|
Post by billhammond on May 3, 2014 11:14:37 GMT -5
Received the neatest phone call yesterday from a guy who was also a heart transplant recipient. Twice. Had his done at the same facility and by the same doctors that will do mine. His first "new" heart developed some problems, so they replaced it too. He was a goldmine of information and had answers to a number of questions that are coming up as I go through the process. He had his 3½ years ago, is doing great, sounded wonderful. Lots of energy in his voice. It's things like this that sure help me keep my focus. How did he know? He was a co-worker of the recruiter that was talking to Ty about playing football at Mid America Nazarene. My next checkup is this coming Monday. How cool is that -- nothing like having a contact who can speak from experience.
|
|
|
Post by Village Idiot on May 3, 2014 21:18:21 GMT -5
Wonderful, Don. After our conversation last week I can tell that's exactly what you needed. I'm so glad you had that conversation with someone with experience before your appt. Monday.
|
|
|
Post by Don Clark on May 8, 2014 21:54:49 GMT -5
It really was very encouraging. Learned a lot from him. I find out from the staff that he is kind of a self-proclaimed ambassador for heart transplants.....and whenever he is there at Saint Luke's he offers to go talk to any patients that would benefit.
Not a lot more to share from Monday's appointment other than more of the same. Adjusting meds to help with the breathing/weight/fluid issues. Did another EKG and went back to the pulmonary folks for another test of lung function. I definitely feel I have slid some the past few weeks, and obviously the heart has continued to weaken. Although I'm still perking around well enough to keep playing what I can when something comes along. Along with the 3 nursing homes, we have a 45 minute set coming up June 1 at a Garden City showcase we played last year. Then word of mouth went around after I played one song at a community Palm Sunday service last month and we got booked for an hour at an all-city event downtown, so we'll get paid a nice fee, plus lunch, and get to have more local Cimarron folks hear us. Plus I think the local chamber of commerce and the City of Cimarron will be buying my PA. I hope, I hope.
But when I go back to KC on June 9, I plan on making some stronger demands of the transplant nurses and cardiologists to be way more specific as to where I really am in the possible timeline of this thing. Gets a lot harder as time goes along doing this and maintaining a strong approach and attitude is difficult is we just keep doing the same thing month after month.
|
|
|
Post by Resolve on May 9, 2014 7:52:47 GMT -5
I'm sure it has to be just SO difficult to be in this "holding pattern", Don. We all know you are doig your best to stay optimistic and to keep on truckin' day by day. I hope things get moving sometime soon. Congrats on your Cimarron gig.
|
|
|
Post by Village Idiot on May 9, 2014 7:58:16 GMT -5
They still didn't tell you much, huh? June 9 isn't that far away. At least that's easy for me to say. Keep hanging in there, Don.
|
|
|
Post by coachdoc on May 9, 2014 8:05:53 GMT -5
Don, I know it's really difficult and vague, but that's just the way this thing goes. No telling when the next heart may be available, when some one on the list behind you has a sudden setback, or how you are doing in the future. There is no certainty in this field at all. It is an extraordinarily tough spot to be in, and the folks running the program would love to give you more precise predictions, but it is just impossible. For every recipient to receive a heart, there has to be a tragedy on the other end. The program can only give you their best estimate.You know we're all routing for you, and wish you the best.
|
|
|
Post by drlj on May 11, 2014 11:34:42 GMT -5
I read through these posts and information regularly just to keep up with the news. As always, you are in our thoughts.
|
|
|
Post by kenlarsson on Jun 2, 2014 9:31:56 GMT -5
I read through these posts and information regularly just to keep up with the news. As always, you are in our thoughts. Same here Don.
|
|
|
Post by sekhmet on Jun 2, 2014 12:54:29 GMT -5
Me too. Waiting must be the hardest thing. Thinking of you.
|
|
|
Post by Village Idiot on Jun 2, 2014 13:06:23 GMT -5
I'm going with what Sekhmet said. Doing OK?
|
|
|
Post by Don Clark on Jun 12, 2014 22:58:47 GMT -5
My most recent trip to Saint Luke's in Kansas City was this past weekend. Started off with dinner and fun on Sunday evening with Joe Conklin, the previous owner of my Holloway Harp Guitar. He brought along his brand new Emerald Synergy 18-string harp guitar, a custom build by Alistair Hay of Emerald Guitars in Ireland. Six bass subs, 6-string main neck, and 6 super trebles. A number of you may have already seen the videos we posted from that evening. I didn't do anything with the treble strings except for hitting one by accident while I played "I Can't Help Falling in Love With You". The note I hit seemed to fit well, so I got by with that one. :-) Joe, on the other hand, is all over the thing.....and is a pleasure to listen to and watch. Writing his own music for it in a predominantly Celtic flavor, he performs on it at Renaissance festivals. The evening was therapeutic, good for the heart. I appreciate Joe's talent and his friendship. I had two appointments on Monday morning.....the first with the pulmonologist to review lung function tests. Upon reviewing the results of a full spectrum test I took last month along with a new chest x-ray I had Monday, the good Dr. Schwartz proceeded to once again confirm that my lungs are in fine shape and I was good for transplant. I liked this guy. We realized we were both the same fine vintage and we connected well. I liked his straight-forward, shoot from the hip, tell it like it is manner. He puts his arm around my shoulder, pulls me close enough to hear him quietly say "Your lungs are fine, Don. They (meaning the transplant team) need to get on the ball and get you a *BLEEP-ing* heart!". :-) I agreed. The next appointment was my regular monthly checkup with the transplant team. This usually involves some discussion with one of the transplant nurses and a visit from one of the cardiologists. I was able to get a few more questions addressed. The Dr. made a couple of minor adjustments on my meds, trying to help stabilize the issues I had been experiencing with fluid retention and breathing. This seemed to work fairly well as I had enough wind to do some singing this morning at the first nursing home we played at. The past two months I hadn't sang much at all. The only drawback to this was that they gave me an extra intravenous dose of Lasix just before I left and had to get back in the car for the six hour drive home. Needless to say, we had a few extra stops on the way. Although one of the stops was a late lunch with my son Joshua in Manhattan. Another talk with the transplant nurse revealed some information that really helped me get a better handle on the possible timing of this thing. We got out the results of my initial transplant evaluation and compared them to the results of the three tests I retook in April. The "numbers" they look at in these three tests are the main thing they look at in determining when I'm ready to have my need status (currently a 2) elevated to a 1B and move forward to transplant. #1 - The Right Heart Cath measures pressures in the right side of my heart and on down into my lungs. These numbers were down, but not quite far enough to warrant going on IV meds. #2 - The Echo Cardiogram takes measurements of the chambers in the heart and from that they make a determination of that all crucial "ejection fraction". 55% to 70% is normal. At evaluation time, mine was only at 23% and has dropped to 20%. The heart is obviously weakening. It is now also enlarged to the point of being 3 times the size of a normal heart. And #3 - the MVO2 treadmill stress test. Basically showing what is happening with my heart and lungs during prescribed levels of exertion, the magic number they are watching for is a 2.0 or below. I am already down to 2.1. Yes.....according to these three pivotal numbers, I am very close. Yet still a matter of time, I remain in the same holding pattern and wait. The next round of these three tests is currently scheduled for October. Unless I experience a sudden decline ahead of then to warrant moving them up, I will simply keep on keeping on. I have lots to keep me occupied working on harp guitar and playing what gigs come along.
|
|
|
Post by dickt on Jun 13, 2014 5:59:38 GMT -5
Thanks for the update. The news is both encouraging and a bit frightening but your positive attitude will pull you through, Don.
|
|
|
Post by coachdoc on Jun 13, 2014 8:32:21 GMT -5
Yup. The numbers are getting close. We're with ya all the way through this. Patience and hope are your best friends, and you seem to have plenty of each. You have our thoughts and prayers as well.
|
|
|
Post by Village Idiot on Jun 13, 2014 12:50:16 GMT -5
It's an odd situation where you want your numbers to go down, but it looks like you're nearing target range, Don. Hopefully you do have enough to keep busy so October comes quickly. I bet there are plenty of patients rudely demanding this be done, and that the doctors are as appreciative of you attitude as they haven't seen this for a long time. Thanks for keeping us up to date, we truly do care.
|
|
|
Post by RickW on Jun 15, 2014 14:25:47 GMT -5
I can understand where you're coming from, Don. While the whole thing is scary as hell, it would be good to get it done, and be able to move on. Good luck.
|
|
|
Post by theevan on Jun 15, 2014 15:47:38 GMT -5
What does it feel like having that huge heart stuffed in your chest? Does it also impinge on lung capacity besides the fluids? I can't imagine.
If I were in your shoes I think I'd be thinking of how I could survive for the sake of those depending on me. Prayers, buddy.
|
|
|
Post by Village Idiot on Jun 15, 2014 21:38:23 GMT -5
What does it feel like having that huge heart stuffed in your chest? Does it also impinge on lung capacity besides the fluids? I can't imagine. If I were in your shoes I think I'd be thinking of how I could survive for the sake of those depending on me. Prayers, buddy. Don is one of those once in a lifetime guys that anyone is fortunate to meet. Speak with him, and he's just moving forward, carrying on, playing gigs and caring about his family. Of course I like Don when I first met him, but how he's dealing with this has put him on a pedestal for me.
|
|
|
Post by Don Clark on Jun 17, 2014 9:23:17 GMT -5
What does it feel like having that huge heart stuffed in your chest? Does it also impinge on lung capacity besides the fluids? I can't imagine. If I were in your shoes I think I'd be thinking of how I could survive for the sake of those depending on me. Prayers, buddy. Don is one of those once in a lifetime guys that anyone is fortunate to meet. Speak with him, and he's just moving forward, carrying on, playing gigs and caring about his family. Of course I like Don when I first met him, but how he's dealing with this has put him on a pedestal for me. Hi Evan.....when the fluid levels are up, it gets pretty tight. Not much room left in there for air. It's not fun, but bearable. At this point, I'm just glad I've not had to deal with any fluid IN the lungs. I have another online friend in Fla. with V-fib who just spent 3 months hospitalized.....basically drowning. Took a number of procedures including a couple of weeks in a medically induced coma to get him past it. He still had to go into a rehab facility to relearn to walk. Now if he can get his lungs stabilized, he may go for a transplant too. I can still do stairs, but feel it.....and sleep fairly horizontal, not having to jack myself up with pillows. (I sent him three mp3s of instrumentals to listen to as he woke up - he started thinking about getting well enough to play again.) Todd.....let me climb down off that thing and say thanks for the kind words, the sentiment, and your friendship. And also for the call the other day. I just don't see any other way to go but to face this thing head-on. I could be posting an endless stream of sniveling drivel about fears and apprehensions, "Oh my God, I might die" stuff, or worries about how much Barb might sell my guitars for. ( ) But I'd rather not. Aside from being an admittedly extreme surgical procedure, it's not really a whole lot different from any of the other medical challenges that have been faced by others here like Kate, Jerry, Ken, T-Bob, and others.....and they're all still with us. We're good to have only lost Knobtwister. And that possibility is just a reality that co-exists with this other. Nothing we can do to change that, I'd rather focus on the other. I'm planning on surviving this thing, getting myself back in the shape I think I can still get back to, and getting back with you all at Vinton. Only drag now is that it will likely be next year, as there isn't enough time to get it done and recoup. I wouldn't enjoy it if I came like I am.
|
|
|
Post by Resolve on Jun 22, 2014 8:59:21 GMT -5
You continue to be in my thoughts and prayers, Don. Sorry we won't see you at Vinton this year though.
|
|
|
Post by Don Clark on Jun 25, 2014 16:34:59 GMT -5
You continue to be in my thoughts and prayers, Don. Sorry we won't see you at Vinton this year though. Thanks Cyndy.....appreciated. I will miss it lots too, especially after missing last year too. I'll miss everything I usually get to.....IJam, Swannanoa, Winfield, PleasantFest (a small private festival I've played for the last 3 years), and the Tumbleweed Festival. But I've been listening to a few tunes by Deep Blue.....you and Lar sound great. You've certainly come a long way since we first met.
|
|