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Hello From The Hospital


Sunfish
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well...evidently i just can't stay away :D i had my mom bring my laptop today....

once again thanks for all of the good thoughts, well wishes, prayers, etc. etc..as always they are much appreciated. the most nerve-wracking thing thus far was actually before we even arrived at the hospital as i had a fever that hit 101.6 on sunday afternoon. i was pretty worried that things would be put on hold but luckily i awoke monday morning eh okay in that regard.

i'm currently tethered to four IV lines which means my IV pole weighs about as much as i do, but after a crazy day yesterday (bureaucratically, not medically) i'm in my hospital room for the duration which - slight change in plans - is now going to be more than the originally planned three days. instead it will be infused eight hours a day for five days running so....evidently my own version of a 40 hour work week i suppose. (one would think that SSDI would now realize that i can't hold down a job?!)

because of yesterday's craziness of waiting over five hours in post-op (after getting my broviac line placed) for a room, i didn't get to a room until after 4pm and because of that and some pharmacy & other craziness on my floor the IVIG didn't get started until 9pm, which meant it ran until 6am this morning. thus i'll be here until pretty late on friday (as we'll try to gradually shift the IVIG hours earlier) or early saturday (if we can't get it shifted early enough. and then the plan is once a month at home for the same duration....8hrs/day for 5 consecutive days. yikes.

in the moment though things are okey dokey. a few weird things from the IVIG upon waking this morning but nothing alarming. the broviac is in which has me pretty sore is but it's manageable and the PICC line will likely come out tomorrow. i'm supposed to time how long i can walk before i need to sit down on a regular basis as one benchmark for hopeful improvement (my mom thinks dr. c's hoping for a research study) and today's not-so-exciting time was 35sec. fairly pathetic.

the nurses have all been great, as have the many docs. i've had more people intrigued with me than i know what to do with but i figure it's an opportunity to educate people so for the most part i don't mind. of course the private room is a plus, and my dad came to visit today too (new knee and all).

okay...hospital ramblings over.

cheers to all,

:D melissa

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Hello there you Sunshiney fish :D I hope that all this poking, proding and infusing gives you some relief and some weight gain... Sunfish are supposed to weigh more than a mouse, you know? :D

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hehe.....you gave me a laugh miss mouse. believe it or not i'm hoping weight gain is NOT on the agenda. eating on my own, yes, but i've been able to keep my weight up with the TPN. i actually gained ten pounds in the first month after starting it so i'm a right plump ol fish these days.

:D melissa

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Gald to hear that thinga are going well. You are in my thoughts and I hope IVIG will work for you. Wish you the best! :D

Amy

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hey there miss sunfish! I hope that all goes well for you this week.. and that you are out of there soon. and back home in your own fishbowl soon!

take care dear and let us know how things are going when your up to it.

Big hugs

linda

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hey Melissa!

Sounds like an exhausting day just getting in to a hospital bed!?

My my...how cool you have access to the computer though...it's the little things isn't it?

I hope things go according to plan and they can all learn a thing or two from you.

Sounds like a full time job to me!?

Sending thoughts, and prayers to you young lady.

Sophia

p.s. and double thumbs UP on the private room.

P.p.s. Warning, moving fish graphic below...not sure how these things affect some of us from day to day...but I couldn't resist.

*

*

15.gif

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Melissa,

I just wanted to say hi and let you know that you are in my thoughts.....How soon would they expect the IVIG to help??? Would it be a matter of days or weeks???? I am crossing my fingers that this is the treatment you have been looking for (aka I hope this works for you). :D

Keep us updated as much as you can and get some rest!

Jacquie

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Glad to hear from you -that is a good sign that you are wanting your lap top. Sounds like a rough start to things. I am not sure if you are like me, but i would enjoy the private room. I never find hospitals very restful- with all the medical hoopla, MD visits, blood suckers and the ones who come at all hours of the night for vitals- so it is good to have your own space to rest when you can. It is nice to have roomies for company, but depends on the situation.

Well take care and hope things go well for you.

You are making my standing time look good right now-? 35 seonds-lol :rolleyes:

I know it is not funny, just wanted to joke a little. I actually put on a pedometer so that I can at least count steps and try to increase by at least 10-100 more steps a day!! I actually am doing more steps than I would have guessed. Far from the recommended 10,000- but good for me.

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Me,

Even in the worst of circumstances you can make me giggle. Your post just cracked me up.

Love your version of a 40 hour workweek, and the addition of MORE IVs to your growing number of 'accessories'. What's on your wish list next?

Speaking of SSDI, when do you hear about that? Or shouldn't I ask? I cannot imagine how they could deny you!

Sending you some fish tonic...:) and of course, mucho hugs.

What an exhausting first couple of days! But, I am glad you felt up to asking your mom to bring your laptop! And, the private room is good. Aaaahh, the little things.

I'm sorry about the 35 seconds deal...:rolleyes:

I'll be waiting to read the case study on you. I think perhaps I'm becoming one for my POTS doc too.

Love, Em

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Hey Melissa,

Oh, I hope things go smoothly this week! I can't imagine what you are going through!

Thanks for posting and allowing us to be a part of your life! :rolleyes:

Praying for you,

Lisa

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You have a great attitude and that makes all the difference in the world. Hang in there and keep a sense of humor. Keep us all posted.

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Guest Julia59

Sunfish---I hope this will help you function better----good luck to you.

You have a great attitude, and I feel that some day this will payoff for you.

Are you in Toledo? What hospital are you in? I thought I heard you say you were coming to Toledo. A doctor besides Dr. Grubb is actually taking you seriously in Toledo?

I'm having a horrible time trying to get a decent Doc. That's another story...

Mainly---I'm on here to wish you well----and to give you HUGS.......

Hang in there....... :rolleyes::)

Julie :0)

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Oh dear, our fishy is caught on a line (or two, or three, or four). Bless your heart sweetie. Know we are all thinking of you and hoping some relief is in site for you in whatever form it can show up. I'll have to write a song for you this week :rolleyes:

Carmen

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thanks all :P last night was a bit rougher. during the infusion by BP shot up to 160/90 which for me is sky high and thus gave me a horrible headache. they were able to slow down the rate and within a few hours it was subsiding but i'll definitely be here until saturday. the treatments seem to be increasing my nausea a bit too, if that's possible, but it's not like i can really eat anyway so that's all sort of toss up.

and no nina, hopefully no sushi :) lol.

and yep, the private room is definitely my preference. it's one of the best things by far about this hospital that i knew coming in as i was here in march for ten days then. i'm a social person and visitors are great...but roommates can be the pits. i could write a book on roommate horror stories from all of my hospital stays over the years. i've had good ones too, but even that gets exhausting with more people in and out of the room, more noise overall, etc. private is definitely better.

someone asker how long it would take for the IVIG to "kick it" if it's going to work its magic...i think jacquie? the answer is vague and unknown but it definitely wouldn't be yet. depending on who you ask it could be anything from 4 days after the treatment to 6 full months of the treatment, but the general consensus is that it would probably be after 2 to 3 of the treatments (meaning 2 to 3 of the 5-day cycles, not just 2 to 3 days). so there's still a lot of waiting in that regard.

julie, you are right in that i'll be heading back to toledo, but i'm not there yet. i'm in University Hospital in Cleveland (affiliated with Case Western) under dr. chelimsky, though dr. shields (cleveland clinic) and dr. grubb know & are supportive of what's going on. my GI doc is also here (and unexpectedly stopped by yesterday "just to say hi"...he's GREAT) and my home nursing is through this hospital too so it made the most sense to do it here as there will be the continuity when it gets shifted to homecare for next month. the move back to toledo is easier said than done with complicating factors of the medical care here, my parents' house being inaccessible, ten years of my stuff to get packed & moved (which i cannot do myself), my dad's knee replacement surgery, my mom trying to keep her job, etc. etc..) so....unless this IVIG has me entirely up and about in the next month i will be back in toledo but am not there yet.

and em, re: SSDI i could hear anytime about the reconsideration decision. and as you know i can't even think about it at this point. other than knowing my attorney continues to send in updated records there's nothing i can do other than pray and keep my fingers crossed. b/c without the medicare i won't have health insurance come june. and unless i'm off of TPN by then my body won't likely last until the hearing stage. i cannot fathom how anyone could say i can work right now, which all of my records certainly support, but nothing will surprise me.

carmen, i loved the "fish on the line" line...it cracked me up! and a song for me? that would make me feel like a celebrity!

and sophia, i loved the swimming fishy. and the dancing dot & other fun things in the earlier posts.

okay....i'm wiped. i think i answered all the queries but feel free to remind me if i missed something. adieu for now...

:blink: melissa

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Melissa,

You have been on my heart and mind and in my prayers girl! You amaze me! The card you send me at Vandy really touched my heart and lifed my spirits with your care and spirit even in the midst of what you're doing! I love you!!!!

So glad to hear your updates and I will keep praying that you have some positive results! They are very interested in what you're going through at Vandy so when you have the energy and time sometime in the next couple of weeks, you should email Bonnie.

(BTW - thank you so much for your "Vanderbilt Chronicles"... I'm so glad I went! I got home at 2:30 AM last night and am exhausted. My husband flew out for the day to get me home and I'm sure glad he did!!! I'll be posting my own version of your Vanderbilt Chronicles so others will know what it's all about too!)

So glad you are keeping us up to date! Call me if you need to talk!!!

Your friend,

Melanie

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Hey Melissa! What a wonderful surprise to see your post here! Sorry to hear about the BP and nausea issues. I'm glad you are getting fun visitors like the gastro and your dad! :blink:

Hang in there, hon. Like a lot of other people here have said, you have an amazing attitude. You really uplifted me with the card you sent. With all you are going through, it means even more to me. :)

Kristen

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Hi Melissa,

Thanks for the reply to my question. I hope the treatment works quickly for you....If you need anything feel free to let me know...i.e. books, magazines, etc. Hang in there, we're wishing the best of luck for you!

Oh let me know what songs to put on your CD!!!!

Jacquie

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hey girl!

thanks for the update! sorry last night was rough. :) just wanted to say howdy before i head for my nap (i'm in the midst of a stupid coughing fit b/c my hr must be goofy, so i have to go, but wanted to say hi b/c i just saw your post!)

you know how i get ants in my pants to know how you are doing....

thanks for keeping us posted...

later alligator!

love, em

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Hey Melissa

Sorry to hear about the rough night. But glad you have access to laptop..they ARE a godsend.

For some odd reason, Emily's post about "ants in my pants" brought to mind the titel of a country song. I am not sure I ever heard the song and it doesn't contain ants, or pants...but I digress...

"I get tears in my ears when I lie in bed and cry over you."

Nothing like a non -sequitor!!!

:):P

Then there is that famous country song where a verse was added....because allegedly a good country song (at least decades ago) had to have the words mama, prison, pick up trucks, getting drunk, or trains in them.

but I will spare you that...sometimes we can only amuse ourselves? :blink:

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