So many questions - Thank God there is this site

[SWB]

So, I find myself matching (round one) for my uncle who is more like my older brother.  Last one in my family to be tested and the only one who matched.  He has already gone through a transplant years ago and must have a living donor.  Talk about pressure  .  Anyhow, I have a date scheduled to go into his facility (University of Alabama) later this week.  And, I am sure that I will have a host of my questions answered there. 

Signed up here and requested a donor buddy (thanks to the moderator for providing that).  But, hoping some folks can answer a few questions for me (just random questions that keep popping up in my head)...

1.  So, as noted, I feel a bit under pressure and hoping all is a match with the two of us.  However, I know that high blood pressure will exclude me.  I just turned 42 the day after I got my phone call that we matched up on blood analysis.  My blood pressure has always ran a bit higher than normal but has not jumped in the high range.  Anyone care to comment on what you know regarding what the cut-off is for an adult male in their 40's?  Have done 8 readings at various times during the day.  I was pushing mid 130's (top number) over 80 (bottom number) for the first several days and then was able to relax so it went down some days ranging from 122 to 126 (top number) over as low as 72 (bottom number).  One day early on I hit 140/80 and then the very last day I *swear* the paramedic misread the thing and flagged it as 138/96 so that has me worried.  However, trying to remain optimistic.

2.  I was an avid runner for several years and stopped.  Been trying to get back into shape over the last several months.  So, dropped about 17 lbs before I got the call.  Within the last 2 weeks, I have dropped another 4 or 5 just from trying to eat right and lower my blood pressure.  So, now I feel like I should be back out there running again.  Of course, then it occured to me to ask - will I be able to run any distance (5k, 10k, half marathon) after the surgery and if so then how long?

Again, appreciate any responses.  I called the transplant coordintator on Friday when I got the last blood pressure reading and it came back so high, but it was after hours so I left a message.  In the meantime I am trying to be patient, especially given that I will be face-to-face at the facility later this week.

[sherri]

Good to hear you found this forum. Testing for family members is very stressful as you described. You obviously love your uncle who you describe like a brother so you don't want to let him down. There is a sense of love, obligation, guilt, fear of surgery and future health problems all rolled into one. Family donors are a vulnerable population yet the mechanisms put into place to protect us are few! I'm sure his doctors told him he must have a living donor this time and then send you DVD's to let you know how horrible dialysis is and how easy surgery is. That's sort of what i got.

You mentioned that you are the last one to test and so far the only family match. How would you feel if someone else would match and step up to donate? Would that make you feel relieved? You may want to consider holding off on continuing in the process if you aren't totally on board. That's not to say you won't decode to continue,  but maybe you need more time. In the meantime, are there other potential donors who really wanted to donate and just didn't match? If so maybe they could explore a paired exchange where they donate to someone else and that other person's donor donates to your uncle. The transplant center gives the option for donors to back out at any time ( that is the protection mechanism against coercion but difficult in families). Maybe one of those donors matched but decided to opt out. So don't beat yourself up about the hesitancy. Quite normal!

Each test that you pass will kind of throw you farther and farther into the surgery so you may want to just get information about the next phase and take it slow. Speak to the professionals honestly when you go. Ask all your questions about blood pressure etc. If your readings are high chances are you will have to wear a 24 hour monitor to see if you are healthy enough to donate. You may end up later on needing to be on hypertension medication if you decide to donate. There is frequent poster on here named Phil who I think donated at University of Alabama and had a great experience. So use the professionals both inside and outside your hospital . In term so running, many donors have continued to do marathons and some have even begun to train after donation. Need to keep well hydrated and give yourself time to heal after surgery.

Keep asking questions, keep posting and let us know how it goes.

Good luck,

Sherri

[PaulaHalvo]

I don't have all the answers, in fact, I have very few of them.  But I can assure you of one thing.  Your anxiety about your blood pressure can cause it to go up.  I'm an EMT and we call it 'white coat syndrome' though many things can cause an artificially high reading.  If you decide to go forward, the best way to get an accurate picture of your bp will be the 24 hour monitor.  Oh, and the paramedic may very well have gotten an incorrect reading, it does happen, especially if you were in noisy surroundings.

[SWB]

Thanks Sherri and Paula.

Well, I am definitely on board.  Actually very grateful that I am a match.  Just kind of feeling a bit freaked out that I feel that it is on my shoulders.  Realize that it may not actually be the case; however, can't convince my mind of that.  Regardless, I have no hesitations about moving forward at all. 

In terms of others matching - one never knows but I am only going by what I know.

I *REALLY* appreciate the response about running.  In talking with some very close friends about what I was going through I found it a bit suprising that I was describing everything without a lot of misty eyes until I said I didn't know if I would be able to run afterward and found myself suddenly sniffling and tearing up like a 5 year old.  I guess now I should really consider myself a runner LOL.

And, in terms of the "worrying about BP causing it to actualy increase" - amen to that.  And, I don't blame the paramedic, just realize that when he took it there was a room full of people talking to each other, to him, and asking me questions.  Kind of difficult to concentrate for both of us I am sure.

Getting a lot of good advice on here as I read through the posts and grateful for it.

[smudge]

With regards to the running, my recipient and I took part in a 5k (that's just over 3 miles) to raise money for our local renal unit just 10 weeks after our transplant.  We had done it in previously years and when we were making a good recovery about 4 weeks before the race decided to go for it.  We walked it (obviously!) but weren't the slowest competitors.  This particular race is a women's only event in London's Hyde Park with around 20,000 people taking part from elite runner to fun runners.

The following year I ran it again in 40 mins.  I'm no real runner but it wasn't difficult with a bit of training in the weeks running up to the race.  My fitness levels were back to normal within 5 or 6 months, had I been fitter prior to surgery and more into exercise I'm guess it would have been quicker.  There are other donors on here who are serious runners who've been back to normal in a much shorter time scale.  Like you I am in my 40's.

All the best for your forthcoming donation

[Fr Pat]

     Each donor recovers differently, so some get back to normal quicker than others. The main thing is to get back to exercise gradually, and listen to your body. I donated at age 56 and had not run much previously. I took up running afterwards, gradually, hoping to get up to the 5k distance to run at the "U.S. Transplant Games". I did it and then continued, eventually getting up to full Marathons. I did my last marathon in December, at age 66, but will cut back to half-marathons now. Many donors have done long-distance running/biking after the surgery. I was advised to be especially diligent about keeping well hydrated, because while the donor is not more prone to dehydration with only one kidney, IF dehydration occurs you will feel it fasted and harder. (I don't know if that has been proven scientifically, or is just "wisdom" passed along from individual experiences.)
     At the same time keep in mind that while living kidney donation seems to be a rather safe proceedure it IS major surgery. Some donors have had serious complications, and there have been a few donor deaths. So there IS some risk involved that the donor must be willing to accept.
     Also keep in mind that data sugggests that living kidney donors may be at higher risk of later developing high blood pressure, which is why the hospital may be very careful in evaluating the blood pressure of potential donors.
   best wishes,
   Fr. Pat

[SWB]

Thanks Fr. Pat.  I see many replies from you on various posts and learned a lot from reading through them.  So, thanks for diligently chiming in and sharing.

Have done some homework on the risks and no doubts about continuing the journey.  Know there is a risk of death since it is a major sugery and have read those statistics - If I am called Home then I'm at peace with that.  And, I knew that there was a high degree of probability that I would have high blood pressure post-surgery, digestive issues, and a range of other longer term risks.  I think I am the only immediate member of my family who has avoided high blood pressure to this point already.  Thus, my concern over trying to keep it in control since I read that at age 40 it starts increasing due to age anyhow. 

The replies from you all have definitely calmed me a bit.  I wouldn't have thought just "talking" to other folks would have helped in that way.  I will have to mention that to the Transplant team later this week when I go in.  And, I now have peace of mind about running eventually.  I just wanted to ensure I could get there at some point within a year of surgery.

Also, learned from the various posts that it is hard to tell how long it will take to schedule surgery after they finish the next phase and discover I  am good to go (see I am trying to have a little faith and positive thinking ).  I guess, the best thing from the replies that I have learned is to take it one step at a time since every situation is unique.  I should just treat this situation as I have with most of my life -I have always lived in the moment and have tried to not take life for granted.

In the meantime I am going to continue eating healthy, drop another 10 to 15 lbs, exercise, and take care of myself.  Perhaps the best advice I have gotten is from a friend who advised that the best way I can care for my Uncle now is to care for myself while going through the rest of the process.  Simple advice that sounds so obvious when you think about it, but when in the midst of the forest sometimes you don't see the trees.

As, we say in these parts, "Lord willing and the creek don't rise", I am driving from Southaven, MS (outside Memphis, TN) Wednesday night to Birmingham, AL so I can finish the next round of tests on Thursday; so appreciate everyone's prayers.

[audrey12]

Hi, welcome to the club and bless you for doing what you're doing.

I was 51 when I donated.  I had started regular walking the year before due to a fitness challenge at work, and I regularly walk about 3 miles or so three to four times per week.  I had an extremely positive experience with my donation.  If I didn't have the scars, I wouldn't know the difference between one kidney or two.

I am usually a kind of nervous person and used to have an anxiety disorder.  For some reason, I was not nervous about this.  I can see in your posts some of the (forgive me for not knowing a better term) obsessing about the transplant.  I did obsess but it was about the planning for the time it would take since I traveled from the West coast to the Midwest and took six weeks off work.  I'm usually the one in the family that makes all the travel plans for vacation so this was no different.

I have never had HBP, even at 9 months pregnant, so imagine my surprise when three days pre-op I had HBP at my final checkup.  And it continued afterwards.  Now one of the side effects of donating is an increase in BP, but this was immediate.  It was white-coat syndrome and my transplant team decided it was OK.  I have had borderline HBP for the past four years post-op, but lost 30+ lbs. last summer.  My BP was normal at my checkup in December.  BTW, I was 30 lbs. overweight at the time of the transplant.

I think my best advice is to relax and try not to think about it too much.  Easy for me to say, I know.  But I think you would benefit from some relaxation techniques, breathing, meditating, etc.  You are a superstar and you deserve to be at peace with this.  Keep us informed and if you'd like to talk, message me and I'll give you a call.

[Snoopy]

Hi, SWB.
  Welcome aboard.  Everyone has given you good, sensible advice. I'd only just toss in the following points.
   First, the testing process if often fairly drawn-out, and can be stressful. It definitely was for me, partly due to the difficulty in predicting my schedule, partly because I really wanted to donate.  And that stress, itself, could possibly influence your blood pressure.
   Second, it's great that you're exercising and losing weight.  Just note that exercise can dump protein in your urine, which gets the transplant center's attention.  My trying to be a good boy and exercise, to increase my chances of being approved for donating, did just that, and threw a major monkey-wrench into my process.  I had to do several tests 3-5 times over.  That, itself, didn't help keep my BP low.  On the other hand, the happier part is that for me everything worked out OK.  Based on my experience, I would point out that it's worth repeating tests if they indicate problems.  Obviously, a true issue with your BP, kidneys, etc., must be take very seriously.  But it's also true that weather, hydration status, and exercise can influence the tests.
    Good luck!
    Snoopy

[Fr Pat]

     This may sound like a silly way to make the testing process less stressful, but I'll pass it along anyway: find something in the hospital cafeteria that you REALLY like (chocolate chip cookie? ice cream? whatever) and then promise it to yourself as a treat for the end of each visit (even if it is NOt on your diet.) Knowing that SOMETHING nice will happen to you at the hosptal no matter how many needles they stick you with or how long you have to wait for a test can be surprisingly comforting.
   Fr. Pat

[SWB]

Well, I completed all of the tests last Thursday.  All in all, not too bad but made for a VERY long day.  End result is that I am a very, very good match.  However, there is one obstacle at this point (or I guess two).  They are going to have me do the 24 hour blood pressure test given my family history of hypertension and that I am usually running a bit on the border.  So, I have to drop "10 to 15 lbs more", fax them proof of weight from a healthcare professional, and then they will send me the monitor.  Of course, I have now started exercising like crazy (evening joining a small group exercise program that is lead by a nutrition-savy personal trainer). 

So, it is really a bit of a race against time and circumstances.  Can I lose the weight and will it make any difference to blood pressure and if so hopefully all stays well for my uncle in between.

And, of course I have purchased about every supplement you can think of to lower blood pressure.  Of coruse, the weight loss, exercise, and chilling out to forget the stress would be the most useful advice.  Now, I am looking at meditation as well.

Appreciate all of the feedback.  Looks like I am getting closer to my end goal with only one step that I can hopefully overcome for approval.

Oddly enough though is that I hear different hospitals have drastically different guidelines so I may qualify at another facility.  In the end, I know it is for my own good.  Just have to get that BP down and get to a 25 BMI. 

[Snoopy]

Congratulations on the progress.  And it's great that you're primed to get your BMI down to 25--I only needed to shoot for 30, and that was already a bit of a challenge.  Hang in there! Snoopy

[CK]

At my first post-op visit last week, my blood pressure was high too. I also have a history of "white coat syndrome" and I sat in the waiting room thinking about the irony of the fact that my worrying about my blood pressure being high was going to make it be high!

Sure enough it was 151/75. Pre-donation, I was a 110/60 kind of person.

The doctor said not to worry, they look at it over time. When I went to see my PCP this week, it was 130/80. Better. Then I went to the dentist yesterday and it was 115/75 (I forgot they take my BP at the dentist, so I didn't have time for the white coat syndrome to kick in).

When I was thinking about the risks of donating, I did some searching for the risks of other activities. I found that there is a 1 in 83 chance of dying in a car accident, vs. a 3 in 10,000 chance of dying from donating a kidney. So effectively, I took more risk driving home from the hospital after my tests than donating my kidney.

That helped me to be sure of my decision.

[sherri]

When I was thinking about the risks associated with kidney donation it wasn't the mortality statistics that concerned me because as you said it quoted as 3 in 10,000 assuming that is accurate reporting. What concerned me was the morbidity, the long term health effects, ability to get premium health insurance if let's say my creatinine rose due to the donation, the effects of cardiovascular disease in one kidney patients, the risk to my kidney if I need diagnostic tests with nephrotoxic dyes, taking NSAIDs for pain relief as I age. The evidence out there says that kidney donors have a slightly higher risk for hypertension and proteinuria than the regular population but in general are not at a significant risk than those controls who did not donate. I am still always concerned about my future health and the vulnerability I have now since my donation. But not donating meant my brother would go on dialysis to wait for another suitable donor so the benefits outweighed the risks at the time. I hope they keep studying long term effects on donors and continue to make transplant safe for both donor and recipient.

[Lansdowne11]

I wish I hihad found this site before I donated last week, but better late than never! I had the blood pressure issue when I was being tested, too, and in the end, it turned out to be white coat syndome. I discovered this by having my blood pressure taken by a nurse in the school where I teach. Even when I did the 24-hour blood pressure readings, I was nervous about it, but the nurse at school calmed me before taking my blood pressure. If you have the opportunity to get blood pressure readings in a relaxed atmosphere, that would be best.

The problem I faced before donating was getting very nervous and anxious whenever I had to discuss the possibility of donating. From the beginning of my tests for compatibity to donating on February 8th took a total of eight months, and they were very stressful.

No matter how much you want to save someone's life, do it because you're completely at peace with the idea and at peace with your own physical well being.

Best wishes.