Author Topic: Another day at hospital  (Read 8786 times)

really?

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Re: Another day at hospital
« Reply #15 on: September 04, 2011, 02:56:48 PM »
As I worte before,, the ENT called and said the prelim on the fungul culture came back, said rare type of fungus,, not sure what type yet,, what kind of answer is that,, no wonder i;m still bleeding,, I dontlike going to a er, I know its not the place for any kind of care,, but even my new GP is stupid about what all this means,, I am not about to start all over again with a new GP,, I am to weak, to sick and really dont care anymore,, I told the ENAT I Have no quality oflife left,, you all took it from me,, each one taking alittle piece,, he actualy had the nerve to tell me to have a nice labor day,, only labor I will be doing is trying to stay alive,, I even wrote a email to the vice president of the insurance company that gladly takes mmy 600 bucks wvery month,, no reply from him yet,, yes i;m disgusted,, scared and afraid of dying, yet they just seems to not care, sorry to sound like i;m beating a dead horse, but,, and this is a big but,, I have tried every route,, every avenue,, begged pleaded, cried,, everything I can think of,, but nothng has worked,, and now its to late,, to late to give me a quality of life woth living, they got what they wanted,, they did harm when there was no need for it,, all theyhad to do was listen to me,,, listen just once,, so now i;m alone ina fight,, I have no allies,, no help,, my wife had no clue where the colon even is,, shes my wife but tottaly ignorant about this,, there all out having a good time while I continue to blow out blood ,, thick dark blood,
  To sick to eat,, knowing it wont go down, knowing i;ll choke on stringy stuff,, not wanting to go to bed,, knowing i;ll sleep the dark sleep,, the sleep of no drems,, its the dream of the exhausted,, knoing that when I waje up,, take those first few steps,, everything will go numb, then the drainage starts,, the sickening draininge,, cough some,, stagger to the chair,, cough somemore,, plead to God to make it stop,, He doesnt listen,, never did,, watch commercials about people who whine about back pain getting relief with a sleep number bed,, they have it pretty easy,, the next time I have to go to a ER or doctors office,, Ilm actually afraid there going to lock me up,, either in jail or a psych ward,, but to hear my wife say I look like a crazy man today relly hurt,, that hurt bad,, real bad,, pain and fear will give a person that crazy look,, that look of wanting help,, needing help,, but not getting any,, oh well,, life is fleeting, vvery fleeting,,

susan

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Re: Another day at hospital
« Reply #16 on: September 04, 2011, 03:03:04 PM »

Regarding the diarrhea, perhaps a stool culture to rule out C. Diff----you've had hospitalizations & likely exposure.
Just a thought. Know you are feeling desparate, I am sorry.
Sjogrens, Stills disease, Acromegaly, Interstitial cystitis

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gurs

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Re: Another day at hospital
« Reply #17 on: September 04, 2011, 03:05:18 PM »
Seems most of us have the same problems...Feeling super ill, near death, go to the ER, after battery of testing, nothing really shows, ok-you feel better now right? go home..same old thing. Its that nasty autoimmune more than likely.....Ive been so sick, my mother begging me to go
to the hospital, when I remind her that nothing will be done, or found, and prob the SJogrens/lupus. Ive had it.

I took the last year off from the hospitals, but now need to get my butt in gear to try and find some relief, whether is the Rituxan or the IVIG, or plasmapharesis like my doc recommends, need to do something.

DId your doc ever recommend plasmapharesis? prob not since they dont seem to think anything is wrong with you...really?
Try contacting the rare diseases foundation..maybe they can help..they see all kinds of strange cases.???

hang in there buddy...

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

sunnybunny

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Re: Another day at hospital
« Reply #18 on: September 04, 2011, 03:26:00 PM »
Dont "go down the rabbit hole". please!

I've been there lots of times, I know how hard it is not to have despair.

Another thought i had was possibly you might see the type of Doc
 that specializes in infectious disease. (cant remember the name for it).

You've had surgeries and been to the hospital alot recently
 and you have a poor immune system.

THis can make it easy to possibly have caught a type of infection
that is hard to detect unless is being looked for and is hard to treat.

I'm keeping my thinking cap on for you.... ;)

jazzlover

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Re: Another day at hospital
« Reply #19 on: September 04, 2011, 05:12:07 PM »
"the ENT called and said the prelim on the fungul culture came back, said rare type of fungus,, not sure what type yet,"

--
So they said you have a fungal infection and they are NOT treating you for it?? Get your wife to call them Monday morning! Yeast/fungus can be deadly.

Hang in there!!
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

cat

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Re: Another day at hospital
« Reply #20 on: September 04, 2011, 06:04:01 PM »
Have you ever considered contacting Dr. Oz, he has helped a lot of people? If I was as bad off as you are I wouldn't hesitate to try any and all means of finding help. Just a thought. It breaks my heart to read of the struggle you have had and for such a long time. I wish you the help you deserve so much.

Danielle28

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Re: Another day at hospital
« Reply #21 on: September 04, 2011, 08:23:13 PM »
Something I keep thinking of is maybe going to see a homeopath or a holistic doctor.  Sometimes they look at things that other doctors don't look at.

I think it may be worth trying- take in copies of your medical records, so you don't have to pay for more tests-  and just maybe get a second opinion.   I took my son in this summer and I did have to pay out of pocket but he gave us some tips that really have helped us manage the symptoms of his mood disorder.  I think they sometimes are just willing to look at us and not prescribe something to make it feel better- but to see if there is something more that can be healed. 

4Kids

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Re: Another day at hospital
« Reply #22 on: September 04, 2011, 09:32:25 PM »
You can get liquid diflucan which will possibly help the thrush or least which can make your lips and mouth burn. I agree too, that is what it did to me after May when i was so sick. The pill form did little for me as you need saliva for the pill form to be effective. Then ky dr had them make a trouche from nystatin for the thrush as well because I just do not have the saliva, even with Salagen, to keep it down.  So I do both. Also when I was sick I had plaster coming from my sinuses. That's what it felt like. It was so sticky and disgusting. suprax cleared it up along with two others for like a month.

If the yeast goes systemic, it will stop you from absorbing nutrition from what you can eat.  i notice a burning or scalding feeling on my tongue when it starts to get out of control.  Otherwise I cannot speak to your pain, I just hear your desperation. And it makes me upset and sad.

When i went to the er wirh my terrible flare, they told me it wouldn't kill me and to go home. The infection almost did kill me and the thrush weakened me so much so quickly that had I not got the liquid diflucn, I would have wasted away to nothing.

I hope you can get to a specialist that can help you.
Plaquinel, Restasis, Salagen, Arthrotec, Cod Liver Oil, B Vitamins, Palafer-C, Plaquinel, Metformin, Spironlactone, Biotin

Cricket

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Re: Another day at hospital
« Reply #23 on: September 04, 2011, 09:34:46 PM »
My daughters friend had MRSA really bad and after 2 weeks in the hospital on IV they put in a pic line and sent her home with the lines and bags of meds and she would hook it up herself, I don't believe it is a hard thing to do.
'
'I agree  you need someone on your side.  Someone who gains nothing but such self-worth to help another individual to feel human,  get a social worker just for you.

If I could do anything from the internet to help you , try to find doc for you etc....  I would.  Keep that in mind, Iam like a momma cub protecting her young.

Prayers are heaven bound my friend~~maybe we should all gather your posts and mail the to different docs
Cricket
« Last Edit: September 04, 2011, 09:36:56 PM by Cricket »
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irish

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Re: Another day at hospital
« Reply #24 on: September 04, 2011, 09:56:31 PM »
really, I know you don't want to hear this, but when they call and tell you that the sputum showed a fungus this is called a preliminary report and it will take more time to isolate just what fungus it is. Fungus and other odd bacteriums are hard to grow and isolate/identify.

They need to identify the type of fungus before they can treat it. First of all it is pouring money down a hole treating a fungus or bacteria without knowing what kind they are. You just help to build up more drug resistant strains of fungus/bacteria that way. It is best to know exactly what you are treating so you can use the right med the first time around.

It would be good if your son could go with you to the doctor on Tuesday. Going to ER will get you nowhere. You are not in immediate danger and that is pretty much the criteria they use in ER. You will not get admitted unless you are in immediate danger.

It is my humble opinion that you need to be in a nursing home for about a month to receive you PIC line and also to have a thorough assessment done in order to treat all these problems.

In a nursing home the eating issues/weight loss will be addressed as will the bowel issues I would be willing to bet that you are "impacted" with stool and will need a few enemas to clean you out. When a person doesn't go (whether they are having soft or hard stools) the stool just fills up the colon and the liquid stool higher up slides down around the harder stool and runs our of the rectum.

This is something that you will not get resolved at home and with your physical condition now you will need to have all these issues addressed and sorted out in order to go home and lead a life that is better. You will probably need home care help after coming out of the nursing home. That is not a bad thing.

You are lonesome and scared and  nursing home and then home care will help you learn more about what is going on with your body. I think that that your fear has made you anxious and uneasy which is turn makes it hard to deal with the doctors as you are so beside yourself I bet you don't even know where to start with the questions.

Things need to be done in an orderly fashion and this is not happening for you and won't until you have nursing home care and assessment. You need the assessment by nursing home staff in order to help deal with all your issues. You have so much going on that it just scares the heck out of the doctors.

Believe it or not, the doctors get scared to death when they are hit with things that they can't figure out things. They also are so overloaded with information that they don't even know where to start. This is where the nursing home assessment is necessary. Nursing homes are not a bad thing and assessing people medical and physical condition in order to get the best care is what they do.

If you were a relative of mine I would advocate for you to receive nursing home care in order to coordinate quality care to help improve your life. They will most likely not cure you, but just having the assessment and all your issues addressed will really help lift that weight off your shoulder. I would bet that the weight of this illness and the anger is eating you alive. Good luck.

Get that son to move earth!!! The other option is to beg and plead to be admitted for a coupld days and then transferred to a nursing home. This is probably an even better way of dealing with things. Admit you tomorrow and have your GP see you on Tuesday and hopefully start finding a nursing home bed. Make sure that you get an advocate/social worker to fight for your well being. You need a social worker in your corner. GEt the dynamite under your son!!! I will be praying for you. ;D Irish

Jozee

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Re: Another day at hospital
« Reply #25 on: September 04, 2011, 10:23:16 PM »
Great advice Irish! If it were me I'd show up at the hospital and fake like I collapsed or passed out. Then maybe they'd admit you! I'd do it a couple times just to get admitted. Then Tuesday you's see the doc then get the nursing home care.

Sounds like a plan.

The wife needs to get involved. Makes me irritated that they are not helping more, at least by the sounds of it.

eyeamdry

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Re: Another day at hospital
« Reply #26 on: September 04, 2011, 10:59:23 PM »
Jozee, I know you mean well, but pretending to pass out or fall isn't going to help anything.  And, he really could hurt himself - like a broken ankle or something and if he is in a fix and sick now a cast isn't going to help. 

I think Irish is right on tract and I wrote something a little similar in another post.  Nothing quite as eloquent!  Really? needs a social worker and/or a patient advocate to look after his health right now.  I hope he follows Irish's lead.  Lucy

gurs

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Re: Another day at hospital
« Reply #27 on: September 05, 2011, 04:04:33 AM »
Do you have an good infectious disease doc? you need one. If you have a fungus, could be deadly. You prob need to be hospitalized
with an IV of Amphotericin B or something..I have a feeling this fungul stuff maybe at the root of your problems...seriously.
As sick as Ive been, I have to advocate for myself too...my family doesnt get it either, and I cant blame them. This has been going on with
me for the last 4.5 years.  At least demand some diflucan to start with. I know my infectious disease doc did a culture on my yeast before and it showed with anti-fungals would work on which strains of yeast, but diflucan does work on a variety of strains.
You need to be on long-term anti-fungals as it sounds like....wouldnt take anymore antibiotics unless  you have a confirmed infection.

gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

anita

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Re: Another day at hospital
« Reply #28 on: September 05, 2011, 04:09:43 AM »
Really,

Irish is right on track and has good advice as usual.  The only thing I might offer as an alternative, is to consider home care if you aren't comfortable with the nursing home idea just yet.  You apparently have good insurance, so i don't think there will be a problem getting a nurse out to the house daily for IV antibiotic care (which you REALLY need instead of the oral).  I have some experience with home nursing and when the come they do an assessment each day (basic questions).  If anything is bothering you that has even the slightest potential to be serious, the nurse must (due to liability) contact your doctor.  So you basically get an advocate whether you asked for it or not.  This will put the doctors in a position to respond...and they must if requested by the home nurse.

Once you feel that these doctors are trying and making some headway, then you will in turn feel better mentally.  I really would like to see you have a more positive attitude, but understand this won't come until you have reason to believe something positive will occur.

PLEASE contact the ENT about IV antibiotics and home nursing or nursing center.  I think once you get this infection under control you will have the strength to work with the neurologist about some of the other problems.  Focus on one thing at a time and the infection must come first.

Come here daily and bounce ideas off us, vent, cry, yell, etc.  Whatever you need.  We are here for you.

52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Carolina

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Re: Another day at hospital
« Reply #29 on: September 05, 2011, 05:53:36 AM »
Dear really?

Thinking of you.

Irish has the right idea.....you need nutrition and total care now, and all the care a nursing home can provide.

Have't they done an MRI of your bowel to see what's going on?

Of course she's right about the infection, too.

I once had to drive a man to the hospital who flew in from Kenya with gangrene in his leg.  He wanted surgery RIGHT AWAY, but they had to culture out the infections to be sure to treat him properly and do the surgery when they knew what they were dealing with.  It was VERY traumatic, but the doctor was able to save his knee, which makes all the difference in that sort of amputation. 

As sick as you are now, neither you or your family can think clearly.

Your ENT should be part of the team that gets this process going correctly.

Keep us posted.

Hugs

Elaine
« Last Edit: September 05, 2011, 09:30:31 AM by Carolina »
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