Soon to be a donor. Questions

[dodger]

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. 

[jodyrn]

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.

[Aries7]

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

[jodyrn]

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. 

[bergstromtori]

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.     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

[dodger]

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

[livingdonor101]

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.

[blessed1]

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

[sherri]

Prayers for a smooth and uneventful surgery for both you and your mom. Where are you donating?

Let us know how it goes.

Sherri

[blessed1]

Thanks Sherri. Inova Fairfax in Falls Church, VA.

[tom carr]

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

[jodyrn]

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!!!

[sherri]

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

[Suzdave3]

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! 

[lawphi]

Sherri, JH Did would not administer drugs prior to hitting the table.  I repeatively asked, but was not showing signs of distress.