Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: Snoopy on July 28, 2011, 06:26:44 PM
-
The testing I completed during my overnight inpatient visit (see my last post) should have marked the end of over a year of medical testing to qualify me to donate. I was very optimistic. I'd lost some weight (I'm now only 2.8 kilo above my target BMI of 30), I'd even returned to the gym, just this week, and I felt very healthy.
And, in fact, most of the tests came out fine. My creatinine was 0.74 mg/dl (normal: 0.67-1.17). My chest X-ray and kidney CT were fine. Heck, even my blood pressure (which had been disappointingly high during my 24-hour Holter testing) performed like a champ!
However, just as I was getting ready for discharge today, I was told I needed some more testing. In each case, these represent totally new problems, suddenly popping up out of the blue in my blood and urine testing. The anomalous test results are as follows:
from the biochemistry section
--Glucose: 131 mg./dl (normal: 70-100)
{all the tests in the general urinalysis, including the glucose U-strip, were normal}
from the urine biochemistry section
--protein-urine 24 hours: 208 mg/24 hours (normal: 0-150)
{the protein-urine sample was 4mg/dl (which seems to be normal, and the creatine urine sample and the creatinine 24-hour sample results are not back from the lab yet}.
from the hematology section
--Red blood counts (RBC): 4.30 M/micl (normal: 4.7-6.1 M/micl)
--Hemoglobin (HB): 13.4 g/dl (normal: 14-18)
--Hematocrit (HCT): 40.0% (normal: 42-52)
The transplant coordinator seems to be worried that I may have diabetes, and told me to repeat the 24-hour urine collection at home (by the way, one on-line site about lab testing said the urine needed to be refrigerated during these 24 hours, but mine wasn't at the hospital. The bottle just stood in the bathroom until it was full, at which point a nurse recorded the measurement, sampled some for analysis, and emptied out the bottle for re-use. Did everybody else keep their samples refrigerated?). She also took a blood test (hemoglobin A1c I think, which can be used to screen for diabetes.)
I'm meeting my primary care doc next week to talk about these results, and to perform some sort of sugar test (at 0 and 2 hours).
Now, all of these numbers have always been normal before. I'm hoping that the protein had something to do with the fact that I eat a lot of tofu (in fact, I had 3 tofu sandwiches, for lunch and dinner, yesterday). The transplant coordinator also asked if I play sports. I told her I just returned to working out at the gym this week. She told me this might release protein from muscles into the urine (or something like that). She also made much of the fact that over 24 hours I produced over 5-1/2 liters of urine. I told her I drank a lot of water. Now, I know that that sounds a little ominous when the subject is diabetes, but I typically drink a lot of water, and have for decades. Also, we're in a heat wave, and the hospital room was poorly cooled. She told me not to drink so much water, and not to exercise (!!!), at least until after the new round of tests.
What do you folks think about all this? I realize we're not mainly a group of docs and nurses, but has anybody had results like this? Can things like this resolve? My family doc is competent and friendly, but has no particular transplant background, so I'm throwing these questions out to you.
Thanks, Snoopy
-
Hi Snoopy,
I am just checking in to see if you had the tests in question redone and of so, how it all turned out for you? I apologize if you posted this elsewhere and I missed it, but I just wanted to check in and see how you are doing.
Linda
-
Hi, Linda.
It was very kind of you to check up on me. Happily, the re-done tests were all normal, including the 24-hour urine collection exam, as were the additional tests ordered for the second go-around, which included a 0/2-hour glucose tolerance test and HbA1c (that last one somehow gives some sort of "glucose history" for the past few months).
Personally, I'm inclined to attribute my original results to my having been scurrying around in a heat wave doing errands over the few days before the tests (alas, I had that exact type of day today, too!), and having just returned to the gym (which can cause protein in the urine).
However, today I visited an "outside" nephrologist, not affiliated with my transplant center. This was mainly to help interpret my labs, just so I really understood what was going on. As I'd posted earlier, I do trust my center, where the staff are competent and warm-hearted. But they are understaffed, and sometimes seem too harried to spend the time I'd like explaining where I stand, and why. I'm no control freak, but I prefer (make that, sort of need) to have a more clear picture than what I'd gotten so far. So I was very happy that he patiently spent a lot of time explaining the science behind the exams, which helped me to keep things straight.
Though he said my "re-done" labs looked fine, he decided to order one more 24-hr. urine collection, mainly to check for protein in the urine. As he explained it, "you had one bad set of results, and one good set: let's break the tie". Fair enough. Hopefully, my good fortune will continue.
By the way, the nephrologist also made a point to look me in the eye and remind me that I had no obligation to donate, I could back out at any time--even at the last moment--if I had any fears deep down, and that nobody had any claim to my kidney (in my case, he knew I'm not donating to a relative or friend). He also gave me his cell phone number and told me I could call him anytime with questions. Although I feel very comfortable with my decision (I had absolutely no pressure to donate from anybody; in fact, it sometimes seems as though I've had to bang on the doors to get the process up and running), I was definitely touched by his concern. I've never met him before, and may never again, but I was impressed.
{One slightly annoying thing about the new urine collection tests: I'll need a referral slip from my regular, "on-plan" doctor to take to the lab. My doc is only available in the afternoon, and the lab (and every other lab in town, I think) closes by mid-morning. So, tomorrow afternoon I'll try to get in to see my doctor to get the referral, and the next morning I'll try to run across town to the lab, to submit the referral form and get the specimen bottles. Then, I'll need to wait till early the following morning to start the collection, and run back across town 24 hours later to submit the specimen for analysis. There goes half my week....Since my transplant center is also not on the same plan as I am, I've had several weeks like this, when they order tests for which my own doc has to issue a referral for my own health plan (by which time the lab has closed, etc.), and each stage is another half-day of taking buses all over town. Still, I have it much easier than all the folks who have to fly cross-country to visit their transplant center! Mine is only 1-2 hours away, by ground transport.}
Anyway, Linda, thanks again for your concern (and sorry my answer was so long). How are you doing, these days?
Be well, Snoopy
-
Hi Snoopy!
I am so very happy to hear that the last set of tests all came back in normal ranges. As much of a pain it will be for you to redo the 24 urine, I think it is a good idea. I am also glad that you went to a nephrologist that is not associated with your transplant center. It is always a good idea to get multiple opinions/views. It is fantastic to know how caring and concerned he was about YOU!! (and for him to give you his cell phone number - wow!!)
I can tell you that in the day of my testing, I had something strange happen with my glucose too. I did the one were you drink the stuff and they take your blood (I think it was 4 times) over the course of 2 hours. One of my levels went up when it should have gone down. However, there was something noted from the lab about it. They had left a tube in my arm to draw blood each time instead of having to stick me every time. They put saline in it after each time to stop it from bleeding. I believe the goofy test result had something to do with the saline getting mixed in. The center had me retake that test back at my own doctors office. (I live about 2 and a half hours from my center.) That test came back fine. My coordinator also had a test run that showed what my glucose was over the past 3 months. ( I apologize but I cannot recall the name of that test but it may be worth asking your coordinator about that one.)
I am doing well - thank you so much for asking! I feel great and feel no different with one kidney that I did with two.I will be going for my 2 year post transplant checkup in October. I can tell you that I can't believe how quickly the time went by. I will be sure to post my test results. My creatinine levels have been 1.1 since my surgery, so I am guessing it will still be somewhere around there. Please keep in touch and let us know how you are doing and how your next 24 urine test goes. I am pulling for you! :)
Linda
-
Hi, Linda. Thank you for the reassuring post; I'm especially happy to hear how well you're doing. This Thursday, I meet the nephrologist at my transplant center. Hopefully, this is one of the last things before setting the surgery date. I'll let you know about the meeting, and about my newest labs, as soon as I can. Meanwhile...
My coordinator also had a test run that showed what my glucose was over the past 3 months. ( I apologize but I cannot recall the name of that test but it may be worth asking your coordinator about that one.)
I think that's the glycated hemoglobin test (HbA1c), which measures a form of hemoglobin as an index of glucose concentration. It's used as an indicator of glucose levels over the past few months. Note: for this test (and for a few others), the units of measure vary across the world. Those of us from outside the U.S. might want to specify units of measures used when posting our lab values. But, regarding the glucose stuff, at least, my numbers are normal now.
Be well, Snoopy
-
Hi Snoopy,
Yes that does sound like the same test. I am glad you already had it and it turned out well. Good luck tomorrow when you meet with your nephrologist. I can't wait to hear how it goes.
Best wishes! :)
Linda
-
Hi, Linda.
Thanks for your e-mail. Unfortunately, the meeting with the nephrologist did not go as I'd hoped.
My creatine (0.69) and GFR (182) are very good. But it turns out that, in the second set of data from the 24-hour urine collection, there's still protein in the urine. On the original 28 July test, it was 208 mg/24 h, and it was up to 228 on the 3 Aug. test (0-150 is normal).
The nephrologist does not like this, and would have been happy to close my file now, if I'd agreed. As she explains it, it's a grey area. Not a textbook contraindication, and not something that spells danger in normal (2-kidney) conditions. And, if I were donating to a child or spouse, etc., she could approve me. But I'm donating to a "stranger" (though we've already met a couple of times, for testing, and we've hit it off very well). Because it's possible that, after donation, my remaining kidney might not be quite as good as normal in picking up the slack, she'd prefer to disqualify me, since she doesn't think one should take such a risk for a stranger (as opposed to a loved one, for whom a donor would often accept more risk).
I did not agree to close the file yet, hoping to get more data. In fact, I mentioned that my own doc just ordered a third 24-hour urine test, which I collected and submitted to the lab just this morning. So, she said that, if this third set is good, then she's ordering two more 24h urine collection tests, to be performed at 2-week intervals. Meanwhile, no gym for a month, in case the protein is caused by my exercise. But, if this third set of data again shows too much protein, she'll want to close my file and disqualify me as a donor (although I think she did say I am free to seek a second opinion).
So, right now I'm praying for protein-less urine results.
Beyond that, it strikes me that she is doing the right thing by protecting my own interests. And I am grateful for that (my wife is even more grateful). However, to me it's at least debatable how much weight to give the difference between a stranger and a loved one, and it's not a purely medical, technical decision. Especially since the actual risk is (probably) not very large or very clear (the nephrologist doesn't think there's any real statistical data on the fate of donors with protein in the urine).
If the new protein value is problematic, when it comes in, I plan to call the nephrologist I saw privately earlier this week, and ask him what he thinks (I didn't know about the second protein value when I saw him). Then, I'll talk with a couple of my doctor friends. When I get their opinions (unless they all tell me that it's nuts even to consider donating), I'll consult with my clergyman.
Meanwhile, though, I'm really, really, really, hoping for no protein in the urine on this new sample.
Be well, Snoopy
-
I had higher levels of albumin and creatinine in some early test. I am a marathon runner and they attributed it to that and dehydration. I am told not to exercise the 48 hours prior to testing. I have been all cleared and it took less than three months. I hope everything turns out ok. I know I was freaking out when my test results came back abnormal. They made it appear that my kidneys were functioning below 75%, but they are actually doing great. Good luck!
Tori (Utah)
-
Hi Snoopy,
I am so, so sorry to hear that this last test did not go as hoped. It will be interesting to see how the third 24 urine test you just took will turn out. I am very glad that they are being so cautious and looking out for you. I do find it very interesting that they give such different consideration for a family member verses a stranger. I am curious if this is just this center or just how common that thought process is among centers/doctors.
Please do update how the third test comes back. I am still pulling for you! :)
All the best!
Linda
-
HI Snoopy,
Regarding the 24 hr urine test. I collected mine at home, and kept it refrigerated, then packed it in an ice chest and drove it about 60 miles to the transport center, where I had additional blood work. I was instructed to avoid heavy exercise 48 hours prior to the test. Heavy exercise, such as weight lifting, can cause some protein to appear in the urine.
Fasting blood sugar and glucose tolerance tests measure what may be insulin resistance, suggest prediabetes.
Fasting blood sugar measures how much glucose is in circulation when you have not been eating. If this is elevated, then you may be "insulin resistant", meaning that your body is not responding to the circulating insulin and not processing glucose which is circulating in your blood stream. This number should be under 100.
For the glucose tolerance test, you will start with a fasting blood sugar, then be given a bottle of very sweet liquid to drink, then be retested usually 2 hours later. This will determine how well you handle a load of sugar.
I appreciate your earlier post...let's not get derailed by a single off lab test.
Good luck to you!!!
Regards,
jatopa
-
Good news!!! My third set of 24hour (urine) protein values are normal!
This last test was 88.8 mg/24 h [normal: 0-150].
My 28 July result was 208, and my 3 August result was 228--which had the nephrologist threatening to disqualify me--so a nice low 88.8 looks mighty good to me right now.
Even my GFR, which was a "too-high" of 182 on 3 August [normal: 71-151] is now only very slightly too high: 142.5 (according to my health plan's "normal range" of 90-139; actually, according to the transplant center, where I'd done the last two sets of tests, the normal is, as noted above, 71-151, so it would have been normal there]
I want to say a special thanks especially to Linda, for all the encouragement during this process. (As somebody wrote recently--"this board rocks!").
Also, thank you Tori, for reminding me that exercise can throw things off. Tori, my normal exercise level is pretty low. I think my handful of days in the gym over the past month or so may have been, for my system, the rough equivalent of your training for a marathon! Anyway, the nephrologist banned me from the gym for a month, to see if my labs stabilize. I confess to enjoying the guilty pleasure of enforced laziness.
As things stand, the nephrologist asked me last week to repeat the urine test another two times, at 2-week intervals, if these values were normal. So, I guess I can look forward to another couple of days of trying to hide a large jug wherever I go. I already got a very funny look from a security guard when I had to open my tote bag before entering a building last week. On top of this, we had a house full of all our kids last week, none of whom know about my little "project".
But I'm not complaining. It's great that I'm still in the running.
Jatopa, thanks for the info. This time, maybe I'll keep the jug in the fridge. I already did the glucose tests, and they're all normal, fortunately.
Be well, Snoopy
-
Glad I could be of help and congratulations.
-
Regarding the 24 hr urine test. I collected mine at home, and kept it refrigerated, then packed it in an ice chest and drove it about 60 miles to the transport center, where I had additional blood work.
Hi Jatopa.
It's a funny thing about chilling the urine sample. My transplant center said to forget about it. And, my health plan's lab, where I just did the third set, said the main thing is to keep it out of direct sunlight. But we don't have air conditioning at home, it's very hot now, and also I lug the jug with me all day through the city on errands (and I don't have a car, so I'm walking in the sun or riding the bus). Based on your post (and the fact that my first two urine tests weren't perfect), I think next time I'll keep the sample in the fridge, when I can. Now, I just have to make sure the kids don't confuse it with apple juice and drink it.
Be well, Snoopy
-
I think it would be real cool to fill up the urine collection bottle with apple juice and when you go back to the hospital for more tests you can drink from it. I was thinking of doing that myself while being tested but did not work up the courage.
-
Hi Snoopy! The latest test results are FANTASTIC! Such great news - I am so, so happy for you!! I will be anxiously waiting to hear the results of the next 2 tests results and hoping and praying they are as great as this last test was. YIPPPPPEE!!!!!!!
As far as keeping the sample in the fridge, I did not do this. My center told me I did not need to do that. However, I have heard of others who were told to do so. I am curious as to why some are told yes, and some are told not to.
Kind of funny story, when I was doing my 24 hour urine test, I was really afraid that I would absentmindedly forget I need to save all urine and just "go". I had most of my tests scheduled to be done in one day, and since my center is 2 and a half hours away, I didn't want to mess this up. So, I kept the jug on top of the toilet seat for 24 hours so that I wouldn't forget. Kind of gross, I know. My kids were like "EWE!!" (they were 21 and 19 at the time and had just come home from college for the summer, so plenty old enough to understand what was going on). It made for a few good laughs though! (and we made sure not to have any guests over that day!)
Best of luck to you on the next 2 test. Please keep us updated.
Best wishes!! :)
Linda
-
Dear Linda,
Yes, it's definitely worth a "Yippee!"--the doc was all set to disqualify me. I keep thinking about Terry, who was disqualified based on a borderline GFR. I suggested he try for a re-test, but I don't think he's been on this board since he posted that message. In my own case, so many "not good" labs were basically normal on re-test.
Anyway, on the strength of this good protein value, I'm requesting that, while I do my next two re-tests--for which we won't have all the results in for almost four weeks--my center continues scheduling the last few steps in my process. I am optimistic that they'll agree. I'm definitely ready to get this done, as I'm about to enter month 14 of this process.
Again, I can't thank you enough for your enthusiastic support. When I got the results, I couldn't wait to tell you. Keep up the good work!
Be well, Snoopy
PS--I got a kick about your story about the specimen jug. In my own case, only my wife knows about this "project", and we've had a house full of kids and relatives. If nothing else, my creative instincts are getting a work-out.
-
I am happy to report that my most recent (#4) 24-hour urine collection tests for protein in the urine are normal. Assuming the results from my final test (#5) come in normal next week, I should be able to set a date for the surgery.
Be well, Snoopy
-
Hi Snoopy,
Whoooo Hoooo! That is such WONDERFUL news!! I was on vacation for 10 days and was not online at all during that time. I was wondering how you are doing, so logging in and seeing your post made my day!
Thank you so much for the update. Please let us know how the final test goes - I will be watching. Hopefully soon, we will be talking about your scheduled surgery date. :)
Best Wishes,
Linda
-
Hi, Linda.
I'm glad you logged on: I was hoping to tell you the good news. You've been a very loyal supporter, and it really made a difference!
Be well, Snoopy
-
Snoopy,
I hope all your remaining tests are A-OK!
Regarding your long post on Aug 18, in which a nephrologist differentiated between donating to a stranger vs. donating to a loved one, I was told the same thing by the Center I applied to. (I was a non-directed donor, and had some small risk factors for my future health.)
The Center Director was a quite thoughtful physician, who had considered and discussed at length the ethics of non-directed donation before starting the do them (the first Center in WA State to do them). His concern was that directed donors get benefit by donating (their loved one gets better before their eyes), while non-directed donors "get no benefit." While I might be acceptable as a directed donor, he told me, the "review committee" rejected me as a non-directed donor, and would not let me proceed with more detailed testing.
I appealed to him and the review committee. My appeal explained that, as a non-directed donor, I too expected to get an intangible benefit: immense satisfaction of helping another human being. (Among other things, I had been a family physician for 30+ years by then -- and that is what I did: assist other people have a better opportunity to live their life more fully. That was my career.) Only I could tell how much "benefit" -- personal satisfaction -- I would receive. And my personal, intangible, benefit may well be more than the benefit some directed donors received after they donated.
The Director, an ethicist on the review committee, and the committee as whole, accepted my response, and let me proceed with testing. :)
Please be concerned about your own health -- and thus the well-being of your wife and family.
But, as well, please also keep the values you have, Snoopy. The world needs more people with your values. :)
Bill
-
Well, I am happy to report that my fifth (and hopefully final!!!) 24-hour urine tests (this set and the previous focused specifically on protein and albumin) have come back normal.
Although I am almost afraid to say it, this may be the last real test of the screening process. My main goal now is to get a date for the surgery.
Bill, thank you for your last post. The more I think about it, the more I marvel at how the ethics board were prepared to deny an MD the right to donate, since there would be no benefit to him. Aside from the fact that they probably should have realized that you are experienced in assessing and weighing medical risks, did it really never occur to them that people might donate primarily for the "good deed"? [Although I have a hard time using the term, it is called "altruistic donation" for a reason]. Since it's considered a heinous act--and is illegal--to pay a donor, just who do they think are donating, beyond close friends and relatives? If they're going to permit some form of non-directed donation, they should grasp that donors might seek intangible "compensation".
Still, I realize they're trying to protect us (and, thanks, Bill, for reminding me to guard my own health). Indeed, the doc who was originally so enthusiastic about terminating my process is precisely the team member I like the most. She's very warm, friendly, and I trust her fully to "watch my back". If I thought that the team members were vultures out to snatch my kidney, despite it being risky for me, I'd not be able to be so brave and virtuous. I'd have to focus on protecting myself--which, in such a case, might require running for the hills! But, with this doc so concerned to protect me, I feel safer pushing ahead. Anyway, the fears she had last month have been put to rest, hopefully, by my last three tests (24-h urine collections tests #3-5, if anybody's keeping score).
Again, I want to thank members of this board, such as Linda, Bill, Sherri, Fr. Pat, and all the others who have patiently answered so many of my questions, offered so much encouragement, and been such loyal supporters.
Also, permit me to repeat a thought I posted last month. Do you remember Terry, the English fellow who was disqualified because of a borderline GFR? I don't think he ever had a re-test, and I think he's not been active on the list. Although I don't know much about GFR tests, I can say that over this summer I've been "threatened" by imperfect blood pressure, glucose, and protein-in-urine lab results. In each case, the problem, thankfully, disappeared on re-test. I would highly recommend that anybody who gets abnormal lab results just take a deep breath and request a re-do. Do not panic, do not get depressed. Recognize that, especially when they test a gazillion things, one or two might well pop up abnormal, with no true problem present. Lab testing is not really as precise a business as we might assume, and the human body is immensely complex--it might be thrown off a bit by passing factors such as climate, stress, what you ate or didn't eat (or drink) that morning, etc. Terry--if you read this, I hope it's not too late to take another crack at it.
But, if there truly is something wrong with one's GFR, creatinine, etc., and it's not safe to donate, then...you did your best, and there are lots of other beautiful ways to help people.
Sorry for the long post.
Be well, Snoopy
-
I also find it interesting that some places are saying the urine needs to be kept chilled and some are saying it doesn't. I was told it did need to be chilled, and had to repeat the test because the first time it appeared that I had "overcollected". I bought one of those styrofoam coolers and filled it with ice. Left it next to the toilet and then toted the collection container in a bag back to the doctor's office since it was close by. I kept the cooler in case I have to do a 24 hour collection in some of my post-donation checks (hopefully I NEVER need it again!) but I am kind of grossed out by thinking about using it for anything else. At the same time, my practical side says it is a cooler...and the urine was in a container and never touched the cooler...and it can be re-used. For now, it is designated as a "special" cooler until I can resolve the issue in my mind! :)
-
Yay Snoopy!!
I am so glad to hear that this last test also went well - such awesome news!!! You sure have been though a lot of ups and downs during this testing, but your persistence seems to have really paid off! I am excited now to possibly be hearing of your surgery date in the near future.
I do remember Terry. I believe he was trying to donate to his brother. I have not seen him on the boards since the low GFR update either and I do wonder how he is doing. I do not recall that he had a second test done. I would agree, that a retest for a less than desirable test result is definitely worth it, especially given everything you have been through. I am hoping Terry is doing well and that his brother is able to get a kidney, whether it comes from Terry or another donor.
You are so very welcome for all of the support - that is what we are all here for and what makes this board so great. There really are so many wonderful and supportive people on this board - you are also one of those people. All of the testing you have gone through to help another human shows what a great person you are! :)
Please do continue to keep us updated. I really look forward to your updates and am so thrilled things have gone so well with your recent tests.
Also, in respsonse to JSTX - I too find it interesting that some places say to definitely chill the urine and others say not to. I am curious if this would alter test results at all. As far as the cooler, I do see your dilema. It should be OK to use for other things, yet the original use would be on the back of my mind as well! LOL
Linda