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Home From The Hospital


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howdy all -

i got home from the hospital late on saturday and think i'm just about caught up on sleep. doesn't mean i feel rested, but at least have had two nights now without being poked and prodded every two hours or so. there should be a law against heparin shots at 5am...those things hurt like the dickens and after 3/day all week my belly looks like someone had target practice.

the middle of the week was the roughest on the IVIG. sparing you the minute-by-minute details, headaches of varying degrees were a constant for about 2 and a half days, at one point being a HORRIBLE migraine; luckily it was short-lived. not a good sign when i had a nurse on friday who i barely realized i'd had earlier in the week b/c i'd been so out of it then. my BP/HR was also ALL over the place. at first they were concerned about this (the nurses) and it was a bit odd in that i was jumping into the high BP range as well, which is not my norm, but all in all Dr. Chelimsky just said that since my whole system is out of whack that it would be expected. going from 85/52 to 160/107 and everywhere in between definitely had the people on the floor intrigued though.

he also affirmed that my glucose readings in the 30s & 40s over the past few months is likely just another glitch in my body that there's not much to do about, perhaps related to mitochondrial stuff. i have a glucometer now to see if the numbers correspond to worse symptoms but he doesn't think they necessarily will.

the most "excitement" of the week however was wednesday evening when i started having pretty severe pain in the area of my sternum. while i was 99% certain it wasn't cardiac related, of course they had to make sure. so that was a bit of a whirlwind testing-wise, and meant the 8-hr IVIG infusion took 17 hrs that "night". all i new was that it REALLY hurt to breath, taking a deep breath was impossible & coughing or a hiccup was torture.

the end result however was that i was diagnosed with pleuritis aka pleurisy. absolutely no relation to the IVIG, though perhaps to the fever i had the day before the hospital admission. never a dull moment i suppose. i was given toradol pushes (IV NSAID meds) which did WONDERS for the rest of the hospital stay and am on anti-inflammatories for several more days at home. the pain is already MUCH improved; it's only bothersome now when i take an unnaturally deep breath or hiccup or cough or whatnot.

so...now it's the waiting & hoping & praying that the globulins do some magic. it's a weird feeling knowing that "this is it" in terms of treatment options, at least for what's available now. and my mid-week we'll already be having to get the infusions set up for three weeks from now.

that's it from the fishbowl....

as always, thanks for all of your prayers, well wishes, good thoughts, crossed fingers, & the like.....

B) melissa

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Melissa,

I am glad to here you are home. I wish you the best, and you will be in my thoughts, and prayers. I really hope this works for you. Keep up the HOPE! B) We need the sunfish around here!

Again, glad you are home! :P

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Oh man Melissa, I would never wish that plueritic pain on anyone!! Feels like you're being stabbed, doesn't it? Owie. Sorry you have that to add to your list of maladies, like you needed another one B)

Feel better and better, I hope. :P Nina

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Thanks for the update, melissa.

Sounds like quite the ADVENTURE you have had.

I also hope you get some relief and help from the IV treatments.

Sophia

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Hello to our favorite Sunfish! B)

Thanks for posting 'the Sunfish Scoop!'...there is never a dull moment with you! You keep everyone on their toes at the l'hopital don't you? I'm waiting for the case study to come out on you. hahahaha.

Guess what, it's time for my nap...surprise, surprise...

But wanted to say HOWDY DUTY! :P

Okay, I am incredibly loopy at this moment...but you've already gotten an earful from me this week, so I'll keep this short and just say....HI and HUGS and LOVE.

Em

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wow melissa! I hope that you get over pluerisy soon!! I had pluerisy the whole winter of 2002-2003..and it hurt!

I hope that you get some good results from this IVIG treatment.. and that you state feeling better dear!

hugs

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Melissa,

Glad to hear that you are finally home. Let's hope that the treatment works! B)

Jacquie

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Guest tearose

Welcome home!

Hope you get over this pleurisy soon and that all your new treatments make you feel better! Those globulins are gonna probably shake you up a bit so put your fins out and hold on to the nearest rock and ride those waves while your body tries to adapt and adjust.

I wish you a comfy first night back in the fishbowl and only good things...

tearose

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Hi Melissa! Thanks so much for letting us know how you're doing. I'm glad you're home, and I'm sending heaps of happy thoughts and good luck your way! I sincerely hope this helps, and best wishes for everything. :unsure::(:angry:

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Welcome home!

It's great they did the IVIG inpatient to start. As much as anyone hates hospitals, it sounds like they took an interest in you.

Any connection between IVIG and pleurisy? Weird immune response?

Pulling for you that this works!

Ariella

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thanks gang.

on the "little things to be happy about" front, the pleurisy is all but gone. i'm no longer on any meds for it and can only feel it a teeny tiny bit if i get a major cough or sneeze or hiccup or whatnot. and nope ariella, they don't think there's any relationship between the pleurisy & the IVIG, especially since i had a fever the day before my hospital admission. but with me who knows...i suppose anything is possible.

everything else is pretty status quo, but don't worry...you all will be some of the first to know if i start running any marathons.

:blink: melissa

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thanks gals.

corina, it's good to see you back. i haven't had a chance to reply to your vacation update in chit-chat, but i am so glad that you had a good trip, even if it was exhausting. this hospital stay was as least planned...in order for me to start the IVIG treatment (as well as to get a more permanent central IV line), as they won't do it anywhere but the hospital the first time. so while the hospital is never fun, it was - hopefully - for something that will bring some relief and not any sort of emergency this time. and then the pleurisy was evidently just a "bonus".

:blink: melissa

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melissa,

thank you for welcoming me again, i did have a great vacation. what i want to ask you, can you explain me what IVIG/treatment means and what it is meant for )i think it will have to do with iv?s but don?t undersand the rest of it). thank you in advance, i will read tomorrow as it is nearly midnight here and i really need to go to bed.

corina :blink:

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hi corina -

I just realized that I never answered your IVIG question. (i was too wiped out to type when i first saw it & then forgot to come back later.) sorry!

As for the IVIG, I'll try for a brief explanation that will also make sense.

IVIG stands for "Intravenous Immunoglubulin" or immunoglobulins given through an IV. We all have immunoglobulins as a key part of our immune system. The IVIG itself is a blood product with one dose made from the blood of at least a thousand people/blood donors. For this reason it is incredibly expensive and I'm thankful that my insurance is - at least for now - covering the treatment.

Some people with immune deficiencies get regular doses of IVIG to replace what they don't have enough of. For some autoimmune diseases/conditions IVIG is given to essentially overwhelm or dilute "bad" antibodies in the body that are causing the autoimmune attack on the body. The exact way that this happens is not entirely understood. When used in this way much higher doses are used than when used in immune deficiences.

For me we are trying it with the HOPE that I have some type of "bad" antibodies in my body, that my progressive neuropathy is in fact an autoimmune attack on my body. The reality is that we simply don't know if this is the case. They have discovered several antibodies that cause similar physical deterioration to what I have had but I do not have any of them. My doctors are hoping that there are other antibodies they do not yet know about and that I have one (or more) of them. This hope is why it is truly an experimental thing to be trying.

I hope this helps and that I didn't just confuse you even more!

:) melissa

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rhonda -

the IVIG hasn't done anything (noticable) at this point. here's my answer re: the potential timeline that i posted in another thread when i was still in the hospital:

someone asked how long it would take for the IVIG to "kick it" if it's going to work its magic... the answer is vague and unknown. 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.

essentially no one knows. it's pretty much an unofficial research project that my docs and i (and my family) decided to embark on b/c at this point there's really not a lot to lose. it's not far-fetched that it won't do anything. obviously we're remaining hopeful but it's essentially a big waiting game. the next treatment should already be coming up a week from this coming monday but we're not certain yet about how the logistics are going to play out (re: whether it will be at home, outpatient at the hospital, or inpatient in the hospital..it's up to my insurance but we're hoping for home).

trust me, though.....if anything good is happening i'll be posting right away.

:) melissa

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hi melissa,

thank you so much for explaining, you made it clear to me. i understand it is a big waiting game, but believe me, if i were you i would try the same (that is: if my docs would offer me of course!). i so hope this will work (in time). i'm sending good thoughts for your next treatment.

corina :)

oh, and of course i understood that you were wiped out as much as i understood that you forgot, don't you worry!!!

oh, and did em sent you a card yet?????? if not i could make you one if you would like (i still have a few left to make as i wasn't able to make all 20 before auction started)

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