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Margaret

Pneumonia again

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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

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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

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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

 

 

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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

ISN Support Specialist

International Scleroderma Network (ISN)

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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

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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


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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<<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

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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

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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

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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!

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<<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

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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,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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<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

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