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Sjogrens Topics => Living With Sjogren's => Topic started by: really? on August 09, 2011, 06:40:24 PM

Title: in hospital
Post by: really? on August 09, 2011, 06:40:24 PM
Hi all, the headaches got so bad yesterday and I was breathing so hard and close to passing out,, that my wife got me to the ER AGAIN,, they thougth menigitis and did a lumbar,, over a 1000 red blood cells showed up,, but no infection,, they want to do another one tomorrow, to see if it were a traumatic tap.. which led to blood in the sample,, they wouldnt believe me when I told the neruo today that when I walk a few steps my  reathing gets hard and my heart rate goes through teh ceiling,, so they hooked me up to a machine, had me start walking down the hall,, 10 steps later my heart rate jumped from 70 bpm to  180 in a instant,, lungs went flat and I dropped to teh floor,, well I guess I was right about soemthing,, so now ther doing a echo on my heart along with a MRI of the brainin the morning,, they gave me steroids, Neuro actually believed some of what I was telling him,, but the attending is giving me that I think your nuts pal look,, so I;m batting one for 2,, I dont want to be here,, but someone is going to listen,, neuro said we are past teh point of cure,, we needto make your quaslity oflife better,, and thats all I want,, a little of quality of life,, I am goingto demand some sort of hom care untill something is figured out,, I want a walker or a wheelchair,, Ia m not going to continue to fall,, I am not going to lay back and be taken odvantage of,, I have a little over a month left on my cobra,, and I intend on making my insurnace company regret that I HAVEINSURANCE THROUGH THEM,, sorry for the caps,, fingers are pretty numb tonight,, but just wanted everyone to know I am fighting back,, and not taking we dontknow for a answer,, you people get paid a lot of moneyt to know,, its not like most of us here are the only ones in the history of mankind to have weird stuff go on,, I told the neuro tdpay,, stop running the same things over and over,, think outside hte box,,

I think this is my one last shot to get something done,, I talked to teh case worker today and told her the same thing,, I want a quality of life back,, I told her also,, id ont expect miracles,, and she said she will overlook my case,, so we;ll see,, I dont hold out hope for anyone to do what they say, been screwed to many times for that to happen,, but I will not sit idly by anymore and just take it,, label me nuts,, doctor shopping or anything you want,, I have suffered enough, more then enough,, and i want somehting done,, I;pm glad its not menigitis,,, not again,, I almost died last time,, about 12 hours away from it,, I cheated death, but maybe I shouldhave let death winback then,, its sure hasent gotten any better,, so we;ll see tomorrow after all teh testingis done,, Neuro mentioned IVIG again,, but that woldbe down the road,, about amonth or so,, I gave him some subtle hints about things,, he wrote them down and is going to research it,, Keep a good thought for me,, some good Karma for once,,
Title: Re: in hospital
Post by: anita on August 09, 2011, 06:46:14 PM
Lets hope they get you some answers this time!!!  I'll be keeping you in my thoughts. 
Title: Re: in hospital
Post by: Carebear on August 09, 2011, 07:00:36 PM
This sounds very hopeful, Really.  I'm sorry to hear you are having to work so hard for someone to listen to you, but glad that the neuro is receptive.

I hope you get some quality of life back, friend.  I'll be thinking good thoughts.
Title: Re: in hospital
Post by: Joe S. on August 09, 2011, 07:23:50 PM
I hope you get some answers.

Tombstone: "Killed by doc ____ in hospital ____. See I told you I was sick your dumb A$$".

I am concerned about the blood in your spinal fluid. But that could explain some of your problems.
Title: Re: in hospital
Post by: Kerrikins on August 09, 2011, 07:43:45 PM
I'm praying that you finally get some answers!!

Kerrikins
Title: Re: in hospital
Post by: 4Kids on August 09, 2011, 08:26:15 PM
All my thoughts and strength to you my friend. Be gentle with yourself and give them the gears. Get some quality back.
Title: Re: in hospital
Post by: jazzlover on August 09, 2011, 08:38:09 PM
Hang in there!!!!
Title: Re: in hospital
Post by: Meld256 on August 09, 2011, 09:03:59 PM
This sounds hopeful for you.  Not that you are in the hospital, necessarily but that someone admitted you and is listening! Glad you've got the neuro going to bat for you, and sending you hope they find some answers to finally help you get some quality of life back.

Keep fighting, ok?  I'll be sending you thoughts of strength, good Karma, hope and answers. 
Hang in there, we're all with ya!!
Melinda
Title: Re: in hospital
Post by: irish on August 09, 2011, 09:36:45 PM
Finally, it sounds like you are getting some attention. I guess they finally decided you were sick enough to be hospitalized. I will keep praying that they will at least get you stabilized and back on IVIG. Good thing to hear that they put you on the prednisone as I am sure you probably have needed it for a long time. Good luck, IRish
Title: Re: in hospital
Post by: Jozee on August 09, 2011, 11:08:38 PM
Now that's more like it! You got your fight back. Love it!
Title: Re: in hospital
Post by: Ohiocat on August 10, 2011, 02:18:57 AM
Hoping that they can find a way to make you feel better.

Sending all the best wishes your way. 

Please hang in there while they run the tests.
Title: Re: in hospital
Post by: Patze on August 10, 2011, 04:37:46 AM
Oh my Really?, also sending you some soft ( ( ( H U G S ) ) ) and hoping that the docs can finally find the cause of your misery.

Take care my friend and keep us updated, okay?


Patze
Title: Re: in hospital
Post by: Babs659 on August 10, 2011, 04:50:31 AM
Sending you warm thoughts and hugs. :-*
Title: Re: in hospital
Post by: susanep on August 10, 2011, 04:52:55 AM
It is about time that they listen to you.  ::) A long time ago me and my husband were at a doctors office for just some typical stuff, and the doctor said well half of what to do for a patient comes from what they tell us even if a test doesn't show it.

It's been a long time since that doctor, and haven't heard that since. I have said a prayer for you, and you hang in there, and keep fighting  for yourself.

You are your own best advocate. You go man!!!!  ;D

susanep  :)
Title: Re: in hospital
Post by: really? on August 10, 2011, 06:43:28 AM
Thank you everyone, I tell everyone that comes in about how things are getting worse,, they did the MRI on the brain and cervical spine this morning,, echo on my heart later,, they are confused why my heart rate goes so high so fast after just a few steps,, I dont think tehre going to fins the cause for that,, one doctor came in and told me that I could try singular for breathing,, its not that I told him,, its my heart feling like its going to ecplode, I thikhe got teh message,, I guess around lunvch they want to do another spinal since first one was full of red blood cells,, but I;.m still fighting, doing the best I can,, and if nothing is found,, I dont know what to do,, I just keep getting,, man you have been through a lot,, or,, man you sure have got the million dollar workup,, I dont care how much it cost,, just find something for me to get me out of a bed and walking some,, maybe that wheelchair is closer then I think,, I dontknow,, i really dont,,
Love you all,, your all good people,,
Title: Re: in hospital
Post by: engy on August 10, 2011, 06:45:38 AM
Keep up the fight! Someone needs to listen & help. I know you can get some quality life back!

Praying for you to be strong & for someone to help.

Thanks for keeping us updated, you have quite a cheering section here  ;D

Carie
Title: Re: in hospital
Post by: engy on August 10, 2011, 06:47:55 AM
Has the neuro mentioned POTS- postural orthostatic tachycardia syndrome? thats how my heart was when I was dx'd. or other dysautonomia?

singulair actually helps some people with dys. that is caused by mast cells so don't be afraid to try it.

Not that it has to do with your blood cells but sounds like they need to look into it for your heartrate.

I'm not a doctor just throwing out ideas, took me 6 doctors & countless years to be dx'd because POTS isn't common.

Life is priceless

Carie
Title: Re: in hospital
Post by: Cricket on August 10, 2011, 08:01:08 AM
Keep fighting my friend. I know you got it in you!! 
Keeping you in my throughts and prayers
Cricket
Title: Re: in hospital
Post by: Calli66 on August 10, 2011, 08:37:23 AM
I hope you can see an EP---an Electrophysiologist--they specialize in heart arrhythmias. Don't just settle for a regular cardiologist. Hope your stress-echo goes OK. I can't imagine you could do that treadmill thing for very long. I agree with Engy's post about the POTS. Hope you get a complete heart workup, both for structural and electrical problems.

Electrolyte imbalance can make arrhythmias worse. Have they tested this thoroughly? Must have 4:1 ratio of potassium to salt, and add magnesium----to help get the heart cells' electrical impulses working better.

Calli
Title: Re: in hospital
Post by: shevonne on August 10, 2011, 09:29:41 AM
Praying for you!  I hope they find something to ease all of your pain!
Title: Re: in hospital
Post by: really? on August 10, 2011, 10:49:13 AM
Just got back from teh spinaltap,, amazing what a person that knws what there doing makes things go easier,, like a fool I took the valium they offered,, made me sleepy,, well the attending came in and I DID MENTION POTS,, his eyes lit up a bit,, and I think when we go do hte echo on my heart its going to show some problems,,,my oldest is supposedto come in later,, and I did tell the attending that I want case workers to manage my case and get me some rehab or find out what I need to do,, they told me to get a primary care,, I refuse to go back to the doctors around me who douuble as vets on the weekend deliveing cows,,

well as I was typing this,, the attending was in ,, he has no explanation why my heart sound like its going to explode,, he had me walk around the bed with the monitor,, said everything looks good,, I thought wait 5 seconds,, bang,, up to 180,, breath gone,, He believes now,, I guess proof is in hte pudding,, so we;ll see,, I guess next is the echo of teh heart,, I donthave to worry about my heart and breathing to act up while doing this,, I know it will,,

I keep throwing out subltle hints on stuff,, but Iknow its a double edged sword,, doctors dont like being told what a patient thinks about a possible Dx especially when they hit the wall tryng to come up with a Dx,, (somotoform disorder),, I cant recall anyone that can jack there heart rate up byt 100 beats in 2 seconds,, so again we;ll see,,,

I put a call in to the ENT,, he wants to do something to my salivary glands,, said something about draining them and getting some meds up there,, I am waiting for the OR scedulking nurse to call me,, of course my wife is going to freak out when she hears this one,, but it was the ENT who said its time to operate on htem,, tehre not geting any better on there own,,

I guess its beginning to look like another night here,, I only have one night nurse thats kinda loud,, but who can sleep in the hospital anyway,, so the saga continues,, I;l try to keep you all posted
Title: Re: in hospital
Post by: Cheryl on August 10, 2011, 11:09:36 AM
Hi Really,
  I'm so glad that you are in the hospital and getting some real attention and concern from at least one doctor!  I hope they make an accurate dx of something that is treatable.   You're right about needing continuing care at home when you are released.  Hang in there, and keep us posted.
Thoughts and prayers for you,
Cheryl
Title: Re: in hospital
Post by: Meld256 on August 10, 2011, 12:17:03 PM
I, too, am so glad you're being treated and taken seriously.  Good that the spinal wasn't bad on you.

Sometimes I think a good doctor will be receptive to a patient with an idea of dx when they have hit the wall with ideas of their own. Hopefully, you have one of those.  You certainly deserve one!

Good thoughts to your family...for their strength and hope.  And many good thoughts for you to get some treatment that will make your life much better! The case worker might be a great resource for help.

Take care. Keep the fight, and keep us posted on the saga.
Melinda
Title: Re: in hospital
Post by: Shade on August 10, 2011, 03:22:40 PM
Hi Really,

Glad to hear you are getting the attention you need.  Hopefully, you will have some answers before you leave the hospital.

Wishing you the best!

Shade
Title: Re: in hospital
Post by: sewandsew on August 10, 2011, 09:19:58 PM
 It's a shame one has to get so low in order to get the proper care.  Think positive!  Perhaps things will turn a bit now.

However, what will happen when your COBRA runs out?
Title: Re: in hospital
Post by: season on August 10, 2011, 09:28:46 PM
Hello Really? I just know you will be getting some answers soon. You have been down miles and miles of rough roads and you are finally getting some help that you deserve.

Take care of yourself and keep us posted as we all want you to feel better.
Title: Re: in hospital
Post by: really? on August 11, 2011, 06:54:04 AM
I am losing hope that much is going to be doneon my behalf,, My new spinal showed no blood cells in it,,so neuro has said I can be released from thre point of view, as for the other scans,, they are aware that I have a massive infection in my sinuses,, which I know is causing a lot of problems,, they had to give me laxatives to make my bowels move,, now thre back to squeezing and making horrible npoises, I have a suspicion that there going to kick me out of here without getting to the root cause of anything,, the nurse told me that overnight my heart monitor went off constantly,, heart rate kicked up with me just moving in bed, I dontknow if they intend on checking this out ornot,, I had a exho on my heart yesterday afternoon,, I have no idea yet what that showed,, i just know I am very weak,, I am in isoloiton now due to the MRSA that was swabbed out of my sinuses on Monday,, I feel like a leper again,, I dont understand it,, how can I be so sick andnot show anything,, something is worng,, and yes nothing shows up,, I almost dont even want to go home,, I am not going to be any better tehre,, and I am scared , they see the infection,, but dont pay attention to it,, just call it sinusititis,, its more then that when it clogs your throat,, leaving you breathless,, but I gues if myheart checks out,, I belive I am going home,, the MRI of tehBrain was clear,, no lesions,, nothing out of the ordinary,, its all so bizarre,, and depressing at the same time,, I think I have hit another dead end,,
Title: Re: in hospital
Post by: Scottietottie on August 11, 2011, 07:00:02 AM
Hi

Don't give up yet. If they have you in isolation they should be trying to treat the MRSA and you need to insist that they come up with some answers to the heart problem. Hope that maybe a test comes back with some kind of result on that one.

Take care - Scottie  :)
Title: Re: in hospital
Post by: Cricket on August 11, 2011, 08:00:45 AM
You may have to scream at them and be a bitch to insist they do something about the MRSA, Please do not allow them to send you home, make them call in another dr.
I know it is easy to say and hard to do but you have to fight for yourself.  Have your wife come and fight also.
Praying for you.
Cricket
Title: Re: in hospital
Post by: season on August 11, 2011, 08:39:11 AM
Really? Hang in there and don't give up.

I hope you feel much better today.
Title: Re: in hospital
Post by: irish on August 11, 2011, 01:43:26 PM
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 ;D
Title: Re: in hospital
Post by: Meld256 on August 12, 2011, 07:11:09 AM
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
Title: Re: in hospital
Post by: really? on August 12, 2011, 07:44:05 AM
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,,
Title: Re: in hospital
Post by: Calli66 on August 12, 2011, 08:10:33 AM
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
Title: Re: in hospital
Post by: irish on August 12, 2011, 09:47:26 AM
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 :o :o
Title: Re: in hospital
Post by: really? on August 13, 2011, 02:50:26 PM
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,
Title: Re: in hospital
Post by: Jozee on August 13, 2011, 10:04:38 PM
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!
Title: Re: in hospital
Post by: irish on August 13, 2011, 10:37:17 PM
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 ;D
Title: Re: in hospital
Post by: gurs on August 14, 2011, 04:21:18 AM
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
Title: Re: in hospital
Post by: anita on August 14, 2011, 04:59:37 AM
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. 
Title: Re: in hospital
Post by: engy on August 14, 2011, 05:37:05 AM
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
Title: Re: in hospital
Post by: really? on August 14, 2011, 08:11:25 AM
Quote from: irish on August 13, 2011, 10:37:17 PM
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 ;D
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
Title: Re: in hospital
Post by: Nancy60 on August 14, 2011, 08:56:06 AM
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
Title: Re: in hospital
Post by: Calli66 on August 14, 2011, 09:39:34 AM
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
Title: Re: in hospital
Post by: really? on August 14, 2011, 10:31:41 AM
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,,
Title: Re: in hospital
Post by: aussie mum on August 14, 2011, 03:42:48 PM
Hi Really?
I've been thinking of you a lot lately - I cannot understand how after so many years, so many doctors cannot help you.

Recently, they found that I have many nodules on my thyroid, the biggest being 5cm x 2.5cm - not small at all. Throughout this time all the blood tests came back absolutely normal. How can that be???

I really had to push my GP to have the ultrasound in the first place - thank god I did, as the biopsy has come back as Atypical, so I'm up for surgery soon.

When seeing the Thyroid surgeon, and talking about my extreme thirst (remember I have not been been diagnosed with SJS)and he has done some testing on my Parathyroid gland. The parathyroid controls the calcium level in your blood. An overactive Parathyroid gland can cause many symptoms including GERD, heart palpatations, osteoporosis, kidney stones, high blood pressure.

Please take a look at this website -  http://parathyroid.com/

I'm not sure if this could be part of your problem, but if a simple blood test gave you some answers that would be good  :)

Sending you many warm gentle (((((((((((((hugs))))))))))))))

Aussie Mum
Title: Re: in hospital
Post by: Nancy60 on August 14, 2011, 04:17:33 PM
You are a carrier if the swabs come back positive for MRSA but you don't have any signs/symptoms of infection (fever, elevated WBC, etc...).  If it was me and I was still positive with symptoms of infection I would be pushing for additional treatment to get it cleared up. 

Nancy
Title: Re: in hospital
Post by: season on August 14, 2011, 08:49:25 PM
Really? We have a state and government funded program that will provide transportation to the doctor. Check with your Human Resource Office and ask them about this.

I have family members and friends that use this a lot because sometimes transportation is needed to get to the doctor while other family members are working.

This sounds like something that would be a big help to you.