fett on 16/7/2015 at 02:25
Hey gang,
Some of you have already seen it on FB, but I always like to update my TTLG family who avoid the place. Major health update today - partly good, partly bad, but certainly the most significant and scary thing that's happened since I began this journey with you nearly 15 years ago. I've linked to my blog, but the pertinents are as follows:
We learned this week that after 17 years of progressing heart failure, my other organs are finally starting to complain. My kidney and liver "numbers" have been elevated for some time. This causes a great deal of alarm among my cadiac/transplant team because once these organs deteriorate to a certain point, they render you ineligible for a new heart. We all agree that it's time to do something. Unfortunately, we can't order a new heart from the pharmacy. At least not a real one. In my particular case, the only real solution is a Total Artificial Heart (TAH). So within the next three weeks I will be undergoing surgery to replace my failing heart with this device. According to the surgeon, the procedure is more complicated, risky, and longer surgery than an actual heart transplant. I'm expected to live at the hospital from 3-5 months following the procedure. As you can imagine, this part is not good news for a family with young children in the middle of a long, expensive, and tiring journey. The bullet points are:* Heart failure is endangering my other organs and my current heart has to go.
* The temporary solution is the TAH (total artificial heart) and freedom pump (the backpack).
* It should increase my quality and quantity of life over my current heart.
* We have a lot of phone calls to make, e-mails to send, and favors to call in if we're going to survive this huge step in one piece.
* I will still need a real heart ASAP, and this device should keep me in good shape to get one.
* The transplant team, my docs, and my fellow transplant patients are determined to see us through this no matter what they have to do - and they're a very stubborn bunch.
Entire entry here: (
http://newsofmydemise.blogspot.com/)
And because I always get several dozen PMs asking for the info, if you want to help out or share my fundraising site, it's here: (
http://www.youcaring.com/medical-fundraiser/dave-johnson-s-heartfelt-fundraiser/172934)
NOTE: PLEASE consider carefully before donating - times is tough right now for everyone and if I catch any of you broke fucks donating when you can't afford to, I will hunt you down when I am well and kick your dumb asses. We're getting a lot of help from friends and family - we're not starving to death. We're collecting for future medical expenses. Some of you are really struggling, so just don't do it. Furthermore, we obviously appreciate every little bit, but I'd rather you all just hug your kids, parents, brothers and sisters tomorrow and go enjoy some Beatles. Live. Be Happy. Play Thief.
Love You All,
Dave Johnson
(aka, fett, "hey asshole," & "that guy who used to be the religious nut."
demagogue on 16/7/2015 at 03:00
Wow, I don't think the emotions I have in me would even know how to react to what you're facing on your journey. They'd probably throw up their arms and walk off. But a decision's been made and it sounds good that it will at least have some benefits for your quality of life and transplant chances.
I can only wish you the best. Passing these major crossroads in life is a big deal, and one of the things our little group here can hopefully help cheer you on & be rooting for you all the way. :salute:
Vae on 16/7/2015 at 09:30
Although perilous, the road ahead brings optimism to those who wish you good health and safe recovery, from the trials that you have endured.
Rest well knowing this, as you increase your future health and happiness...:angel:
Renault on 16/7/2015 at 14:30
Good luck Fett, I'll be thinking about you and your family a lot in the coming weeks. I can't imagine what you guys are going through right now, just the range of emotions and thinking about all the challenges ahead. But your attitude and mood seems great, and I'm sure that helps carry your family and friends through the toughest times.
What's the easiest way to get updates when the time for the surgery comes?
Also, quick question on the procedure - what's the estimated time for a real heart transplant after the TAH is inserted, since you'll be on the expedited list as a 1B? I'm guessing doing it within the first year would be too hard on the body.
Chimpy Chompy on 16/7/2015 at 16:34
Best of luck Fett. I'm sorry the Total Artificial Heart is less cool than it sounds, it should be like a cyborg upgrade that grants superhuman stamina or something? But I'm happy if it grants some improvements to the quality of your life! Hope you get a proper meat-heart before too long.
fett on 16/7/2015 at 20:10
I'm planning on a major tech post on my blog tomorrow with details but I'm told that while I'm in recovery I will be listed as status 7 - a temporary hold on the list, until I heal enough for another surgery to be safe. For most people this period lasts about 8 weeks but could be longer. Several people at Penn State where I'm listed have gone straight from TAH recovery into a real transplant but then it takes a little longer than usual to recover from that. There's no real way to asses waiting time for a real heart after that though between the 8 weeks and the time I go home (which could be up to 5 months later) I will have 1A status so the chances of a real transplant will the highest they've ever been for me during that period. The waiting list is complicated - I'll try to explain more on my blog tomorrow and I'll link to it here in the OP.
Tony_Tarantula on 16/7/2015 at 22:40
Fett, I don't know if you or anyone else here believes in prayer but it can't hurt if I do.
Mr.Duck on 16/7/2015 at 23:46
Live, pls.
<3
twisty on 17/7/2015 at 07:28
Wishing you all the best Fett for this difficult and worrying time for you and your family.
faetal on 17/7/2015 at 08:30
Best of luck Fett.
