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Archive for the ‘Hope’ Category

So I haven’t updated much because there’s really been very little change. I’m still stuck in a hospital room, unable to get the necessary nutrition through tube feeds, bored out of my mind. For the last week or so, I’ve heard that I’ll be going home “tomorrow.” I’m pretty sure that’s medical speak for “never,” but I’m still hopeful. The pancreatitis attack is over and my aspiration pneumonia has cleared. I feel fine and just want to go home. I suppose the positive is that we’re finally getting things in line so when I do go home, I won’t end up back here.

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It’s hard to describe exactly how I’m feeling.  My emotions are still incredibly complex and difficult to decipher.

For well over a year, I’ve lived with a “clinical” diagnosis of mitochondrial disease, the result of a lifetime of various symptoms and presentations. What does this entail? Many of my doctors felt that my symptoms and test results were indicative of mito. And they were going to treat it as such. Unfortunately, there is a bit of a stigma attached to a clinical diagnosis. Both in the medical field and among other Mitovians (families affected by mito). Physicians don’t take it seriously (no “proof”!) and frequently suggest a psychological basis (either on behalf of the parent or the patient) to explain the multitude of medical issues – despite tests implying otherwise. And the mito community itself frequently scoffs at clinical diagnoses. Despite all the good we gain from the camaraderie provided by the amazing support network of the mito community, there is also plenty of judgment and doubt.  Some diagnoses are deemed “more serious” or “more true” based on the diagnosis method.  It’s unfortunate, but true.

There are diagnoses based on muscle biopsies (these seem to be given the most credence, despite the high false negative rate).  And there are diagnoses based on genetic mutations or deletions (these are usually given a good bit of respect, but have a high false positive rate, because although mutations are present, they may not be expressed).  Finally, at the bottom, we have “clinical diagnosis.”  These are generally symptom-based with a few objective studies and laboratories to back up the decision.  These are often regarded as untrue, made-up, without basis.  And it sucks that patients aren’t given care by doctors just because these clinical diagnoses are not believed.

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On Wednesday, after 25 days in patient at MGH, I broke out! But I did not leave empty-handed. They sent me home with a nifty new pump and GJ tube to help me get nutrition, 5-6 new medications, and gram-positive staph (as well as another bug I can’t recall) UTI.

The different fluids, formulas, and supplements that were able to get me home: Peptamen 1.5, TPN, Potassium, Magnesium, and Saline

I was so happy to get out of there that I didn’t even care they were sending me home with a REALLY nasty UTI. And – as luck would have it – we got a call from Dr. Sims’ office literally one hour after we left. My biopsy was back. Brilliant. Unfortunately, they wouldn’t tell us anything over the phone, but they were able to squeeze me in for an appointment in two weeks. (Usually it takes months to get in with her, so we’re pretty happy we don’t have to wait too long.)

Now that I’m home, I want to reiterate how much we appreciated everyone who called, sent cards, and visited. I don’t think I could have kept my spirits so high without you all. Especially our amazing visitors: Stef, Karen, Sarah G., Liz, Nana, Beepa, Ralph, Will, Sasha, Katie, Elena, Corynne, Missi, Erin, Crystal, Tapas, Sophie, Jonah, Rebecca, John, Sarah F., Aly, Rachael, Tali, and Kevin. Sorry if we missed anyone! And a huge thanks to everyone who sent cards. They helped keep the room festive during the holidays.

My Card Corner - Thanks for all the love! 🙂

Now I’m just readjusting to my freedom. I’m experiencing a bit of culture shock, coupled with how much more complicated my life has become with new medical devices and medications. But we’re hoping that with the better nutrition, we can better keep the mito from progressing. While I was inpatient, Dr. Sims added a few new supplements to my mito cocktail and we’re hoping that those will decrease the episodes of dystonia, seizures, cyclic vomiting, etc. and increase my quality of life. It has certainly been a tough year for us (and for so many of our dear friends), but we’ll keep fighting and looking to a better future. Thank you, once again, to everyone who has stood by us on this crazy journey. It wouldn’t be possible without you!

The beautiful view from our hospital room - Floor 22 of MGH

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