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Pneumonia again


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#1 Margaret

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Posted 13 December 2008 - 01:49 PM

Hi, Everyone ,

It seems that I can't get Gareth healthy at all this year. He started seizures a year ago this Jan. and it seems like one month his seizures are under control and, then, he has another major episode and we have to revamp the meds again.

We had to change his GERD meds from Zantac to Prilosec and the doctor *thinks* he may have a stomach ulcer. Do they hurt....I have never had one?

He still has a large open wound from the pilonidal cyst surgery that hasn't closed since July. Surgeon said it's *probably* related to the UCTD.

In Oct., I got him a pneumonia shot because I didn't want to have to go through the horrors of Prednisone again if he got pneumonia as bad as last Dec/Jan. Well, yesterday, we spent 4 houts in the ER because he was complaining of a headache, backache, and had a temp of 102.5 through the night. His primary care physician thought gallbladder or kidney/bladder infection. He's got a right lower lobe (RLL) pneumonia!!! No coughing/congestion/ head cold ........ but he has pneumonia again!!! They gave him an IV antibiotic there in the ER and sent him home with 10 days worth.

His rheumatologist doesn't understand why he's so sickly, either, and ordered all the extra blood tests. The only thing that came back out of range was his low Vitamin D level.

Are the rest of you like that........no colds, etc....just bypass GO and head straight to pneumonia? Little issues turn into major ones?

Take care, Everyone, and thanks for listening.
Margaret

#2 Sherion

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Posted 13 December 2008 - 02:59 PM

Margaret,
I am so sorry that Gareth is ill again. It seems like when it rains it pours. I was told that if you get pneumonia after getting the shot that it will be milder and not as severe. As far as the ulcer, the last endoscope I had showed an ulcer and I had NO pain. It is unusual to not have pain with an ulcer, but it can happen.
Sure hope he feels better soon.

Sherion

#3 Kamlesh

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Posted 13 December 2008 - 04:19 PM

Margaret,

I hope Gareth feels good soon!
I used to get cold, flu, fever, pneumonia almost every month when scleroderma was at peak.
When I was diagnosed with scleroderma my pulmonary specialist gave me pneumonia shot right away.
I am sure Gareth will be healthy once again. Keep on working on it and something will click.
I am originally from Chicago, but now when I visit Chicago or Dallas, I feel right away little sick. My tolerance for low or high temperature as well as high humidity is pretty low.

I don’t know even if you have flexibility, but have you tried low humidity and moderate climate?
I believe I have been helped a lot due to climate in Northern California.

Gareth will be in my thoughts!
Kind regards,

Kamlesh


#4 Sweet

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Posted 13 December 2008 - 06:26 PM

Hey Margaret,

Oh no, I am so sorry Gareth is sick again. I've had numerous ulcers and yes, they do hurt. I would describe it as a hot poker being turned around and around in my stomach.

I do hope he starts feeling better soon.

Big ole hugs to you for trying so hard in this situation. He's a lucky boy to have you.
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#5 red

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Posted 14 December 2008 - 12:41 AM

Margaret,
I am so sorry that Gareth is having such a bad year and nasty bout with pneumonia. I get bronchitis nearly every year, usually after a cold that I can't shake (I have asthma as well which probably contributes to this), but I had pneumonia 2 times similar to what you've described - no cold symptoms but quick onset of fever/chills, headache, difficulty breathing - my doctor felt those pneumonias were due to aspiration of reflux.
I've also had ulcers and I regret to tell you they do hurt quite a bit.
I'm hoping Gareth is feeling much better soon, keep us posted! Do take care to get as much rest as you can yourself to stay healthy!
red

#6 Snowbird

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Posted 14 December 2008 - 04:17 AM

Hi Margaret

I hope Gareth gets over this quickly and feels much, much better soon! Take care!
Sending good wishes your way!

#7 LisaBulman

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Posted 14 December 2008 - 04:21 AM

Oh Margaret! I am so sorry that Gareth has had such a horrible year! No one should have to go through all of that! I am shocked that he has pneumonia since he received the shot. What did they say about that? My two year old niece has it too. :(

Hopefully this is it for him and he'll turn the corner. Wishing both of you a happyy, healthy NEW YEAR!!

Hugs,
Lisa
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#8 Margaret

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Posted 14 December 2008 - 05:52 AM

<<but I had pneumonia 2 times similar to what you've described - no cold symptoms but quick onset of fever/chills, headache, difficulty breathing - my doctor felt those pneumonias were due to aspiration of reflux.
I've also had ulcers and I regret to tell you they do hurt quite a bit.>>

Hi, Everyone ,

Thanks for the encourgagement. About aspiration pneumonia.....don't you have to have a choking episode first to get that? What happens to the food or acid once it is in the lungs? Sorry....dumb questions.

His primary care physician changed his GERD meds in Oct. because he would point to his stomach and tell me "on fire" or "stomach bleeding." The new gastro doctor wants his open wound healed before doing the endoscopy. I will call the gastro doctor on Monday and tell him about the pneumonia and ask whether it really could be aspiration pneumonia. His primary care physician does want to see him tomorrow concerning the pneumonia.

Kamlesh...we use to live in Brea, California, for 3 years.....15 years ago or so. Anyways, we had the Landers/Big bear earthquakes right after we moved there and, then, the Northridge earthquake. After that one, I told my dear husband *I* was heading back east!!! He put in for a job transfer and we moved out of California. Sorry.......loved the weather but couldn't handle the earthquakes!!! I will take a blizzard over an earthquake any day....at least you can prepare for them and know they are coming!!!

Thanks again for the help.
Take care, Everyone.
Margaret

#9 Cheryle

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Posted 14 December 2008 - 08:48 AM

Margaret,
I hope Gareth bounces back quickly.

I have UCTD too. I assume he is not on steroids, because I know I can't take the Pneumonia vaccine because I'm on steroids and in the paperwork that comes with the vaccine it states not to take one for two years after stopping steroids. I read it all, including the fine print because my primary care physician thought I should have it. He's more parinoid on germs than any of my other doctors. Since I'm immune suppressed, he won't let me sit in the waiting room with all the sickie folks, but has me tell the lady when I check in, to take me back to a vacant exam room until he can get to me.

There is something called silent aspiration to the lungs, that is caused by microscopic droplets from the stomach/ esophagus. I know of a lady that never knew that she had any reflux at all, but her lungs are in horrible shape from silent aspiration. She is on Oxygen 24/7.

I think the Prilosec is a better medication for some of us. Zantac didn't do a thing to help me. I do hope he gets better results. Nexium helps to heal the stomach/ esophagus as it works and my gastro put me on that once the Prilosec stopped working well.

Keep us updated on how Gareth is.
Take care,
Cheryle

#10 red

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Posted 14 December 2008 - 10:20 AM

Hi Margaret,
(Questions are never dumb! :) I had a Nissen fundoplication last month which has all but eliminated the horrible reflux, but before the surgery, the reflux was so bad that nearly every night, shortly after I fell asleep, I would be awakened by the reflux coming up. (This was despite Nexium 2x/day, plus Zantac at night, and being propped up on 5 or 6 pillows.) On the good nights, it would just be heartburn, but on the bad nights I could feel the reflux in my windpipe and the bronchial tubes - it would make me choke, cough, and it would burn with each breath. Sometimes this would last for a few days, burning every time I coughed up more of the reflux out of the lungs. I suppose the acid or fluid causes inflammation in the lungs, and probably an infection if one isn't able to cough it all back out. (Sorry, sounds gross as I read this back to myself!!)
red

#11 smac0719

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Posted 14 December 2008 - 01:29 PM

Hi Margaret. You really have had a go of it this year. I have had my bouts with pneumonia, but none since the sclero diagnosis. I truly hope Gareth gets better soon. The both of you are in my thoughts.
I may have Scleroderma, but Scleroderma doesn't have me!

#12 Shelley Ensz

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Posted 15 December 2008 - 04:08 AM

Hi Margaret,

I'm very sorry Gareth has pneumonia. Please give him an extra warm hug, just from me!
Warm Hugs,

Shelley Ensz
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#13 Margaret

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Posted 15 December 2008 - 11:15 AM

<<my doctor felt those pneumonias were due to aspiration of reflux.>>

Hi red ,

I asked Gareth's primary care physician today about aspiration pneumonia and he said that usually appears in the central part of the lungs. Gareth's is the RLL. It's just *one of those things*. He's doing OK now and the doctor said to finish the antibiotics and get another chest X-ray one week after he finishes. Thanks for all the encouragement, everyone. I appreciate it so much.

Take care, Everyone.
Margaret

#14 Jeannie McClelland

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Posted 16 December 2008 - 05:31 AM

Ah Margaret, I'm so sorry Gareth is having so many problems~ I know it's got to be horribly hard on you, too.

Besides love and warm hugs, all I've got to offer is to wonder if you have a wound clinic nearby? They can sometimes work wonders.

As far as pneumonia goes, I was diagnosed with it twice (by x-ray and history) before I got the diagnosis of Ssc sine Sc and all the other stuff. They now wonder if it was really pneumonia and not just the pulmonary fibrosis.

Hugs and plenty of 'em,
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#15 Margaret

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Posted 16 December 2008 - 07:31 AM

<They now wonder if it was really pneumonia and not just the pulmonary fibrosis.>>

Jeannie ,

Wouldn't they be able to distinguish pneumo from fibrosis? I would assume they looked differently. Anybody got an answer for that?

Take care, Everyone.
Margaret

#16 canon

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Posted 16 December 2008 - 06:44 PM

Hi Margaret,

Sorry Gareth has been so sick and am glad to hear he is doing better. Before anyone tried to diagnose my problems I was sick all the time. I always had a low grade temp. A cold would turn into acute bronchitis and a 1 time pneumonia. Flu would last all winter even with the flu shot. The GI bugs would be torment and all my labs would be normal except for a few scattered no big things. I had walking pneumonia and looked as healthy as could be. Once in awhile even now things become exacerated like the pneumonia shot last month turned into a very nasty cellulitis (skin infection) but 5 years ago with the 1st pneumonia shot nothing happened. This winter so far I have had the office cold and GI bug which I just got over last week but actually did better than most in rebounding. Got my hand sanitizer out before it gets me again. I use the hand sanitizer when I go shopping too and wash the cart handle with it if there are no wipes in the store. These bugs started early this year and caught me or I was slow this year.

As far as lung fibrosis I believe aspirations can cause lung fibrosis but have no idea what the difference is on x-rays. Take care Margaret and you are really a good mother and kind person.

With gentle thoughts,

Judy
A happy heart is good medicine.

#17 Margaret

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Posted 27 December 2008 - 03:52 AM

Good morning to Everyone ,

Gareth finished up his Levaquin on Monday for the pneumo in his LLL and, by Thurs night, was complaining of pain in his RLL side. I figured it was from his stomach because he had 2 cans of pop throughout the day for holiday and I/he knows that he can't handle it and gets very gaseous from it. Well, he woke up Fri morning in a lot of pain, so off to the doctor's again. An X-ray showed "infiltates in both LL areas of the lungs consistent with pneumonia"!!! So the doctor gave him a shot of antibiotics there and sent him home with Z-pak. How in the world he went from pneumo in LLL to pneumo in both LLs, while on the Levaquin, is over my head!!!

Also, since this wasn't his normal primary care physician, I asked this doctor how they tell pul. fibrosis from pneumo infiltration on X-rays? He said that in the beginning they both look the same.....why? So, I explained about his UCTD and how he goes straight into 'pneumo' without having a cold, cough, flu, etc. Well, that sure got his attention!!! He is setting Gareth up with a Pul Spec to review all his X-rays from the past 2 years and see if something else isn't going on to cause these pneumonias. I know that his usual primary care physician would have done the same, but he won't be back till next week.

Happy Holidays to Everyone.
Margaret

#18 gigi08

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Posted 27 December 2008 - 04:58 PM

Margaret,
So sorry to hear that Gareth is having so many problems but so glad that you got a Dr. that is going to do more to find out what is going on. My thoughts are with you and Gareth. Keep us updated as to how he is doing.
Gigi
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#19 LisaBulman

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Posted 28 December 2008 - 04:27 AM

Margaret,
You two just can't catch a break! Not that I want you either of you to actually break anything! :blink:

Hopefully a specialist will be able to sort this out and you can get more in depth answers to what is going on. Please keep us posted. I am very interested to hear what the specialist has to say. Try to relax and have a happy and HEALTHY New Year.

Hugs,
Lisa
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#20 Margaret

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Posted 28 December 2008 - 12:45 PM

Hi Everyone,

For those of you who believe, I sure would appreciate it if you kept Gareth in your thoughts. Just got home to grab some clothes, etc. Gareth spent the day in the ER with severe pain on the left side. Seems the pneumonia has gotten worse on that side and they *think* he has pleuritis (sp) on that side. He's been admitted for stronger IV antibiotics. I'm heading back --- I always stay with him in the hospital.

Thanks,
Margaret