wanting to know if these issues are normal

[mobico]

I am currently 25 days after donating a kidney. I have thank G-d been back to my regular schedule (for the most part) for two and a half weeks, but I still have lingering issues. I have joined the site today, and I hope to receive some feedback as to whether these are normal or not. In no particular order, they are:

- As I mentioned in a different thread, my left testicle is swollen and tender, and this continues up the body for a bit. Has anyone else had this experience? How long did it last for you, if so?

- I still experience tightness and discomfort internally in the stomach.

- I find that I can eat less than I used to be able to - even as little as half - before I feel full.

- I react to things more emotionally than I used to.

- I feel what feels to be pain in the left kidney (which is obviously not there)

- I find that I need to urinate more frequently, and that the feeling is more intense than it used to be. (And yes, I am drinking plenty.)

- There is still a bit of a "ridge" above the main cut (robotic laproscopic surgery; the muscle was not cut), I have no feeling in this ridge.

Thank you so much for maintaining this site, and for your feedback in advance!

[sherri]

Welcome to the donor club! I have found that recuperation varies so much among donors so it is hard to compare. The testicular swelling is not uncommon. Some male donors have had complications in this area but unfortunately it is not discussed much prior to surgery as a potential risk. Did your surgeon discuss this with you ? It should be part of the consent. The gonadal vessels are sometimes cut during the nephrectomy (the kidney removal part) when they cut the artery and vein from the kidney so it causes swelling to the testicle. This should be addressed by your team of doctors. Call your follow up coordinator and see if someone can see you. Did you donate in your near home? If not they should refer you to a physician who could address this for you and make sure you do not give your insurance it should be billed to the insurance of the recipient. They are to cover all expenses for both donor and recipient treatment as it is part of the treatment for the recipient.

The loss of appetite and feeling full is very common. A lot has to do with the carbon dioxide used to inflate the stomach. Took me a good three weeks to eat a meal. As long as you don'r have diarrhea, nausea, vomiting a fever or anything that would suggest an infection then it may just take time. Eat small meals and light easily digestible foods.

The "ridge" not sure but maybe it is just nerves that are cut and you don't have the feeling back yet.

Tightness in the stomach, yes. someone took a knife and cut so you will feel discomfort. Are you still taking pain medication? I found a heating pad (not straight on the skin use a towel or something to prevent a burn) and warm showers to be very soothing.

Urination- do you feel urgency or burning? Are you able to void okay and are you producing urine? You should be drinking at least 2 liters of water a day and putting out as much also.  If you are drinking like you should you will pee more often and that is good. If you feel any burning or not able to urinate again call your transplant center. That is what they are there for. Ask to be seen.

The emotional part is very normal also. You just went through what could be a traumatic event. I'm not sure of the circumstances in which you donated but this is a very emotional surgery. Crying and feeling sad is not unusual. Some people feel a little let down after the surgery, some are just so overwhelmed with joy or sadness. I saw a social worker for some time after the surgery. Once you are feeling better you may want to talk to a professional to help sort out your feelings. Journaling might be helpful also. Can I ask you to share your story here with us? Did you donate to family? Where was your surgery?

Wishing you a complete and speedy recovery (G-d bless)

Sherri

[mobico]

Thanks for your reply! Indeed, no one mentioned the possibility of testicular swelling beforehand - it was one of a couple of things that I feel should have been mentioned (nothing that would have stopped me, though).

I donated to someone I had not known beforehand, although I knew him pretty well by the time that the surgery went through! This is because he drove me to all of my appointments etc. I live in Israel, where many do not own a car, and this saved me from the extra time that it would have taken to take a bus. The hospital is about an hour away from the city in which we both live. I had decided to donate over the period of about a year, and I ended up responding to an ad.

I have an appointment soon, and as it is not bothering me TOO much now, I figured to wait. I have not taken any pain medication since returning home three days after the surgery, since any discomfort is not bad enough to disrupt my schedule and is therefore liveable with.

No burning at all in urination. A bit more urgency than I used to have. I have woken up a couple of times in the middle of the night to urinate - which I don't think I had done in the past 20 years!

As far as emotions - I very happy with my donation and am feeling fine about that. The emotions to which I refer are regular everyday ones; crying when I hear a sad story or at the wedding of a friend (that is due to happiness!). I am still not VERY emotional - the difference is slight - but I am more so than I have been. I cannot figure out what connection this would have to the surgery - but it seems to have started then, and I wonder if anyone else has experienced this.

Thanks again for your time and help!

Welcome to the donor club! I have found that recuperation varies so much among donors so it is hard to compare. The testicular swelling is not uncommon. Some male donors have had complications in this area but unfortunately it is not discussed much prior to surgery as a potential risk. Did your surgeon discuss this with you ? It should be part of the consent. The gonadal vessels are sometimes cut during the nephrectomy (the kidney removal part) when they cut the artery and vein from the kidney so it causes swelling to the testicle. This should be addressed by your team of doctors. Call your follow up coordinator and see if someone can see you. Did you donate in your near home? If not they should refer you to a physician who could address this for you and make sure you do not give your insurance it should be billed to the insurance of the recipient. They are to cover all expenses for both donor and recipient treatment as it is part of the treatment for the recipient.

The loss of appetite and feeling full is very common. A lot has to do with the carbon dioxide used to inflate the stomach. Took me a good three weeks to eat a meal. As long as you don'r have diarrhea, nausea, vomiting a fever or anything that would suggest an infection then it may just take time. Eat small meals and light easily digestible foods.

The "ridge" not sure but maybe it is just nerves that are cut and you don't have the feeling back yet.

Tightness in the stomach, yes. someone took a knife and cut so you will feel discomfort. Are you still taking pain medication? I found a heating pad (not straight on the skin use a towel or something to prevent a burn) and warm showers to be very soothing.

Urination- do you feel urgency or burning? Are you able to void okay and are you producing urine? You should be drinking at least 2 liters of water a day and putting out as much also.  If you are drinking like you should you will pee more often and that is good. If you feel any burning or not able to urinate again call your transplant center. That is what they are there for. Ask to be seen.

The emotional part is very normal also. You just went through what could be a traumatic event. I'm not sure of the circumstances in which you donated but this is a very emotional surgery. Crying and feeling sad is not unusual. Some people feel a little let down after the surgery, some are just so overwhelmed with joy or sadness. I saw a social worker for some time after the surgery. Once you are feeling better you may want to talk to a professional to help sort out your feelings. Journaling might be helpful also. Can I ask you to share your story here with us? Did you donate to family? Where was your surgery?

Wishing you a complete and speedy recovery (G-d bless)

Sherri

[SWB]

I just posted in the other thread regarding your testicular issue.  I was lucky to have that discussed with me.  The surgeon suggested a jock strap or tight underwear as it should be a temporary but uncomfortable condition. 

Wish I could suggest more on that front.

Good luck with recupement.

[sherri]

Mobico,

The testicular swelling issue seems to be one that some surgeons overlook. Many donors would not decline from donating but it is important for full informed consent to discuss all potential problems that may arise.Emotional and psychosocial issues are also not discussed much.  That is why it is so important for continued donor research and statistics on donor complications. There was a survey posted on here recently by Jennifer Martin from NKF and I hope many donors will take the time to fill it out. We can't improve on outcomes if there is no research to back it up.

I thought you may have donated in Israel. You may want to contact "Snoopy". He posts on this site and has a similar story to yours so look for his posts and send him a message. Could be a good resource for you. Hope your recuperation improves and if not don't feel shy about calling the hospital.

(refuah shlayma!)

Sherri

[Fr Pat]

     Informative medical article on this cited below. Also explains that there is a variation on the surgical proceedure that makes such swelling/pain much less likely. VERY important for prospective male donors to read and ask their doctor about EARLY in the evaluation process.

http://onlinelibrary.wiley.com/doi/10.1111/j.1600-6143.2011.03495.x/abstract

    Fr. Pat

[Michael]

Your reference to testicular swelling reminded me of a message thread from the old message board. Here's a link: https://livingdonorsonline.org/cgi/dcforum/dcboard.cgi?az=read_count&om=2411&forum=DCForumID7

Yes, it should be included in "informed consent" in the description of risks. It's now well documented--if not in medical research, then on this message board!

[Orchidlady]

Welcome to you!
I remember some similar feelings and issues as you describe. The tightness in my stomach seemed to last for a while. There is a lot of internal stitching and clips holding things in place. That is kind of what it reminded me of - a pulling, like pulling on a seam. I also had a numb spot immediately to the left of my main incision from the cutting of the nerves. It lasted for awhile, but, over time, the area kept getting smaller. By about a year out, the numb spot was gone - evidently the nerves regrew.
I also found I could not eat as much, so I would just eat small meals a little more often. I think more than anything it was the swelling that made it difficult to eat a lot. Your body's natural reaction to trauma like that is inflammation and swelling as it attempts to heal. I always commented it felt like I was carrying a football in front of me!
Good luck and hope you are back to normal soon.

[mobico]

Thanks so much to everyone for responding!

SWB - I have found the opposite to be true. That is, loose underwear is more comfortable than tight. It is true that with loose underwear I have to take care in how I sit or adjust my sitting position, but tight underwear produces a slight constant uncomfortable pressure. I sincerely hope that this discussion remains entirely theoretical for you!

Sherri - I saw that link to the survey, but from the post in seemed that they only wanted info. from those who donated in the States. Is this true? I'll keep an eye out for Snoopy - thanks for the tip. And thanks for the Berachah!

Fr Pat - that article looks like a step in the right direction. Too late for me, unfortunately, but perhaps I'll pass it on to my surgeon!

Michael - that discussion is exactly what I was looking for. Unfortunately, it was not exactly encouraging, but that's the way it goes. I guess. Like the majority of men who had developed this condition who posted in that thread, I certainly don't regret my decision, but would have preferred to have been told before. Although some progress has been made since then (7-6 years ago), it appears that not enough has!

Orchidlady - is there really internal stitching and clips still inside after the surgery? I thought that they sear the cuts shut with heat and leave nothing behind. Thanks for your input on the numb spot. It really doesn't bother me per se, but I did wonder if it was normal or not. And I am indeed eating less more often.

[lawphi]

My main incision was raised, but flattened with massage and time. My abdomen was sore for a good six months, mostly in the morning.  The soreness gradually decreased over that time. 

You should start feeling nerve regrowth at this point.  Nerves grow an inch a month.

As to urgency, It still could be a uti. I am prone to UTIs and experience urgency rather than burning.  I swear I could feel where the urerter was cauterized for weeks. 

My appetite took several weeks to recover.  It took four months to tolerate alcohol. 

[Orchidlady]

mobico,  I never asked, but, like you, I thought maybe they used something like dissolvable stitches inside (oustide I had nothing more than little tape strips that wore off with time). It wasn't until I saw an xray at the chiropractor's about a year and a half ago that I realized there were little clip like things everywhere! You could see them on the xray, as well as that blank spot where my kidney had been. Quite a sight! Guess they don't do any harm - I never feel anything.

[mobico]

Lawphi - your incision sounds like mine; that is what I meant by the "ridge". It has already begun to flatten. About an inch over the entire length of the incision - i.e., the upper part of the ridge - has been completely numb. I think that perhaps I have begun to regain some feeling (not that it matter so much, to be perfectly honest).

I doubt that it's a UTI - the one or two other times that I had one, it was indeed a burning sensation. I imagine that it is related to the remaining kidney adjusting, although I have nothing to base this on other than conjecture.

I sometimes feeling a pulsing, unbearable pain (for very short periods) where my left kidney was. Perhaps it is indeed the cauterization of the ureter, as you theorize.

I don't drink much alcohol - with a couple of exceptions. The major one is the Jewish holiday of Purim, which is coming up in a week and a half! So I guess I'll find out!

Orchidlady - that's really fascinating. I wonder if that is SOP, or if there are differing approaches. I may find this out in the future as well! (Maybe I'll ask at my follow-up in a week or so.)

[CK]

I'm about 27 days post-surgery. My incision and the laproscope holes still bother me, but mostly just where they rub against my clothes. I still have some drainage from them.  I don't feel pulling, per se, but a variety of minor pains that I think are probably normal.

The outer side of my left thigh is numb and painful and sometimes itchy (which is the worst because it doesn't work to scratch it) and I was told too that the nerves would slowwwwwly grow back and I could expect months of the numbness.

I don't have any testicles  so I can't speak to that, but I do sometimes get pains where the kidney was, as does my recipient, who had a double nephrectomy. We've decided these are "phantom pains" but maybe they are from the healing going on in there.

I guess people recover at different rates. My appetite is normal as are my bowels, but another donor I spoke to prior to my surgery said it took her 2 months to get "regular" again.

Sounds like most of what you are experiencing is not unusual, but check with the doctors anyway. Do you have regular follow-ups with the transplant surgeon?

[mobico]

CK - When was your surgery? Mine was first thing Monday morning on the 31st of January.
I don't have any draining at all from the incisions, and never did. I do have some very minor irritation from the clothing, but I wouldn't have mentioned it.
My numb spot is nowhere hear the outside of my thigh - it centered above the large incision, which itself is centered at the very bottom of my stomach cavity (between the muscles - I was told that due to the robotic surgery they did not need to cut any muscles. I was actually the first in Israel - or at least in Beilinson hospital in Petach Tikva - to have robotic laparoscopic surgery. The surgeon was very experienced, and there was an expert in the robot from Chicago who attended as well.)
I find it very interesting how different people recover so differently. I wonder if this is due more to differences in the procedure as performed by the doctor, or rather to differences in people's systems?

[PaulaHalvo]

I find it very interesting how different people recover so differently. I wonder if this is due more to differences in the procedure as performed by the doctor, or rather to differences in people's systems?

I'm not sure it's either.  I've had multiple Caesarean Sections and each of them has been different.  After one I felt horrid, and after one I was on a 'high' and ready to immediately have another baby.  I have no idea what makes the difference, but I just know that I have responded differently at different times.