Overdue Update

[Sunfish]

howdy all -

thought i'd post a bit of an update from my fishbowl.

first, thank you so much for all of your kind, thoughtful, encouraging words on the board and an extra special thanks to those of you who sent cards. it totally made my day last week when they arrived in the mail...i love snail mail

i've technically "caught up" in terms of reading posts and am now keeping up with the day-to-day goings on of the forum but am still pretty wiped out so am not up to speed with posting (hello to all the new folks that i've missed welcoming in the past few weeks!)

health-wise things have been rather status quo for me since the hospital. i'm on IVs approx. 18 hours a day though i'm now able to do most of what needs to be done on my own which means the home health nurse only comes about twice a week.

a few have asked me what a PICC line &/or what TPN is so for inquiring minds...

PICC = peripherally inserted central catheter. in basic english it's a central IV line (rather than a peripheral line) that stays in longer-term. it is needed to receive TPN and/or anything via IV at home on a longer-term basis. it "comes out" just above the bend of my arm and inside the body ends right before my heart. other than the skin issues i've been having with the dressing though i haven't really been able to feel it after the first two days or so.

TPN = total parenteral nutrition. in basic english it's complete nutrition that in infused in one's veins and thus bypasses the GI tract. it has just about all of the vitamins/minerals/nutrients/calories needed to function. it's specially formulated for each individual and mine is actually high-salt! the dietician said that was a first for her generally TPN includes an individual's fluid needs too but since mine are so much higher than the norm i'm also getting 2 bags of saline as well.

i'm getting in about 15oz. of clear liquids on most days through "normal" means (i.e. eating/drinking) so obviously the TPN & saline is keeping me out of the hospital. i'm still varying degrees of nauseous 24/7 with stomach pain and no appetite. i really want to eat in theory but it's more wanting to want to eat/ missing food b/c my stomach adamantly says "no" and doesn't even agree with clear liquids if i do more than a bit at a time. i'm not supposed to try anything other than clear fluids until i'm keeping them down which still isn't happening all of the time.

my GI doc & i ordered what i'm hoping will be my magic med - domperidone - from canada this past week so i should be getting it in the next few days. i know a few on here and others with gastroparesis have had success with it so i'm really keeping my fingers crossed that it will bring at least a bit of improvement in getting my tummy moving in the right direction (literally & figuratively).

we're going to try the iron infusions again in a few weeks with pre-medication b/c my hemoglobin & hematocrit are actually getting lower. and the fact that TPN can't include iron obviously isn't going to help things. i'm still getting the procrit to keep it in my system but it's not expected to do much until we get my iron stores up. we think that my reaction may have been made worse the first go around by the fact that i was so dehydrated too b/c it would have essentially made the infusion more concentrated in my system. i really hope we can get it to agree with me b/c my fatigue these days is increasingly intense...more & more so since the first of the year or so.

school is....well, there. i made it to my 6 hours of classes this past week and was physically there but not there otherwise. i have done pretty much nothing outside of getting to my classes since the hospital stay and the semester is over in less than a month. i know i can take incompletes, etc. but the work still has to get done and my head just isn't in it at all. it will get done somehow but while i'm not jumping to any decisions at the moment i'm definitely going to need to re-evaluate things going forward. but that's another discussion for another day.

okey dokey...that's enough of my ramblings for now.

melissa

[michiganjan]

Wow, Melissa, what a long, hard journey you are on. At least you are home and not in the hospital. And at least you are getting what you need to survive while your GI system rests.

I wish you the best. I read every message about how you are doing.

Michigan Jan

[Lukkychrm42]

Hi there-

I hope you're hanging in there. I'm thinking about you a lot, and I hope the IV fluids/TPN help you! Best of luck with the new medicine, and I hope you're doing better soon!!!

[DancingLight]

Thank you for posting an update! Maybe you will inspire me to do the same?

I do hope the new med will help...I will keep all of my fingers and toes crossed, k?

And school...well, we will have to have that talk too It is completely understandable that you cannot be there at all mentally with all that is going on in your health.

Well, enough for now...you KNOW I am here and in your corner ALWAYS.

Love, Em

[dizzygirl]

WOW!!Melissa-you have so much going on!! yet you made it class.. my goodness you are a real trooper my dear!!

I realy hope that they can get things straightened out for you!! and that you get back to baseline soon

BIG HUGS!!

dizz

[Guest Julia59]

I hope you can get your digestive issues under control soon.

It sounds like you have a good team of Docs and medical care.

Keep your chin up---it's sounds like you have good family and friends support---that will help you keep your chin up.

Sending you a big hug,

Julie :0)

[Jacquie802]

Melissa,

Thanks for the update, I have been wondering how you have been doing lately...I hope the meds make you feel better. I think it's great that you are going to class, like Linda said you are a real trooper. Keep us updated on your progess!

Jacquie

[Michelle Sawicki]

We're all rooting for you, Melissa. My thoughts and prayers are with you.

-Michelle

[Roselover]

Melissa,

I have been thinking and praying for you so much lately. I'm glad you posted an update. I hope Domperidone works as miraculously for you as it has for me. I still get my cycles of nausea and pain, but they are so limited and lighter than before that I sail through just fine! I'm scared that there is going to come a time that I can't get it and then I'll be back where you are. Please let us know how it does for you.

Sending a big hug,

Roselover

[bttrflyamby1981]

Hi Melissa,

I'm so sorry your dealing with so much.......I wish you the best.

Amber

[persephone]

Go girl! Stupid question as I have brain fog myself, but is it the POTS alone which has caused this? Do they know why it's happened? And how long you will need to have the tubes and IVs for? IS it a permanent thing?

[Ernie]

Hi,

I hope you will be able to get back to a relative normal life and finish your semester.

[Poohbear]

Hey Sunfish!!

I'm glad to hear you're "holding your own" but so sorry that you are having to deal with all of this.

Hang on and make YOURSELF the priority. I know you want to get through school but take it easy if you need to and make them work with you.

Hope the Dom. works well for you and I'm glad to hear you're able to get a hold of it.

[lalalisa]

Melissa,

Oh wow! You are going through a lot right now. You are such a trooper and you inspire so many of us to keep going! Thanks for letting us know how youre doing. We will continue to pray for you during this difficult time.

Lisa

[Guest Mary from OH]

Hey Melissa,

I pray that the Domperidone works for you! I know that Propulsid was wonderful for Marissa (my daughter). We may need to go down the Domperi road one day ourselves...

I keep praying that you no longer need your lines and you can get back to a more "normal" life for you and that your bleeding issues and GI issues will stabilize. Please remember I'm only a keystroke away. You need to vent sometimes too!!

You're in my prayers!! Take care of YOURSELF!!

[Sunfish]

many thanks for all of your continued well-wishes, thoughts & prayers. i'll get back & answer the questions a few of you had later but i'm pretty under the weather at the moment. let's just say that when it rains it pours. i woke up yesterday with a chills & a fever that was up to 102.9 by late afternoon. let's just say i was bordering on incoherant. i cannot remember the last time i've had that much of a fever.

it seems like i'm just fighting off a flu-bug of sorts but of course with a central line in we have to be pretty on top of things to make sure it doesn't get infected. my fever was down to 101 by this morning & i can at least think semi-straight but enough is enough. gggggggggggrrrrrrrrrrrr. okay, rant over.

melissa

[AJVDK]

Sorry to hear you are still under the weather. I hope that things finally start getting better for you soon!

Amy

[Dawg Tired]

Melissa! Hoping that things "cycle" back to being on your side again. You have really had a run of everything!

Gayla

[Guest Mary from OH]

Oh Melissa!! I hope your fever goes away and it's just a bug. With those lines, you need to be so careful with infections. So, do be careful! Love you and take care!

[DancingLight]

Grrrrrrrrrrrrrrrrrrrrr............

I really freaked out when I read your post b/c I remember my POTS doc being so concerned with heart valve infection with the PICC line...

I know you are well-informed and on the ball but please, please don't take any chances!

I am soooo worried about you.

Love, Em

[JaneEyre9]

{{{{{{BIG HUG}}}}}}

[JacobyD]

Hi Melissa.

I'm sorry to hear of your GI problems. I had very slow gut motility at one point and was put on TPN. It is vital that you keep the line sterile. This is something that most hospital staff members don't realize. I had mine for a couple of months with no problems, but during a stay at University of Texas Southwestern Medical Center for autonimic testing one staff member treated my line like a V-8 dipstick and got it infected. I had a temp of 105 and it broke just as they were about to put me in a tub of ice.

I'm still on a PEG feeding tube, and you did the right thing by giving your stomach a rest. After mine was removed I started feeding directly into my stomach. Other than not being able to tolerate sugar I haven't needed to go back. If I lose another pound or two it may just happen though, LOL!

best of luck and feel better soon!

[goldicedance]

Melissa...You have been so brave and continue to fight like a warrior. We are all so worried about you. Watch out for infections...we don't want you to have to deal with an infection from the PICC line while you have so much on your plate (please excuse the choice of words). We really do wish you could be a member of the clean plate club, rather than the clean TPN bag club!

Feel better!!!!

Lois

[Sunfish]

geesh....took me long enough to get back to answer the questions, eh? sorry about that...

i'll throw in an update too since i'm fairly quiet these days on the board...

good news: no more fever. it was the good ol' flu and thankfully no problem with the PICC. so lois i am still a member of the clean PICC line club though hopefully it will be the clean plate club soon (you really gave me a smile...thanks )

other good news: i got the domperidone (med from canada) a week ago and it hasn't caused any problems & perhaps has started to help a bit. i've been able to manage a bit of "real" food. about ten saltines, a scrambled egg white, and a popsicles/clear liquid sips a bit more frequently. that's cumulative over a 4 day period so nothing stellar but more than i've kept down in over a month so hopefully a step in the right direction.

not so good news: i'm still really struggling. my energy levels are crazy low and i pretty much feel drugged 24/7. part of this may be due to my H&H & iron levels. they're not going in the right direction. we found out this week (WHY on earth did it take so long...ggggggrrrrrrrrr) that my reaction to the iron infusion was incredibly atypical and in fact never before seen at the hospital. can't find it in any of the literature either. i didn't have a typical allergic response but rather my body reacted as if the infusion was a toxin which caused rapid hemolysis (destruction of red blood cells), elevation in liver functions, etc. this means we cannot try the infusions again even with pre-medication...it's simply not safe to do so. and my blood levels are lower than when i started the procrit. yippee.

school is completely a no go at this point and i don't even feel well enough to care. not like me at all. my mom's been here this week and she &/or my dad will be back & forth the next two weeks on different days for various medical appts, testing, etc. i also saw dr. chelimsky this week & while part of me resists yet another new doc he works with my GI doc which is obviously not a bad connection at this point. we really liked him though.

he thinks there may be more going on and thinks we need to at least explore mitochondrial diseases as well as do another complete battery of autonomic testing to see where things are quantitatively & b/c of some signs/symptoms on exam in his office. i'm not thrilled but realize it's probably a good idea at this point and really don't have much to lose. in conjuction with he & my GI doc we're also going to go another gastric emptying test while ON my meds. we're likely to then pursue IVIG treatments in an attempt to treat things at the root rather than with all the band-aids that are only negligibly helping at this point.

pers...to specifically answer your questions, there's no timeline at this point for my central line, TPN, etc. essentially my GI tract needs to work well enough to digest enough on its own which isn't the case at this point. when/if this will happen is an unknown. we're hoping that the new med will work but it can take several weeks to really tell. hopefully the fact that i've been able to keep even a few bites down here & there this week is a good sign. in terms of your questions about "why" and is it "just" POTS, my docs don't think that i have "just" POTS at this point. there's been a movement in that direction of thought for awhile now with my fairly rapid & systemic decline these past two years or so. i have a dysautonomia of some type but whether its a variant of PAF or a progressive neuropathy or something else (i.e. mitochondrial disease causing neuropathy) is an unknown at this point.

okay.....that's it for my updates. i miss being in better touch with all of you, being able to chime in more on the board, etc. but am reading & think about you all often. i know many of you have so much going on yourselves. thanks for the continued good thoughts, words of encouragement, & prayers. i know i've said it before but they mean A LOT to me.

melissa

[MightyMouse]

Melissa, we all miss you, but surely understand why you're not posting these days!

I hope that the doctors are able to find the reason why all this stuff is happening to you--and that it's something they can treat, at least enough to make you feel better!!!

Thinking of you, Nina