Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: Leah on November 23, 2012, 09:39:03 PM
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I've been reading a lot. Maybe way to much. Now that the date is getting close, I'm starting to get a little freaked out about my quality of life after the surgery. I know that most people say they've fully recovered and many say they're doing all the same things they did before but then there's the other people who say their quality of life has declined greatly. I'm kind of worried.
What I want to know from anyone and everyone who reads this is: How do you feel physically? Are you ok? Are you tired? Are you suffering from ckd?
Please, let me know.
Thanks in advance
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My own experience: donated a kidney almost 11 years ago, at age 56. I'm fine. Recent check-up with a kidney specialist revealed no kidney problems. I'm healthy and fully active now at age 67, and ran a full Marathon last year. As you noted in your post, some donors have indeed had post-donation health problems, so there is some risk involved (as with any surgery for that matter) so it's fine to have concerns and still make your decision freely one way or the other.
best wishes,
Fr. Pat
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You have no idea how scared I was as the surgery approached - I knew I had to do it and it was the right thing to do, but I was sure I would never be able to do some of the same things I had done pre-surgery - I would be "damaged". Just wanted you to know your feelings are very normal......
I was 50 when I donated - 56 now. As Fr. Pat said, everyone has a different experience, but I honestly don't feel any different, and I have no issues doing anything physical that I did prior to surgery. I get the annual bloodwork, which has continued to be steady over the years. Only two things I have noticed (and heaven only knows if they are a result of the surgery or just age setting in!): 1. alcohol affects me more and 2. I dehydrate easier. Simple solutions - number 1 don't drink as much and number 2 drink more!
All the best to you and hope the support on here will help.
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Hi Leah,
I donated 3 years ago last October. I was 39 at the time - I am 42 now. In my case, I feel just as well as I did before the surgery. I go in once a year to get a checkup and get my kidney function checked, and to date, I am healthy and doing very well. For the first 2 years, my creatinine stayed at 1.1 and since I hit the 2 year post donation mark, it has come down to and stayed at 1.0 now.
The only lifestyle changes I had to make are that I can no longer take ibuprofen. Other than that, I eat the same, drink the same, exercise the same, my Husband and I like to travel as much as possible. I do nothing else differently now than I did before the surgery. (Actually, I think I excercise a bit MORE since the surgery). I have always been told I am kind of a hyper/high energy person, and I am still told that. LOL
You are correct that in some cases, people do have issues. Each person's situation is unique, but I wanted to share my experience with you. In my case, I absolutely, without question, would do it all over again. I have no regrets.
I wish you all the best and please let us know how you are doing. Please ask as many questions as you like. There are many wonderful people here on this willing to listen and offer advice/share their experience.
Linda
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Leah
Good morning. I am 53 and today, 1 month and 2 days post donation. All is well, NO pain NO discomfort. I go back to work next week and unless you looked at the scar and apart from being 10lbs lighter (good thing), you would not know anything had happened.
You apprehension and fears are normal. You can read that all through these post, and if you look you can read joy and happiness through out as well. Coming from a guy who was armed with print outs, and a folder of questions for my surgeon, you can never read to much or ask too many questions. All that reading writing and studying helped, as I like being informed.
There came a time when I was relaxed and calm. I was comfortable with my surgeon, staff and hospital. All my questions had been asked and answered. On the night before the surgery my wife (angel!) asked me if I was scared. Honestly I was not, I knew that what we were doing was the right thing to do and from that moment on I was prepared to handle anything that may come and you will be too!
All I can say is relax and enjoy the ride. You gift is a gift from GOD and you and your recipients lives will be MUCH MUCH better for it
There are so many wonderful people on this site who are willing to listen, I would love to be one of them if you need!
Marc
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Leah;
I agree with Marc...once I decided this was something I wanted to do and I had become comfortable with my surgical staff, I experienced some apprehension until I told myself I KNEW this was what GOD wanted me to do as part of my path in life. I didn't interpret that to mean nothing would go wrong, simply I was so convicted with my decision that I was willing to accept any collateral consequence and would deal with it as part of my life moving forward after the transplantation surgery.
Each of us comes to this decision in a different way and with varying perspectives and it certainly is normal to have some apprehension or fear with such a major and life-changing event. Listen to you own heart, it may be telling you that you're not completely committed at this point. There may be some questions you have left to yet be answered or perhaps the "support system" of family and/or friends is just not there at this point.
If you're not quite there yet - it's alright! I wish you luck in your struggle and decision about moving forward. Blessed be!
Scott 8)
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My reply is a bit more complicated than those above. Yes, I was scared and calm at the same time when going into surgery. I had complete faith in the transplant center, so other than fear of surgery, I had no qualms about post-surgery recovery. I'd read the standard research and felt comfortable until I got my first post-donation labs - my GFR was in the 40's. In the last 18 months, my kidney function has fallen slightly (GFR= 38-40). Physically, I feel okay. I've had the problems others have reported with insomnia, hot flashes, and occasional twinges where my incisions were. I walk 5 miles a day and work full time. Emotionally I feel very, very bruised. I feel angry with my transplant center which now tells me that they always expected my post-donation function to be this low (I don't believe that as last year they were cheerfully telling me to be patient and that it would improve.) I feel betrayed by their refusal to be honest about my current health and their lack of support. I also feel scared about my future when I let myself go there. I feel abandoned by my recipient, an old friend, who just can't handle my health concerns and who no longer calls me. I try hard to ignore these feelings and to focus on what I can do every day to stay healthy and live in the present. I rarely visit this site any more as my experience is pretty much outside of the cheery tone generally set.
I went to a reputable transplant center (Georgetown University Hospital), read the literature, and talked to people in advance. I failed to find out my lab results before the surgery and to have them read by someone outside of Georgetown. I did actually try to do that - I visited my PCP and asked about a physical. He told me that there was no way I would be allowed to donate unless I was in perfect health. Neither of us knew that Georgetown would take a donor whose GFR was 67 and whose GFR had fallen 10 points in the previous 2 years. I still believe - usually - that living donation can be safe, but I see the "expanded criteria" as benefiting the recipients and transplant centers with no research or protection for donors.
Be careful. Be more careful than you think necessary. Ask outside physicians for evaluation.
Good luck.
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Brenda,
I am so very sorry that you did not have the outcome you expected. I do believe the system overall favors the recipients as they are sick patients and those are the only ones doctors know how to treat. The donors are not always protected as they should be and I agree that donors need to be their own advocates, find a second opinion outside the transplant hospital and get a copy of every test they have done.
While you say, it is difficult for you to visit this "cheery" site, I humbly think it is so important for donors who have not had the perfect experience and have had some adverse effects need to come forward and educate the public. It certainly isn't going to come from the transplant centers, as they are interested in the bottom line. I would like to see donors and their families come forward and have those stories portrayed side by side with the "cheery" ones. It would make for a more real story and one that makes the decision process more difficult. Being a living donor, having elective surgery and possibly compromising one's future health is not easy. If it was, all the doctors and nurses we all met along the way would have donated their kidneys to the thousands of patients they have met along the way in their units, the same way many have stepped up to donate blood or stem cells. Kidney and liver donation come with surgical risks and possibly long term health compromises.
It sounds like you are doing the best with what you have now. Focus on the positive. I am so sorry that Georgetown has been less than fair with you and your feel abandoned by them. Have you ever considered taking legal action against them to compensate for your loss? It obviously wouldn't change your decreased kidney function, but it may provide for you in the future if your ability to work is compromised. And it may bring some balance and protection for donors.
All the best to you and again so sorry for the outcome you have experienced.
Sherri
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Hi Leah,
You can never read too much prior to making this decision. I was very afraid early on in the process, but once I read tons, met with the medical team and made the decision, I calmed down.
It's almost a year since I donated to my brother, and I feel fantastic! I will admit that I miss my nsaids for minor arthritis from time to time, but the sight of my brother thriving at this time in his life makes it well worth the sacrifice. My recovery was much easier than I had anticipated. I was walking laps in the hallway at 5 am the morning after surgery. Out of the hospital and into a nearby hotel the day after surgery, and home the day after that. Nothing but tylenol for pain once I left the hospital. I flew to Paris a month after surgery with some great friends who carried my bags. I was careful about not lifting any thing but could walk 5 miles or so a day within a few weeks of surgery.
I can't tell you how much it means to me that I could do this for my brother. We did the transplant when he was getting to a point to need dialysis, so he never had to experience that whole process.
I have absolutely no regrets. We are a bit older than most here; I was 61 at donation and my brother was 65.
I think it is very important to read the experiences of as many people as possible. Not everyone has a positive experience to share.
Best of luck with your surgery.
REgards,
Jane
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Dear Leah,
My donation went well, and my recipient is very happy after 1 1/2 years. I developed ulcerative colitis after the surgery and have never regained my previous good health. It is impossible to know if the stress of surgery contributed. Nevertheless, I would make the same decision now that I made then.
Love, elephant
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Thank you all for your responses so far. And Brenda, you're the stories i need to hear! If it wasn't for information like that I wouldn't know to ask my nephrologist what my creatinine and GFR levels are! I'm confident in the doctors at Henry Ford Detroit and I believe they have my best interest in mind, but every story I hear better arms me with facts and questions that I can ask my transplant team.
Anyone with any story, sad or happy, I want to hear.
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Leah,
You can also ask your center to match you with a buddy from your hospital. Ask for people across the spectrum, maybe someone who had a problem after surgery or maybe a decline in health. You will see how they react to that and how open they are to discuss real issues that happen. How will they support you if you encounter an adverse event.
Keep learning and asking and make sure you feel comfortable with the risks.
All the best,
Sherri
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Hi Leah!
I donated at Henry Ford in Detroit July 15, 2011. All went extremely well and they took good care of me. I traveled from Seattle to donate to my sister. Please send me a message if you would like to know more about my experience. Who are you working with?
The more questions you can ask your team the better, I bombarded them and this site along with some others were great resources to help put together those questions. My first 2 weeks were rough, my body didn't reabsorb the CO2 like normal and it caused extreme discomfort and terrible nausea. Once I got past that I recovered pretty quickly, with a lot of naps! Today I am running, doing yoga and keeping up with my 2 kids without an issue.
Good luck! Would love to chat more about Henry Ford!
Julie
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Hi Leah,
After donation in 2005 I developed symptoms that for a while I though might have been due to low GFR. It may have de-focused me in the wrong direction for a while. It turned out to be Lyme disease, but it took years to figure it out! At one point I had a headache for a year, and the restrictions on pain relief (Nsads or something like that) was a drawback of the doantion. In 2011 I developed bradycardia (slow heartbeat) from the lyme. In general, if one develops health problems, well, you wonder if the one kidney is going to be a factor in dealing with them. So far its been minimal, but I am concerned. I was 54 when I donated btw. I think the most important thing to do if you are looking at being a donor is to check (for yourself) your level of pre-doantion GFR. In other countries it has to be 80, but here its up to the team (and you!). Best wishes, Rob Halverson
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Thanks Rob, I did ask the nephrologist about my GFR and my creatinine and the numbers are 120(something) and 5.9. I know from all I've read that that means my kidney function is pretty f-ing good :)
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@ Jewels!
What a coincidence! I had my surgery done at Henry Ford in Detroit AND the CO2 didn't absorb like it should of and I was in pain for, like, two weeks. Did you tell any doctors about it? Because I went back to the hospital a week after surgery and the doc (some guy with a real long greek last name) told me that he'd never heard of that happening.
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Dear Leah,
I had the open donation surgery, so no C02 was used in my surgery. But a while back a doctor posted on this site an interesting explanation of why some donors who have had the laporoscopic surgery (with the inflation gas) may have odd pains (e.g. in the sshoulder) after surgery. He admitted that even though he himself was a doctor he did not find out about this until another doctor explained it to him AFTER his kidney donation. Anyway, it goes like this if I remember it right: when CO2 is used to inflate the abdomen for laporoscopic surgery, lingering pain afterwards may not be because of gas left behind, but rather because the CO2 can interact with the moist inner surfaces to form a mild carbolic acid. That acid can be strong enough to irritate nerves, producing the feeling of pain even in areas (shoulders) not touched by the surgery. It goes away gradually as the acid is dissolved and the irritation of the nerves subsides.
best wishes,
Fr. Pat
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Hi Leah,
I'm 28 and only 3 weeks out of surgery, but physically I'm already feeling much better. Prior to the surgery I was extremely active and I haven't been able to fully test my body because of how recent my surgery was. However, I am walking around and just did a 3 mile walk today. I have general soreness and some odd swelling above my main incision, I've read like 3-4 different possible things it could be, which is going to be checked out when I go to my surgical follow up in 2 weeks.
Honestly the first couple days after surgery were the toughest for me, but every day has gotten easier and I haven't had any major set backs. Freaking out is definitely normal, especially with all the information out there. Trust your doctors to take care of you and follow their instructions and everything should be fine.
Brandon
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Hi Leah - Strange that he would say he never heard of it?!? At the 9 day post surgery mark I was so uncomfortable, couldn't eat or drink, that when I called the transplant center my surgeon sent me to the ER. They did a CAT Scan and x-ray to make sure there was no obstruction or complication from the surgery and saw that I had as much C02 still in my body as I did the day after surgery (they had to do a chest xray then as well because I was having shortness of breath.) They kept me overnight to replenish my fluids and gave me IV anti-nausea which was a dream come true...was actually able to eat. By day 15 the nausea finally went away.
I hope you are feeling better now!
Take care-
Julie
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Hi Leah,
A lot's been said in this post already, so I figured I'd just stick to the question in the subject line of your post =)
I donated 3 years ago, at age 27, in good health. Right now, I feel great and I'm more active than I was before I had the transplant, oddly enough. I didn't feel at 100% until about a year after surgery, *but* keep in mind everyone heals differently and at a different rate. When I say I didn't feel "100%," I mean I could do pretty much everything as I used to but I kind of felt like I would get tired a little more quickly than before. That's definitely not an issue anymore.
Other quirks, since it seems you're looking at long-term outcomes:
1. Kind of a bummer I have to limit ibuprofen (since it's metabolized in the kidney) and I get fairly regular headaches. Tylenol isn't helpful to me, but my nephrologist said ibuprofen should be ok in limited doses.
2. Did notice alcohol affects me more quickly than it used to, pre-transplant. I've seen no research on this, but heard anecdotally of other donors having the same feeling.
3. I had regular check-ups at my transplant center to follow my kidney function. Now I make sure to have that checked by a regular physician to make sure creatinine and kidney function is on track, and it is.
Good luck with your decision, whatever it may be.
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Leah, in a much earlier posting I shared that I was really lucky because I was moving forward full steam ahead and thought way too late in the process that I needed to involve MY doctor in all of the tests as my own personal independent healthcare expert. In the end all was good but I just got so caught up in donating that I missed the obvious need until the last minute. Use your MD throughout the process!!! It is easy sometimes to forget about such obvious things. I did so at the last minute and post transplant he is more informed and it has helped in my follow up appointments with him.
Good luck!
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Leah,
I donated to my older brother I 2008. Both of us have done very well, so it is another 'good' story. He has had a couple of infections which scared us. For me, it has been a steady recovery. Now, I don't really notice any difference. For sure, my bp is little higher ( 115/75 now) and my GDR is lower due to NLT one kidney. The surgery was performed at Clarion in Indianapolis. They were excellent and had very good follow up. After surgery, it took a while to get totally back to normal. I did go back to work after 3.5 weeks. I would recommend that one take a full 6 weeks off. Keeps the grump factor down.
I'm glad that Brenda posted her experience. Every case is not all positive. You have to consider the risks. It was my brother - he was worth the risk. I feel the same about my family members. I would have been less altruistic otherwise. You also have to consider the people that depend on you.
Recipients get most of the attention. Donors too often are taken for granted. Hard to change that. People have done such a good job of talking up the fact that you can live with one, that sometimes people think too little of it. Hardly any of them are recipients or their family. For me, my brother and his family are very appreciative. So I guess I'm lucky there.
Consider the value of the donation and the cost. It will help you decide.
Cheers
Oldnslow