fett on 19/2/2013 at 03:44
As is the story of my life, I always show up after the band has played the encore and all the hookers have gone home.
So you guys know my wife has been a travelling nurse and we've been travelling the country on contracts for the last two years in hopes of settling near Tufts in Boston for transplant. I've been on that list for about a year, and we've finally settled in Springfield, MASS, about 1.5 hours away.
Dr. Keirnan (my transplant doc) informed us last week that wait times at Tufts are edging into the 10-12 month range. My blood type is O, which doesn't help. I know some other people with HCM (my very unique, unpredictable, touchy, pain in the ass disease - hypertrophic cardiomyopathy) who have been turned down by UNOS (the regional transplant organization) at my urgency status (1B) because the list is so long right now - 20 people at top urgency (1A) living at the hospital waiting for hearts. He has advised us to relocate to an area with shorter wait times. We're looking at Penn State Med Center at Hershey, PA because they seem to have a history of transplanting HCM patients and the wait time has consistently been 60-90 days for all blood types over the last 10 years. Plus we have a huge support network in that area, and we would be able to afford to live close to the hospital instead of 1.5 hours away, as is the situation now with Tufts.
All that to say that we basically moved here for the HCM clinic and their expertise (there's only about 5 dedicated clinics in the country) but as my heart failure progresses, the HCM is less of an issue than the edema (fluid retention - resulting in pneumonia, drowning, and slow, painful death) it's causing. Because of that, an HCM physician won't play as big of a role in keeping me alive until transplant as we once thought. This means we theoretically are safe to simply go somewhere with a good transplant team. This makes me really nervous though as I know how tough it can be to get a 1B status exception from UNOS, even in the Boston area. Obviously it's happened in PA because the OPTN/UNOS site data shows 5-6 HCMers transplanted there in recent years. I just worry that we won't find a team as good as the one at Tufts, but it's simply not an option to stay here. It's a small clinic and I feel very much like part of the team in making decisions. They're honest and keep me in the loop. I've never had that experience before with this problem.
We've been on the move, dragging ourselves and our kids across the country for almost 3 years. We were in the middle of moving from Little Rock, Arkansas, to St. Louis in the summer of 2010 and the whole thing fell apart. So we started travelling to get in with an Mass hospital. We've moved every three months since Feb of 2011 (not moving all our belongings, just the bare essentials and staying in corporate housing). We've been in PA, back to LR, to New Hampshire, to Norwalk, CT, and finally here in Springfield. We just moved our furniture and shit up here in November, just starting to finally get settled in. Moving to Hershey, PA looks great to us because we really love it there and it honestly fits our family better. Our best friends for life live there.
But guys, I am drag-ass tired. My wife is worn out. My kids have no consistency outside of our family. PA looks like a guaranteed thing for the long run, but we thought Boston was too. It's all we've worked for and struggled for and sacrificed for now for almost 3 years. I'm exhausted. I can't help with the physical move, and it's so fucking expensive to keep paying movers and putting down deposits all at once. I'm just drained, and I know Christie is, though she just pushes on through. Sometimes I think they'd be better off if I just bought the farm, and they could get on with normal life. I know THEY don't feel that way but it is fucking HARD for me not too. Not meaning I'm suicidal or anything, but I just look at my kids playing together - no friends because there's never time, and it just gores me. Moving to PA will fix that - we were part of a 50+ family homeschool group there and they have dozens of friends that we have made a point of staying in contact with these last 2 years since we left. It's a really great group and will provide a much needed support network for us, something we haven't had since this shit started all the way back in 1998 (my family sucks at helping, unless they can look like dramatic heroes, and this doesn't work that way).
Sometimes I feel like I'm losing who I am in all of this. I can barely play music anymore, writing makes me fatigued, cooking is too much time on my feet, and I miss so many important things with my kids because I'm physically incapable of keeping up. Whine whine whine. I get to be here all day, every day with them and I know other people have it worse, but I'm just tired. So fucking tired. We're waiting to hear from our landlord about possibly getting out of our lease early so we can get moving toward PA. I'll find out tomorrow.
Jesus F. Christ on a unicycle juggling dildos. Fuck all this. Seriously. Fuck it.
demagogue on 19/2/2013 at 05:38
Instability in life sucks, and it sounds like even supercharged suck for your situation. Good luck in your quest for stability and the normal life.
Yakoob on 19/2/2013 at 05:48
I won't even pretend to know what it must feel like going through all the stuff you're going through so let me just wish you best of luck with everything
Angel Dust on 19/2/2013 at 06:28
I was thinking with how sprightly you were in the Star Wars thread that maybe things were lookin' up but, fuck, this sounds truly awful. :(
gunsmoke on 19/2/2013 at 07:11
Sorta puts it all in perspective for a whiny little twat like me. I hope you find whatever it is you're looking for, Fett.
theBlackman on 19/2/2013 at 08:25
I can only wish you and yours the best. There is little comfort in that I know, but as depressing as it maybe, hang in there!
fett on 19/2/2013 at 12:35
Good news this morning - I've been in contact with the HCM patient advocate organization as well as an HCM patient who's currently in the hospital at Hershey Penn State (PA) waiting for a heart. Both were confident in the doctors there to handle HCM cases and say the team has their shit together (rare...). Now if we can just convince our landlord to let us break our lease so we can hurry up and get moved. Otherwise, we're stuck here until October for no reason. The sooner I get moved, the sooner I can start accumulating time on the list for that region. Bleh.
Briareos H on 19/2/2013 at 13:07
I sincerely hope your move to PA will be the last before your transplant. It's an awful feeling to be dependant on bureaucracy and waiting lists, so if the doctors and organisations there are competent, and if you have a better chance to get a heart quickly then that's really worth the pain of moving one last time. It's a fine balance between the peace of mind of stability, saying "screw this, I'll stay here, at least I know what to expect" and the knowledge that the transplant will happen sooner somewhere else, personally I would think that the induced stress of having to wait up to one year even in an urgent condition is worth the move.
As for your children, being very close to someone whose childhood was surprisingly similar to your kids', I think that as long as they see a great father in you, they will grow and adapt around the necessities of your condition. I was surprised to discover as I grew how many kids didn't have -- or, like me, need -- stable friendships until their late teen years and how it didn't hamper a precise view on life or great sociability years later. But if you move to a place where they'll be able to make friends more easily, then all the better.
Now, of course, tiredness is the thing with which you can't just deal magically by deciding it. Do you have any friends that can help you move? Even some fellow TTLGers in MA or PA?
gunsmoke on 19/2/2013 at 14:08
I have dealt with some serious tiredness due to chronic health problems before and God's honest truth Vitamin B-12 works super. Use the sub-lingual version. It melts under the tongue and works nearly instantly. I would take like 3 of them every few hours. I don't know what I would have done without them.
faetal on 19/2/2013 at 20:42
Reading through all of that, it sounds like moving is the best choice for a number of reasons. The effort will be worth it.
It's good to get stuff like this off your chest - here's hoping it all goes as smooth as possible :)
