December 18, 2015:
Hi everyone, It has been about 6 weeks since my last update, and a number of folks have been reaching out, asking for an updated status on my medical journey.
My excuse for not updating you all sooner was the hope to be able to talk about outcomes/results, but, as it has turned out, I am still talking about process, although things are progressing.
Before I get to that, however, I want to start with wishing you a fabulous Christmas, Chanukah, or whatever your belief is. As we read and hear about all the troubles, hatred and misfortunes in the world around us, the Holiday season is a great time to reflect on all the blessings we have in life – friends, family, freedom, opportunity, health and many other aspects of our life that we tend to overlook.
Then enters New Years, and the inevitable resolutions to improve ourselves and the world around us.
I strongly suggest that the many of you that are like me – think I am healthy because I don't feel anything significantly wrong – go get a complete physical examination.
If I had done this, the true consequences of the prostrate condition that caused the demise of my kidney (or kidneys, had I had two), which was well known by my then GP, would have very likely been recognized by a second opinion, and remedied before the consequences I now have to deal with.
The other area I would suggest you consider in your New Year’s resolution is what you can (and should) do for the world. You all are talented, skilled, and have more time available than you probably acknowledge. Take some of that time, and get actively involved in something that you like and are reasonably good at, and use it to improve the situations of others. They will surely appreciate it, and you will feel even better about the effort. Give it a real serious try in 2016 – I will be in there with you – promise.
Now to my situation.
It has been a month or so of much activity and promise, and similar amounts of frustration and patience testing. I have had to work pretty hard on myself to keep myself going emotionally, given all the speed bumps involved.
So let's start with the good:
First, from an outward physical perspective, I am in good shape. I sleep a lot, get cold very easily, have lots of leg cramps at night, but otherwise the symptoms have stayed stable and very manageable. I am on a no alcohol, no red meat, low salt and low potassium (potassium is in about everything you might like) diet. This has caused me to get to a weight that I have desired for many years. One of my resolutions for 2016 is to work out more to strengthen things up some more.
Second, this journey has been the catalyst to either re-engage with many friends from the past, or engage with a new group of great folks I have encountered in the journey, whether they be potential donors, people who have various experiences with kidney issues, people who have heard about the situation, and want to interact to a greater degree, people who pray for you, and people that offer to give you a kidney (i.e., a new life). Face to face, via meals, calls, e-mails and texts, the higher level of people interactions, well wishes, ideas, prayers, etc. has been very uplifting (and probably a difference maker in dealing with all the speed bumps).
Third, there is progress to be reported – quite slow and frustrating by my standards, but rocket speed by those in the kidney transplant industry (something that needs amending as we all progress). I have a compatible donor that has gone thru all the testing stages at Mayo, and, just as we thought we were going to schedule the surgery for mid-December, he was deferred until he can get his blood pressure down to what they consider appropriate (we don't want any donor consequences).
Another potential donor has finally been scheduled, and is at Mayo this week going through what we hope would be his final screening. He is also anxious to speed the entire process up. Verbally, he has been told he is medical and emotional qualified to be a donor - we are awaiting the official sign-off.
I went to Johns Hopkins a couple of weeks ago to get myself qualified there also (it is common to be "listed" at more than one institution in kidney transplants). Once I receive formal approval (likely next week), there is another compatible donor that would like to be screened there.
Two other folks with O blood types, both Notre Dame affiliated, have raised their hands in the past two weeks to consider donation, so the probabilities are there, but the "before the end of the year preemptive transplant" is not there).
On the negatives, my blood test numbers continue to be lousy. The last reading I got indicated that my kidney is operating at 8% effectiveness, and continues to decline. The good news is that the rate of decline has slowed enough to likely keep me off dialysis for a couple more months, so the preemptive transplant is still in the offing.
The second negative is the emotional toll via the ups and downs of this process – it may be the optimist in me, but you often hear something promising and meaningful, only to later find out there were not enough details provided, or some other factor came into play.
This is one of the many ways my life partner, Grace, has been such a source of strength and mental stability. This would be immeasurably more difficult without someone like her to navigate the speed bumps with.
Overall, I am optimistic the next update on my situation might even have some conclusions within – things are generally moving in the right direction.
One other thing I would like you to consider – an amazing number of folks offered to be tested as a donor to me. Many of those were unable to go forward due to blood matching incompatibility. Two folks, however, indicated they were going forward, whether it is for me or for someone else. Take another look at the blog, particularly the section on donors (which we will continually keep updating).
The surgery to be a donor is pretty straightforward (I essentially had it in 1982), and the difference between functionality on one kidney or two has been indistinguishable for me, or for the donors I have spoken to.
There are wonderful people out there whose lives have been pirated by kidney failure, and their life expectancy has been significantly shortened. Kidney donation is the only gift of oneself that has so much of a lesser consequence to the donor in comparison to the benefit of the recipient, and can be seen almost instantly. You can actually witness yourself giving someone a second life – it is pretty amazing.
If being a live donor is out for you, then get yourself registered as a donor upon death, for more than just your kidneys.
If you would like to know how to go about it, or would even want to meet any prospective beneficiaries/recipients, let me know – I will get on it right away.
Thanks for considering that request, thanks for your interest, well wishes, and prayers (please keep them all coming), hug everyone reasonable during the Holidays and appreciate them, keep your New Year’s resolution to get a complete physical, and help others.
November 2, 2015:
It has been about a month since I last updated folks, via email, as to how I am progressing.
First of all, it is really encouraging to hear from you with well wishes, prayers, and questions about updates - I can't tell you how much I appreciate it, and continue to need it.
As for a status update, my blood tests continue to deteriorate, with the one kidney operating at about 10% functionality now. The side effects of this continue to be increased drowsiness, forgetfulness, chills, swollen ankles and some other less bothersome symptoms. My biggest dietary issues now are with salt, beef and potassium (which is in a surprising number of various foods). As a result of this, plus a serious effort to lose weight, I am down about 20 or so pounds, which is a good thing.
All in all, I am about the same in terms of functionality, which is fabulous. My transplant mentor, however, tells me that I will feel immensely better after the surgery - that would be awesome.
A number of heroes have raised their hands to be tested as a donor - I haven't asked any of them for permission to share their names, so I will refrain, but they are true life savers.
Scheduling at Mayo, however, has been slower than I had previously expected - the first potential donor to be physically tested was unable to get an appointment until Thanksgiving week, so the rest of the process may well be similarly backed up. That means I have to try to stay off dialysis a fair amount longer than I had previously thought. I hope it works out, because the surgery necessary for home dialysis is very risky in my case due to the mesh I have in the left side of my abdominal area.
Just to reiterate, I would need a blood type O (positive or negative) for the best result, and everyone in the family is an A or AB, so I need a nonlineal donor.
I must say that when you get married, the vow is for better, for worse, in sickness and in health. In so many marriages, that does not stand the test of reality. I am extremely fortunate to be married to Grace, a person that exemplifies every word and inference of those vows. Thank God for such a wonderful person.
I also covet your prayers, well wishes and inquiries.
October 18, 2015:
As a brief update, I have received my official acceptability letter for a preemptive kidney transplant at Mayo. My nephrologist (kidney doctor) says I have 3 months, at most, before dialysis would be mandatory.
Mayo says they can qualify active, living donors quickly enough, if the donor's schedule permits, before that dialysis deadline. The surgeon that prepares the body for dialysis has acquiesced, and said he would try to do the insertion for peritoneal (home) dialysis, but is highly doubtful it will work due to the scar tissue I have in my abdomen from previous surgeries. That would necessitate an operation for hemodialysis, with a 6 week lead time necessary for that.
I feel about the same, with a number of livable side effects from the kidney now being down to about 10% functionality.
Obviously, time is of the essence.
I really feel the prayers and well wishes - please keep them coming.
Thanks a lot
September 28, 2015:
As a bit of background, I lost a kidney to cancer in 1982, and, other than complications for the type of surgery they did in those days, had no complications or function reduction issues until early this year.
After some years of misdiagnosis of the effects of a very enlarged prostrate gland, my other kidney was severely damaged by a bladder back up stemming from the constrictions arising from the enlarged prostrate.
I had prostrate reduction surgery in Jan 2015, which was successful in its own right, but the kidney did not recover, and has been slowly dying (works at about 10 - 15% capacity right now).
St Joe's, which it turns out, does not do a lot of kidney transplants, relegated me to dialysis, which is complicated by the original kidney surgery and subsequent hernias from the magnitude of the original kidney removal procedure, so the dialysis route gets pretty complicated.
Through some friends' intervention, Grace and I went to the Mayo Clinic in Rochester, Minn last week for testing to see if I qualified for a kidney transplant.
I am delighted to say that I passed the tests to be eligible for a kidney transplant with flying colors.
The team at the Mayo Clinic strongly recommended getting what they call a preemptive transplant before I have to go on dialysis, which is likely to start within the next two months.
I am in search of viable candidates to become a living kidney donor, so I am putting the word out (as well as asking for continued prayers and support).
If anyone would be interested in looking into the concept of being a living donor, or knows of such a person, I would be eternally grateful!!!!! The waiting list for deceased donors is about 5 years, which is a lot of dialysis and risk of further deterioration due to the inefficiencies of dialysis.
To begin the process of being considered as a donor, one would call the Mayo Clinic Living Donor Information line at 866-227-1569.
They will ask you (or whomever) some informational questions, and then refer you to a transplant nurse who will ask you a series of medical questions (health, diabetes, hepatitis, previous operations, etc.). Presuming there are no complications arising from that conversation, they will send you a blood, and perhaps a urine testing kit that would be fulfilled locally (at a Quest center, or the like).
This would then be sent by the testing center directly to Mayo, where they would analyze it for compatibility, not just for Type O, which is my blood type, but for a variety of other compatibility factors.
Assuming all that is positive, they would ask you to come to either Phoenix, Jacksonville or Minneapolis (not sure which) for you to take what amounts to a complete physical exam to determine if the candidate is suitable to be a donor.
As I understand, all the medical costs, other than the initial blood test, are covered by my insurance. By law, I am not allowed to pay, in any way, for a kidney. However, I am allowed to reimburse all out of pocket costs, including travel, lost wages while being tested or doing the transplant operation, which I would, of course do.
Please let me know if this is enough for you to go on, please keep me posted on how things are going, and I can't thank you enough for this gift of life any of these folks might be considering.
BTW - I can put anyone in touch with other kidney donors so that those persons can have the benefit of their predecessors' experiences.
September 15, 2015:
I have been getting quite a few questions as to how my medical issues are progressing. First of all, thank you for having such interests, for the prayers, well wishes and suggestions, and I apologize for not updating you sooner but I like conclusions, and I haven't encountered any yet.
As a point of reference, early in the year I was diagnosed with such an enlarged prostate that it was affecting the one kidney I have had for the last 30+ years (the other having been lost to cancer in 1982). The prostate was reduced by surgery, but the remaining kidney was damaged. For the past 6 months or so the kidney has functioned pretty well, even though it was operating at less than 20% of normal capacity.
About 45 days ago, the kidney function worsened so that now it is operating at slightly over 10% capacity, and that is leading to side effects such as swollen ankles, some drowsiness, and a few other inconveniences that are gradually increasing.
I have been treated by a couple of Nephrologists (kidney doctors), and their estimate is that I will need to begin dialysis in about 2 months.
There are two primary types of dialysis, hemodialysis which is normally done in a center every other day for about 4 hours per visit, and peritoneal dialysis, which is done at home, either all night every night, or about 45 minutes every 6 hours. Both types of dialysis will require a surgery to get me properly prepared to begin the dialysis. I have not yet seen the doctor that would put the abdominal port in for the peritoneal approach, but I have been told that the scar tissue I have from my previous abdominal operations may make this approach unfeasible. I sure hope not. (If you have ever been to a dialysis center, you will understand why.)
In addition, any of these treatments also call for drastic lifestyle changes, including strict diet regimens, effectively being tethered to a machine, thus making travel and other normal aspects of my life pretty darned difficult, etc.
A much better alternative is a kidney transplant. I have recently been spending a great deal of time pursuing this. It also is a long, arduous journey but I have met some fabulous folks that have been through it in circumstances similar to mine, and they are providing Grace and I a great deal of guidance. The wait list for a deceased kidney donor is a minimum of 5 years, but more realistically between 8 -10 years. Due to my age, the chance of my ever receiving a deceased donor kidney is highly unlikely. However, since I am in quite good health, aside from my kidney disease, my chances of receiving a successful transplant are much more likely if I receive an organ from a living donor.
I am hoping for a living donor for a number of reasons - the biggest ones are elimination of the waiting list problem, kidneys from living donors last about twice as long as kidneys from deceased donors, and longevity of a transplanted person is about twice that of a dialysis patient.
I am expecting to go to the Mayo Clinic in the near future to be screened to make sure I physically qualify for a transplant (things like heart problems, diabetes and other conditions that I don't have would eliminate the possibility of transplant). Potential donors would go through similar screening tests (paid by Medicare for both parties) to determine the appropriateness for such an undertaking.
As you know, I have had only one kidney for 33 years now, with no adverse effects until the prostrate issue, which likely would have affected both kidneys if I still had two.
Being an organ donor is an incredible gift, and I would never want to underestimate that. On the other hand, it is not as daunting a surgery as one might presume, with the surgery being done laparoscopically, donors usually only require a 2-3 day stay in the hospital. If you know of anyone who might be interested in more detail on being a living kidney donor, I would be glad to provide it, or lead you to sources that can bring you up to speed on the process, the difficulties, risks, etc. I also have contact information for two local individuals who have recently donated a kidney who would be happy to share their experience.
Again, thank you for your prayers, support and concern. Grace and I are very grateful!!!!
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