|
Post by Don Clark on Jan 21, 2014 15:45:56 GMT -5
OK.....here is the update from the most recent Dr. visit. Not quite what I was anticipating, but I will be content with and appreciate the smallest amounts of progress. The only significant thing to report is that I am now officially "listed" for transplant. I know some of you thought I already was, but now I am. However.....of the three levels of need - 1A, 1B, and 2 - I am currently classified a 2 and at the bottom of the ladder relative to need. Levels 1A and 1B have acute needs and have a higher priority. So when a donor heart becomes available, they get first consideration. If there are none that match a donor heart that becomes available, it is offered outside the region within a 600 mile radius. If still no match, I might have a shot at it.
So this could take a while. Supply and demand play a large part. One of two situations has to play out in order for my transplant to happen. Either the specific circumstances I just outlined for a heart to make it past the other needs and become a possibility for me have to fall into place OR my condition has to decline to the point that I'm sick enough for the doctors to elevate my status to a 1A or 1B. Obviously the first scenario is the preferable one.....and if you're going to focus your prayers or intentions specifically, that is where to go. It might happen infrequently, but it can.
In the meantime, we can keep doin' what we're doin'. I'll keep everyone current, take care of myself best I can, and hopefully will have plenty of days that I feel good enough to begin working on my second solo fingerstyle guitar CD project. More on that later.
Now I need to get ready to head out to more Bluejay basketball.....the beginning rounds of the annual league tournament.
|
|
|
Post by dradtke on Jan 21, 2014 16:14:14 GMT -5
Thanks for keeping us up to date, Don. Best to you.
|
|
|
Post by Village Idiot on Jan 21, 2014 20:53:16 GMT -5
Well, we certainly don't want you to be a 1A or 1B, so in a way that is good news, if that makes any sense. Hang in there, and tell us about your new cd.
|
|
|
Post by coachdoc on Jan 22, 2014 9:24:19 GMT -5
That is the best news possible. That means that your situation is not dire, and if you keep taking care of yourself, you may not get to 1A or B for a very long time. This is very good. I know you wish you had more stamina than you have right now, but going though an operation of that magnitude is like being with Dorothy, 'lions and tigers and bears, oh my! So keep up the good work, and you'll put off the big event for quite a while. In the meantime, we're all with ya, thoughts, prayers and best wishes.
|
|
|
Post by Don Clark on Jan 22, 2014 10:08:16 GMT -5
I understand what you're saying Doc, and appreciate where you're going with it. And to be sure, to have my health take a serious enough downturn to have my status elevated is not where I want this to go. Even to be elevated to a 1B means I'd have to be either to the point of being put on IV meds at home and/or having to utilize an assist device like the LVAD that Huttlinger uses. (And I ache for him in that respect, since transplant is not an option for Pete,his LVAD is his "destination therapy".)1A patients are hospitalized and likely to die without transplant, and some don't even make it to transplant.
And you're sure right about the stamina part. I don't think I could handle the rigors of flying and especially the long walk lugging a suitcase and guitar across the Atlanta airport. And with heart rate and BP running so low, oxygen levels can drop too and leaves me prone to nodding out. So that minimizes driving distances. Local trips are fine, but I had considered the possibility of driving to Swannanoa and gigging in Little Rock and Nashville with friends on the way and back......but long haul driving is out unless I can take someone with me. That reduces my musical activities to 3 one hour nursing home sets and 3 church services a month. And the breathing issues (just like in '08 when this started while I was preparing for Winfield) blow concentration enough to make it difficult to play well enough to record. This is what is frustrating the crap outta me right now.
I know that the transplant surgery is huge and enormously invasive, and it and the healing, immune suppression, infection control, and cardiac rehab can be very challenging and carry a large risk.....but when I consider that without the transplant I'm a dead man, it tends to increase my risk tolerance. And at this point, I'm not ready to lower my sights.
|
|
|
Post by billhammond on Jan 22, 2014 10:24:22 GMT -5
I understand what you're saying Doc, and appreciate where you're going with it. And to be sure, to have my health take a serious enough downturn to have my status elevated is not where I want this to go. Even to be elevated to a 1B means I'd have to be either to the point of being put on IV meds at home and/or having to utilize an assist device like the LVAD that Huttlinger uses. (And I ache for him in that respect, since transplant is not an option for Pete,his LVAD is his "destination therapy".)1A patients are hospitalized and likely to die without transplant, and some don't even make it to transplant. And you're sure right about the stamina part. I don't think I could handle the rigors of flying and especially the long walk lugging a suitcase and guitar across the Atlanta airport. And with heart rate and BP running so low, oxygen levels can drop too and leaves me prone to nodding out. So that minimizes driving distances. Local trips are fine, but I had considered the possibility of driving to Swannanoa and gigging in Little Rock and Nashville with friends on the way and back......but long haul driving is out unless I can take someone with me. That reduces my musical activities to 3 one hour nursing home sets and 3 church services a month. And the breathing issues (just like in '08 when this started while I was preparing for Winfield) blow concentration enough to make it difficult to play well enough to record. This is what is frustrating the crap outta me right now. I know that the transplant surgery is huge and enormously invasive, and it and the healing, immune suppression, infection control, and cardiac rehab can be very challenging and carry a large risk.....but when I consider that without the transplant I'm a dead man, it tends to increase my risk tolerance. And at this point, I'm not ready to lower my sights. Don, I continue to be so impressed with your circumspect nature through all of this -- I am not so sure I would handle things half as well. Hang in there, bro.
|
|
|
Post by Don Clark on Jan 22, 2014 12:38:35 GMT -5
Thanks, Bill.....I guess I could take a snivvly, whiny, "poor, poor pitiful me" approach but then all this would get old pretty fast or I'd end up dead pretty fast. I'd rather that I got old instead. I have to admit there are times when maintaining this positive approach isn't easy.
|
|
|
Post by drlj on Jan 22, 2014 12:48:38 GMT -5
You do an amazing job of staying positive.
|
|
Dub
Administrator
I'm gettin' so the past is the only thing I can remember.
Posts: 19,819
|
Post by Dub on Jan 23, 2014 19:07:00 GMT -5
You do an amazing job of staying positive. +1
|
|
|
Post by RickW on Jan 24, 2014 15:00:08 GMT -5
Still working on that final bucket list item, "being shot to death by a jealous husband at the age of 100?" You'll definitely need your stamina for that.
|
|
|
Post by Tim Alexander (fmrly. Camalex) on Jan 25, 2014 20:13:53 GMT -5
You do an amazing job of staying positive. +1 +1 more -- hang in there Don
|
|
|
Post by sekhmet on Jan 27, 2014 3:08:41 GMT -5
Don, you're going to be alright in the end. Your attitude is wonderful. When I had stage four cancer I simply didn't consider the alternative. And here I still am. The way you feel about this will take you three quarters of the way there.
|
|
|
Post by jdd2 on Feb 24, 2014 4:57:28 GMT -5
Don--any news?
|
|
|
Post by TKennedy on Feb 24, 2014 10:25:50 GMT -5
I had not read this thread for a while. Thinking of you Don. A positive attitude is huge and you've got that in spades.
|
|
|
Post by Don Clark on Feb 25, 2014 11:16:54 GMT -5
Hey all.....very much appreciate the comments on my attitude. As much as I also think it is essential to the outcome, and am making a conscious effort to stay this way, it is hard as hell at times.....but doable. I have a support system and group (which obviously includes everyone here)that is immensely helpful. Also helpful is the distraction of music and guitars. As you can see it was not all just Dr. stuff in Kansas City this weekend. I had the pleasure of meeting Joe Conklin from Kansas City Missouri, who came to my hotel so we could meet and I could look over and try out this style five Holloway harp guitar. Joe also brought his Stephen Sedgwick 21 string Harp guitar along and I got to hear him play it as well. I had my Goodall with me too so we spent two and a half plus hours visiting and playing in the hotel lobby. Both a fine player and a fine guy, I enjoyed my time with Joe. I will post a new note and update on the doctor info later today, some interesting new info.
|
|
|
Post by Don Clark on Feb 25, 2014 17:35:08 GMT -5
Update for 2/25/14 -
Basically, I'm much more encouraged after this visit than before. Part of this is from just talking with the transplant coordinator nurse and one of the doctors. Currently, the patients waiting for transplant (and I don't have exact numbers) are mostly at the same #2 level as myself. Right now the number of higher priority patients is very low. This changes the numbers quite a bit, raising the possibilities. You still won't know until the call comes, but it is way better. I will remain hopeful it will happen sooner than later. My height and weight and build, blood type, and organ size needs (which have to match the incoming donor heart) are such that my needs would possibly be met before others simply because it's the right heart for the need. If that is the case, I'm certainly good with that. I am in no way interested in "cutting in line" ahead of another patient whose needs may be better met by a particular heart, just to get mine done in "my time".
The other encouraging part is this.....while waiting out in the lobby ahead of my appointment, I'm sitting on a couch. An elderly lady in a wheelchair is rolled up and parked right next to me. At first, she was quiet but then turned to me and opened up a conversation. Partially paraphrased, it went kind of like this -
Lady - "Hi.....you spending the night here too?"
Me - "Hi.....nope. Hadn't planned on it. Just here for a monthly checkup."
Lady - "Then you must be getting a transplant?"
Me - "Yes.....that's the plan."
Lady - "I could tell.....I know all about it. I've already had mine."
Me - "Oh? Well.....how did it go for you?"
Lady - Oh fine.....I had mine done 14 years ago. I was their recipient #214.
Me - "Wow.....that was a long time ago. You've apparently done well."
Lady - "I had a few rejection issues the first two years, but then it just settled in and went to work on it's own. I haven't been on all those wacky drugs for 12 years. I'll bet you do as good as I did. :-) "
At that point I was called back, but I saw her again briefly as we were about to leave. She was standing on her own back there. She looked good. She did mention earlier that the heart has done fine.....it's the other parts that were wearing out now. I'd guess her age at mid-70s or so.....would have been close to my age when she was transplanted. Wish I had got her name.....for now I'll just look at her as an "Angel of Encouragement".
Now I have been able to visit with a friend nearby where I live who had his done last year and is doing well. And now also a lady who is 14 years the other side of the table. Saint Luke's Mid America Heart Institute has done close to 650 heart transplants by now. I'm quite confident in their abilities. It's things like this that help me to keep a level head through it all.
I'll go back again on March 21.
I still may not know when it will happen.....but one thing for sure, it's closer than it was. And I'm ready.
|
|
|
Post by brucemacneill on Feb 25, 2014 17:48:26 GMT -5
"My height and weight and build, blood type, and organ size needs (which have to match the incoming donor heart) are such that my needs would possibly be met before others simply because it's the right heart for the need. "
Great to be common sometimes, huh?
|
|
|
Post by Don Clark on Feb 25, 2014 17:53:36 GMT -5
"My height and weight and build, blood type, and organ size needs (which have to match the incoming donor heart) are such that my needs would possibly be met before others simply because it's the right heart for the need. " Great to be common sometimes, huh? Yep.....one way to look at it. Sure hope that plays into this. Of course I'm glad I don't have a lot of really irregular things to consider. I'm just so more than ready to be past this and working on the rehab part. The sooner the better.
|
|
|
Post by Village Idiot on Feb 25, 2014 22:38:15 GMT -5
Yes, too bad you didn't get that lady's information. From you post, she seems like she would have been very open to speaking with you. That being said, great news, Don! We're all pulling for you here.
|
|
|
Post by Lonnie on Mar 1, 2014 17:24:54 GMT -5
Like Terry, I've been away from this thread for a bit. The latest news sounds great, Don... Prayers, hopes, and fingers crossed (especially on those pesky minor 9 flat 5 chords)!
|
|