My husband is ESRD and I am starting donor evaluation. I just wanted to reach out and get any thoughts from donors on things to do in advance - whether it is advice for this evaluation stage, preparation for surgery, additional things to consider when it is both spouses in recovery at the same time, etc.
I'm reading the other posts but feel free to give any thoughts you may have.
Hello,
I donated in December. What a great thing you are doing. Prior to the surgery there was not much prep. I would make sure your household stuff is in order. You can’t lift more then 20lbs for 6 weeks after surgery. After surgery walk, walk and walk. It helps with the gas pain. I was told to get GasX and stool softener. I used the gasx the very next day. I did not even ask the hospital. It’s a huge help. They should supply stool softener but just in case get some and also take that to the hospital in case they don’t give it to you. Bring a small pillow for the car ride home. Place it on your stomach for when you use the seatbelt. My recovery was super fast. I could have gone back to work after 2 1/2 to 3 weeks.
This was very helpful! I'm donating this summer to my brother and I hadn't seen this mentioned anywhere. Thanks!
Thank you! I’ll keep those in mind ... other than making sure the house is clean, are there other things that I could do to have us ready for the return home?
I donated to my husband in 2015. Get in your best shape prior to donation. Walking etc. Helps with speedy recovery. Stock up on groceries so you don’t have to go shopping or sign up with delivery service. Have someone stay with you both for a week to help with driving etc. I felt fine at about 5 days post op but wasn’t supposed to drive or lift for a few weeks. Don’t wear skinny jeans to the hospital because they won’t fit post op lol. Ask any questions, glad to help.
Thanks Marcy. How did it work for you during the hospital stay? Were you able to still be there for your husband too - to see him while he recovered given that you had to spend time there too?
We had our transplant at Ohio State. They put you in separate rooms so you are encouraged to walk to see each other. I went home in 3 days, he was in 5 days. My sister stayed with us so she drove me to the hospital. My husband had to be readmitted with some complications and by that time I was able to drive. Plan on someone to help you for a while because you have to care for yourself.
Thanks!
The evaluation process for me was lengthy, so be prepared by urine and blood tests, scans, and evaluations by a number of people. The surgery was relatively easy for me. I guess I would suggest that you do great self-care before and after the surgery: a good diet, exercise, stress management, and keeping your community of support involved and informed. Good luck!
The self care I understand for sure. Did you use a phone tree or have someone else helping inform people?
Great question. I talked to only a few people, but found out people I thought may be interested, were not. My wife, for instance (one of the kindest people I know), was never totally on board with my surgery. On the other hand, I had a male friend who was very supportive throughout the process. I was very careful with who I told, and I think it's easy to tell who has interest and will provide support, and who will not...I do know a person who is in the beginning stages of her donation, who is starting a blog about the spiritual and emotional aspects of the process. I got a lot of psychological support through various youtube posts of people who had given/received. Also, 'donortodonor' is a great source of support, which I only discovered later. Since my donation, I have been heavily involved with Donate Life Northwest, which promotes organ/cornea/tissue donation.
I donated my kidney in 2010. I have read all of the posts provided to you and agree completely with all of the advice given. My recovery was quick and uneventful. I was able to stop pain medicines 4 days after surgery and then just used Tylenol for a few more days. Sudden onset of fatigue was my most surprising post op condition. One moment I would feel completely normal and energized and then suddenly I would feel the need for a nap. That went away after 2 or 3 weeks. The donor evaluation process is lengthy and very thorough but be patient as the Transplant Center is making sure that you will be fine. Best wishes on your journey. It is a wonderful thing that you are doing.
I’m glad to hear that the fatigue went away for you. It sounds like some people had that longer. Was there anything that helped the fatigue - naps, a certain food for energy, etc?
An hour or two nap would do the trick.
You can do this!
I donated to my husband in August. We live in nyc close to our hospital which was very convenient. I was very worried about taking care of myself and my husband!
I suggest you have someone lined up to be with your husband and a 2nd with you while in hospital. I went home in 2 days and had someone stay with me while I was on my own. My husband was out in 4 days. I was able to go visit daily.
I was concerned that we would need help once we were home but we didn’t! We were both sleeping a lot. Sitting up out of bed was a challenge given the weak stomach muscles. My husband also needed a chair in the shower for the 1st few weeks.
I recommend that you have a few weeks of food prepped or delivered. That was a huge help! Home cooked meals are great to eat healthy and limit introduction of germs which is so important for recipient. We could only eat small light meals.
I hope that helps! Don’t hesitate to ask any question. Happy to help make it easier for you!
Thank you so much for the response! It does worry me a little that I won’t be there bedside at the hospital for him. (In the past when he has been at the hospital, I have never left him more than 30 minutes).
Of course I don’t want to get too far ahead in thinking. I’m not yet approved and don’t know if I am a match 
One step at a time.
I hope your testing is going well! Don’t hesitate to reach out as you get closer! I went to National kidney registry gala last week where we met a lot of fantastic donors — all altruistic donors! All donors expressed the benefits of having another donor to help throughout the pre and post surgery journey. I’m happy to help!
Thank you! We are all set to go and I’m donating on Tuesday.
Congratulations! You are such a generous person! I suggest you start to eat softer and simpler foods up until the surgery . Another donor advised me and I found that very helpful. Shoulder pain from the gas evacuation is likely but if your system is empty it seems to be better and use the disposable heating packs. I used them constantly — they were terrific! The last thought I’ll leave you with is that I would donate another 10 if I could! I feel emotionally and physically better! You will too when you see how much better your husband feels.
Be aware that you cannot take any NSAIDs after surgery for the rest of your life like ibuprofen and virtually all meds for arthritis. Also you must be on a low salt, no salt diet afterwards. I had severe neuropathy after surgery that lasted several years. If you have thus please ask for Gabapentin. It works. Get up and walk as soon as possible. Expect your husband to recover faster than you. Your surgery is more extensive. It’s worth it all. Good luck.
Thanks Manazefa.
I was approved to donate but we aren’t sure yet if I’m a match for my husband.
I don’t take much pain medicine now anyway so that isn’t a big deal and we have been doing no salt for the whole time he has had dialysis and before too.
Thanks for the tips.
Comfortable clothing for hospital and at home. I brought pjs, blanket, pillow (for my stomach) and neck pillow for hospital. Make sure your fridge is stocked and someone can stay with you guys once you return home for awhile. I couldn’t drive for 4 weeks. Some people do sooner but you really shouldn’t because of the risk of getting into accident and injuring your abdominal area. Don’t lay to long, try to walk often. But my biggest piece of advice- do NOT compare your recovery process to anyone else’s. Yes they say you should be out the hospital 1-3 days after surgery, yes they say you can return to work 4-6 weeks. But that is not for certain. It’s major surgery and if you have never had major surgery you don’t know how your body will respond. I was 26 when I donated and thought I was going to be running laps after surgery. But I spent 10 days in the hospital and 9 weeks off work because surgery triggered some GI issues. Now I would do it again in a heartbeat, but I wouldn’t have the same expectation as I did going in so that it doesn’t effect me so much mentally and emotionally. Overall it an amazing gift and the reward knowing what you did for your husband will be worth any temporary discomfort.
Thanks so much for this! Very enlightening. This has been a LONG process and I'm still waiting for clearance to give a kidney to my brother. Love reading this page.
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