turned away from being a donor

[hopingtodonate]

Hi-New hear.  I started learning about living kidney donation last spring and started the process through a hospital to see if I could be an altruistic donor.  Sadly, I was turned away.  Have always been healthy but now my bp was up and down (some readings were pre-hype.) and recently cholesterol was high. Time for me to eat better and exercise more!!! Also on a statin but I hope in the future I won't have to take that! Other people must have gone through this too I would think.  I'm wondering if there are stories out there of people in my position who got healthier and made another attempt to be a donor.  Wondering if I should try a dif. hospital.  Of course everyone's health is the priority but maybe another hospital would look at my case differently. Would love to hear about other experiences.  Not every donor could be in absolute totally perfect health including weight and everything could they?!  thanks! 

[Janjan1]

Me too.  My husband has been approved for a transplant and I hoped to be his donor.  I was tested....a all day experience at UAB last Monday, and they called last evening to tell me that I couldn't donate.  It seems I have some calcification of my kidney artery and aorta, in addition my BMI is a little over. It is a 33 and they require 30 or below. bummer for sure. I could lose the weight to be under the BMI but they said I could not do anything about the other issue.
Jan

[hopingtodonate]

thanks for the response.  I'm really sorry about your health issues and that you can't be a donor to your husband as you had hoped.  I don't know if you have any other potential donors but as I've learned about this topic I would like to say just ask people and educate people.  Some people have found donors through billboards or church, etc.  I knew nothing about living kidney donation until I saw a story on the local news.  That's what stated my interest in the topic.  The more I learned the more comfortable I was with the concept and the more I wanted to donate. I felt it was so amazing and wanted to help someone that was sick. I talked to someone who had been a donor for a family member just by coincidence so then you think -wow-she's fine-maybe I could really do this!  I hope everything goes well and that another donor is available for you.  You probably know about the website Matching Donor.com.  The internet is so great for learning and connecting. 
All the best and a prayer for you guys...

[Fr Pat]

     With regard to cholesterol, mine had been slightly elevated for a while so I was taking a small dose of a statin drug and that kept the numbers good (plus exercise and a good nutrition plan, of course.) Since my cholesterol was under control I was able to donate a kidney, and I continue with the statin drug. So if you get your cholesterol under control through better diet and exercise, plus the statin if necessary, that should not eliminate you as a possible donor.
     Hospitals are especially careful about blood pressure because donors have been found to have a slightly higher risk of developing high blood pressure after donation. Mine was fine to begin with, so that was not a problem for me. Again, blood pressure can be improved in many people through more healthful living. Also keep in mind that many people suffer from "white coat syndrome" where the tension of being in a doctor's office or hospital automatically raises the blood pressure. Some potential donors have worn a 24-hour monitor for a couple of days. It takes your blood pressure frequently during your daily activities to give a better picture of what your real normal blood pressure is.
     With regard to non-directed donors some hospitals may raise objections over relatively small matters just to see if the person is REALLY interested in donating. If it was just a passing fancy, the person may give up right away. If the desire is really serious, the potential donor will try hard to make improvements and then approach the hospital again with the evidence of improvement. Some potential donors who actually more "yes and no" may welcome the first rejection as a valid excuse to not continue.
     With regard to the matchingdonor.com site, I believe that sight will only try to match you with one recipient. If you intend to be a "non-directed donor" (that is, one who has no particular recipient in mind but is willing to give to a stranger. The term "altruistic donor' is often avoided now, as it might give the impression that those who donate to a family member or friend are less "altruistic".)
www.kidneyregistry.org on the other hand will try to match you with a patient who has a willing but incompatible donor. You donate to that person, and that person's donor gives to someone else. Again, they look for a "someone else" who likewise has a willing but incompatible donor who will pass along another kidney. Thus you would start a chain of several otherwise impossible transplants. But ONE non-directed donor (who gives but does not receive) is needed to start the chain. Some of these chains have resulted in 6 or 7 transplants or more. So, It's a possibility to keep in mind. When I donated non-directed 12 years ago this system was not in place as yet, so I donated to the recipient that the hospital chose. Now the computer data bank can search for matches among hundreds of patients. And since the transportation of a donated kidney while keeping it in excellent condition has been much improved you can sometimes donate in your home city and the kidney may be implanted in another State.
     I hope this info is of some help. If you are really interested keep getting well informed and keep plugging away. But also keep in mind that the small but genuine risks involved in living donation are sometimes not presented as well as they should be, so get well informed about the possible dangers involved as well.
     best wishes,
    Fr. Pat

[hopingtodonate]

Thank you for all of the information.  I can tell you have much knowledge (and firsthand experience) about the topic.  Yes-lots of terms out there but I was hoping to be a non-designated donor and be part of a paired exchange (lots of terminology as one learns about living donation!)  I agree on the point of All donors being altruistic!  You give me some hope re: continuing on this path to donation.  Good point as far as being diligent and a hospital learning if a potential donor is totally serious about donating.  I realize the risks and real experience stories I've read can differ as far as pain, any lingering affects, etc.  I have an appt. Mon. with my Dr. to go over the results of the bp 24 hr. monitor that I wore (it was from the transplant nurse-forgot to mention earlier)and my cholesterol which I learned in Oct. was a bit high.  These are new issues for me an I really want to change these numbers through lifestyle changes and I am learning a lot more about nutrition, exercise, etc.  Maybe I'm naive but I think I can do this.  I don't see myself as someone with these chronic issues forever and always on medication-call me stubborn.  I see the Dr. every 6 months and there were never any red flags before. I will stay in touch here! thx!

[JustAPyper]

Watch the salt intake.  That can raise your BP.  I used to eat sunflower seeds in the shell.  Everytime I got my BP tested it was marginal.  Stopped eating those and now I score in the normal range.

[hopingtodonate]

Thanks-yes, much more aware of salt in my diet now and using other spices instead!

[Porcelina]

If you have a smart phone (either iPhone or android) I would highly recommend using the app My Fitness Pal. You can use it to log the foods you eat throughout the day, and record any exercise you do. If you want to find out how many calories you should be eating in the day calculate your Estimated Energy Requirement here: http://caloriecount.about.com/tools/calories-goal

Once you know how many calories you should be eating per day, all you have to do (easier than it sounds) is try not to eat more calories than this. Or, what I do, is I eat more, but I also run and exercise so I can net at a certain number of calories. I'm also a pescotarian which I know many people don't want to do, but cutting down on meat, dairy and eggs will help your cholesterol go down too. It may take a few months to see the effects of your diet, but it's a proven method.

When I went to donate, my doctor said I was the healthiest donor he had seen in a long time! Some of it I owe to genetics but a lot of it is also because I am a Food and Nutrition Scientist.

Being healthy before surgery is absolutely essential. It's wonderful that your heart is there and that you want to donate but they just need to make sure you aren't putting yourself further at risk for diseases while trying to save someone else. Hypertension and blood pressure is a huge deal because with only one kidney your body has to work out harder to keep your BP normal... with a higher BP it puts you at an even greater risk for stroke.

Good luck on your quest for health and I hope you do get in shape to donate. It's a great thing!

[LJ]

Sorry to hear, though hopefully not a permanent rejection.

We had four potential donors knocked back for my son for various minor reasons...some systems are more conservative than others.

I was knocked back first on account of marginal blood pressure, and a couple of small kidney stones. The single hardest day of my life. I told the specialist I would be back in six months...watched my diet, hit the gym a little, and most importantly drank water like a fish. I was accepted just six months later and now we are six weeks post transplant. So far so good.

[Clark]

Bravo, LJ, that you were able to get control of the conditions of your deferral. Empathy that it was a hard day when you learned. I've been trying to get transplant professionals to seriously research and understand the nature of deferral on donor candidates for more than a decade now. My spouse was deferred for an otherwise undiagnosed condition she's still being treated for, a so called benefit of offering to be a donor. The deferral was a deeply affecting disappointment to her, and still is a life regret for her more than 12 years later. Best wishes.

[Snoopy]

Dear hopingtodonate,
   Sorry to hear about the setback.  At one point, the medical director of my center threatened to disqualify me for too much protein in the urine, which she feared suggested unacceptable risk.  That was definitely one of the very worst days of my life--I felt that I was basically murdering my recipient.  I'm not saying that was logical, but that's what I felt.
  Anyway, I didn't give up.  I remember pounding the table and yelling at the doc that I'd never had any bad kidney readings my whole life, and I refused to believe that there was anything wrong with me.  She kept telling me that, while it was a beautiful thing to donate, she couldn't let me hurt myself.  As I was yelling at her, I told myself how lucky I was that she "had my back", and would not lunge to grab my kidney even if it was too dangerous.  To this day, I still have a very soft spot in my heart for that doc.  Still, I "knew" I was really OK.  We came to a compromise: if I could give her three perfect 24-hour urine collection tests, she'd allow me to continue.  And so it was.
  I also had had to bring my weight down a BMI point or two to get it below 30 (I remember that the last kilo was the hardest, but I finally did it the week before the surgery), and that my BP was near borderline.
  Actually, that's kind of how I got into trouble with my protein levels.  To keep my BP below the borderline level, I has recently stepped up my exercise, and around then I was eating lots of tofu sandwiches.  Either of these can increase protein levels in the urine.
  However, someone with genuine BP or other problems could really be taking too large a risk in donating, so the centers must be careful, and save overly-idealistic donors from themselves.  It's part of their jobs. 
  I am so grateful that, in the end, I was able to donate.  But somebody who cannot donate can definitely find lots of other ways to channel their idealism.
   Good luck! Snoopy