takes a long time for our bodies to heal after such a trauma, in time you will get better, be patient.
  • I didn't have the hair loss issues but to answer your question about the donor letter.  I was transplanted the end of July, 2015 and wrote my letter to my donor family the middle of October.  It wasn't though until June of 2016 I finally heard back from them.  Came to find out the donor family mother and father had triplets a few months after their 20 year old son died so they had been very busy.  I had the wonderful privilege of meeting them though after she wrote me on the actual day of my transplant.  It is an experience you will be forever grateful to go through if it works out for you to meet the family.  Best wishes to you in your ongoing recovery.   Be sure and get up and walk, walk, walk every day to regain your strength and energy.


  • Katie,

    You're trying college 4-months Post TX is impressive.  I would not, could not have done it.  I was just too weak and tired and still recovering.  Proud of you!

    I've been loosing hair but I'm not sure I wasn't going to lose it anyway!  I have a lot of my Dad's traits and that is one I could have done without.  My brothers both have solid black and thick hair.  Oh well.

    Higher doses of prednisone kept me awake.  No so much now that I'm at less than 5mg/day.  Can you take melatonin?  If you can, it is a natural chemical that helps you get sleepy. 

    I sent my donor family a letter at about 3-weeks.  It's never too late if you want to do it.  And, there is no obligation if you just cannot. 

    • Hi, Steve! Thank you! I definitely don't feel good all the time, which is why I'm taking online classes so that I can just stay home and rest while studying. It's easier this way and I can avoid the germs from being around too many people in a classroom setting.
      I am not on prednisone anymore, which is good because that drug is a monster. And I have melatonin, so I may try to use it.
      I think I will send out my letter by the end of this month, I just have some final touches to put on it. Just out of curiosity, did your donors family ever write back? Thanks for your response Steve!
  • Hi Katie, I'll take your issues one at a time.

    1.  Hairloss - yup. It's probably going to stop at around the 1 year mark or so. I had a lot going on prior to my transplant and it was at about the 1 year mark that my hair started growing back and coming in thick again. I ended up with "tree rings" as my numerous bouts with bad health had my hair falling out sporadically. It took some time before the last "ring" grew out, but I'm happy with my hair now. I see online a lot of folks try biotin and that seems to help.

    2.  Insomnia  Yup there too. I had insomnia and I think in my case it was due to the prograf. I tried a few acupressure tricks that helped (there's a spot to rub between your eyebrows) but I eventually did take some meds. I used trazadone for about 6 months and then was able to sleep without it.

    3.  Feeling yucky Yup again. Especially when I was only shortly post transplant (first with my kidney in '02 and then again with my pancreas in '08). It could be lots of things. If it keeps up, definitely talk to your team. but don't forget, you've been through a lot, before during and after your very big surgery. It's to be expected that you don't feel so hot right now. But never be afraid to talk things over with your team

    4. Letter to your donor family - that's a tough one. Because I was so sick for so long I didn't send them a letter until close to  a year after my pancreas surgery. But at that point I had all sorts of positive things to say about what their donation had done for me. It seems to me that is what they want to hear. That you are going to take your gift and run with it. I think they would be delighted to know that college is in your future thanks to them. And simple precautions like hand sanitizer will help a lot. My hubby went back to school (university on-campus) and while he was in contact with a lot of stuff, neither one of us got sick except for one where he had a horrible cold and I didn't get it. So you will be fine.

    • I know they donor families don't always write back, but I hope with all my heart that mine does. I just really want to know who the donor was as a person. Like some closure. Also, I am still up in the air if I should even go next semester. Oh well, I suppose time will tell how I'm feeling! Thanks again for your response, Cora. Have a good day.
    • Wow! Thank you for taking the time to respond to all of my questions, Cora! I was feeling a bit spazzy yesterday, apparently. I think I'm going to do some research on the eyebrow thing for insomnia. I am just so tired during the day and when I get in bed I would think I would be tired still but nope! I'm wired. And I feel good right now, and I have my letter almost finished, so I think that I'm going to send it soon.
  • Hi Katie - I had an issue with hair loss starting 4-5 months post kidney transplant.  All I can say is be patient it does come back. I know that's hard.  I take biotin and CoQ10 recommended by my nurse.  Please check with your doctor before taking any supplements.  I'm not sure if that's what worked or it was just time, but my hair is now 100% back. It took about a year to totally be fine and stopped falling out at about 8 months.

    • It's good to know I am not alone with the hair loss issue. It is a big cause of anxiety for me, which makes me realize how much I care too much about my appearance. I will talk to my transplant coordinators when I see them about the Biotin. Thanks, Bettylou!!
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