Sunday, May 3, 2015

The Weight Is More

     I'm just gonna go ahead and get this off my chest, since I kind of opened the door yesterday when I was talking about the mobility issues my husband's currently experiencing. There are a lot of times we come out on top when we're pushing back against the Marfan's, and there are a lot of times when we don't. In fact, there are a lot of times when we don't even know how to arm ourselves for the particular battle at hand, and so we're on the losing side before we ever show up.

     I think there are other people out there who probably feel the same way, and I think that helplessness could be alleviated, in some small part, by the powers that be making it a point to remember that this disorder doesn't just affect the heart, the aortic valve - it affects every single piece of connective tissue. I get so frustrated sometimes when I'm looking for something, anything, that could help explain why my husband's symptoms are doing what they're doing. More than that, I get frustrated when we know why they're causing chaos within his body, but there's nothing out there about the treatment of the same. Hell, we both struggle just to find anecdotal stories most times, nevermind actual medial articles.

     The thing is, I know it's the aortic valve and the possibility of dissection that's one of the main, if not THE main issue when it comes to Marfan's; I know it's potentially the most deadly. An aortic dissection has so much potential to be the fatal flaw, and if it happens, there is every possibility that the person to whom it happens isn't coming back. I'm very, very aware of this, just like I'm very, very grateful for the titanium aortic valve my husband now has. That clicking in his chest provides me no small measure of comfort, because it's an indicator of one less nightmare scenario.

     However, it doesn't do anything to address the concerns of the rest of his mind and body. And yes, I say mind and body, because one of most painful symptoms my husband suffers with is major depression. We're struggling to find help for so many of his problems, and the mental component of living with a chronic disorder seems to be the one that's given the least attention of all. I mean, I even went so far as to email The Marfan Foundation to see if they could point us towards a therapist in our area who worked with disabled individuals, and the response I got back was that they had no one to suggest. It's not that I expect them or anyone else to have all the answers, because that's not possible or even realistic to expect. It's disheartening, though, when one of your go-to's, if not your main go-to, doesn't have any more answers than anyone else.

     I don't want you to think that I'm ripping on The Marfan Foundation or any other organization for not having every answer ever; I'm not. I think they do great things for the Marfan community, and I think they provide a great centralized point of contact for the thousands of people struggling with this disorder. They, along with so many other organizations for so many diseases and disorders, are working with what they've got, to the best of their ability; what they do is substantial. What I'm saying is, I've found a definite lack of resources anywhere for the Marfan patients who are like my husband - ones who have had the aortic-valve replacement surgery and are out of immediate danger, but still struggle with the toll the disorder exacts in other ways.

     What about chronic pain? Every website I've ever looked at acknowledges that chronic pain is almost a certainty in Marfan patients, yet I can't find much of anything new on it. What about new surgeries, new pain management techniques? What about looking into ways to increase mobility for the 40+ crowd, those who've exceeded the pre-surgery expected lifespan? (And what I mean by that is that if my husband wouldn't have been able to have his aortic valve replaced, his life expectancy was somewhere around 31, 32; he'll be 42 next month, thanks to the after-market parts.) With the valve replacement surgery becoming more and more common, and Marfan's patients living near-normal lifespans, what happens to them when the rest of the connective tissue starts to give out?

     I've mentioned a few of these issues before and gotten replies, emails and such, from other people with Marfan Syndrome who find themselves in a similar situation, experiencing some of the same issues. They're always quick to offer their stories and suggestions, things that have worked for them. These people give us hope, and they give us things to keep trying, suggestions to keep making to his medical providers. It's about all we can do at this point. Chiropractic care? Sure. Physical therapy? Yeah, why not. Cold-laser therapy? Let's give that a shot, too, even if we don't know what the hell it is. (Seriously, he's going for his first treatment later this week. It's either cutting edge medical technology, or something out of a Marvel comic. Either way.)

    The thing is, I know it's out there, the research, the procedures; I know it's not as though the powers-that-be are ignoring this component. I mean, the Losartan trials are proof of that. I'm not sure how much good that will do my husband, though, because we're past that point - he's already got the hardware. It's fantastic news for the younger generations, though, and that's a really, really good thing. I guess i just feel like we're stuck, because he's of the generation that there's not really much data on. Dr. John Lynn talks about it in an article for the Summer 2014 issue of Connective Issues and says, essentially, that there's just not enough data on this to be able to draw any real conclusions. I suppose, then, that's my real frustration - the lack of information, rather than a lack of willingness to go after it.

     And what about the mental health help? This is, in my opinion, definitely one of the most dangerous aspects of my husband's disorder, and I refuse to believe he's alone in that. He's been through a slew of therapists, and finally seems to have found one that he's able to work with. It's an extremely delicate relationship, because he's entrusting a total, albeit thoroughly trained, stranger with the most complex organ in his body - his brain. I can't find any real statistics on it, but I would be willing to bet every dollar in my bank account that depression is extremely common among individuals living with chronic illnesses. Why, in 2015, does it seem as though no one wants to talk about it, still?

     I think it's always hard being on the front edge of something, as my husband kind of is, just by virtue of his age. He was already twenty three and about to undergo his first major surgery before the diagnostic criteria of Marfan Syndrome was agreed on, so it stands to reason that in this case, being first in line isn't necessarily a good thing. He's the one who's watched, rather than the one doing the watching.



     

1 comment:

Roxy Turner said...

I can definitely appreciate your struggles with the medical establishment not addressing the depression that comes with this. My fifteen year old son is on the edge of having a definitive diagnosis. I can't find a good pediatrician that will coordinate Marfan's care with his psychiatrist. Puberty is hard enough without connective tissue problems on top of it all.

I have a blog that just addressed this particular topic.

http://roxy-turner.blogspot.com/2015/05/in-his-hands.html

Good luck,
Roxy