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Really good news

  • libelder
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  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
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14 years 8 months ago #17140 by libelder
Really good news was created by libelder
Well, it’s not exactly a Eureka moment, but it does appear that I may get to go home tomorrow. That’s not carved in stone, but is a likelihood. At that point I will have been at UVA five days without any recurrence of the gut issue that landed me here, and although everybody remains mystified as to what that was all about the consensus seems to be that it’s over and that there is no longer any reason for me to be hospitalized other than low platelets. I’m lobbying for them to stop worrying about that so much since it’s been a constant in my life for years. It may be new to them, but it’s routine to me. I have a feeling I’m going to have to use the “medical bills are the #1 cause of bankruptcy in the US” argument, hopefully they’ll see reason though since I am on a fixed income and the platelet issue really is old hat for me. There is some risk to low platelets, but I’m smart enough to recognize the signs of a brain bleed now and I sure wouldn’t ignore them in the unlikely event such a thing were to happen.

As best I can tell, the gut issue was related to what I can only call medication toxicity. I say that because my docs in Lynchburg and in Raleigh before that have had me on eight to ten different prescription medications daily for years, all but two of which have been discontinued without ill effect. I’ve been on three different BP meds for years, and since getting here I’ve been off all of them and my BP has been perfect. Ditto the hormone replacement therapy I’ve taken for over 20 years, ditto an antidepressant, ditto a daily antihistamine, ditto several vitamin supplements… ack. I think I have to own some responsibility in as much as I didn’t refuse the meds, but the bottom line is that I’ll be going home on only two meds, and one of them’s one I will likely be able to get off of over time.

I will require zero heart meds- which is kind of amazing the docs given the severity of the cardio issue at the time it struck. They’re now saying I had what’s commonly known as “Broken Heart Syndrome”, aka Takatsubo's Cardiomyopathy, which is to say a stress-induced cardio event that, once the stress ends, resolves without recurrence. The stress in this case was the pain of the gut issue- now that I’ve been a few days pain free my most recent echocardiogram shows that my heart has already 100% recovered, which really has ‘em scratching their heads but no one’s complaining- and no one’s disputing either the earlier assessment nor the current one. So geez, I’m feeling a bit silly about all the drama but all I can say is that they told me I was in really awful shape, and I believed ‘em. Happy all of us that this is seemingly no longer the case. Needless to say, I’ll be looking for a new primary care physician who’s less inclined to write an RX and more inclined to see what my body can do on its’ own.

I’m not sure what else to say, except to again tell you all how very grateful I am for the prayers and thoughts, and to hope you know how much my knowing I have such a large and loving support system of friends does to help me when these scary, scary things happen. Not having children makes me all that much more appreciative of the large and loving circle that holds me in its’ loving arms when I need it. Y’all really are my strength and salvation.

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14 years 8 months ago #17145 by benny
Replied by benny on topic Re: Really good news
Hi Libelder,
Glad to hear you are feeling better & now allowed to go home.
"Medication Toxicity" now thats something I will try to stay clear of.
You must be pleased to require Zero heart med's.
My wife has been on B P meds for years also, and has no side effects to date.

So hopefully now that you are on less medication the gut issure will not return, and who knows maybe your platelets will go up some now you are on less med's as well. HERE's HOPING.
Wishing you all the best and plenty more platelets in the future.
regards,Benny. N Z.
The following user(s) said Thank You: libelder

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  • Melinda
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14 years 8 months ago #17179 by Melinda
Replied by Melinda on topic Re: Really good news
That's great Lib!

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14 years 8 months ago #17524 by julia
Replied by julia on topic Re: Really good news
Hey Lib!
Sorry to hear you've been ill again but glad to hear your on the mend!
Take care & hope your out very soon.
Julia

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  • libelder
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  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
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14 years 8 months ago #17539 by libelder
Replied by libelder on topic Re: Really good news
I've been home about three weeks, no recurrences although my gut doesn't feel "right". They ruled out everything they initially said- no porphyria, no clue what the issue was (is?), all they know is a bunch of stuff it's not. Which is good, but not as good as knowing what it IS. But I'm home and that's such a wonderful thing.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 8 months ago #17543 by Sandi
Replied by Sandi on topic Re: Really good news
My niece was just diagnosed with gastroparesis. That's a thought. It sounds a lot like what you're going through. It took her a few years to get the diagnosis.

digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/

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  • libelder
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  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
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14 years 8 months ago #17547 by libelder
Replied by libelder on topic Re: Really good news
That's already been tested for and ruled out. Honestly there isn't anything that hasn't already been tested for and ruled out, it's maddening.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 8 months ago #17550 by Sandi
Replied by Sandi on topic Re: Really good news
They have to be missing something, otherwise they would have an answer. I hope you get to the bottom of it soon!

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