In hospital

[teenyturner]

Hi,

I have been in hospital for three days.  I collapsed at my GPs office.  I was there to have a blood test but didn't make it.

I woke up covered in vomit, I had also been incontinent for bladder and bowels.  I kept vomiting and coming in and out of consciousness and my GP couldn't get a blood pressure so I was taken by ambulance to the nearest hospital with lights and sirens.

I was treated in the resus room with lots of IV fluids and had blood tests.  I was also low on oxygen so I had to have O2 via a mask.  They thought I had septic shock because my blood pressure was very low 50/30 and because my blood showed low neutrophils of 0.4. I was supposed to be admitted to ICU but they didn't have a sterile isolation room so they transferred me by ambulance to this hospital.  

I saw my normal neuro and hematologist here and they decided that my neuro condition has worsened and is now affecting the part of the CNS that controls vital functions like blood pressure and breathing.  The neuro called it autonomic something or other.

Anyway I have been here a while now and I'm on a continuous IV of potassium in my hand and another IV in my heart that I have copper treatments through.  My blood pressure has come up to 85/40 as long as I lie flat. I feel a lot better but still have a long way to go.  

My neuro said yesterday that he was hopeful that the treatment will improve the CNS problem or I might be in BIG trouble.  My hematologist is worried that my diaphragm will stop working and I won't be able to breathe.

All in all it's been a traumatic and nasty couple of days.

Has anyone ever heard of this CNS thing before?

Regards

[SarahL2491]

Sending you HUGS and hoping things get better.  What a wild ride you have had!

[Sailorsong]

Wow! I would be really freaking out about now and in the foreseeable future if that happened to me.

I have heard that CNS problems from MS can effect autonomic functions but nothing as drastic as you described.  

I hope that you get better soon...

Dennis

[EmmyJN]

I'm so sorry to hear whats happened! You're in my prayers.

Your condition sounds very similar to dysautonomia. Is that what the doctor called it?

Feel better!

~ Em

[maxthecat43]

How absolutely awful for you!  I am so sorry you are going through this.  Please take care of yourself.

((Hugs)),
Tammy

[Sidesteps]

Sending big hugs. I am so sorry you are this sick!! It's horrible.

Please keep us informed.

Get better soon ~
~B

[teenyturner]

Hi, I just looked up dysautonomia.  That sounds a lot like what I have but that isn't what the neuro called it.

My hematologist talked to me yesterday that when I'm over the acute problem, I might have to go to rehab before I will be able to go home. Yuk!

Bye

[supermum_ms]

WOW WOW WOW

All i kept thinking whilst reading this, was that you were bloody lucky, probably in 'The best place to be' when it happened but still WOW talk about scarry stuff. Thinking of you!

HUGS...........JJ  

[figuerpa]

Wow! That has to be the scariest thing ever. I am sending prayers your way that you get on the mend and everything turns out in your favor. Keep us posted.

Hugs,
Paula

[luvnGod]

Praying for you!  Please be sure to rest and keep us updated when you feel well enough to do so.  You are a fighter that's for sure!  

Blessings and lots of LOVE!
Stacie

[ku111]

I am so sorry this happened.  How very scary!  I am sending many many well wishes your way!  Get better soon!

[teenyturner]

I have been transferred from neuro to oncology and now they have ordered a blood transfusion too.  This would be number 200 and something transfusions.

Good news is the potassium is now normal so that doesn't have to be added to my IV any more.  Bad news is they left my copper infusions for the next three days out of the fridge and it has to be thrown out and they don't know if they can get pharmacy to make any more until Monday.

I've had a physic assessment and I'm not allowed to get out of bed by myself but at least I'm allowed out with a nurse and a walker or wheelchair.

My roommate appears to be desperately ill,  I'm sick of always sharing rooms with dying people, it's like they are rubbing your nose in your own mortality.

I'm getting tired.  My arms and hands don't work for long so typing this can be a long tiring thing but it makes me feel connected to something outside this hideous hospital/sick environment.

Thanks for the good wishes.  They mean a lot.

Regards

[zoefromsussex]

Hi there, I just wanted to send you my best wishes and tell you how sorry I feel for you. What a terrible & scary experience. I'm glad you're feeling a little better and hope you'll keep us posted on your progress. With regards to your question, I haven't heard on this problem before but it sems that MS throws all kinds of crazy symptoms our way. You're in my thought's. Take care! Zoe

[teenyturner]

Thanks Zoebut I better make it clear, I don't have MS.  I have another degenerative neuro disorder which also causes demyelination amongst other problems. I dOnt get relapses and remissions.  Every time I have a progression of the disease it has very little, if any recovery.  So I really am keeping my fingers crossed that this time will be one of the few times when I can have a little improvement.

I have quite bad bone pain at the moment and even though I hate them I think I need to ask for some pain tablets.  Last time I had this bone pain the doctor gave me a morphine needle.....never again!

Regards

[Lulu54]

Oh my, this all sounds like quite the ordeal and I am so sorry you are going through this waiting period at the hospital.  AS someone said, your  collapse could not have happened at a better place than in a doctor's office.

The brain stem might be where your problems are originating if you are having autonomic problems.  Autonomic is exactly as it sounds - the functions of our body that we do without have to intentionally think about it are autonomic.  We breath, pee, sweat, etc. without conciously thinking to do so.

There is a fairly succinct explanation of this at wikipedia that might help a bit - http://en.wikipedia.org/wiki/Autonomic_nervous_system



"The autonomic nervous system (ANS or visceral nervous system) is the part of the peripheral nervous system that acts as a control system functioning largely below the level of consciousness, and controls visceral functions.[1] The ANS affects heart rate, digestion, respiratory rate, salivation, perspiration, diameter of the pupils, micturition (urination), and sexual arousal. Whereas most of its actions are involuntary, some, such as breathing, work in tandem with the conscious mind."


I am so sorry you are room sharing - I know that can be miserable.  Can you appeal to your doctors and nurses to look for a quiet place for you?  Be honest that you need the rest and mentally it is taxing between your own problems and being on death watch with your roommate.  I don't say that in a mean way, just realistic.  Repeat this to everyone you talk with and don't stop hounding them until you get moved.

BTW - I should ask, if you don't have MS, which demyelinating disease are they treating your for?  

Please, please keep us posted on your progress, I think we can all learn from your experiences.

gentle hugs
Lulu

[Mike_Shuswap]

Yikes! Just wanted you to know I'm thinking of you.  Take care!

Mike

[Dagun]

I´m so sorry for what you´re going through. I have been reading alot about the Vagus nerve, witch I think has much to do with this autonomic system. When I have symptoms that seems to come from it, then my bp gets very low (not so much, comparing to what you´ve had). But I am sometimes a little scared, about this all. So I can understand that you´re scared, this must be so terrifying. I sure hope they can figure things out and help you get better. Stay strong.

My best wishes,
Dagun

[zoefromsussex]

Hello again, sorry for the assumption that you have MS. I hadn't realised how many condition's existed until I started posting on this forum. There are some very strong & brave people on here, yourself included. I so hope you get a bit of relief soon. As Lulu said, please keep us posted on your progress and take good care of yourself. All the best, Zoe

[HVAC]

I do not know what to say but I am thinking of you.

Alex

[teenyturner]

Hi,  I'm doing a lot better.

My blood pressure is staying in the 90/? To 100/? Range, when it stays consistently over 100 my hematologist sys he will stop the IV fluids :-)

I'm in the middle of having my second blood transfusion in two days but good news is my neutrophil count has risen from critical to severe.

I managed to walk with a physiotherapist and a rollator today and I went around the nurses station and back.  Bliss.

I posted once before in a thread about who is diagnosed? With my illness details.

I have a metabolic disorder (not named because it's very rare) that prevents me from absorbing copper in my gut.  But when I'm given intravenous copper, I just pee it out, so I can't retain copper either.  So I have to spend a third of my life in treatment centers having huge amounts of IV copper pumped into me.  At the beginning of December last year I decided I had
had enough and refused any more treatment.

You guessed it, I'm here in hospital as a result.  I was always told that if I didn't have copper infusions that I would die and I visualized a steady gentle progressive paralysis and fade to black, just like the movies.  But, life isn't like the movies and letting yourself die gracefully isn't all it's cracked up to be, instead of fade to black it was more like black/grey/vomit/pee/****.. .black/grey/vomit/pee/****.

I just want everyone to know there is no dignity and nothing gentle about letting yourself die from a neuro problem.  So please everyone insist that your condition is treated as soon and as thoroughly as possible.  Maybe I can't do anything about my mortality but I really hope nobody else has to through this unnecessarily.

Regards

[Lulu54]

Let me repeat, with emphasis, the message that was shared --

"I just want everyone to know there is no dignity and nothing gentle about letting yourself die from a neuro problem.  So please everyone insist that your condition is treated as soon and as thoroughly as possible."

It can't be said more powerfully than that and thanks, Teenyturner, for this reality check.

I hope you continue to improve - I do rmemeber the copper absorption problem now, but you know my brain doesn't often have that immediate recall.  

hugs and more hugs to you,
L

[summerluvr]

Hi there I hope your pressure comes up.  I have a problem with my blood pressure dropping. Other then fainting, it became a big issue during my stem cell transplant ( for my for blood cancer) and even though I had a double central line in they could't pump the boliss fluids (sp?) fast enought pressure was about 80 over 40.  Also had a few blood transfusions.  I  have felt pretty awful with I was nuetropenic  during chemo, so I do hope your white count comes up an you feel a bit better.  If you wish is  to be off treatment have you considered talking to palliative care?  They are able to to guid your decision about pain / symptom control even if you do not wish active treatment.  Unfortuneatly with my cancer (multiple myeloma) I have talked to more then I like to count online who were (or loved ones were/are) in the final stages and decisions like these are never easy, but there is help out there

[teenyturner]

Hi, I was feeling a lot better and the doctors were talking of sending me to rehab on Wednesday but now I have developed a fever and tested positive for MRSA so I don't know how long I'm going to be here.

I've been moved to an isolation room.

The things I do to get a room to myself.  :-/

[ku111]

I am sorry that now this has happened!  I am glad you were there when the MRSA developed.  Have you had MRSA before now?  If not, I am thinking you aren't real happy since hospitals are the cause usually.  Lots of people get it.  Ten years ago staff knew MRSA but it was rare but now many people get it???  Make sure that everyone washes their hands before entering your room.  ( Isolation has many different criteria-sometimes masks, gloves, gowns and sometimes none unless contact with area-it varies)  There was a big study done and the score wasn't so good.  Nurses, DOCTORS, phys. therapy, lab etc... need to wash their hands.  You don't need any more problems.  The flu and stuff is still out there.  Nothing fun in that and I hope they get you better very soon!  Sounds like you are gonna get a megadose of antibiotics.  Keep us updated.  My thoughts are with you and I am sending many well wishes your way!  Hang in there!

[Lulu54]

Well now you have that private room but this is a rather extreme way to get one.  Sorry to hear about that MRSA problem - it is fairly common here in the US and almost always comes from hospital exposure.

Thanks so much for sharing with us what you are going through, we can all learn a lot from each other, whether it is MS or not.

more hugs,
L