Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: Palvarad on August 12, 2015, 09:34:50 PM
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Hi everyone, I'm new to the forums. I donated my left kidney to my father two weeks ago, and although he's older, I don't regret it. Knowing that I saved him is wonderful. I'm happy with that.
I'm struggling with recovery. Nausea and exhaustion are keeping me pretty low. I'm a mother of two energetic boys so feeling helpless is terrible for me. Today is my first day without percocet and the pain is, gladly, tolerable. The exhaustion, however, is almost more than I can bear. It's depressing to be unable to do what I do, and I'm going stir crazy. I'm a summer baby, I need sunshine and the beach so this is a struggle. Anyone have any suggestions for me to get through this? Loneliness in illness is also pure misery.
Thanks, and nice to meet everyone.
Pal
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Congratulations on your donation. I donated 13 years ago and am doing fine.
Tiredness is a very common problem and you need a lot of patience. The only advice I can offer is you should feel very free to ask others to help you. A lot of people would probably be glad to help and do a number of small things for/with you if they knew the need. Don't try to do everything just as you used to. You have been through major surgery and recovery takes a lot of time, physically and emotionally.
You might want to post this same message at the Living Donors on Line page on FACEBOOK as these days many more donors check in there who don't check in here.
best wishes,
Fr. Pat
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Dear Palvarad,
Thanks for your loving gift to your father! My Dad has had four great years with my kidney and is doing well today. He was in his mid-70s when we had our surgery.
I don't think it unusual at all that you are tired after only two weeks. You need to get as much rest and sleep as your body asks for. After all, your kidney function was halved by the donation, and your body is working very hard to recover. I was quite tired for more than a month. But there's no reason you can't get outside and enjoy the nice weather. Go for walks, but plan time for a nap afterwards.
Don't you have a follow-up appointment soon? If not, you should ask for one, just to check that all is going well.
Love, elephant
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Fr. Pat and elephant,
Thanks for the kind words I really needed to hear. I'm trying to take it one day a time, but this exhaustion is akin to wearing a fur coat that I can't take off. The pain is dwindling and all thats left is this miserable exhaustion. Ugh.
Alas, I do not have Facebook, but that people still responded means a lot to me. Thank you for that.
Sincerely,
Pal
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Hi Pal, I am just going to echo what Fr. Pat and Elephant have said. You will need daily naps and initially probably several a day. I remember after my mom and a friend left I was home alone. At the time I didn't realize it, but the pain meds were making me a bit paranoid so I had a hard time sleeping. By the time I was supposed to go back to work, I was exhausted. I was only able to go back half days for several weeks. Take short walks outside and enjoy the sun. Sit on the beach being careful not to get sand near your incisions. And then go back home and sleep. The sun will probably aid your recovery but may also wear you out. It's okay to take frequent naps. Drink lots of water, especially if you spend time outside. Avoid large quantities of caffeine. Eventually you will be back to yourself, though I will say that even four years later I don't feel I have as much energy as I did prior to donation. I've told my personal doctor but she brushed it off. I'm on b-12 but I still can't do much after a full work day. But most people bounce back. Your body has been through a lot and you were under anesthesia for quite a while so it is normal to feel tired two years later. It will get easier.
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That just made me burst into tears -- the idea of living with this exhaustion is terrifying, especially since my life requires normal to high energy.
I have a separate fear/question: will I ever go back to eating normally? My meals are barely meals and my stomach gets full fast leaving me hungry more throughout the day. I can barely tolerate eating normal dinners and Im already thin as a it. Any thinner and it will be bad for my health. I'm teying to drink protein shakes and eat protein bars but after which I get stomach aches. I'm feeling pretty low.
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Dear Palvarad,
My appetite was poor for the first month after surgery. But it recovered by about 5/6 weeks, about when the fatigue passed.
Maybe your fatigue is also do to post-surgical depression? Some people do get depressed after surgery. Fortunately this is very treatable!
Have you had your follow-up visit with the transplant hospital? If not, maybe you should visit your own internist. If you do not have a regular internist, this would be a great time to find one.
Love, elephant
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That post surgeries depression -- how would I know? I'm very emotional lately and burst into tears over my physical frustration and the helplessness that I feel. I feel like I've lost a part of who I am, and I'm so lost. I don't know what to do, and what's weird is that I'm related (not by blood) to people with clinical depression so I figured I'd know what it looks like.
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I'm so sorry. I did not mean to make you cry. And in reading my response, I see a typo. That last sentence should read two WEEKS later, it is normal to feel tired. NOT two years later. I'm so sorry; I should have been better at proofing before hitting send. I agree with the suggestion of others. Please contact your transplant center if you haven't. They need to know how you feel. And your regular doc too. Your appetite will return. You were under anesthesia for a while and they move the bowels. My surgeon told me the bowels don't like being moved around. You could experience constipation, loose stools, or all the above as you recover. I think nausea and lack of appetite may just be your body trying to normalize itself. I also wonder if the nausea is a residual effect from the anesthesia and meds? I didn't fight nausea after the first week, but many do. Again, I'm so sorry. It was not my intention to upset you. I'm not the norm in terms of still feeling tired four years out (& at this point I can't specifically attribute it to donation but I'm pretty sure that's the cause) and I didn't walk enough in recovery because it was about 115 degrees out....seriously. It was in the middle of a HOT Texas summer and it was hard for me to drive to a mall because I was on pain meds in the evenings for a while. I think I'm a wuss. I had more incision pain than most, but suffered from none of the gas pain the majority of donors talk about.
You must go easy on yourself, you've been through a lot and you can't expect your body to snap back. Try to enjoy the downtime as much as possible knowing you'll be going a mile a minute before you know it.
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My appetite came back only gradually over a couple of weeks. Your insides have been shaken up a lot, plus you have been dosed with some powerful drugs, so it takes a while to settle again. Eat small amounts of whatever you can stomach throughout the day. Oddly enough the only food that appealed to me for 2 weeks after donation was anchovy pizza (which I did not care for before and have not liked sense!) but even with that a couple of bites were enough to "fill" me. Natural yogurt can help restore the digestive gut bacteria that may have been accidentally killed by the drugs.
Some doctors recommend that kidney donors take daily supplements of Vitamins b-12 and D (even if you get enough sunshine) as we seem to tend toward deficiencies in those.
Fr. Pat
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Depression-I suffered from it some but I have a hard time remembering details on how I felt. I do remember that it felt like a big letdown. Not the surgery, that was wonderful, but more that all I had focused on for 12 months or so was over and now what? Your bursting into tears and getting emotional may be a bit of depression or it may just be that you are so tired and frustrated that you cry easily. Are you sleeping good? Waking up a lot in the night? Able to nap? I know that if I don't get enough sleep, it makes me very emotional and I have tendencies towards crying. My cycle was also off for a month or two after donation so some of it might be hormonal.
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I have read than a notable percentage of ALL successful surgery patients suffer some post-op depression. I don't know if it is any more common among kidney donors. I myself did not have any depression at all, but I know from reading the experiences of others that it is indeed a possibility (and potential donors really should be warned about the possibility.) There are LOTS of emotions involved, plus a lot of trauma to the body, plus whatever problems may come up during recovery. Be kind to yourself. You need time both to recover physically and to process such an amazing experience emotionally.
Just to add a thought: tears are not always a sign of sadness. When we feel things that we can't express in words we may end up expressing them in tears or laughter. Crying is not always a bad thing. You have gone through something that only a tiny proportion of the human race has ever experienced: giving a living major organ to someone else. Something like that may not process inside our mind and emotions right away.
Fr. Pat
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To learn about becoming a living donor, read this part of the LDO web site: https://livingdonorsonline.org/general.htm
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Dear Pal,
Congratulations! - you did a wonderful thing and I hope you are feeling better. My name is Peter and I also donated my left kidney to my father in 2007.
It takes your body a while to recover from just being under anesthesia, more than a few weeks. Couple that with the fact that donating, especially to a parent can be an emotional roller coaster, hard as it is you just have to be a little patient. You will feel better physically and emotionally. I also think sometimes its hard with any "trauma" to your body - to see the clearing when you feel like your deep in the forest.
When I donated my daughters were also young and it was very hard to remember I had to wait a while before I could pick them up, give them the near constant shoulder rides they were used to, etc. My little one was also "mad" at me as I donated on a friday and missed her birthday party saturday (the next day) as I was still in the hospital.
So hang in there, it will get easier, and the sun and beach will surely help your recovery.
Best wishes
Peter
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went home to 4 kids...took me 4-5 weeks to be feeling better and able...6 months to feel totally normal...hang in there it takes time .. let people help you . my kids were sad when I got better...too many good meals from family and friends(I'm not such a great cook)... 17 years later and doing great..have treated Hypertension and survived Ovarian Cancer and chemo 11 years ago...normal kidney function...feel great at 60
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Donor 99,
It is always encouraging to hear from "veteran" donors. I donated in 2007. One of my many concerns is always will my health be compromised by having less kidney function reserve. Best of luck to you and continued good health.
Sherri
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I don't remember being exhausted or depressed after surgery, so it's not a given. Of course I was tired, and sore, but I could have gotten back to work after 2 weeks (I waited one more).
You are just stopping opiates, and they can make you very tired. Give yourself a chance off of them to see if you feel better. I didn't take them past the first couple of days/nights, so maybe that was the difference. But also - find someone to care for your boys and get some rest. 2 weeks isn't a long time to recover from major surgery.
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Hi there Palvarad! You did a great and selfish thing and now you need to look after yourself.
I donated just over 5 years ago and like you a high energy person always on the go. The absolutely the hardest thing of all about the donation process was to have no energy afterwards. It was a mind numbing lack of energy beyond description. You may hear the words "no energy" but that is a vague term with many different meanings. I had though of it as having to move slower to get to the end not the feeling of no possibility of even getting to the start of the race.
You were given a lot of drugs, mostly stuff you have never taken before they will take some time to completely leave your system. You need to drink lots of water and move around a much as you can.
My Donor Social Worker who evaluated me as a suitable donor did advise me a few days before the donor surgery to expect to be very tired when I got home from the hospital. She told me to have family to cook and clean and make sure that anything I would need for the next month was close at hand with in easy reach and not make many plans. She also said to expect to hang out snoozing on the sofa a lot so exhaustion was/is an expected consequence of donor surgery.
Some people have no problems with exhaustion but all I can say is everyone I have personally known who donated a kidney has been utterly exhausted and slept a lot, some people for longer than others. But every person I know has improved and been able to move on with their lives.
Can you discuss this with your Donor Nurse or Social Worker? I suggest these people as you Donor Neurologist will do tests to check your kidney function which will be scheduled fairly soon after donation but a report of exhaustion is not measurable.
What I can tell you is that you will certainly improve at your own rate. Can you think of this as another test where you have to finesse your way through obstacles as if you are in training for a competition. Long before my donation I thought of the Donor Surgery as a serious sports injury and planned for a major rehab, unexpected setbacks included.
Make sure you get lots of rest as you need it, eat a nutritional diet and It hard put what energy you do have into improving your health. It's hard but try to spend as little energy as possible on worrying.
Good luck and let us know how things go please.
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It's been another couple of weeks, how are you now? Any better? We all hope so. Take care.
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17 days out!
I was very sleepy until day 6 I started to build up my walking, 10 minute/15 minutes/20mins etc per day each day until I could do 30 minutes with ease, I felt this helped with energy levels also the most important thing is eating and drinking!
I suggest instead of eating large meals space several smaller ones, eat lots of fruit especially stuff like oranges, pineapple and stuff high in vitamin C. Also eat more than normal, you need to recover,
Sleep 8 hours straight then follow with 1 hour nap or 2 if you can during the day, main thing is drink clear water this also helps with energy levels,
Coffee, 2 cups per day! Nice for the poop and to keep you focused
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I donated on December 7th and I felt exactly like you do.
The first few weeks of my recovery were terrible. It was nothing to be able to sleep for 12-14 hours a day when I first got home. My wife would prepare dinner and I felt like I was hungry but could only eat a few bites before feeling totally full. It seems like everything goes so much slower than it should recovery wise. The lack of appetite should fade, and the lethargy won't be too far behind. One word of advice since you just stopped the pain meds... do NOT stop taking miralax just because you've had 3 days of loose poops. Give it an extra week. Don't ask me how I know.
7 weeks later and I'm wondering why my abdomen is still rigid under my incision, and how long it will take for that to go away, or stop pulling / pinching on the right side when I sneeze. And WHEN THE HELL WILL THEY LET ME GET BACK IN THE GYM AND PLAYING SPORTS. Point is, in my limited experience it's hopped from one "when the hell will this end" to another and I'm hoping for both of us life will eventually get back to normal. The first 4 weeks were definitely terrible and things should start getting better in time (which seems to crawl when you're in this situation).
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It does get better. It really does. Just give your body time to adjust. For me it took two months to get the "all clear do whatever you want" from the doctor ... mind you I had already been doing that before. I figured that off opiates my body would tell me when I was doing too much ... and it did a couple of times.
I donated in September and even now I will get the minute twinge of pain now and then but it's just for a second. Stretching the core did wonders ... I think the operation tends to leave you walking hunched over (to protect the incision ... I know I was terrified my entrails would suddenly become extrails if I moved the wrong way or tripped) so everything gets bunched up. I also read that adhesions can form between organs and be painful so I tried to be diligent and stretch that belly every day.
The appetite also comes back ... I went through some slightly scary weight loss because I would just be full after two bites. Once you start eating more and moving more your energy will come back. Losing an organ is a pretty significant adaptation demand on your body. Just give it time and take all the naps :)
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I quite agree that bending and stretching exercises are a big help to get the innards and the whole body back to normal. My surgeon had me start gentle stretching exercises the day after surgery, even though the surgery was by a single 10-inch incision along the flank!
I also found that simply lying flat on the floor with arms and legs spread-eagled seemed to help the innards shift into comfy positions again.
Fr. Pat