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In Hospital Six Weeks Out of The Last Seven With Pneumonia Like Symptoms


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#1 millerscrossing

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Posted 20 December 2007 - 06:27 PM

its been crazy, but my oxygen drops till it hurts, have no choice but to get I an ambulance, tell the hospital about having sclero, on steroids and lrviquin mainly, has a huge healing effect, get discharged, three/max four days later, same story, oxygen drops, gunk found in lungs, more steroids, more injections more quinolone antibiotics and then five days later I am fine....will not repeat the story for the next four times. other thanbone of the times I almost died and that now I am back in hospital day two, feeling better than day1 but alot worse than when I was dismissed on early tuesday of last week. two doctors, one a rhemy ,one a pulmi do not even think I have sclero based on the severity and closeness of these relapses......they are desperate to do a lung biopsy, but their hands are tied until my lungs give me a break....


the way things are right now, I can't see an end in sight, anyone seen anything like this before???

thanks James

#2 Sam

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Posted 20 December 2007 - 11:30 PM

James wow you been put through the ringer too. Glad you posted to let us know how you are doing. WEll I am glad you are home and continue to get better. Take care, Will be thinking of you, Sam
Sam

#3 Margaret

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Posted 21 December 2007 - 02:11 AM

Morning James ,

I will keep you in my thoughts. Gareth is going through his second round of
antibiotics for pneumonia this month. Fortunately, he is responding to the
antibiotics and he's still home. He finished the first round of antibiotics on a Sunday and was back in Wed sicker than the first time.

Take care, Everyone.
Margaret

#4 janey

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Posted 21 December 2007 - 05:46 AM

James,
Hang in there Darlin'! Sometimes it's a matter of them finding the right antibiotic. I did have a similar experience last January. Got rushed to the ER and later admitted to the hospital. They had 5 different antibiotics going in to me at once. The doctor told my husband, that since they didn't know the real source of the infection, it was a guessing game. I was on 2 antibiotics for 10 days, but within that time, got another infection and another antibiotic. The x-ray showed my lungs full of fluid both inside and out. It took a while for that to clear up. The good news is that once I survived it all, got home and went through a couple of months of rehab, my overall health started improving. By the summer I felt better than I had since I was diagnosed and that feeling still exists. I hope you experience the same. I know right now, it probably feels like it's never going to end, but with a good team of doctors - you'll pull through.

You'll definitely be in our thoughts for a fast improvement!!!!

Big Hugs,
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#5 LisaBulman

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Posted 22 December 2007 - 06:37 AM

Hi James,
Hang in there! It can be so frustrating when you want to get better but your body will just not cooperate. Let the doctors do what they do and you'll be on your road to recovery soon. It can be so frustrating and annoying to be in the hopsital and exhausting too (you never get any sleep in there), but hopefully they will find something to work and you'll be out of there soon.

Hugs,
Lisa
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#6 Kamlesh

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Posted 22 December 2007 - 09:08 PM

Hi James,

Sorry to hear about your lung issue Keep faith and be positive, there is a light at the end of the tunnel. Last year this time, I was in worst shape in my life, but slowly I pulled myself out. I have improved my lung capacity by about 10% by using Cellcept and breathing exercises. I regularly do breathing exercises for 30 minutes each day. I am off Cellcept now.

Just hang in there and bad days will be behind you.
Kind regards,

Kamlesh


#7 millerscrossing

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Posted 29 December 2007 - 03:43 PM

well, I am finally back home after a nightmare 8 days in icu. I dischartged myself from the first one witjoiut doctor authorisation.......it had next to zero medications, nurses were awful, the doctors worse and it was basically a six bed morgue facility....

Due to my breathing problems, it is so hard to convince the ambulence guys to take you to anywhere other than the nearest community hospital, despite begging them to take me to the university hospital where Iam being monitered.....

So finally I had enough, called a paid for ambulence to take me to the hospital I needed to be in, and will await the financial repercussions of leaving one hospital against medical opinion............at least I will be alive to find out...

Turns out this time I had contraacted a virus strain RSV I think its called which typically attacks newborns and people with compromised lung issues.....

Its great to be home...I willl not leave the house now for at least two weeks, I just want to break this awful cycle I have been through - thanks for the support everyone!!

#8 susie54

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Posted 29 December 2007 - 04:26 PM

Hi James,

Was wondering how your were doing after all this time? I just got back on line after having company this week. You have really been through a ringer and I hope things are turning your way. Today I got worried because I have pain in my lower right lung and coughed a little green but oxygen is OK> I hope it doesn't develop into anything.Please take it real easy and just concentrate on getting well. This will pass. Susie54

#9 millerscrossing

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Posted 29 December 2007 - 06:04 PM

thanx all.......

today has been a good day....i hope for similar results tomorrow - it really is a one day sometimes even one afternoon at a time......and when I say good day, I mean I did not need to call for an ambulance to drag me back in.....

the doctors really dont think I have sclero - due to the severity of my breathing issues, obviously they are convinced its autoimmune, maybe even the official mixed connective tissue disorder, or some type of mixed connective disorder.....

i have my own theory as to why I have been so ill recently, especially solving the puzzle of rapid decent in breathing whilst at home and then rapid recovery in hospital, with just days apart......

my brother and sisters theory are my kids aka mobi and kookie, I think thats bs, so do 7 of the 8 doctors I met...

no, I think its related to another condition have sleep apnea, which I am sensing is something alot of us suffer from as well, or am I way off there??....anyway, my CPAP machine at home is partially cracked, meaning most of the pressure leaks out and every morning I find that I have pulled the mask off during the night due to lack of oxygen getting through, so essentially me, with a seperate underlying respiratory disease has been sleeping without a CPAP ordered for sleep apnea...

well, how does a weakened pair of lungs react to a lack of oxygen.....?...then I go into hospital with infection after another due to the stresses the lungs came under....but then I get anti biotics and a CPAP that WORKS at hospital and I have managed to recover, once came as close as renal shutdown on a ventilator and intibation........

go back home to a broken CPAP and hey presto...round around we go......so thank goodness I have a cpap that works now........could this be the solution to what has been going on recently........FINGERS CROSSED

#10 Sheryl

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Posted 30 December 2007 - 02:24 AM

Millerscrossing,
I hope you are feeling better each and every day. It is strange that the doctors haven't been able to figure out how to stop this. I am glad you made the decision to take an ambulance from one hospital to another. I guess you will have to insist that whoever comes, they take you to the hospital of your choice. You need to go where your doctors are for your best interests.
I hope your new cpap machine is working well for you. I look forward to putting mine on at night for some reason. I don't know if it is for the extra moisture and air being provided or what the reason is for sure. I sometimes have to take my mask off in the early morning hours because of pain or pressure on the bridge of my nose with one mask or the nostrels with another style. I go a couple nights with each style mask. I am learning how to keep it from leaking around my face or nose without putting it so tight. My husband doesn't think I need it. He thinks it is a gimmik and I'm not that bad. He didn't want me to bring in while we were vacationing in Florida. It seems to be a part of me now. I guess that is good.
As for your pets. Some people can go years without noticing the effects of allergies. As cats age they don't spend as much time with their grooming so there is more dander. Both my son and his wife suffered from algeries from their cats. The cats spent more and more time in the basement and weren't loved and petted as they should have been. Their age was also a factor. Both cats were from their college years so they were a great part of their lives. Now, their home is animal free and my son and wife no longer suffer from the allergies. Sometimes you can make decisions to keep and suffer somewhat for your pets. But, when your lungs and life are at stake then maybe drastic decisions should be taken. Maybe your brother or someone else can keep them for a couple weeks for you to see if that helps. You will have to thoroughly vacuum and clean to be able to tell the difference.
I hope you continue to get better without taking any drastic measures. Keep us updated with your progress. Maybe, I will catch you in the Chat Room tonight if we are free at that time. Until Later friend, Sheryl
Strength and Warmth,
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#11 millerscrossing

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Posted 30 December 2007 - 11:33 AM

Sheryl,

I hear u with regard to the cats, but my life has been curtailed so radically over the last 12 months, I dread to think it through.

With my marriage gone aswell, I have nothing as far as company is concerned ....the one thing I have is Moby and Kookie......they make me want to fight, because I love them so.....

Also, when all this started 12 months ago, my wife and I had - wait for it - 15 cats and Ii never suffered as I have done over the last couple of months, knowwhere close....I seriously came within inches of the doctors turning the dialisis off three weeks ago, what I put my poor family through with the worry.......

So it just does not make sense that now with only two cats - they are the problem.....

I promised my brother and sister here in Brooklyn NY that when I get out my cats would be boarded for a couple of weeks to see any noticeable improvement and that I would stay in my apartment for two weeks and not go out to give my lungs some time to recover.......

Well, I have kept my word so far for four dys as far as going out is concerned and intend to still keep it for the two weeks...I feel safe which in itself helps cause the stress reducction is good....but I broke my word with regard to Mobi nd Kookie after a day and a half.....my bro and sis will hit the roof if they come round to visiy unexpectently...

BUt I did say to myself if the breathing deteriorates at all, I would give them out to my friend immediately....but my breathing is alot better, particularly cause I am wearing my CPAP most of the time now.....and yes of course a CPAP makes you feel bette, it helps the lungs move in and out.....the downside is of course getting to used to it......but for now for me, covering my lungs in CPAP security means less chance of me contractin some other infection, cat or human!!

Not all doom and gloom, I now have some family financial help in having a cleaner/cook come twice a week to help keep my apartment in order.........I cannot overstate how lucky I feel right now with that.......what a weight off my shoulders.........

Thanks Mum/Dad!!!!

#12 peanut

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Posted 30 December 2007 - 05:50 PM

Hi James,
I'm always late to chirp in. I hope you're getting lots of rest. That really is the best medicine.

I also went to ER with a lung virus prior to diagnosis. I only went twice not nearly as many times as you have. I couldn't breathe, couldn't stop coughing, couldn't sleep and my lungs ached. I lung x-rays during both trips and the doctors saw nothing. They said I had a lung virus and was put on antibiotics, prednisone, and a cough suppressant. Rest helped but I was still sickly. I fought for my health and after 4 doctors I found a pulmonologist who had answers for me. I share this with you because when I finally found this doctor who diagnosed me she said something that has always scared me - - any regular doctor looking at these chest x-rays would say you're healthy but I know what to look for. This means I could have been diagnosed at the ER but they didn’t know what to look for, so I was sent home labeled healthy with exasperated lungs caused by a virus. I hope your pulmologists is a good one, who knows about scleroderma for your health's sake.

One thing the doctors did say from the beginning is that my lungs crackle like rice krispies. When the doctors listen to your lung do they hear a crackle?

Stress can provoke allergies and boy do you have lots going on. Maybe when things calm down so will your allergies.

Get better.
Have a good new years,

peanut

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my HMO makes me wear a helmet...

#13 millerscrossing

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Posted 31 December 2007 - 04:49 PM

FIRST UP - HAPPY NEW YEAR EVERYONE!!

I have made it one year so far with this diasease, look forward to another less scary one!!

5 days out of hospital, and taking everyones advice of just resting - which for me translates into a bed, a laptop and a cell phone!

So far I am getting /feeling a little better every day. I will also be buying a treaddmill this week to counter any muscle waste plus I need to lose alot of weight, so at least 3 x 10 minutes light walking per day I think to start off with......with oxygen on if I need it, but I know not to overdo things...

Peanuts, thanks for your kind words, with regards the crackling of the lungs.....certainly, each time I went in,there was heavy crackling plus glasslike infiltrates would show up alll across my lungs making them look a ghostly white....not nice....but I would respond well to antis and steroids(except the once when it was too late for anything other than intibation and ventilator) and within four days the catscan would show a picture that the glass like infiltrates had more or less disappeared and my breathing sounded normal......a crazy quick turnaround, just like the rapid descents.....

As for the right doctors, I am fortunate to have one of the very best teams in the country - new york presbyterian columbia university,the problem is they have only recently started to monitor me since moving from phoenix az, and I have been in hospital the last two months so they are not able to begin to diagnose me until things hopefully settle down.

in az, I saw a pulmonologist who thought I had wegeners. then iwent to a rheumatologist who said I had sclero and predicted the shiny skin which I did not have yet when I saw her, but do have now....(a small percentage of sclero victims can have internal organ damage before showing outer skin changes....) and here they believe I have mixed auto immunediasease...but the doctors want to do a lung biopsy on me to see if they can see anything that will help lead them to the right diagnosys ...so if I stay well for at least a month.........i may be back in hospital....at least it will be a scheduled visit......

Hope some of this stuff is useful to you guys......i better shut up now!! bless everyone here :)

#14 susie54

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Posted 31 December 2007 - 05:01 PM

James,

So glad you are feeling better and you have gotten some good advice. Cats or any pets are hard to give up when they have been apart of your lives. BUt if the breathing is better with out them, then maybe you could find them a good home. Could you put them somewhere for a couple of weeks and give it a trial basis?

Also, the exasparated lungs were interesting. I have never heard of that. Good pulmonologist hard good to have. I have one too. Susie54