Thursday, February 21, 2013

Here, There, & Everywhere


Hello all. Big News here, even for gypsies like us.

We've been semi-settled in Springfield, Mass since about October of last year. We like it here for the most part, but there is very little in the way of homschooling groups. The boys are involved in archery and fencing, but they spend most of their time on Skype with various friends from Pennsylvania, especially The Foleys (whom are featured in nearly every post on this blog starting in March of 2011). But honestly, it hasn't felt like home. Note the lack of blog posts. We've all been a little "blah" about the whole thing, but resolved to staying here because it's close to my doctors in Boston. This has been the goal from the beginning, due simply to the fact that my heart disease is rare and his case of the disease is unique in itself. We found no doctors elsewhere that were as knowledgeable about it than the Boston/Tufts Cardiology group.

At an appointment last Thursday, my cardiologist had a serious conversation with us about the road to a transplant, and several things had changed since our last visit.

Firstly, the team there has discussed the fact that as my heart failure progresses, I'm having little to no trouble because of the HCM. But because of the damage the HCM has done to my heart over the years, I am having very typical heart failure symptoms for someone in need of a transplant. In other words, the HCM aspect of my care isn't nearly as important as it was a year ago, though still an important issue in his care up until a transplant. I've been primarily seeing the transplant doctor at Tufts, while the HCM doctor is only consulted occasionally.

Secondly, the waiting time for people in even worse shape than me has risen dramatically in this region, and at Tufts, over the last six months. Without getting into the gory details, they informed us that people in my condition aren't even getting accepted to move up the list because there are more urgent cases that have been waiting, living in the hospital for almost a year now. Too many sick people, not enough hearts. Check that donor box on your driver's license, people. It's rough out here.

This puts us in a difficult position. We expected a lengthy hospital stay, but not 10-12 months. We live an hour and a half from Tufts, where I would be. It's almost impossible to imagine how that would work, not to mention the expense of the rest of the family travelling back and forth, hotels, food, missed work, etc. Our goal was to get closer to Boston, but honestly, we're as close as we can get before cost of living outpaces nurses salary. We love Boston, LOVE IT. But it's expensive.

We started exploring alternative transplant centers when we got home, looking specifically at Hershey, PA because of Penn State Med Center where Christie took her first travel contract. Again, if you're a regular here, you know we have a special place in our hearts for the Hershey/Harrisburg area because of the great experiences there, and mostly because of the wonderful homeschool group (INCH) and our friends, the Foleys.

Penn State in Hershey has a shorter average waiting time for people in my situation 3-4 months. This is not to say I need to be transplanted soon - I am still a "status II" and have to move up two more rankings on the waiting list to even be considered for a heart. I'm not sick enough yet. But when that time comes, the prospect of living at the hospital for 4 months instead of 12 is very appealing. There is a good transplant team there with a fairly strong background in HCM, according to the HCM patient advocate organization, my doctor at Tufts, and an HCM patient currently living there, whom I was able to track down. It isn't Tufts, the centrifuge of HCM study and treatment in the country, but it's good enough for what I need now. Better to have a good doctor who can get you through a 3-4 month wait, than the best doctor who has to get you through a 10-12 month wait. Plus the longer I'm in that condition, the more danger of problems with other organs.

So by moving to the Hershey area, we gain many things:

1) A shorter wait time once I get sicker
2) A big support system with the homeschool group that we still feel very much a part of
3) Being near our best friends
4) Christie being able to work at the hospital where I'll receive care, which should take the sting out of some medical costs
5) The ability to live within 20-30 minutes of the hospital
6) Closer to Philly, D.C. Baltimore, and North Carolina and Arkansas (just by a few hours) where our families live.
7) A slower paced lifestyle in a quaint little Pennsylvania town chock full of farmer's markets, old bookstores, community theaters, mom and pop businesses, great food...all nestled into the beautiful PA countryside dotted with dairy farms and creameries.
8) Cheaper cost of living, less driving to the doctor, etc.

Christie is assured of several jobs or contracts with a 30 day notice. Our landlord here has agreed to terminate our lease as soon as he finds new tenants. So we're about to enter that chaotic time of trips to PA to house hunt, packing up here, applying for jobs, and trying to replant ourselves. We feel confidant that this will be the last time. We can foresee being completely relocated by the end of May, depending on the lease situation here.

Life is funny. We've had a great time moving around, but the stress of my medical situation has made it difficult. We feel like a huge weight has been lifted from our shoulders in so many ways. It's scary to leave the shelter of Tufts because they have been an oasis for us after so many years of bad medical treatment. But overall this is for the best. At the cost of sounding whiny, we feel like we deserve a break. If there was one thing we could have (besides a cure) in this situation, it would be the go ahead to move back to PA where we have so many friends. We know Arkansas isn't an option because of the medical care, though we truly miss all our friends and family there. Honestly, PA has become our new home in a sense, the place we go for vacation, where we celebrate birthdays, and where we intended to settle post-transplant. We've been dealt a really crappy card of late, and it's like we were just handed an Ace.


You can read the Foley's perspective on this HERE. We're not sure who is more excited.

4 comments:

  1. I'm kind of surprised about the comment on AR health care...I was under the impression AR (UAMS maybe?) had a good history of heart transplant surgeons. Maybe that was just propaganda by the local hospitals.

    At any rate, I'm glad you're still on the list and there's a possibility you'll get a new heart. Glad to hear your HCM is stable-ish. Glad to hear you have hope! I hope it continues and that you continue to feel the love from back in the Midwest.

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  2. I was told by a cardiologist last time I was in Arkansas, "You will die here. We don't transplant for HCM in Arkansas. It's unheard of." Christie's worked all over the Northeast now and she says repeatedly that Arkansas is nearly 20 years behind in pretty much every form of health care. And that's someone who has worked in Cardiology, Neurology, Thorasic, Cancer Treatment, and general Med/Surgery. Everything from the equipment, to the methods, to the understanding of certain conditions and diseases. The problem in Arkansas (and many places in the south) is that they're behind, but have a certain pride about "doing it our own way," which is they way it was done 20 years ago. There's also a certain animosity toward the New England research hospitals for whatever reason. The result is outdated medical care. With Heart disease and transplants, it's simple to see this in the data. In the south, lower survival rates, very little diversity in the types of diagnosis' that are transplanted, and a near refusal to acknowledge diastolic or left-sided heart failure, because it's rare. It's a problem that the HCM patient advocate group is very aware of and working to change. I even ran into this problem in St. Louis where the supposed HCM "specialist" wouldn't even discuss transplant with me. That's how people get dead. It's not that they can't transplant successfully - both Baptist and UAMS have excellent programs. But they transplant a very narrow type of heart failure and don't know what to do outside of that. Rare cases get sent to Children's Hospital where they're a little more open to new treatments, but no, Arkansas is sadly very, very behind technologically and educationally, especially when it comes to heart stuff.

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  3. "There's also a certain animosity toward the New England research hospitals for whatever reason."

    It's because we're Yankees. :)

    We love you guys so much. I know we keep saying it, but I don't know what words to use that could possibly convey the connection we've ALWAYS felt with you. We are so glad you'll be here so we can help you and be there for each other having fun together. We. Love. You.

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