I don’t want this to turn into a rant – and Lord knows I can rant with the best of them… but, it’s not going to be especially pretty, that’s for sure. I’m not naming any names and I’m not even going to indicate sex. But, I have a story to tell that might help someone in the future.
Late last year (2012) I decided the single most important thing I wanted to do before I turned 60 on August 15th, 2013 when my life was to end was to donate any and all organs that I could possibly donate. So, I began researching it.
I discovered lists on the web of people who were requesting organ donations. I presume these are people that are on some waiting list somewhere, but way down the line. Whether or not they will die before they get an organ, I’m sure some will. I suspect a lot of them will. I thought seriously about contacting one of them by random and going through that process. The other option was going through Midwest Transplant Network (MWTN) here in Kansas City. At least with MWTN, I could be sure that the next available person (whoever that would be) who matched up with me would get the organ and so, ultimately, that’s the route I took.
Let’s back up about 11 years. I also mention this episode in the category called “Health” to the left.
One morning around 6AM in 2002, I started feeling pain in my abdomen. By 9AM, I had to go to the emergency walk-in clinic nearby. They diagnosed me with an appendicitis attack and referred me to a local hospital. I was scheduled for 1PM, so I went home and worked on the computer for a couple hours even though it was miserable. That’s how obsessive I am about work. But, I digress.
About noon, I headed over to the hospital. Within a couple hours they had me under the knife. I had laparoscopic surgery – which means they only make a couple small incisions near the naval and go in from there. The incisions only required a couple stitches, which were the only stitches I’ve had in my entire life.
I stayed overnight in the hospital Monday, but went home Tuesday at noon. And, this is a fact… I was singing in choir practice on Wednesday night. So, the point of this is that it’s the worst physical problem I ever had and it was no big deal at all.
Because of the fact that I knew I wasn’t going to be alive more than 7-8 more months and because I remembered my only other laparoscopic surgery to be relatively painless, I decided that the gift of life to someone was something I simply could not ignore.
Whether or not my donating a kidney will actually save a life is sort of subjective. At least it’s a little subjective if you go through channels and the next person on the list gets the transplant. If that person doesn’t get it from you, then they will get it from someone else. So, technically, it probably didn’t save their life. However, by donating, it moves everyone forward one slot. And, that means somewhere down the line, it very likely does save someone’s life – even if it isn’t the person that received your kidney.
Frankly, I didn’t care who it was that received the organ and I didn’t care if they knew who I was. None of that mattered to me. Consequently, I had no requirements or restrictions about proceeding forward – only that the sooner it was done, the better. My original hope was that it could be done by the end of March.
I’ve mentioned kidney, but of course, they can also take part of the liver. They can even take one of the two lungs. In all cases, the original donor can continue to live normally. Personally, I would have been happy to have one kidney and part of a liver taken, but MWTN doesn't deal with livers for what reason I don't know.
So, I contacted MWTN in early January to start the process. That was a mistake. In retrospect, I should have either gone to someone that I knew needed it and who had a personal urgency or I should have contacted a transplant hospital directly – such as the University of Kansas Medical Center which likely would have saved some steps of bureaucracy.
I’m writing this so that just in case anyone out there decides to become a living donor, you can learn from my experience. Again, I’m not going to name names because this isn’t about anyone’s personal accountability. It’s about the system as much as anything else.
In theory, there would be no problem whatsoever with accomplishing what I wanted to do in the amount of time I planned for it. It could almost certainly have been done in four months or less. I pretty much assumed that to be true from the beginning and it's why I was starting the process in early January.
By now, you have probably figured out that I did not donate a kidney – and for that, I’m deeply sorry. Outside of my two failed marriages that were my fault, it’s probably the single most disappointing thing that has ever happened in my life. The difference is that in this case, it was not my fault.
I did everything humanly possible to make this happen short of walking into a transplant surgeon’s office, taking out a knife, slicing open my gut, reaching in, yanking out a kidney and slapping it on his desk.
For whatever reason(s) the entire process moved at a snail’s pace, even though according to the MWTN web-site (and confirmed by MWTN staff) anyone making an organ donation must be no older than 60. Since my birthday is August 15th and I turn 60, that alone should have moved the process along more quickly.
I started the process with a phone call and then got some literature in the mail. I immediately re-contacted the person and asked about the next step. Anyway, it seemed like each step took much longer than necessary. Even though that’s true, I eventually had a meeting with two people at MWTN on February 20th which went very well. The initial meeting was to make sure that I understood what the process of donating really meant, to answer questions, to evaluate my mental well-being, etc. Even though it took awhile to get to that meeting stage, it was still six months until my 60th birthday.
One of the things they wanted to be sure about was that I wasn’t under some kind of stress in my life such that surgery might create health problems with me – presumably with the heart. And, they also wanted to make sure that I wouldn’t be hurt financially and that my family wouldn’t be put in a position where they were unable to depend upon me.
I made sure they understood that I lived alone, didn’t have financial problems, didn’t have an iota of stress in my life because I was retired and that they probably weren’t going to find anyone who had less of an issue with those three areas than me.
They had required that I have someone who would be a person that could take care of me after I went home from the hospital if necessary. Like I said before, I had my appendix out on a Tuesday afternoon and I was singing in choir Wednesday night. So, I wasn’t concerned about needing anyone’s help. Nevertheless, they were adamant about it and so I asked someone to be that person and that person agreed. I didn’t tell anyone else about it and would not have told anyone unless I had to.
The reason is obvious. Look at all the time this person has spent in conversations with me about it. If they didn’t know about it in the first place, the time would never have been wasted. So, I only discussed it with one person and that person agreed to watch over me after I left the hospital.
As I say, the meeting with MWTN in late February went very well. I enjoyed it and I think they did to. I filled out some paperwork. The one issue that seemed to be problematic was that I did not have health insurance - had not had it since it ran out after I left the Kansas City Star nearly a year earlier. Since I’m never sick and there was nothing wrong with me as far as I was concerned, I had thought I would wait until the national health insurance issue was settled before I decided what to do, but even then I wasn't going be alive beyond August 15, 2013 anyway - so why waste money on health insurance?
To clarify, the insurance company for the person receiving the organ covers all costs for the transplant. However, they (MWTN and probably KU Med) want the donor to have insurance as well just in case there are issues that come up later that perhaps are arguably not related to the surgery. In the worst case, the donor’s insurance would cover it. I get all that and indicated I would obtain insurance the moment I was approved.
The other thing that came up in the meeting was that I would need a blood test to determine lots of things. I had taken blood tests the year before (2012) and I knew I had those results at home. So, when I went home that day after the meeting on February 20th, I immediately emailed them the results. The main thing they were looking at were the results for BUN (14, ideal is 6-24), Ceatinine, Serum (.96, ideal is .76-1.27) and BUN/Creatinine Ratio (15, ideal is 9-20). No problems.
In addition, I reiterated in that email on February 20th that I would be willing to get insurance within 24 hours if that is what was required.
They mentioned in the meeting that the longest delay in the process would be getting my situation approved by some "board" that evaluates and approves donors. I also got the impression that it is very unusual, if not rare, for a living person to donate an organ to someone who is not a friend or family member.
This process took forever. I would periodically email them asking what was the latest and so forth. Although I was never critical and I was always polite (unfortunately, not normally my best quality), I made sure to add a sense of urgency to every communication.
I believe this approval "board" meets irregularly, if at all. So, getting to them and getting their approval is a time-consuming process. If a specific person’s life was on the line, I’m sure it could be done quickly. Apparently because nobody specifically was in danger of dying, it drug on and on and on.
Finally, they decided they had enough approvals to move forward. On May 10th, I received this word… “I have everything I need to refer you to a transplant center for their workup!” I was finally scheduled to get a blood test at MWTN on May 22nd - which was just under three months from my birthday.
Since early in 2013 in preparation for this donation, I had lost 25 pounds (peaking at 27) – from 190 to 165 – which is pretty ideal for 5’7” – especially for being 59 years old. I had also been doing more exercising and I had mostly cut out any sweets as the worst numbers for my 2012 blood tests had been related to glucose and cholesterol levels even though they were within the ideal range, just a little high.
I was confident that all of the typical things they look for in blood tests would be way below the high end of ideal. As it turns out from the blood results in late May, two of them (I believe I’m right about that) were slightly above “ideal”. There is just no way that’s possible in my opinion barring something odd. Even so, I didn’t know these results for over a month - late June!
Finally I was contacted by someone from KU Medical Center in late June. We discussed the insurance issue and I reiterated I would get insurance the next day once I realized that it was going to happen. This was when I heard that I had a couple things about my blood count that were too high. I explained that I had lost 25 pounds and had been working out and hadn’t had much in the way of sweets for months. So, we discussed what could have caused these counts to be high.
Keep in mind that even though a couple things were a little high, they were not saying they wouldn’t perform the transplant. In fact, they seemed very interested. The person at KU Med brought up fasting as a potential issue that had to do with the blood count and whether I had been fasting. I’m treading on thin ice here because I’m not a medical doctor – I just play one on TV.
I explained that I eat one meal a day and that’s all. However, before I go out in public, I usually have a fruit slush and there is some sugar in it because I also mix a non diet uncola with the fruit juice, banana and ice. I also swallow about five altoids and stick a couple others in my mouth. I hadn’t eaten in roughly 18 hours at the time I got my blood taken. The person seemed to think all of that could have been the reason for a couple high blood counts.
In any event, as I was positive my numbers would be better in 2013 than 2012 – and they were all within the ideal range even in 2012… I was sure that another test (assuming I was told what to do and what not to do ahead of time) would yield very good results.
So, the blood test and insurance issues should not have been a problem. On July 2nd, I was called by a second person from KU Medical Center.
Let me back up again.
When I first discussed the hospital with MWTN, there was an opportunity to indicate a preference on which hospital I wanted to go to. I didn’t really care except that I believe there were three choices and the other two were on the Missouri side. Since I live in Kansas and since I am a KU fan, I naturally preferred KU Medical Center. I figured even if the doctors couldn’t tell a scalpel from a needle, they could at least play basketball for my entertainment. Seriously… I made sure they knew that I just wanted to go to whichever hospital was faster.
In retrospect, I think if I had emphasized KU and stuck with it, it might have helped speed it along. Even more true, if I had bypassed MWTN altogether and simply gone to KU Med, the process would have almost certainly been much faster. The reason I say that is because each hospital has its own waiting list (I believe) and so to determine if there is a match for me, MWTN has to check with all the hospitals and see who has been on the list the longest. I believe it was just coincidence that KU Medical Center was next in line with a match.
When I spoke with the person in late June from KU Med, they indicated the recipient I matched with already had a family member who was going to donate. They also indicated they were not the next in line after that, but were the next in line after that. So, there was another hospital that was next in line, but the person at KU Med did not say which hospital.
Shortly after that I was called by MWTN and asked if I wanted to make KU my sole preference because if I did, then they could skip over the next hospital in line city-wide and go directly to the next person in line at KU Med. The contact at KU had already told me they were interested in me for that person. I stated that I would be happy to make KU Med my only preference if that would speed it up.
I’m writing this on July 2nd. It was just an hour ago (I type pretty fast - almost unbelievably fast, but I've had practice!) that I was called by another person at KU Med that I had not talked to before. They indicated that under normal conditions from the time this phone call would take place to the time of the surgery would probably be at least three months. Grrrrrrrrrrrr.
Well, I only have month and a half left before I turned 60. That isn’t going to cut it. I asked what was involved and was told that I would need a colonoscopy, which I have never had, as well as another blood test, as well as a stress test. It’s not that I have a problem with any of those things and am confident they would all have given the green light. The problem was the time frame.
If I knew for a fact that it could be done by August 20th or 25th, I might have seriously considered pushing back my August 15th deathline, but three months from now is October. Besides, I just know – even though the KU people have been very active since I first heard from them and they understand my own personal deadline… I just know that it would drag on. And, even if I was ultimately approved, it would almost certainly be October. Maybe even later.
Anyway, I told the person I would call them the next day (tomorrow) and let them know my decision, but I think I decided within five seconds of hanging up. So, I created this file and started typing.
The fact that I initially contacted MWTN in January and even though it wasn’t until February 20th that I had a meeting with them… the fact that it took until June 28th to hear from KU is the problem. That’s over four months to simply go from MWTN to KU. It seems inconceivable to me that it could take that long.
The KU people were very apologetic, though I don’t know how much of this is their fault. I understand there was a problem in that a person who handled this kind of thing was no longer at KU and the MWTN person didn’t know they were gone and so forth. But, my contention is…
…there was no sense of urgency.
You would think that since this is dealing with people’s lives with a life-expectancy clock ticking loudly, “urgency” would be the one thing that was, at all times, driving the process. When someone walks in offering to donate a kidney when there aren’t nearly enough donors for all the people needing organs, the one thing that would happen would be that they put it on fast track to save a life whether the donor was nearing the age deadline or not.
Let me make sure to be clear. I believe that everyone involved and everyone I talked to at MWTN and certainly at KU Med were not only professional and friendly, but probably pretty good at their jobs. I may be wrong, but I think the big problem here was that anonymous living donors are relatively rare and the system just isn’t prepared to handle it.
I don’t know if my age was something that slowed down the process or the fact that I did not have insurance. I made it clear from the time I was asked that I would get insurance immediately upon knowing if I qualified. I can’t do anything about my age, but I was still within their age range, so that shouldn’t have been an issue - and they never indicated it was.
For whatever reason February 20th to June 28th seemed to take forever. I hate to put it this way, but some nameless, faceless person out there that needs a kidney is likely going to die because my donation didn’t reduce the waiting list by one.
Finally, I want to reiterate how disappointing this is. I’m sick about it. I have spent six months doing everything I can possibly do to save a life. My legacy in life is what it is, but to be able to add saving a life to it would have been an incredible feeling. So, I’m sorry about that and I almost feel guilty for having the August 15th deadline – if for no other reason than I might have been able to be approved and donate a kidney by October or some future date.
But, the fact is that the date is set in stone because I will not be around after August 15th. I made a decision. I will often take a little more time than someone else to make a decision because I’m extremely analytical and I want to weigh all the options. Besides, I’m not impulsive and I hate making wrong decisions. So, when I decided my 60th birthday was the deadline – which was also consistent with the maximum age for a donor, I never reconsidered it and made my plans accordingly.
I’m going out and getting a gallon of chocolate swirl ice cream and eating myself into oblivion!
EDIT: On July 3rd, I called KU Med back and indicated that if it took at least three months from this date, I could not donate the kidney and the reason was because my deadline of August 15th was due to the fact that I would not be around after that. They almost certainly assumed I meant I was moving... but I literally meant "I would not be around."
EDIT: On July 22nd, I heard from one of the people at Midwest Transplant Networks who was very apologetic, but indicated this process could take "6-12" months. For one thing, nobody ever told me "6-12" months until that very moment. Secondly, that isn't a justification for the snail's pace, but rather an indictment. If someone wants to donate a kidney to save a life and the process takes 6-12 months, whether they are told that or not, something is broken. It should be able to be done in 1-2 months in my somewhat uneducated opinion. There are a hundred things that could happen in 6-12 months that could ultimately cause the person to not be able to follow through on a donation - not the least of which is their own death.
EDIT: On July 23rd, I called one of the individuals at KU Med and indicated that I had put together some thoughts about the process and that IMO, it needed to be fixed. I sent this write-up to them - obviously, without any references to August 15th being the end of my life.
EDIT: On August 1st, I got the idea of putting into place a plan whereby the moment I die a number of things would happen. So, I intend to send emails to everyone involved on the 14th of August telling them I have something urgent to say on the morning of August 15th. It took a great deal of work via trial and error, but I figured out how to send delay emails via Google Mail.
Within minutes of the time I expect to end my life, I plan on emails arriving at all of these people's computers telling them what I did, where my body is and begging them to harvest my organs since they have the information they needed. Keep in mind, the issues related to colonoscopy or blood levels or stress tests are for MY benefit - to make sure I'm healthy enough to endure the surgery. Once I'm dead, who cares? I've researched the amount of time that specific organs will stay healthy for donation after death and there should be plenty of time to make it happen. In my suicide letter that I am leaving with my body - which is on the property of the Overland Park police station and barely a block from St. Luke's Medical Center, I also beg them to contact the people involved at MWTN and KU Med and to be as cooperative as humanly possible so that my organs could be donated to save one or more lives.
I've left my sister in Topeka in charge of dealing with the relatively few remaining issues after my death. Obviously, I'm not going to tell her that I plan to commit suicide and I wasn't even going to tell her about my failed attempt at a donation. But, then I decided her knowing this story would mean it would be fresh on her mind. When she gets my email just after 5AM on August 15th - the time of my death if everything went right - I will emphasize how urgent it is that she contact the people at MWTN and KU Med and that she put pressure on the police to avoid any delays.
Maybe by some miracle what I was unable to accomplish in life, I might be able to accomplish in death. And, if this plan fails, I hope someone will get to the bottom of it to find out why. And, if the reason is because of more bureaucracy or red tape or foot dragging or whatever, I hope the process gets scrutinized such that it won't happen with the next Martin Manley.