in hospital

[irish]

Seems like somebody should be checking your IgG levels. Have you asked for an immunologist or infectious disease referral. Also, I would think that you could do with a PIC line for your infection.

I hope that they will give you some idea on how to deal with this bowels at home. You should be taking all kinds of laxatives, etc to keep the bowels moving. You know that you have the neuropathy affecting your legs so it is only pretty logical that it is affecting your bowels.

Ask the docs about going to nursing home for 2 weeks so you can get some strength back. You know that all of your issues are either caused by the autoimmune or the brain issues. Be adamant that you get follow up cause you need to learn how to deal with your illnesses. You need some patient education and a nursing home is probably the only place that you can get it.

I don't know what the home health people in your state can offer. Also rehab departments can offer some education as to how to deal with some issues. Dietary is important, etc. Your wife needs to be there also, but I don't know if you can get her to do that. Some people just can't handle the stress of an ill spouse. Heck, I can't handle a sick me and a sick spouse!!!lol

You really should be going to a nursing home because you will continue to have the heart issues and passing out, whatever, until they figure that out. Hospitals take care of the one big problem (sometimes) and then discharge a person without thinking far enough ahead. You are in fragile condition now and I would holler loud and clear about getting help and being a vulnerable adult.

The vulnerable adult phrase usually gets their attention. Be assertive and holler!!!!Irish

[Meld256]

Hope you get some answers today about the heart echo. I'm sorry; I guess you do feel a bit like a leper because of the isolation/MRSA.  I can't see how you'd be sent home with that or any heart/lung problems. 

So, no more talk of any surgery on the sinuses, or did I miss that part?

As irish said, scream and holler about getting something done! And if they're want to send you home, sounds like you're going to need some help.  Maybe the hospital rehab area would be a good thing for a short while, and some sort of home health aide when you do get home.

Wishing you some positive thoughts today and some kind of answers.  Take care; we're with ya! 
Melinda

[really?]

over my protest, they said echo was ok,, they recorded over 40 times my heart rate going up to 180 while rolling over in my sleep,, said my sinuses were severely infected,, said were letting you go,, so I am home,, sicker then before,, I wish death would just come and end all this misery,,,, bowels are so messed up,, walking is getting harder,, 5 feet of walking brings on heavy labored breathing,, family thinks i;m insane,, legs feel like there being stabbed all over,, salivary glands are worse,, I called ENT yesterday as per there instructions on geting operation to do something about them,, they never claled back, I called 5 times,, its like there ignoring me,,

[Calli66]

If you're echo was OK, I guess that means your heart is structurally sound, which is good. Can you get an appointment with an electrophysiologist ---they are the specialists in arrhythmias, and could maybe help find out WHY this is going on.

So sorry to hear that they sent you home without answers. Have to discharge anybody with MRSA, maybe? It makes no sense.

Calli

[irish]

They have to discharge practically everybody too soon. They don't put people in the hospital soon enough and then when we do get admitted we have so many problems that nobody can figure it out in a short period of time.

My hubby was admitted to ER this past Feb with chills and shortness of breath. He was not doing well at all and was on antibiotic for lung infection. ER did cat scan and found some blood clots in his lungs so he had to be sent by ambulance (most cost to taxpayers) to the bigger hospital next town over. They found that his blood was too thick and gave him shots and coumadin and blood got too thin. He had blood in his urine so ended up having a urologist consult.

Then they decided he needed an infectious disease consult which ended up being 2 visits that ended up being an exercise in futility. He had to stay one day longer because of the blood in his urine. Honestly, it ended up being a 3 ring circus. They really didn't do a whole lot except thin his blood and tell us the blood clots weren't dangerous. We knew that cause he would have been dead or had a stroke if they had been.

Bottom line. We can't win. We go to ER and aren't very sick they send us home because it isn't a life threatening condition. We go when we are sick they admit us and do all these consults and send us home scratching our heads---like what just happened and how much is it going to cost me, the insurance company or Medicare.

I think that technology is great but the human condition is so screwed up that nobody knows a simple way to handle all this information. We are lucky if the docs we see have the ability to figure out we need to see a specialist and send us to one.

Then add in the component of people dying in the hospital without a diagnosis or without getting the proper attention soon enough. Lawsuits enter the picture and wow, what a mess!!

Pardon my grandstanding but things were a lot more simple in the old days. You lived, you got sick, saw the doctor and he fixed you or you died. Made for some fatherless kids and widows but life was never easy and still isn't. The End. Irish

[really?]

Well its a saturday and that must mean more pain and suffering,, but whats the sense of complaining,, today started at 4am standing over the sink gasping for air and coughing out clumps of (stuff),, its all from the sinuses and salivary glands,, and naturally that comes along with teh real choking, coughing and nothing coming out,, but hey,, I asked, got nothing except a few days in the hospital,,
Irish,, dontknow if i answered you or not,, I did mention some sort of rehab to try and sort some of this stuff out,, but I never got anywhere,, talked to the caseworker, but she never got back to me,, just gave me a smile of concern and left teh room,, a dietician came in and by teh time she left,, she had no lcue what to tell me that would help bowel issues,, teh GP who was overseeing my case,, nice enough fellow,, and fishes near where my son does in Lake erie,, I can only hope my kid drowns the guy,, again the look and smile of concern,, acknowledge my concerns and leave the room,, I equate it to being led to the gallows, all I needed was a last rite, and a god be with you, I have read over some of my old post,, and its not like this problem is new,, and its not like I havent protested about them,, its just that no one seems to do anything, ya i know doctors are overworked but so am I,, and so are we,, were overworked and sick, were not the parent with teh kid in the waiting room with a cold that a mom wants and demands antibiotics for, keep teh kid home,, or the person that is there becasue they have a little cyst on there finger thats really no big deal,, we must have the bravery of a warrior,, I cant for teh life of me figure out how we dont all throw ourselves in front of a bus,, although the thought has crossed my mind,, What I would not give for just onemorning with a mouth thats not full of goo,, a body thats in so much pain, headaches,, lungs that take in air,, and a heart thats not trying to come out of my chest,
  I am still in shock that they cut me loose when they recorded more hten twenty times my heart rate jumping to 180 a minute just from rolling over in bed,, I mean I heard the alarms going off and hte yellow light flashing,, they just acknoledged it,, never once coming in to see if I was dead or alive,,
  But I have to think this is probably a local problem, as Much as I got a death sentence from Mayo,, the people there were nice,, here its dog eat teh patient,, keep your mouth shut,, we know more then you do, used to think it was a nice city,, but its no better then some of the worst cities in teh country,,
  Well my family saga continues,, on alighter note, my sister who lives next door,, well her husband is a trucker, and I know when he comes home, he comes across the yard and ask for gas for his lawnmower,, never once asking if I need my grass cut,, I get my sisters kid to cut it,, hes 32 and I pay him to do it,, her kid even hates his mother,, he lives with mymom,, and she will ot walk across the yard to see him,, back to BIL,, No ron I dont have any gas, but you can use my mower,, man he thought he hit the lottery, a new mower and a full tank of gas,, (LATER),, I get a knock,, hey bro,, you got any old tennis shoes I can wear,, WTF,, ya ron I think I do,, I threw a pair at him,, asked if he needed any socks shirts underwear, coats,, food,, the cynicasm was lost on him, well there off to gamble in the cab of a 18wheeler,, I have told him over and over,, one of these days your going to wreck that thing into a van full of kids and what are you going to tell the police,, it falls on deaf ears,, except for the one time when he asked,, well can I use your jeep to go then,, SIGH,, NO ron,, I think you better get the ,,,, out of my sight,, these are the people who live to be 100 and die of natural causes in the sleep,, in his case it might be young and not of natural causes unless ballbats are considered natural,

[Jozee]

Your posts always make me laugh. Thanks Really? Sometimes that's all we need to make it through the day. When you are feeling your worst and want it all to end remember there are people who would miss you...like us!

[irish]

really, I just thought of something. When a person is hooked up to the cardiac monitor and you turn over the monitor will literally go crazy. It will show unusual heart rate, blood pressures and pulses. Just thought of this tonight. This may be some of what you saw. Every time my hubby would turn over and send the monitor on a wild goose chase the nurses were in to make sure that the monitor was back to normal after he turned over. Irish

[gurs]

so sorry sweetie..what a nightmare right? Hang in there ok....Miracles do happen. I know its pretty bad just wishing they could find something wrong...anything...all my tests always come back negative for most, other than the SS and lupus etc. I still cant breathe, walk, function much either. 

Are they giving you some IV medrol? i hope so. Often this should help if its an inflammatory condition. Also, tell them you need
daily IVIG or something?  what about plasmapharesis?

gursie

[anita]

I agree with Irish.  I know the monitors do go crazy when you move in bed.  However, you said they also noted high rates while walking a short distance.  They should be able to determine if this is true tachycardia or not.  If your HR is at 180 when walking you'd likely be symptomatic with shortness of breath, etc.   Echo CAN be normal even if you have some heart rate/rhythm problem.  You should ask for a holter monitor or event recorder and note when you have symptoms so they can see if there is anything wrong.

I think/hope you'll feel much better once you finally get that sinus infection under control. 

[engy]

My echo was normal too. My holter monitor showed some issues with rate. It still sounds like POTS to me & both ER's I went to the doctors never heard of it.

really, do you take CoQ10? That is what I think has helped my tachy/brady cardia the most. I take 100 mg 3x a day. just a suggestion, we all want to help. I feel helpless & can empathize with how you feel- iy sucks.

Good luck again & your ballbat comment had me cracking up!

Carie

[really?]

really, I just thought of something. When a person is hooked up to the cardiac monitor and you turn over the monitor will literally go crazy. It will show unusual heart rate, blood pressures and pulses. Just thought of this tonight. This may be some of what you saw. Every time my hubby would turn over and send the monitor on a wild goose chase the nurses were in to make sure that the monitor was back to normal after he turned over. Irish

No,, its not that,, today at least three times my heart will start pounding for no reason other then me moving around,, my wife felt it and she even said it feels like its coming out of your chest,, I dontknow whats going on,, I do know I am tired of this whole thing,, things never get better,, just worse

[Nancy60]

MRSA is really hard to get rid of and can cause havoc in your body if untreated, maybe you have been harboring a MRSA infection all along. 

I know at the hospital I work at, pt's have to have 3 consecutive negative nasal swabs (I think checked every 2 weeks) before they are said to be "clear" of MRSA. 

MRSA is so common now it is found everywhere in the community but those of us with chronic health conditions, compromised immunes systems the very young and very old are most susceptible and more likely to develop symptoms, others in the community are simply carriers and don't develop actual illness. 

Make sure you take the antibiotics as directed, finish them completely and get back in to your doctor to recheck to be sure the infection is gone, otherwise you might need an additional course of antibiotics.

I hope getting this infection cleared up helps get you feeling better.

Nancy

[Calli66]

I agree with Engy----the CoQ10 (and another form is called Ubiquinol) help. Also, I'll sound like a broken record, but taking lots of magnesium (glycinate is good) up to bowel tolerance, eating foods high in potassium, and severely reducing your salt intake should help with the heart.

And another broken record idea here: have you made an appointment with an electrophysiologist-- or at least, a cardiologist. Wearing a Holter monitor will confirm your erratic heart rhythm and then hopefully somebody will take you seriously.

One thing I've come to learn since my own onset of tachy-brady and AFib, is that the heart/endocrine system is very powerful, and produces rapid shifts in stress hormones---on demand. I never thought about my heart like this----something to be respected, for sure. You really have to provide it's cells with the correct electrolyte environment so it can calm down.

Calli

[really?]

Twice I was treatted for MRSA with Vancomycin, once I got it for no apparent reason and the other was a hospital acquired MRSA,, the only thing they did at the hospital was to take a nasal swab on admission and at discharge,, I wonder how they figure out if your just a carrier or actually having a infection going on,, it just seems theres to many hands in the pot and no one seems to know waht the other is doing,, my old GP went to work at a med express,, I met the new GP once and was not impressed,, other then to hear the old saying,, man you have had the million dollar workup,,
  Its hard to do any doctoring when you really dont have a way to get there, my wife works full time,, sons live a few hours away,,

Had to drink some citrate to get things moving,, I have had to do this now for a few years,, I can be sitting here and it feels like my guts just fall,, almost like a waterfall then the cramping starts,, just another string in this guitar, I wish just one of them would say,, lets get to the bottom of all this once and for all,, but like everyone has said here,, when your in the hospital,, there focusing onone thing,, the one thing that brought you there in the first place,, so anything else just gets overlooked or ignored completely, oh they listen, but cant or wont get any other specilitysd involved,,