Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: HappyTimes on July 19, 2012, 11:28:11 AM
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Hi everyone! First of all, I would thank everyone who has posted. I've been scouring over this forum the past two weeks and it has been a HUGE help.
I am in the process of becoming a donor for a friend who's relatives have all been ruled out. The best way I could describe my experience is "unexpected". However, after reading what other people have posted, I guess I should not have been surprised!
1) I can not believe how slow the transplant coordinator is to respond to my inquiries. Even for basic questions such as "What time should I arrive?" takes a couple of days to hear a response. Perhaps they are very busy, but it makes me feel like I'm not a priority.
2) The information I received from the hospital was deceiving. As I've come to find out, this is not a minor surgery and major lifestyle changes accompany it. After reading through the documents for the third time, there are mentions of the complications but it is hidden away. Also, the huge statistic on the front page that living donors live longer than the general population makes me wonder if they take me for a fool.
3) I've finished all the required Lab and Imaging tests (except for the CT) and still have not met for psychological/emotional testing. I am 28 years old so (at least I hope...) I have a long time to live with the adjustments.
4) There has been no financial guidance so far. If it wasn't for this forum, I would have no idea to even keep that in mind! I was under the impression that the recipient would cover all expenses in the event of complications but that is not true.
I guess that is it for now and if you've made it this far, thanks for listening to me rant. :) I am still excited about the possibility of really helping my friend but am very fortunate to have found this forum so I would be informed about what will/could happen!
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HappyTimes,
First, congratulations on considering being a living donor. It can be a very personally rewarding experience!
I am unsure what facility you are considering donating at, but the transplant coord at the place I donated did tell me up front when her 'clinic' and 'surgery' days were so if I didn't hear back from her on those days, she would get back to me the following day. So I assure you that you are a priority, but perhaps they are busy, short staffed, or have one person doing the job of three?
It is MAJOR surgery. Please inform yourself through this and other websites along with tons and tons of questions for your coordinator and your surgeon. No question is too stupid or not worth asking. Everyone on this site is super helpful. I'll be honest-since I donated in Feb I have not really had any 'lifestyle' changes other than I can no longer take ibuprofen, aspirin or any other nsaid's on a regular basis. I do occassionally take them if a bad backache kicks in. But this really is the only change in my lifestyle. I am only speaking for myself-others may be different.
Financially, you must take into consideration your time off of work for recovery too. Other posts on here have addressed some options that may be persued to obtain funds however, I was not able to receive any and had to dip into my savings to cover expenses while I was recovering. The recipient is not obligated to do anything other than receive your kidney. Sometimes they offer to pick up some expenses as far as travel, lodging etc.
You are giving someone a wonderful gift-just make sure the risks are low enough for you to feel comfortable with
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Thanks cupid!
And great to hear that your recovery went well! Your advice is well heeded and thanks for the details on the financial/workplace issues.
My major lifestyle concerns:
Playing soccer - I do this frequently to stay in shape.
Drinking - 2-3 drinks over the weekend with friends is very common.
It's a lot to process... All the research I've found has shown that if the recipient get's a living kidney before being on dialysis, it will last longer. I've been pushing through the tests for that reason but there are a ton of factors.
Thankfully, my research hasn't held up the process but I want my friend (also 28) to have a good life. It's been very helpful reading through other posts on guilt!
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Continuing soccer should be no problem. The doctors are only worried about sports that might deliver so hard a blow as to damage/destroy the remaining kidney. I don't know if there have ever been soccoer players who have lost a kidney due to a blow on the field? It may be a while before you get your stamina back, but it is reasonable to expect a return to full activities. Some athletes choose to be extra-cautious and wear a protective pad/shield over the remaining kidney. But always keep in mind that it is MAJOR surgery, and a small percentage of donors have had long-range complications.
Many donors report that at least for a time after the surgery they were more sensitive to alcohol than before. So when you start consuming alcohol again be cautious (especially about driving) as one drink may have the effect that two had previously (which may save you a lot of money in the long run!) Be careful until you see how it effects you, as each donor is different.
best wishes,
Fr. Pat
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I exercise regularly and see no problem with the soccer-unsure if anyone has had problems with soccer and one kidney. But you really do have to take about 4 weeks off of exercise to keep the risk of hernia low (I did walk but that was about it) I also have drinks with no problems. So these two concerns should be okay.
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I'm 46 and I have also made no lifestyle changes (except not taking NSAIDS). I still have a glass of wine a day or so. I don't do anything I wasn't trying to do before the surgery, such as eating well and getting exercise.
The big considerations are watching your BP and drinking lots of fluids. Otherwise, life goes on as any normal, two-kidneyed healthy person should live.
My recovery was easy, no big deal at all. I think we should take the risks seriously, but not overplay them.
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Happy Times,
Sounds like you are thinking this through and educating yourself about the potential risks to you and the potential benefits to your recipient. You may also feel more comfortable getting an independent opinion from an outside nephrologist or talk this over extensively with your primary care doctor to see if they have any input in helping you with your decision. While the studies indicate little risk to the donor it would be interesting to see if younger donors who live longer with one kidney differ from an middle aged or older donor. Future pregnancies has been discussed on this board also so you can search for those threads as well if that is something that is of a concern to you. Most donors have not had issues with pregnancy but as from the research I'm sure you saw that donors are at risk for a slight increase in blood pressure and/or proteinuria, both concerns during pregnancy. Doctors need to inform you of all the potential risks and while some are small when a complication happens to you it is 100%. I hope everyone's persoal stories and support with whatever your decision makes this a positive experience for you.
Good luck and keep us posted.
Sherri
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Thanks everyone!
Whew, that is good to hear and a huge relief about soccer/drinking.
FrPat: I will definitely look into the protective gear and thanks for the information about alcohol after the surgery.
CK: Good advice on risks. I do drive every day which is statistically very dangerous...
Sherri: Thanks to informative posts like yours, I will ensure an independent party reviews everything. I also want to make sure that if I proceed, that I am tracked for years so that future people can benefit.
And good to hear about people's recoveries!
So, the next step is to meet with the doctor and keep discussing it with my family. Also, the coordinator has been responsive (cupid, you were right that she can only respond on certain days due to scheduling) and everything is moving along nicely. We'll see!
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1) MAJOR SURGERY....no doubt about it....
2) After surgery, you should plan on NOT lifting anything heavier than a quart of milk for EIGHT (yes, count them) weeks. This is ABSOLUTELY ESSENTIAL. You do not want to develop a hernia...and regardless of your age---you are having MAJOR surgery.
3) Drink lots of water...and walk as much as you feel able to walk...
You will have plenty of time to get back to playing soccer and drinking your wine...
RIGHT NOW, you are embarking on something FAR more important: Saving a life!
You can do it...and we are here to help.
Phil Hoover
Chicago
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Thanks Phil Hoover!
I heard from the benefits contact at the company I work for and got what I would consider great news:
- Up to 6 weeks with full pay/benefits. This would completely deplete my compensated time off and any additional time off would be unpaid.
- If I am permanently disabled due to the surgery, I would be eligible for long term disability after 90 days.
- I would still be "covered" by life insurance.
- If complications occur between after 6 weeks but before the 90 days, I would have to pay the full premiums for insurance but would not be dropped.
- Modifications can be made at work to prevent lifting with the possibility of additional telecommuting days.
- They made it VERY clear I was not to return to work until cleared regardless of how long that takes.
Again, a HUGE thank you to everyone for giving me the questions to ask! I still need to discuss with the coordinator exactly what the recipient would cover and what I would have to cover but I got a good sense from reading other posts.
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1/6 match. I guess that's not bad since I'm not related but I was (perhaps unrealistically...) hoping for better.
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We were told matching doesn't matter much anymore, it's about antibodies. We were a 1/6 match and different blood types completely and they still feel he should get 25 years out of the transplant.
Re: lifting...I certainly didn't wait 8 weeks to lift more than a quart of milk and I was fine. You certainly don't want to start slinging weights around right after surgery, but the reality was for me-life went on. As I felt better I got tired of carrying one grocery bag at a time and started gradually carrying more weight.
It is major surgery, you do want to be careful, but my experience was that it was quite an easy recovery. Probably the hardest part was the incision healing, that was painful for a while.
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HappyTimes,
I just donated last week. I saw the surgeon for a check-up and asked about the alcohol question. He said that I won't really want a drink for a few weeks, and that at first I should watch myself to see how I'm processing it. He said it takes 6 months to a year for the remaining kidney to "grow" to do the work of 2 kidneys. I figure I'll play it by ear.
Also, a little side story- my Nana had an accident as a kid (she fell down the stairs) and lost a kidney. This was the 1930s. They told her she'd probably not be able to have kids, would have to take it easy, etc. She had 9 kids, was very healthy and lived to be 85. She was one of the reasons that made me feel I'd be ok after donation. Good luck to you whatever you decide to do.
-Annie
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Happy
Hi, again........congratulations on donating, you are doing a wonderful thing.
The process - no it's not easy, and for good reason, they want to make sure your'e a decent match, physically healthy & psychologically prepared & doing it for the "right" reason(s).
A few responses to some of your concerns
1) I can not believe how slow the transplant coordinator is to respond to my inquiries. Even for basic questions such as "What time should I arrive?" takes a couple of days to hear a response. Perhaps they are very busy, but it makes me feel like I'm not a priority.
Peter - I had a somewhat similar experience. I think most places could use a more coordinators - its got to be a tough job, my hospital (Columbia Presbyterian in NYC) does hundreds of Kidney transplants a year, so the coordinators are dealing with a large volume of people, they care about you, they are just a little overwhelmed at times.
2) The information I received from the hospital was deceiving. As I've come to find out, this is not a minor surgery and major lifestyle changes accompany it. After reading through the documents for the third time, there are mentions of the complications but it is hidden away. Also, the huge statistic on the front page that living donors live longer than the general population makes me wonder if they take me for a fool.
Peter - there's a LOT of info and of course it's major surgery. I was 42 when I donated went in for surgery thursday am, was home sunday am. For most people I think there are no major if any lifestyle changes at all. Living Donor do statistically live longer than the general population. I questioned my surgeon on this (the awesome Dr. Lloyd Ratner - one of the developers of the laparoscopic neprectomy) he said the reason is because - 1st you have to be pretty healthy in the first place to donate, 2nd living donors are really pushed to have yearly physicals - these 2 factors alone put us ahead of the general population in terms of being healthy to begin with and checking up on our health post surgery.
3) I've finished all the required Lab and Imaging tests (except for the CT) and still have not met for psychological/emotional testing. I am 28 years old so (at least I hope...) I have a long time to live with the adjustments.
Peter - I found the psych evaluations very......pressing (and I was a "simple donation" - in good mental health donating to a father that I had a great relationship with) - maybe it was just that New York psychiatrists are a pushy demanding bunch.
4) There has been no financial guidance so far. If it wasn't for this forum, I would have no idea to even keep that in mind! I was under the impression that the recipient would cover all expenses in the event of complications but that is not true.
Peter - not sure - my Dad's (recipient) insurance covered everything and the hospital did all the follow up testing and my first yearly follow up physical, even though I am fully insured.
Good luck you will be fine!!!!!!
Peter
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Congrats!! I wanted to ask you seeing as I am about to donate myself, The period between noon and midnight, the all liquid diet... Am I allowed to have milkshakes? or a milk shake with finely ground oats? Or should it be Water all day long the day before my surgery?
-Bane
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Different hospitals (and different surgeons) may have different requirements about eating/drinking and about "bowel cleansing' before surgery, so it would be good to get clear instructions from YOUR hospital. What might be allowed in one place might be prohibited in another place, as medical professionals have differences of opinion on the importance of these steps.
Fr. Pat
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Hi, Happy.
Good luck with the process. I can definitely empathize with the problems communicating with the coordinator. Mine kept informing my "partner" (recipient candidate--I was non-directed) of dates for appointments, but not bothering to inform me directly. I never really knew whom to call to know where I stood.
In my case, since I know and like the coordinator, I think the issue was underfunding/understaffing. Still, it added to my frustration. I was particularly unhappy about not being able to meet my surgeon before the surgery. Literally, we met as they were placing me on the operating table.
Also, I know what you mean about the "happy talk" from the transplant establishment that sometimes seems to soft-peddle the risks to donors. For an antidote to that type of message, you might try, (http://livingdonorsarepeopletoo.com/ or http://www.sirencristy.blogspot.co.il/). She herself had a very unhappy result, and is sort of a watch dog for failings, particularly towards donors, of the transplant industry. Note: her tone often seems quite cynical and bitter, most unlike that here on LDO. But she very kindly sent me a lot of interesting information after we corresponded briefly, and she raises a lot of good questions about things like gaps and other inadequacies in the follow-up and data collection on post-donation experiences. I found that being exposed to her side of the story helped me feel I was considering the donation from all angles, without merely jumping on the bandwagon of "isn't it great to donate".
That said, I donated about 10 months ago, and have been fine. I never regretted it for a split second. I definitely agree you must be careful about lifting, and never let yourself get dehydrated. (I live on the edge of a desert, and so I'm a little obsessed with this point, so I tend to carry water bottles around with me).
LDO is a wonderful tool for getting information and support.
Good luck! Snoopy
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Studies have shown that living donors do live longer than the general population, but that reflects the intensive screening process. No one who is "sick" or in a weakened state qualifies as a living donor.
The real question is: do living donors live as long with one kidney as they would with two? That is a tougher one to answer!
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My take on how long I hope to live. I prayed that I would live long enough to see my children grown. Well that has come and gone, I'm a grandparent to 5. Everyday since the last one graduated has been a bonus! I had the opportunity to help my niece and have never regretted it at all. There is some information lacking for donors but maybe this is the place to gleen it. So now I am more aware of my health, and taking charge, being a very active participant in it. I will live life well, love well, and, consider everyday a bonus.
I was fortunate enough to have had good health to become that donor, guess that some, One, had a plan for me, and it worked out. What ever happens here on out just happens, I will do the best I can to take care of my health, good diet and exercise. Using this site and staying in touch with all of the donors is probably the best thing we can all do. So stay in touch everyone.
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Thanks to each and every one of you that has responded.
CK - I would gladly take 25 years! The fact that it make last far fewer years is troublesome to me. I don't think I would feel resentful, just very disappointed.
KidneyBean - Great to hear about your story (I read your thread) and can only hope my recovery would be as smooth.
Peter - Thanks for the information!
Snoopy - Thanks for the links and other information. It's good to at least see the other side.
Jatopa - My thoughts exactly...
Dodger - I can only hope that I am as healthy as you after!
Right now, I am even more scared of the potential long term issues. Being relatively young (28) I have a long time to live with any side effects. My greatest fear is that I will be tired which has been reported multiple times.
While this would affect me, it also greatly affects my wife. If I am tired, does that mean I won't be able to do as many chores/errands? Would that keep me from being as effective at my job which causes me to lose out on a promotion? Will she have a worse life due to me donating? There is zero upside for her... She is being supportive but I can't help but worry about it.
Meeting the surgeons will happen in a week or two. I am gathering my questions. I'm not freaking out but I am scared.
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While this would affect me, it also greatly affects my wife. If I am tired, does that mean I won't be able to do as many chores/errands? Would that keep me from being as effective at my job which causes me to lose out on a promotion? Will she have a worse life due to me donating?
I'm glad you made this point, because it's definitely a legitimate issue. At every stage of the approval process (including the unofficial portion, when I consulted my rabbi), everybody's first question was, "What does your wife say?" As you note, your decision affects her too. And, unfortunately, donor outcomes can be quite difficult on rare occasions. As I posted recently, I made sure to make out my will, just before my surgery, just in case. Worrying about the potential long-term impact is normal, responsible behavior. You need to do a gut check--actually, gut checks, as individuals, and as a couple. One approach to this is to get as much hard data as possible (and it's not always so easy, since the data reporting and collecting system is flawed), to get a handle on what kinds of outcomes are more likely and less likely. Never let anyone get away with telling you that donation is risk-free. It's not.
All that said, usually it does go well, and it's a beautiful thing to do. Today is my 10-month anniversary, and it's gone very well so far. I wish you the same experience.
Good luck, Snoopy