Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: jodyrn on November 21, 2011, 05:14:41 PM
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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
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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
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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
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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.
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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.
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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
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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
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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.
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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
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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.
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I hope it's true that women do better. Problem is, I am a "red-head" and a nurse. We make the worse patients. :)
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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.
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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!
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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).
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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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jodyrn, congrats on being a donor. I donated in March to my niece. I was at 90 eGFR went to 45 of course and now at last testing, I am up to 68% of the original 90. Creatinine is now under 1 as well. So all is going well.
My recovery the first month was slow as I wasn't in very fit condition and overweight. Well all that has changed. I am quite fit now and down to 125 with a loss of 25 lbs, so it was a win, win for me. I am much more health concoius now and forever.
I have a question, why aren't you having both surgeries at the same time? Others have had multiple at the time of donation, the last one to come to mind was a full tummy tuck, no small surgery and did very well.
Then one sedation, hospital stay, and recovery. Your insurance may have to pick up the second surgeon, but I would think that would be the only expense, as the hospital stay would be about the same. A lot less copay for you on your insurance.
I'm sure there are things to be considered, but, I was just wondering.
Best wishes and well come to the club. Janice
I had a second surgery about 6 months after the donation and it went very well, but again, I was out of work for 6 weeks. I have a fairly physical job, pet grooming, so had to wait until I was in fairly good condition again physically.
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Thanks Linda and Smudge:
I really hope I don't experience nausea. I hate that. I wonder if the gas pain will be worse since they are removing my right kidney. Thanks again for sharing your experiences.
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Hi Jodyrn,
First off, congratulations on your upcoming donation!
I donated to my Husband in October of 2009, so I knew who I was donating to. As far as the worst part for me, I would say two things:
One, the gas pains post donation. These started about a day or so after the surgery. It did get better each day, but it did take several days to completely go away. Walking did help me somewhat with this.
Two: I developed a very stubborn rash about a day and a half after surgery. No one was ever sure exactly what caused it, but it started on my abdomen where a lead had been left on after surgery. It spread all the way up to my chest. It was quite itchy and horrible. I went home with a Prednisone pack and RX Hydrocortisone. The rash would start to go away, but never completely, and would come back as I got to the end of the Prednisone pack. I ended up going through 3 Prednisone packs before my regular doctor put me on a very strong 10 day dose of Prednisone. This finally got rid of it. My doctor had also sent me to a dermatologist. They biopsied it, and it came back as "contact dermatitis of unknown origin." Not very helpful. :( I will say, none of this was bad enough that I would have not donated. I would absolutely do it all over again, no question.
As far as creatinine. Mine went up to 1.2 after surgery and then seemed to have settled at 1.1 after that and for the last 2 years. When I went in for my yearly checkup this year at the end of October, it was still at 1.1. Then we had our annual health assessments for our insurance about 2 weeks later and it was down to .9. My Husband and I are also in a 3 year post donation study. (They do an MRI, blood and urine tests once a year for this.) We were just there last week for this, and my creatinine is still .91 so I am thinking maybe my kidney has settled and this is my new normal.
Linda
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Thanks Aries7 & and Dodger:
Aries7: What a sweet thing to do for your husband. So good to hear you both have done well. Congratulations. BTW, The rash sounds like it was horrible. I definitely don't want that.
Dodger, you asked why I wasn't having both surgeries at the same time. Well, I asked UVA if I could have both done and they said, "We don't do that". Maybe they only do the donations and don't want to be liable for two surgeries. I'm not sure. It would be nice to get it all over with.
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I woke up from surgery in a ton of pain. I chose to have a tummy tuck during the surgery so my recovery may have been different. Two days post op I stop taking the morphine (kind of suddenly) - bad idea! I had withdrawl, which included neausea, vomiting and headache. The doctors gave me Zophran (sp?) which knowed me out for six hours. I woke up feeling fabulous. I took a lot of items to the hospital to keep me entertained. I was never awake long enough to need any of them. My hospital stay was five day, probably becasue of the TT. After day 2 or 3 I didn't have any pain. When I got home I pretty much slept for two weeks. I would occasionally have gas pain, but nothing too severe. At the end of the 2nd week I went to a MSL game and did really well. This is also when I quit taking the Oxycodon. By three weeks I seemed fairly "normal". At six weeks I started running again. Tomorrow will be three months since the donation and I feel no different than I did before the donation. I haven't had my kidney function tested since one week out. I go back at six months. This morning I ran seven miles at a pretty good clip. A lot of people say that they would question (feeling so normal) that the surgery even took place if they didn't have the scars as evidence. My scars were removed, so I have no evidence. :D My mind blocks out anything painful or unpleasant so who knows if the account is even that accurate. ;)
Congratulations and take care of yourself!
Tori
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Jodyrn, thanks for the info. Too bad really, I would think it might be an option as long as you are willing to pay out of pocket for it.
Well your surgery is coming up fast now. Best wishes and a good recovery. Put lip moisterizer on just before going into surgery, it really saves the poor lips.
Please keep us posted here. We will be thinking of you. Janice
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Jodyrn,
Are all of your physicians and practitioners aware of both of your surgeries (the donation and the prolapse)? While you mentioned it to the transplant program, did you mention the donation to the physicians caring for the prolapse? It's always better to be err on the side of caution in regards to these things.
Also, the removal of the right kidney is much more complicated procedure due to the liver and other organs being in the way. Consequently, there's a higher risk of post-donation complications and pain. If you haven't already, ask a million questions, and read everything you can get your hands on (google scholar is your friend)
Take care.
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Greetings Everyone!
I just turned 32 last week and scheduled to give my mom a kidney a week from today, 12/16/11. This will be her 2nd Kidney transplant and we are both excited and nervous at the same time. I am mostly concerned for her, she has been through so much, yet she is a trooper!
I cannot begin to thank everyone on this site for sharing their experiences! I feel so much better knowing what types of things to expect. I am praying that we both have an effortless recovery. Thanks again for sharing!
Blessed1
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Prayers for a smooth and uneventful surgery for both you and your mom. Where are you donating?
Let us know how it goes.
Sherri
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Thanks Sherri. Inova Fairfax in Falls Church, VA.
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Hey, I'm a red head too! LOL....well, I was until it turned gray/blond. I donated my kidney in Oct. 2010 to a stranger (former stranger, new friend). The worst part of the post-surgery experience was the unknown. I think that the doctors need to do a better job of telling patients about some of the side effects that one could experience after a donation. They seem to touch upon the most common while ignoring a host of other things that patients could feel. Mine included a loss of appetite for about 2 weeks (a great weight loss program); pain in my scrotum (not that you'll have this issue); and, discomfort from a nerve injured during the surgery (my surgery took 6 hours because there were more veins than usual that needed to be tied off).
Considering all of that, I would still donate if I had to do it all over again. Even at my age (61 at the time of surgery), the discomfort following surgery was minor in comparison to the benefits of my donation. After all, you're most likely saving someone's life. At the very least you're making that person's life much more "liveable". My recipient is doing very well and we continue to keep in touch.
Best of luck!
Tom
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Dear Blessed One: I just looked at the calender and noticed that it is the 12/16, your BIG day. May both of you do well. Prayers going out to you.
Dear tom carr: I agree, I wish they would have given me a little more info. I am a nurse so they probably assumed I knew most of it. I came back from surgery with a drain. I knew what it was, but didn't know I would need one. The informed me AFTER surgery that I had two arteries on the right kidney and that I was in his top "three most difficult surgeries". I have had a great deal of discomfort in my ribs and back from all the manipulation. Thanks goodness I didn't have the scrotum pain. Ouch. I was only 117# on donation day. I have since lost a few more lbs.
Thanks to everyone!!!
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How can patients sign an informed consent for elective surgery when they are not informed of what is involved in their particular surgery i.e the two renal arteries. The laisse faire attitude of some transplant teams really bothers me. I signed my informed consent for surgery while on 2 mg of Ativan. Don't even remember signing. Transplant is a great option to help improve some ESRD patient's quality of life, I just wish there would be more improvements on the donor end.
Glad to hear things went well and you are recuperating. Blessings for an uneventful recovery.
Sherri
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Hello, I am 39 and I am going through the testing to be a kidney donor for my boyfriend. I am wanting to find out what exactly happens during a Glofil test and if it is painful? I have done the 24 hour urine tests and the doctor wants me to go in for a Glofil test because my urine quantity was below what was needed. Thanks so much for any help and advice! :)
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Sherri, JH Did would not administer drugs prior to hitting the table. I repeatively asked, but was not showing signs of distress.
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I had a meltdown at my pre op meeting with anaesthesia. I was so nervous and anxious which the NP recognized and actually called my coordinator who in turn called me to ask if I was ok. I was not ok and I found it hard to believe that she didn't know I wasn't ok. I told her how anxious and ambivalent I was about having to go through with this, thoughts I had spoken about with the psychologist and her. The administrator Brigette Reeb called me and gave me the name of the living donor advocate who was Deborah Mcrann at the time (she has since left and works for Living Legacy I think). When I asked where this independent donor advocate was when I was doing all the testing she told me they use her only for non related donors. Brigette asked me if I wanted to postpone the surgery and I said how could I do that when everyone was counting on me. I already cancelled my patients at work, told my brother he'd be getting my kidney, paid for an overseas flight for my daughter to come home etc etc. In my mind it was akin to sending out the wedding invitations and then calling all the guests to cancel. I had rehashed with her how I felt about how I had been ignored by the surgeon and marginalized by the whole team. She had the surgeon call me and I told him flat out if he wanted me not to bolt from the table or have a crying break down I would need Ativan. So he prescribed the Ativan and made me take it Friday night to make sure i had no reaction and then again I took it Sunday the night before surgery. I didn't even realize they would stick a consent for surgery form in front of me that morning. I looked over at my paper work months later after the surgery and saw my signature but really did not remember the actual signing. I remember the anaesthesiologist talking to me and pushing meds in my IV in the pre op room so I was knocked out before I got to the surgical suite. I remember changing into the gown, the resident marking my belly, I remember praying to God that I would wake up and not leave my children without their mother. And I remember praying for forgiveness for not being like the other donors who I read about. I remember one of the pre op nurses or techs opening the curtain separating me from my bother, assuming I would want to share this private moment and I remember closing it every so slightly so he wouldn't see my face. So i guess it depends on your surgeon and how they view their role in donor surgery. I remember the surgeon poking his head inside the curtain, didn't even come close to me.Maybe I freaked him out and he agreed with me that he'd rather have me sedated. Who knows. But I don't think there is any hard fast rule at any hospital about premedication. So I don't think it is JH who won't administer sedatives it may just have been your surgeon would not feel comfortable doing that. Every surgeon acts on their own. What I have come to learn from this board is how different each person's experience is, how independent each hospital is, everyone makes their own rules, their own standards and there doesn't seem to be a protocol which must be followed by each hospital approved for transplant.
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And I remember praying for forgiveness for not being like the other donors who I read about.
Sherri,
In my book, somebody who went ahead with a donation despite all the worries and issues you went through is a major league hero!!!
And about the pre-sedation. I may be the only person whom it made tense. I was actually very happy and relieved, since the night before, that I was finally getting to do this. My recipient and I rode together to the hospital, laughing and singing. And, when I was on my back on the stretcher being wheeled down for surgery, I was fairly boogying for joy that it was finally happening.
And then they told me they were giving me some preliminary sedation. I told them I didn't need or want any; I was perfectly happy and don't like taking meds I don't need. They gave it to me anyway, and in saying goodbye to my wife (and wondering when I'd finally get to meet my surgeon for the first time [!]), I forgot about it....But then, when they came a bit later to take me directly into the OR, I suddenly popped up and yelled, "Wait!!! Hold the gravy train! That sedation didn't do a thing; I don't feel it at all. I know I didn't need it, but I really hope your anaesthesia for the surgery itself works better. That, I want!" I think I was afraid that budget cuts had led them to use anaesthetics that had expired and wouldn't work. In the end, everything was fine. But I would have been happier had they never bothered me with the pre-surgical sedation.
Be well, Snoopy
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Snoopy,
Your posts always make me smile.