New Blood Test Results & Doctor Visit

Had another doctor's appointment today, included some new blood test results.  The blood tests actually look better than last time.  That doesn't mean a whole lot, but better than things getting worse.  Here is what we got:

  • Creatinine      3.45
  • GFR                19.97
  • BUN                39
  • Hemoglobin  12.0
  • Hematocrit    35.8

The doctor didn't have a whole to say about the blood test results, again.  But, he did say that the fact that the results are better and things moved a fair bit in the last six weeks shows him that he really doesn't have anything that he can do to control kidney function.  He stressed that he wants us to attend a class on introduction to dialysis.  He doesn't think we'll need dialysis, but at any point my kidney function could drop dramatically and dialysis is needed pretty urgently.  He wants us to be informed about the types of dialysis so we can quickly make a decision, if one is needed.  So, we'll get that set up.

Otherwise, he said to keep moving forward with the transplant process.  He reinforced what we already know, which is to work to find a match as soon as you can so you have someone that is there and ready when the time comes.

One question I get a lot is what my doctor thinks about continuing to train for Ironman races at this stage of kidney disease.  It's a good question.  He says that the workouts will not do any further damage to my kidneys or change the disease's progression.  In his mind if I have the energy to do the race he is fine with me doing it.  He doesn't think there's any way that I'll have the energy to do it, and he may be right, but we'll see..

Go back in six more weeks.

First Potential Donor Doing Match Testing

I'm very fortunate that my sister-in-law, Carla, is determined to donate a kidney.  Her husband, my brother, Todd, received a kidney from Carla's sister's husband so Carla has seen first hand how such an act can benefit someone.  She very much wants to give back and since I am the next in line in our family to need a kidney, she has volunteered to donate to me.  It's difficult to know how to feel about that.  Of course, I am deeply appreciative and thankful for her willingness to donate, but it's also difficult to wrap your head around someone making such a great gesture on my behalf.  One very nice thing is that Carla has been through this and knows what is involved.  No matter what happens, I can never thank Carla for her willingness to get tested and donate if she is a match.

It's interesting, and quite smart, that the Swedish transplant center has a completely separate team for prospective donors.  A prospective donor has to reach out to the transplant center and tell them that they would like to donate to me.  From there a team that is dedicated to working with potential donors will work the potential donor through the process.  My transplant team will not know what is happening with a potential donor, nor will I.  Any information I receive will be through Carla.

Carla has been through the first stage of screening to donate.  She answered a medical history and questionnaire and it seems that she passed it with flying colors.  She is going to undertake the second stage of testing in the next few days.  The second stage is the big one as it is a series of blood and urine tests - and with these tests we will know whether Carla is a match for me or not.  It should be a fairly quick process; we should know whether she is a viable donor, and a match to me, within about a week of her completing her tests.  She can have all of the tests run in her local lab and send the specimens to the local transplant center. 

So, we'll see what happens.

New Blood Test Results & Doctor Visit

I had to get some new lab tests done in advance of my doctor's appointment next week.  No major changes in what came up.  The results are:

  • Creatinine       3.74
  • GFR                17.48
  • BUN                45
  • Hemoglobin   12.2
  • Hematocrit     36.7

The doctor didn't have a whole lot to say about the blood test results.  Reinforced that there is not much he can do at this point to control kidney function.  He put me onto a new blood pressure medication as my pressure has increased slightly.  I have been on no medications and this is a very low dose of a new medication that I haven't been on before.  Otherwise, nothing too major from the appointment - go back in 6 weeks.




An Update from the Transplant Center - that was fast

I had an interesting call with Sahar, our transplant coordinator, today.  I sent her an e-mail with some follow-up information that she had requested and in that message asked her if she could send us a list of the tests and hurdles that are required to get approved for the UNOS list.  We aren't in a huge hurry, but we both wanted to understand what the list looked like. 

Sahar called me back and informed me that she had presented our file to the Surgical Review Board at the hospital this morning and they had approved us for a transplant.  Once we complete the meeting with the surgeon and the cardiac stress test, both scheduled for the 19th of November, all of our tests are complete!  They found nothing in all of the tests done thus far, and given my level of physical activity, they do not expect to find anything in my cardiac stress test.  Assuming that is the result, she plans to put our file before the Medical Review Board on the morning of the 25th and there would be no reason at all for them to not approve the application.  So, barring any major surprises we should be through the process on the 25th and officially on the list.  With that we will begin talking to potential donors.

It seems a little odd that getting through the process was as easy as it was.  We're thankful for it.  It sort of confirms that but for the kidney disease I'm in fairly good health.  For me, it also confirms my belief that a transplant is not something to be scared by or afraid of.  No doubt there are going to be some hurdles to get over, likely a few large ones, but ultimately this is all for my benefit and for a much better quality of life.  Thank goodness the transplant people are here to take care of us and guide us through the process.

Beginning with the Transplant Center

We had our first visit with the transplant team today.  It's definitely the beginning of the transplant process.  They are a well-oiled machine, clearly know what they are doing, and appear that they will take great care of us throughout the process.  It was a pretty long day - arriving about 8:30, in meetings until about 2:00, and then a few tests after that.  A little bit about what we learned and what the process was like:

  • We started the day with a group introduction to the transplant process.  There were four transplant patients and their support people in the group.  All of us were kidneys.  Given our experience with transplants we knew a lot of what they covered, but did learn a few new facts:
    • A cadaver kidney could take up to three months to begin working!  Never knew that.  Hoping to avoid a cadaver kidney, but you never know;
    • The waiting list for a blood type A kidney (my blood type) is about 1.5 years to 2.0 years at this time;
    • They now try to match the expected life of a kidney to the expected length of time the recipient will use a kidney.  They are trying to avoid putting a kidney with a 15 year expected life into a person with an expected 5 year life expectancy.  That helps us a little bit because my expected life expectancy is in the top 10% (longest) and they give some priority to people in that category.  Again, hoping to not have to go this route;

From there we went into a separate room and met with various specialists one-on-one. 

  • Finance - this was very underwhelming.  It's an area that we had a lot of questions, but the woman that briefed us was not good.  We are going to have to do some research here to be sure we are smart.  No doubt Todd & Carla will be a big help here.  Ultimately we know that we are Medicare eligible for three years from the date of the transplant, but we need to dig into what exactly that means.  Disappointed in this meeting;
  • Transplant Nephrologist - this was excellent.  The doctor was great.  You always like it when the doctor says things like "the transplant team is too conservative here" or "we will be flexible depending upon how the patient is doing".  A lot of interesting items out of this session:
    • He expects that I'll only be in the hospital 4 or 5 days.  Catheter for only 3 days, possibly 4, but almost certainly will not go home with one;
    • I inquired about having a kidney removed concurrent with the transplant.  Not going to happen.  He explained why they won't do that.  Their preference is to put the third kidney in and do nothing else.  If there is insufficient room in my abdomen for a third kidney, as determined by the surgeon, then they'll do a nephrectomy weeks-to-months before the transplant;
    • Given my physical condition and the job that I do, I'll likely be out of work six weeks.  Possibly as little as four, unlikely to be more than six.  Can likely begin doing some work from home in the third week.  We'll see how it goes, but good to know that he is saying that he'll be flexible and base things upon how I feel;
    • I should be able to get back to unrestricted workouts after 90 days, depending upon how the incision heals;
    • They are generally advocates of a new anti-rejection medication that is a once-a-month injection rather than twice-a-day oral medication.  It's a relatively new drug, but they believe that it extends the life of the transplanted kidney, particularly since the standard anti-rejection medication causes kidneydamage.  If I were to go on the oral medication they ultimately would not have me on steroids; but, a light steroid if I'm on the new medication.  All good stuff here.  We'll see how it plays out, but I like that they really try to keep the medications to a minimum.
  • Dietician - this one was also underwhelming.  We both had high hopes for this and were eager to meet the dietician, but we got pretty much nothing out of it.  Stacie asked what types of foods were good for someone with bad kidneys because most everything seems bad for them.  The response? "There is no food that will repair the kidney damage".  Stacie confirmed that she knew that, but was looking for ones that were easier on the kidneys - same answer.  I sort of throw my hands up at the nutrition stuff because everything is bad for you.  Too much protein, bad; fruits and vegetables, a lot of potassium that your kidneys cannot process; dairy, lots of phosphorous that your kidneys cannot process.  Pretty frustrating and given the lack of information from the meeting, not the best use of our time;
  • Social worker - we were sort of ambivalent about this meeting.  Given everything we know about kidney transplants we knew most of what she wanted to cover.  The burden of being on anti-rejection meds for the rest of your life, the follow-up immediately after the transplant (doctors visits four days a week for about a month), emotional impact of a transplant, etc.  Nothing overwhelming.

With that we then had to do a few tests.  Blood draws, and a lot of it.  They took, and took, and took blood.  Important stuff I suppose, but they were bleeding me for a while.  With that done our transplant coordinator, Sahar (who was awesome), told us that she had scheduled a few tests for us across the street right then.  Pretty impressive, she scheduled us for a MRI, CT Scan, and chest X-Ray.  So, we went across the street to have those done.  Talk about great service.  The receptionist at the radiologist said that it would take about an hour-and-a-half to do all of the tests.  They had me in and out in 40 minutes!  I never waited for more than two minutes.  I went immediately from the MRI machine to the CT Scan with no waiting and from there to the X-Ray and the technician was waiting for me.  Amazing. 

Next steps?  We were unable to meet with a transplant surgeon so we need to do that.  We also need to have a heart stress test done.  We are going to do both of those on the 19th of this month.  From there I'm not sure what is next, but I know they'll let us know.

It was a good day.  The transplant center was excellent and the process was not overwhelming at all.  I feel good about where we are at and I think the day made Stacie feel a little bit better also - but I am open to being corrected on this point.


Doctor's Visit & New Blood Test Results

Saw the nephrologist today.  The tone of the conversation changed a little bit today.  Until now the discussion has been that I should be in no hurry for the actual transplant and that dialysis is a long ways off and likely a road I will never need to go down.  Today there was a slight shift to it being good that we are starting the process, and while dialysis is still a ways off, he recommends that we attend a seminar on dialysis so we know our options should/when we get there.  Why the shift?  I think he was surprised at the change in blood test results.  The most recent results:

  • Creatinine          3.65
  • GFR                   18.65
  • BUN                       44
  • Hemoglobin        11.8
  • Hematocrit         35.7
  • PTH                       170

Not good changes in that list.  While not spoken, I think my doctor is a bit surprised at the magnitude of the changes the past few months.

I'm fortunate that at this point I am not taking any medication.  We stopped my blood pressure meds three or so months ago.  It sounds as if that may change given these blood tests.  He is considering starting some meds to manage some of the more out of range blood test results.  I go back and see him in 60 days.

Transplant Referral Blood Results

I thought it would be interesting to post, for posterity, what my blood test results were when we were referred over to the transplant team.  I know all of the numbers on the blood test are important, but there are a few that are discussed more than others, so I'll focus on those. 

The blood test that was used as a baseline to refer us to the transplant team was drawn on July 22, 2015.  Some of the relevant results are: 

  • Creatinine           3.44
  • GFR                   20.04
  • BUN                        36
  • Hemoglobin       12.2
  • Hematocrit        36.9
  • PTH                       141

There will be plenty of blood tests coming.  I won't post them all, but at significant milestones it might be interesting to post them.

Referred to the Transplant Team

In the world of kidney disease, 20% kidney function is a significant milestone.  At that point you are deemed to have end-stage renal disease and are eligible to begin the transplant process

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