Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: J.P. on September 07, 2011, 08:14:08 AM
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Hello everyone... never really joined any forums before, but in looking around I found some interesting information on this site. I am in the process of testing to be a donor for my mother. Passed the blood test and cross match test, and will start the physical examination process at the Mayo clinic next week.
To say we are in a hurry would be an understatement... My Mom had some other health hurdles to overcome before she could even be put on the list to recieve a kidney. She has overcome those hurdles, but has been on dialysis for a few months now. I am wondering what the wait time average is to have the surgery, if testing all comes out well.
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It really depends on the center. Some centers can take weeks to get a donor approved, while others take months. After the donor is approved, it can also be weeks for a surgery date or months.
I had a friend have postpone a transplant at a center in my state. It was a six month wait to get another operating room booked. on the other hand, I hand picked my surgery date two months out.
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Thanks for the reply... I hope not months. I would like to be recovered by the holidays. Planning an anniversary trip with my wife.
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Dear JP,
Hi. Just a suggestion: be cautious about planning trips (or anything important) for after the donation surgery:
--- once a surgery date has been scheduled, it CAN be moved. Donor or recipient can catch the flu; sudden arrival or organs from a deceased donor that must be transplanted immediately can take priority in the operating rooms; etc. Some donors, after all the testing, have had the surgery postponed once or more for various reasons.
--- some donors recover much faster than others, and some have complications. Hope for a fast and uneventful recovery, but leave yourself a lot of slack as far as scheduling activities after the surgery.
best wishes,
Fr. Pat
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J.P.
I went through the medical testing from March through September before I was finally approved to donate (end of September). Our surgeries were set for the following October 22 (reasonably soon) but I think it both was dependent on the recipient's schedule and health as-well-as the availability of the surgical teams and OR space. I hope all goes smoothly for you and your mother is fortunate to have such a loving son to want to provide such a special gift of life. Good luck and keep us up on your progress.
If you don't mind my asking, are you from Minnesota that you're going through the Mayo? I am from Duluth. Just curious.
Regards!
Scott 8)
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I have family in Minnesota... Elk River, but no I am from Arizona, and if all goes well we should be having this done at the Mayo Clinic in Scottsdale. I have fished in Minnesota... considerably better than in the AZ.
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Hello Fr. Pat & Scott,
Thanks for the advice... I am trying to prepare myself for the adventure ahead. Start testing in the hospital for 4 days straight next Tuesday. Have been told that if everything comes out good, we could be in surgery by the end of this month. That is just with my mother's regular physician, not the surgeon. I can imagine how things can change in a hurry.
Here is a little back story...
My mother has had diabetes for many years and was able to control it with insulin injections. Just this past January she was hospitalized and we struggled to find out what was going on with her. She was lethargic, and lost 40 lbs in a couple of months. After weeks of in and out of the hospital she was diagnosed with "sarcoidosis", a type of blood disease. This disease, when not treated, deposits calcium in the kidney's, liver, heart and brain. This calcium, along with other issues help speed up the loss of function of her kidneys, and she has been on dialysis since.
We have worked to get the sarcoidosis under control for the past few months, and seem to have a real good handle on it now. The Docs worked to get her on the list for a transplant, and now that she is on it. I guess I am in a hurry to help her get well, and for our lives to return to some sort of normal routine.
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Definitely patience and flexibility will be the two things that you need the most to get through this with the least amount of stress and anxiety. And I mean that sincerely, not flippantly at all. I've been there, watching my husband deal with dialysis while I went through all the waiting and testing. Try to enjoy (or at least find interesting) the whole process.
Oh, by the way, my timing was as follows:
January: mail in the paired exchange interest packet
May: begin testing
October: testing complete and approval awarded
2 weeks later: match found! surgery scheduled for December to meet the needs of my husband and his donor
December: surgery successfully completed
Best wishes,
Kara
P.S. Fair warning: recovery was much easier for me than for my husband. I think we had both neglected to be prepared for the effects of all his new medication.
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J.P.
thanks for the back story - our prayers for you and your mother and hopefully continued control of the issues she faces. I have a brother in Elk River also - funny! Best of luck and keep us up on your progress.
Regards!
Scott 8)
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J.P.,
I believe that Mayo Clinic is one of the few Centers that do all testing in a less-than-5-day period. Mayo used to require a 3 month wait, however, to give potential donors time to change their mind. It is possible that your Mom's regular physician is correct about the timeline. :)
All the best for you, ;), and even more so for your Mom! 8) [sunglasses for AZ] Please keep us informed.
Bill
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Hi J.P,
I had all of my testing done in one day. This was in early June of 2009. I had to wait until they discussed things at the next committee meeting, which they had once per month. They had just had their monthly comittee meeting prior to me going for my testing, so I had to wait until they had their next meeting in early July for the final confirmation that I was approved.
I had also had a hysterectomy on May 11, 2009, so the doctors wanted me to wait a few months before I had a second surgery to donate a kidney. I ended up having surgery to donate my kidney on October 8, 2009. If not for the hysterectomy, the surgery could have been sooner. In our case, my husband was able to avoid going on dialysis before his transplant.
Best of luck to and your Mom. Please keep us updated as to how your testing goes.
Best Wishes,
Linda
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Everyone,
Wow!... there is a lot of support here, thanks! I am leaving for Scottsdale tomorrow, wont be back home till next Saturday. Kinda nervous, don't like being poked with needles. I am sure I am in for a lot of that this coming week. I will let you know how it went when I get back home.
J. P.
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and make sure it is done right....
There are plenty of opportunities to ask questions...and if there are not...then MAKE those opportunities.
Everyone here has given you excellent advice....
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Everyone,
Finished testing this week, the hospital was able to fit all the testing into 3 to 4 days. Was poked a lot, but I believe most of the tests came back well... I am pretty hopefull. I was advised that the next committee meeting will be this Tuesday, and hopefully I hear something then.
J.P.
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YAY! Tuesday is just a day away. Keep us updated!!!!!!
Nicki
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All,
Found out that I was a little high on the glucose test. I was told to lose about 10 lbs and come back in for another test when I do. I guess the BBQ & couple of beers opening weekend (Thursday through Monday) of football before the tests were not a good idea. That explains the glucose and the extra 10 lbs. Oh yea, I don't smoke... but I use smokeless tobacco occasionally. They want me to be off of that for 30 days also.
Let me sum up... I am on a diet (never been on one in my life), no beer during football games & quiting chewing. My wife and son are ready to take me out back and smack me around a little.
I will get it done.
J.P.
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HI JP...I am also in a holding pattern trying to bring down fasting blood sugar, as well as losing more weight. Exercise helps, too. An hour of moderate exercise can have a beneficial effect for 24 hours. Interestingly, 30 minutes of strenuous exercise can have the opposite effect. Good luck!
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There are many donors out there who are told to lose weight or watch diet for increases glucose in order to qualify to become a donor. I wonder about this advice. I am all for leading a healthy lifestyle. But to me it's like losing weight to fit into a dress, or for a wedding or an event in time and not a lifestyle. Do donors who lose weight, so the doctor can check off on their paper BMI less than 30, do ok in the long run. Shouldn't someone have to be able to maintain this weight loss to prove they are a good healthy candidate? Hard to know long term statistics since long term (15- 20 years out) is scarce. Seems like potential donors may be trying to reach a temporary goal so they can donate but there is no one monitoring once the donation has occurred. Are PCP being educated on reinforcing and educating their kidney donor patients that they need to keep the weight off, glucose control, high blood pressure etc. The transplant centers are monitoring for only 2 years if that at all.
I volunteered last summer on a transplant unit for a little bit and I met an African American donor who donated almost 20 years ago to his brother. His brother had since passes away and he was there because eventually he went into renal failure and received a deceases donation. He told me he didn't really focus on his health and didn't think about it much. Being an African American put him at risk for high blood pressure and diabetes (which led to his renal failure) and his family history (the brother also lost his kidney function to these diseases).IMHO, more thought needs to go into educating donors for long term health not just so they can qualify to donate an organ at any point in time. And we all need to realize the commitment we need to make to our own health once we choose to be a donor.
Best of luck to all of us who try to stay healthy. Always a challenge for me.
Sherri
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Sherri,
Great points all. I'll go one further and suggest that those who realistically consider donation need to take responsibility for their own health, both in the short and especially in the long term. Transplant counseling should include coaching relative to realistic expectations of both transplant process as-well-as short and long-term recovery issues and how to provide the best opportunity for full recovery, healthy living and long-term quality of life through nutrition, exercise and general healthy living. We have to be out own "best advocates" when we are making such important decisions and choices. It is so important for us all to remember, this gift-of-life will change the lives of recipient AND donor alike.
J.P. - It sounds like you're committed to making whatever changes you need to for qualification as a suitable donor. I'm guessing you'll make the right choices for sustained health and recovery for you and your family - good luck my friend, I hope it all works out for you. Keep us up on your progress please.
Scott 8)
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Everyone,
I will make the right choice, and I was a little taken back by being told to lose some weight. I am not really in bad shape, as a matter of fact... I think I am in good shape. My weight is 245... but I have been that weight for 20 years now. I don't play sports anymore, but I do lift weights and exercise semi regularly. Don't really get my cardio with lifting weights. I figured I needed to start losing some pounds now that I do not play sports anymore... I do not need to carry it around, but I do not think that the docs realize that I am probably in better shape than most people.
I figure the slightly high blood sugar is more due to eating very bad the weekend before the testing... NFL opening weekend and there was lots of BBQ's and parties where I did indulge in food that is not considered very healthy.
I am however thankful to the team at the Mayo clinic who made it absolutely clear that they are going to be sure that I am in perfect shape to donate before letting me... so I am taking this set back as a sign that they mean what they say.
J.P.
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J.P.
Congratulations on your willing to donate. I can commiserate with the difficulties of losing weight and maintaining it. I have always been 10 -15 lbs overweight especially after being pregnant and giving birth 4 times. I kind of just got used to carrying my extra weight. I am also what I call "undershort". The BMI scale is not kind to me. Before the surgery I vowed to have a BMI of less than 25, which I did achieve mostly due to the stress of having surgery. The weight then crept back up and I have been working at is again since January to bring it back down. Have another 3-4 nasty lbs that won't come off. Less than 25 is what is considered a healthy weight. I kind of make excuses about having pregnancies, hormones, aging etc but it is what it is. I can also see a difference in my blood pressure when I am at my heavy end compared to my ideal weight. (something to think about post surgery). This is also the scale the transplant center will use when evaluating donors. You can google BMI scale and look up your weight and height. At 245 lbs even if you are 72 inches tall (6 feet) your BMI is around 33.5. If you were a weight lifter and had considerable amount of muscle this might not apply to you but that is really applicable in extremely fit individuals. Above 30 is considered obese. Above 25 is considered overweight. Together with the high glucose these put you at risk for high blood pressure and diabetes. You may also have a family history as many of us family donors are donating to relatives who lost their kidney function to high blood pressure, diabetes of some familial kidney disease. I know as I age it is harder to maintain a healthy weight and also fit in exercise. Given my one kidney status I can't really allow myself to have the super bowl binges, the high salt, slack off on exercise because I am running on my spare. That is one of the challenges I face as a donor. I am aging (48), have a family history of high blood pressure, my brother to whom I donated developed diabetes in the second year after receiving my kidney. He too is overweight and has now made an effort to go to Weight Watchers and take it off. He has an autoimmune disease which knocked out his kidneys so my family history is working against me.
Mayo appears to be working with you and I hope does a good job helping donors stay healthy after donation as well as qualify for the surgery. Good luck with the small changes you will be making in order to become a donor. The LDO board is really helpful and encouraging to all of us who have similar challenges.
Sherri
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JP - you didn't indicate on the glucose test what kind they did. If they took blood, it was A1C which gives a number to reflect your blood sugar reading over time. If they did the glucose tolerance test where you drink a sugar loaded liquid with blood taken over a period of hours, that tests your body's ability to handle and metabolize over a period of time. Neither should be overly swayed by one weekend of eating. While not alarming, a higher than normal reading should be concerning. My A1C was a very modest .2 over the normal range and enough to throw me out until I lost weight and was retested. That very little .2 was enough to, technically, classify me as "pre-diabetic".
I know what you mean about the weight, though. It was kind of a shock when they said the same to me (Me?! I'm not fat - I'm big boned!). However, it turned out to be one of the best things for me. It forced me to re-evaluate my eating habits, my activity and lifestyle in general. I would not have done it on my own without the hard concrete evidence of all the testing as my wake-up call.
Good luck in your endeavor. Sounds like all you really need to do is tweak the eating, and you would be well on your way!
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There are many donors out there who are told to lose weight or watch diet for increases glucose in order to qualify to become a donor. I wonder about this advice. I am all for leading a healthy lifestyle. But to me it's like losing weight to fit into a dress, or for a wedding or an event in time and not a lifestyle. Do donors who lose weight, so the doctor can check off on their paper BMI less than 30, do ok in the long run. Shouldn't someone have to be able to maintain this weight loss to prove they are a good healthy candidate? Hard to know long term statistics since long term (15- 20 years out) is scarce. Seems like potential donors may be trying to reach a temporary goal so they can donate but there is no one monitoring once the donation has occurred....
Sherri
Sherri is all too correct, alas.
In all the excitement and pressure to "make weight" for donation, we can't forget that getting through the surgery is just one part of the story. We can't really "break training" afterwards, if we're the type of people who run towards overweight and the associated risks.
And, it's worth remembering that good data on long-term followup are hard to come by. Few such data really exist, and the studies that do exist are often limited by significant percentages of cases lost to follow-up.
Whether or not we have access to proper long-term, evidence-based follow-up monitoring, it really is up to us to adjust to life-long discipline (at least until they make no-fat French fries :) ) Be well, Snoopy
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J.P.
In the March prior to my surgery, I had let myself get to 297 pounds with a size 40 waist (largest I've ever been and I'm 6-02 and muscular anyway). I was told I had to lose weight and by the time October came around (surgery date), I was down to 245 and size 36 waist (eating right and working out daily-hard). Now, nearly a year post-op, I'm a 32 waist, nearly 200 pounds and running 5-7 miles 3-4 times a week, as-well-as continuing other exercise and eating right. Since my donation and I agree with Sherri whole-heartedly, I realized healthy living was no longer an option, but my new life style. If I can make these changes, believe me...anyone can. Good luck buddy.
Scott 8)