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Author Topic: Soon to be a donor. Questions  (Read 19184 times)

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jodyrn

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Soon to be a donor. Questions
« on: November 21, 2011, 05:14:41 PM »
I will be donating a kidney as a non-directed donor December 8th at UVA.  I am 46 years old.  120#  female.
What was the worst part of it all??? Pain, gas pressure, fatigue?
My GFR is 88 using the dye test.  How much will my GFR (kidney function) go down after donation. Does it usually come back up??  
How long does it take to start feeling better.  Did anyone experience depression afterward.  
Of those of you that donated anonymously, did you get to meet your recipient?  
Thanks
« Last Edit: November 21, 2011, 05:43:27 PM by jodyrn »

Offline Fr Pat

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Re: Soon to be a donor. Questions
« Reply #1 on: November 21, 2011, 06:48:28 PM »
     Best wishes and prayers for your donation surgery!
     For me I think the hardest parts were the pain-moments (open cut surgery) and the initial return to normal urinary/bowel functions. But I really have to stop and think to remember the "hardest" parts (10 years ago) because I usually remember only the good parts.
     Recovery varies a lot from patient to patient. And keep in mind that some (few) donors do suffer serious long-term complications. It IS major surgery.
     I have not met my recipient, but many non-directed donors have done so.
         best wishes,
             Fr. Pat

jodyrn

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Re: Soon to be a donor. Questions
« Reply #2 on: November 21, 2011, 07:41:16 PM »
 Fr. Pat:

Thanks for responding to my Kidney donor questions.  I am having a difficult time trying to figure out how to post and respond to questions on this site.  Anyhow, I hope that I do ok with the surgery.  The only surgery I have ever had (age 33), I developed an Ileus (paralyzed bowel).  I am afraid it may happen again.  However, I believe God will take care of me.  Wish me luck.
Jody RN

Offline lawphi

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Re: Soon to be a donor. Questions
« Reply #3 on: November 21, 2011, 09:46:16 PM »
Different things hurt at different times. The worst part was co2 pain in the shoulders, which heat and massage helped. I am short and weighed 115, which helped. Take instant heating pads and prunes.

I would probably give my other kidney for the chance to have more propol.

At 29, my creatinine was .13 a week post surgery and is at a healthy level for someone my size with two kidneys. 

For the emotional aspect, I had issues with physically slowing down and adjusting to a healthy husband.  I went to a counselor twice. 

I did a paired exchange and my recipient contacted me through this website. We have not contacted my husband's donor. It's hard not to feel an instant bond with your recipient and/or donor, but I want to be respectful at the same time. 
Bridge Paired Exchange donor on behalf of my husband (re-transplant) at Johns Hopkins.

jodyrn

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Re: Soon to be a donor. Questions
« Reply #4 on: November 21, 2011, 10:56:41 PM »
lawphi,  How long would you say it took to get your energy back as before surgery?  I am a nurse and am concerned about my busy job duties.

Offline rdr321

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Re: Soon to be a donor. Questions
« Reply #5 on: November 22, 2011, 12:06:01 AM »
I am 44. Was in very good shape when I donated, I donated almost  4 months ago. The worst part for me was waking up after surgery with lots of pain. Then the next 2 days were very painfull. I was on Demerol. I don't think that works well for me. I was very lucky in that I did not have nausea nor was I constipated over 6 days. But the first 2 days after surgery were very painfull even with the meds. I was in the hospital longer then most, 5 days because of pain. At one week the pain almost all disapered. I was very fatigued for 2 weeks. At one month I did not need to take naps anymore as long as I did not do too much. At a month and a half they tell everyone they can go back to work. I used to be a electrician. There is no way I could have gone back to that in 1.5 months.To do aggresive physical labour  for me 4 months or more.  A sedentary office job, no problem. If you are doing lots of running around you might need more then 1.5 months. Maybe you will be fine. Everyone is different.  At almost 4 months now. I feel like I have gotton to a point physically where I am no longer fatigued from the surgery. The incision is still not 100% It just happened this week. I have heard some people say it takes 6 months to feel 100%. I believe that  Only you can tell when you will be ready and not getting tired and cranky. When I returned home from the surgery I had a emotional breakdown for about an hour. The next day I was fine. I did  have mild depression for around a month after surgery. I think the reasons were that my body was still getting rid of the drugs and I have always been a very active person. Now I was stuck on the couch. I felt worthless.    I am very happy that I did donate. On december 20 there should be 30 transplant recipients because of the chain I started. The last time I heard the # was 17 recipients.  I have not met or heard from my recipient. All I know is the kidney went to New Jersy into a man. I live in Southern California

Offline Snoopy

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Re: Soon to be a donor. Questions
« Reply #6 on: November 22, 2011, 09:29:20 AM »
Hi, Jody.
  Good luck with your impending surgery, and congratulations for committing to do this! 
  Everybody has their own unique donor experience.  To get a feel for the possibilities, you've definitely come to the perfect place.  LDO is a superb resource, with wonderful people available for advice and support.
  For myself, I'm happy to say that my post-surgery course, a bit over six weeks, has gone smoothly.  When I first awoke in the recovery room, they asked me to rate my pain and I immediately said 6-7, so they put something else into my IV.  After that, I refused all painkillers, because I simply wasn't in enough pain really to need them (on the other hand, my lack of pain meds may explain why I found it so hard to straighten up for a few days after the surgery.  When a nurse threatened that I might not go home on time unless I started walking straight, I quickly agreed to one half-dose of pain meds, which did the trick).
   Having been reading LDO accounts for over a year, I was also expecting significant gas and shoulder pains, along with constipation (I arrived at the hospital armed with prunes, prune juice, and dried apricots).  However, in the end I had none of that (regarding the constipation, it may have helped that my center did not require a bowel prep).
  My surgery was on a Sunday afternoon, and I was home by Wednesday afternoon.  For the first week or two I tired more easily, and took extra naps, but nothing terrible.  I started doing a bit of light work from home about two weeks post-surgery, and returned to regular work one week after that (22 days after surgery).  My work combines mainly sitting at a desk with some periods of being on my feet; if I had a more physical job, that would have been a different story.  However, because I have a long commute and no car, I used taxis a lot to save my energy. 
  I will note that it was not lots of fun to get out of bed the first couple of days after surgery, and for about a month afterwards sitting down and getting up from chairs hurt a bit (however, the nature of the pain is such that it might be relevant only for males).
  I had surgical staples (inside and out), and I was much more comfortable once the outer staples were removed, nine days after surgery.
  But, judging from my own mistakes:
1)DON'T sleep on the side with your surgical wounds. I did it once, at around one week post-surgery, and it caused some annoying back and side pain.
2)beware of sneezing--that hurt! You can prevent the sneeze by pressing your horizontal finger hard against your upper lip.
   Beyond this, the only remaining issue for me, six weeks post, is the continued difficulty in lifting.  I am trying to be very good about not lifting too much, but even when I lift things well under my limit, I get painful twinges.  So I have resorted to strategies like making two trips rather than carrying everything at once, moving a bag in stages, emptying it out bit by bit, etc.  I have had to convince myself that for now I'm not the guy who once (okay, a long time ago) used to lift weights and carries everything by himself.  When it comes to lifting, for now I'm more like a little old lady.
   But that's it; I'm already in my fourth week back at work, am barely using taxis at all, can walk long distances, etc.  Almost nobody at work knows I had surgery, and I am managing just fine.  Also, since the surgery my temperament has been unusually placid.  I've sort of dropped down from Type A- to Type B.  It's actually nice to be this calm, but I barely recognize myself.
   I donated to somebody who was originally a stranger, but we met and became friends through this process.
     Good luck,
     Snoopy

jodyrn

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Re: Soon to be a donor. Questions
« Reply #7 on: November 22, 2011, 10:01:04 AM »
Thanks so much rdr321 and Snoopy:  Very different experiences post-op from you both.  I hope I do ok.  I am very worried about the fact that I have to have another surgery when I am feeling better from the donation.  I have to have surgery for pelvic organ prolapse. (One of the side effects of birth and being a nurse on her feet).  :(  Yikes.
rdr321 - Are you fairly small?  Do you think that caused the pain?  You mentioned you haven't met your recipient.  Did they not want to meet??  I would really like to meet my donor but have to understand if they don't. 
Snoopy - I will have a case of prunes ready.  Thanks so much.  Also, I am donating the RIGHT kidney.  Does anyone have experience this this.

Offline Snoopy

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Re: Soon to be a donor. Questions
« Reply #8 on: November 22, 2011, 11:01:34 AM »
Snoopy - I will have a case of prunes ready. 
By all means do.  But note that I, personally, never needed any at all.  My first "meal" after the surgery, in between my long naps that first day, was dried apricots, but I never did have any constipation.  Find out whether your center requires bowel prep.  I gave my left kidney, so I don't know about the right, but good luck in any case! Be well, Snoopy

Offline rdr321

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Re: Soon to be a donor. Questions
« Reply #9 on: November 22, 2011, 11:12:56 AM »
 I am not small. 160 lbs, 5'10 , male,and was in good shape. The surgoen told me women do alot better with the pain then men.

jodyrn

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Re: Soon to be a donor. Questions
« Reply #10 on: November 22, 2011, 12:46:39 PM »
I hope it's true that women do better.  Problem is, I am a "red-head" and a nurse.  We make the worse patients.  :)

Offline lawphi

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Re: Soon to be a donor. Questions
« Reply #11 on: November 22, 2011, 08:50:59 PM »
Jodyrn:  My energy was 80% after a week and went back to work after ten days.  My recovery isn't typical. I really think my size played a huge role. 

I would ache if I sat too long or attempted laundry/dishes during the first month.

I am a side/stomach sleeper and used pillows to prop my body at an angle.

I believe I was given fentanyl. Wonderful stuff. I was quite entertaining.
Bridge Paired Exchange donor on behalf of my husband (re-transplant) at Johns Hopkins.

john78259

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Re: Soon to be a donor. Questions
« Reply #12 on: November 23, 2011, 04:23:09 PM »
I anonymously donated a kidney a couple of months ago. Due to HIPPA laws, I won't ever know who the identity of the receiptient and am fine with that. If the receipient wants to meet you, s/he can send a note to the transplant center, who will ask if you want to receive it.

I wish you well and hope your recovery goes as smoothly as mine. I am 48 and had no pain after the surgery because they had a "pain ball" at the incision site and a morphine PCA pump for the first 24 hours. I was told to take advantage of the pain medication and keep on top of the pain. I encourgae you to keep a rolled blanket or small pillow across your abdomen after surgery. If you have to cough or laugh, it is less painful to hold onto it.

Instead of staples, they used a glue to seal the incision so it didn't take long for everything to heal. After 6 weeks, I was clear to lift normally and exercise again. Good luck with your surgery and will be praying for you!

Offline Linda

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Re: Soon to be a donor. Questions
« Reply #13 on: November 24, 2011, 05:00:19 PM »
Hi,

I am in my 40's, was 146 before surgery.  Lost 10 lbs in 3 wks because of persistent nausea.  I went off pain meds and still have nausea for 2 weeks.  It finally resolved.  I had a cranio-sacral massage and that seemed to help.

In the hospital, I had morphine which made me itchy and constipated and nauseous, so they switched me to Lortab which just made me nauseous and constipated.  My diaphragm was sore for about 3 1/2 weeks because of the inflating they did for the laprosocpic procedure. It made it uncomfortable to breathe.  I was on tylenol for pain by 3 days out and was mostly okay with that. 

I am almost 4 weeks out (tomorrow is 4 weeks) and I am still very fatigued, but I attribute that mostly to the 3 weeks of nausea and very limited food intake.  The nausea made it hard to move around and do anything so I mostly sat all day and ate a liquid diet or the BRAT diet.  I feel like now that I can eat, my strength is slowly coming back. I have yet to return to work and could not work full time at this point.

I wish I had known that nausea - NOT related to pain meds - was a possibility.  It was by far the worst part for me.  The pain from the incisions was mild most of the time (except when I sneezed, laughed or coughed). 
donated kidney to dear friend Oct. 2011

Offline smudge

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Re: Soon to be a donor. Questions
« Reply #14 on: November 24, 2011, 06:27:48 PM »
Hi

I was 40 when I donated.  Creatinine did go up a bit post transplant - the morning after mine was slightly higher than my recipients but it soon evened out.  Can't remember if it was 6 weeks or 3 months when it was back to normal.  It is normal for it to go up post surgery.  I won't give you numbers as I only have the UK calcs which won't mean anything!

Worst bit for me was probably the side effects of the morphine (had a PCA for 24hrs) - constipation and itching.  This was made worse by having to wear support stockings for the same 24hr period to reduce the DVT risk.  It was also one of the hottest summer days.  Bad combo!  Then moved to Tramadol which was fine apart from doing nothing to help the constipation!

Surgery was Wednesday; Thursday, once off the PCA felt OK, just v constipated but up to seeing visitors and spending time with my recipient (I'm a directed donor); Friday = discharge, good to be home; Saturday = first proper BM post surgery - such a relief! - really started feeling normal after that.  Stopped taking opiates on Sunday as I really didn't need them.

Went back to work after 4 weeks, worked part time for the next 2, increasing my hours.  I'd been back 2 weeks full time when we had a statutory inspection at work which meant 3 weeks of 60 hour weeks.  I was tired at the end though!  Overall I reckon it took me 3 months to feel back to normal though might have been quicker had I not had that crazy inspection prep.  6 months post transplant was Christmas which gave me nearly 2 weeks break.  I needed it and went back to work in the January fully refreshed.  Not looked back :)

Good luck :)

 

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