T plus 7 weeks

It dawned on me that in all of my previous posts to my Blog I had not mentioned the medical transplant team at NYU Medical Center. I have to say that my experience was very favorable and I was very pleased with the treatment I received - both pre and post surgery.

My kidney transplant coordinator, Min Zhou, was (and is) very friendly and helpful. To this date she continues to assist me with my requests and for that I am grateful.

My surgeon, Dr. Ahmed Fahmy, is exceptional. From his pre-op guidance, to the compassion and respect shown to my family while I was in recovery, to his post-op care, I am very grateful that Dr. Fahmy was, and is, my doctor.

The post-op staff in the ICU was also exceptional. While I cannot recall all of their names, Christine was one nurse whom my wife and I both remember as being very kind and attentive in the day immediately following my surgery.

To those I have mentioned above, and to all of those who helped me and my family through this procedure.....thank you very much.

T plus 31 days

Thanks to everyone who has read my blog. It's good to know that it has generated some interest. Thanks to Beth and Tom, Jr for posting it on Facebook. I'm hoping that it will encourage some to at least look into the possibility of donating. And it doesn't have to be a kidney.

Bone marrow/stem cell donors are needed - badly. The recent story about the young mother who needed a bone marrow transplant was very disturbing.
It seems that a call went out for possible donors and many people came in to see if they were a match. Four people actually were a match which is highly unusual. Sadly, all four of them backed out and refused to donate! Why would they do that?

Tragically, the mother died leaving behind two young daughters and a husband.

Why the hell would someone volunteer to be tested as a possible match and then, once you were selected, back out? It's not that big of an ordeal to donate bone marrow or blood cells (which is the method used most often now). It's much less invasive and painfull than kidney or liver donation; and only days to recover.

I've been on a Bone Marrow Donor list since 1994 and would do it in a heartbeat if I was a match for someone in need. Come on folks! There are lots of people out there that can use the help.

T plus 21 days

Saw several doctors yesterday at NYU. While they did not openly express any concern over the leg issue and fatigue, they did say they wanted to monitor things well into 2011, and beyond if necessary. Just in case. It's an age thing according to them; they have not had a donor my age, so I'm sort of their test case. More blood work and visits set for December.
Going to continue the heat pad routine, exercise and trying to get my appetite back. I've lost 14 lbs since the surgery. Docs said to eat what I enjoy and not to worry (for the time being) about the healthy (or lack thereof) of what I consume. They weren't too worried about the weight loss..for now.
I saw Toby (recipient) while at NYU. She looked good and said the her new found kidney was doing well. I informed her that I took great pains to prime that sucker before turning it over to her. Toby said that if she starts drinking scotch and telling bad puns (ugh), we'll both know that the kidney that used to reside in Thomas Carr is having a positive effect! Well, the "positive" part is my editorializing.

T plus 17 days

Appetite is about 60% back; but I still feel full quickly and some things don't sit right with me. Fatigue continues albeit at a reduced level. Probably goes hand in hand with the eating. Exercising and heating pad sessions help, so those will continue.
Left side stiffness has eased only slightly. Have a hard time putting on a sock on my left foot. I see the surgeon this coming Wednesday, so I hope that he can shed more light on this and why it has persisted so long after the surgery.

T plus 12 Days

Finally getting some of my appetite back. Fatigue and the sore hip area are still a concern. Now trying heating pad sessions followed by walking in the neighborhood. Feels good to get out once in a while.
My friends on the Living Donor Forum tell me that my many of my "after affects" are somewhat normal; although the hip thing is not normal.

T plus seven days

Just got back from my checkup at NYU and everything appears normal....well, normal is subjective considering whom we're talking about. Doctor says that everything that I'm experiencing is to be expected, especially given my age (nice guy, eh). He said it would take a full month or more before things got back to where they were. Oh well, just have to grin and bear it.
Saw the recipient while at NYU. She was there for her checkup as well. She told me to feel free to tell people who she is; so for now, it's Toby.
Toby looked good...a bit fatigued like me and little appetite. Sounds familiar. She happily announced that she was getting up several times during the night to pee. I never heard someone so glad to be inconvenienced like that.
My next checkup is in two weeks.

T plus 5 days

Still sore where they abused my left hip...lol. Appetite has not returned anywhere near the level pre-surgery. All things in small steps, eh. Getting better each day, but sleep comes at only 2 hr intervals so that sucks. I'm sure that I'll look back on these five days months from now and think that it really was fairly minor compared to positive results of the transplant. I hope...LOL.

It's Done! Surgery is completed and I'm Home! T plus 3 days

Well, the surgery is done and, thus far, all is going according to plan. The recipient's new kidney, my former one, is doing very well. It started to work as soon as they transplanted it. Nice job, kidney!
I'm feeling ok....more sore than I thought I would be; but just knowing what has been done for this lady makes the discomfort worth it.
So, they are telling me that it's a 3-4 week recovery. We'll see. It should get better soon, right now it seems like it could take 3-4 months!
Stay tuned.................

It's Here....at Last!!

Found out yesterday that my lastest (and last) medical tests came out just fine. That means that it's a GO for the transplant surgery tomorrow. Getting a bit anxious....for me and for the recipient. I'm sure that she is on pins and needles. Who can blame her! Stay tuned...I'll try to update this Blog after the surgery and beyond...........................

More Tests!

Just returned from NYU where I and the potential recipient had yet another series of tests performed. They want to make sure that nothing has changed since the last blood work was done. The twelve vials of blood that they sucked out of my arm should tell 'em everything they want to know....and then some!Along w/ an EKG, chest X-ray, blood pressure tests,these were, what we hope, the last bit of probing and prodding they'll have to do until T-day.

I'm "Approved" !

Just heard via email that I have been "passed" by the NYU donor team and was approved to donate one of my kidneys. Nice of 'em eh?

Now the recipient and I have some final pre-surgical tests on the 12th and, assuming no snafus there, it's on to the kidney transplant surgery on October 21st.

Altruistic vs Non-directed

Just joined the Living Donors Online group. One of the donors on that site told me that some folks who have donated to a relative or friend object to the term altruistic when it refers solely to someone in my situation. Please don't shoot the messenger. I had always called my pending donation "non-directed"; however, in conversations with both NYP and NYU, they always used the term "altruistic donor". Being new to this...lol...I went along with the experts.
I can fully appreciate that, those who donated to a recipient whom they knew, would be offended by not also being called altruistic. By any definition, they surely are!
I apologize if my terminology insulted anyone. It certainly was not my intention.

More News....

Just found out that a final "team" meeting and decision won't be made until Oct. 1. Assuming no problems there, I would go to NYU on the 12th for pre-surgical tests and final cross match. They sure don't seem to be in a hurry. Feel sorry for the recipient having to wait through all of this.
Transplant date would now not be before the 21st.

NYU Team Meetings

I met with the rest of the NYU donor transplant team....social worker, nephrologist, surgeon and psychiatrist. All went reasonably well, except for one individual who was hard to read. We'll see how that goes.

The plan now....the "team" will meet in 1-2 weeks and the transplant coordinator will present the team members' findings for review and final decision to: a) go through with the surgery, or, b) get additional information from me or the recipient, or, c) outright deny approval for the transplant. While I don't that (c) is likely, one never knows.

Should all approvals be given, the surgery will take place in October, either the 14h of 21st.

More later............

News Article

Well, another newspaper (Home News Tribune and mycentraljersey.com website) ran a story about my pending donation. I hope that this generates some positive publicity for the Nat'l Kidney Registry; and encourages other to look at donating one of their kidneys. The picture of me was not too flattering, although they seldom are given the subject matter...lol.

Here's a link to the story for anyone interested......

http://eastbrunswick.injersey.com/2010/09/07/east-brunswick-man-donates-a-kidney-in-random-act-of-kindness

NYU Meetings

Meetings with last (hopefully) four doctors set for Sept. 14th. Assuming a positive outcome, a date for the transplant surgery should be discussed among the recipient, surgeon and me. Probably October timeframe. Stay tuned.............

More.....

NYU informed me that the recipient has been notified that there is a match between us. It goes without saying that she was ecstatic. Who wouldn't be? Waiting on my date to see the final docs for formal "clearance".

A Match!

I found out this afternoon that I am a match for the woman mentioned earlier! All systems are go.

Now, just a routine meeting with the surgeon, social worker and psychiatrist at NYU are all that remains. Well, the last person may not be so routine...lol.

Assuming all of that goes well, a date for the transplant will be arranged.

Getting a bit more nervous, but looking forward to being able to help this lady through a very difficult time.

Met Potential Recipient

Last Tuesday I went to NYU for additional blood work. While there, I met the lady who might be the recipient of my kidney. Very nice woman.
Thus far, we are compatible for blood type and antigens. Now we see if, when our bloods are mixed together, whether our antibodies co-exist or fight each other. If the former, then the transplant should go forward; if the latter happens, we will both be very disappointed.

Update

NYU has accepted my medical tests that were performed by doctors at NYP. Next step is for my friend's mother and I to have blood drawn within 24 hrs of each other, and then a lab will run the compatibility tests. Those tests will take about two weeks from what I'm told. Still a long shot, but getting closer.

Inquiry

Received a call from a "friend of a friend" whose mother needs a kidney transplant. Gladly told him that I would submit my medical tests to his mother's hospital (NYU) to see if we're a possible match.

Article

A very nice article was written in the local newspaper, The Sentinel. I'm glad that the hospital wants to generate some positive PR about my situation and I hope that it causes some people to stop and think..."why can't I do that..."

As a result of that story, some folks have emailed me about their personal experiences or just to say some nice things. Thank you all!

No News

Heard from NKR yesterday....still no match. I asked what the "normal" time was to find a match and the reply was....."could be days....could be six months." Hmmm....I thought that there would be recipients-in-waiting. Guess not. At least not any for which my antigens are enough of a match. Nothing to do but wait.

Waiting

It's now July 1, and no word from NYP or NKR. Oh well, they said it could be several weeks before a match could be found. Getting somewhat nervous. Probably normal. I hope.

All tests are done....systems go

Completed my last test...a colonoscopy...this week. Notified NYP Hospital and the National Kidney Register that everything was fine, so I'm going on the "official" donor list at NKR. They said it could be weeks before a match is found. I'm nervous, but also looking forward to helping someone through this a difficult time in their life.

Hospital called and said that I passed all of my tests. Yes! Only one test left.....colonoscopy. Have an appt with a gastro doc next week to setup the test. Should all be done by mid-June. And then...........

Well, my tests in NYC have been scheduled for Monday, May 10th. I'll be there all day for physical tests and a session with, what I believe, is a "shrink". I'll bring along my laptop to update this blog as to how I'm doing.

Where was I......oh, yeah, once my brother had passed his new tests, I was "relegated to the bench". Not that I minded. If it was my wife, I'd want to be the donor for her; so no hard feelings there.

The whole experience had made me more aware of what the kidney transplant process was all about and what it could mean to be a possible donor. Absorbing information online about the donor and recipient and the effects on their lives following transplant, made me want to be a participant in this life-giving progression. The ability to enhance the quality of life of someone while minimally affecting your own life physically is, to me, a wonderful opportunity. And it is one in which I am very anxious, and hopefully able, to participate.

At this point I am enrolled in the Kidney Register. I've submitted my blood tests the results of which have been blessed by their health committee. Presently, I'm waiting to hear from them concerning further tests to be conducted at Cornell Medical center.

Stay tuned.......

I'm back....anyway, after seeing my sister-in-law become more fatigued and somewhat depressed over the course of a year or so, I talked to my brother about donating a kidney for her. What I did not know at that time was that he had already been tested for compatibility....and was rejected because of another, unrelated problem that prevented him from being a donor. It took some time, but I finally convinced both of them to allow me to be tested. I won't go into why they did not want me to go through the tests but suffice to say they relented.

Following a series of examines and blood work, I was informed that I matched on five of six antigens. A blood filtering process, which eliminated the unmatched one, would allow my sister-in-law to use my kidney. Good news! Everyone was delighted....a bit scared, but delighted.

As with any husband, my brother was not comfortable with me being the donor for his wife and not him. With only about 2-3 months before the transplant, I told him not to worry about it as it was something that I wanted to do. He relented.

All the while my brother was dieting and exercising like crazy to get past the reason he was originally "rejected" as a donor. About 5 weeks before the surgery, he was retested. He passed! I was very happy for him...for the both of them.

More later...............

Deciding to Donate

Well, I'm breaking new ground here in two ways. First, I've never blogged before, so this is the first "first". The second, and by far more important "first" is my decision to become a kidney donor at 60 years old.

If all goes well in the coming months, I will become what they call a non-directed donor. As the name implies, this means that I will not know the recipient; and I may never learn his/her identity. But that's okay. That's not why I made this decision. Here is why I did......

Somewhere around 2005/06, my sister-in-law developed kidney failure. The exact disease is not important, but the way it affected her life was. In a short period of time the changes to her physical being were very apparent. It was hard and I can only surmise how tough it was for her and my brother (her husband) and their two children to go thru on a daily basis.

More on this on my next blog.............