Rheumatic Fever and Lung Involvement

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Nancy

Well-known member
Joined
Jun 9, 2001
Messages
9,896
Location
upstate New York
My husband has had rheumatic fever as a youth and has had 3 valve surgeries as a result of that, but in addition, he has also had lung problems. He never smoked in his life, never worked with asbestos, never had asthma or other chronic lung problems.

But he has had 2 lung surgeries one for a benign tumor, (an amyloidoma) and the other lung had partially collapsed because scar tissue had formed a "trapped lung". He had to have a decortication on that lung.

My question is for others on this site who have had rheumatic fever. Have any of you experienced lung problems in addition to your heart problems, which seem to have no known origin?

I was wondering if rheumatic fever can also cause lung diseases later in life.
 
Nancy:

I thought I would add this, although you and I wrote previously about lung issues.
When my husband was scheduled for surgery, amonst the MANY tests that were done, was a chest x-ray. The x-ray showed two scarred areas. One was newer. We were told that sometimes a person gets "something" into the lung, and the body forms scar tissue around it, forming a tumor-like area, totally benign. I hope I remember this right. They told us one was older, but one was newer, and they had to do a number of additional tests as it was close to bone. (????) and somewhat hidden. I am hoping I am remembering this correctly. I too will be interested in what others have to say. - Marybeth
 
Hey Nancy.

Like your husbanc I too have had Rhuematic fever twice in my youth, and subsequently had my aortice valve replace 3 times, currently running a St. Judes, and a Ring on the mitral for a repair. I have had no documented issues with my lungs, but do have bouts with chest pain, which has been attributed to scar tissue or to Plurasy (sorry on the spelling) none of which show up o xray. The pain is more like a sorness around the heart and sore to the touch under the left arm. NO coffee and Tylenol make it go away in 7-10 days.

sam
 
I still say Joe's a Saint!

I still say Joe's a Saint!

Having had Rheumatic Fever, I have luckily not experienced any lung problems.

With all the issues and experiences that Joe has been through, I believe he deserves to be called a "saint!" Nancy, how does he do it?! I wouldn't like being in his shoes, although it seems like he actually spends more time in hospital booties!

Anyway, Joe gives me strength. Every time I get hung up on a Coumadin issue, I think about how he has managed for over 20 years! Or is it 24 years?

Sam, I notice you're "running" with a St. Jude. Just struck me funny as you sound like a race car! You should get a "Powered by St. Jude" bumper sticker!

You guys hang in there!
 
Hi Perry-

Well, Saint Joe's been on Coumadin for 25 years.. When you've been as sick as often as he has been all of your life, or most of it, you don't even remember how it feels to be normal.

When I ask him if he feels OK, he just says "How do I know?".

The main thing that has gotten him through such devastating things is his sense of humor. I have a good one too. And both of us have a rather dark and "warped" humor. LOL

You can't believe the things we laugh about, it would scare you.

I'll give you a for instance, when we met with the anesthesiologist this last time, after he got through all his long explanations, he asked if we had any questions, and I said no, but it was his job to make sure the surgeon didn't kill Joe, and it was also his job to pull him out of it." I thought he would pass out. He's a very uptight guy. As we were leaving, he said "I'll be polite and walk you to the door", and Joe said, "why should you be polite, no one else has been."

He waved to us and said "You're a wild and crazy couple!"

Of course, under it all we were very worried and since this would be his 3rd heart valve surgery, we didn't know what the outcome would be. We knew it was serious, but I guess we had turned over the responsibilities to the ones who could do something about it, the surgeon and his team.

So even in the most dire circumstances, if you can loosen up and lighten up, it helps relieve lots of tension. A lot of people don't understand that. You really don't have to worry ALL the time, only some of the time.

So laugh, watch the Three Stooges. Enjoy what you can.
 
2 bouts RHF at about 5 and 13 years of age

2 bouts RHF at about 5 and 13 years of age

Straight ahead, uncomplicated AVR at CCF, April 2000, +1-2 continuing MV leak. Age 59

No lung involvement, at least not yet.

There's got to be a special place, even if there's no afterlife, a separate and more agreeable alternate life, a fluffy pillowed haven, somehow, somewhere for folks like Joe, and you.
 
Joe's not the only "Saint"

Joe's not the only "Saint"

Nancy,

I agree with Perry that Joe must be a "Saint" for going through all that he has, and maintaining a sharp sense of humor through it all.

It must have very difficult for you going through it with him. We can all tell that you were there every step of the way, and I suspect it would have been much more difficult for him without you.

Your warm and reassuring posts are helpful to all of us who are looking for that support, even if they aren't written specifically to us as individuals. How great it must be for Joe to have you there with him all the time.

I'd like to take this oppostunity to nominate you for sainthood too.:)

All the best to you and Joe.

Ron
 
Nancy - I had Rheumatic Fever back in 1963. It caused my valve damage, but no lung problems. I think Joe just had a little bad luck. Of course, that doesn't matter that much if you have the right attitude. Good luck as always to Joe, and keep your humor.
 
Hi Nancy,

I was never diagnosed with Rheumatic Fever as a child but my Cardiologist determined I did have it. It caused the Mitral Valve damage and is causing Aortic Valve damage also.
In my chest x-rays I had two areas of scarring on my lungs. The Doctor pointed out that this helped him to diagnose the Rheumatic Heart Disease. Evidently it is common for scarring to appear on the lungs with this condition.
He wasn't concerned about it so hopefully (cross my fingers and toes) I won't have to worry about it for many Decades.
RHD is a nasty, nasty #%@*.

Take Care,

Tammy
 
That's interesting Tammy. I've searched all over the internet and can't come up with much, there are some allusions to it , but it is something I will pursue because IMHO it's all related, plus your doctor confirmed it.
 
Hi Nancy, I thought Rhuematic fever was rare!!!!!!!!! They told me that these days only about 1 in 1,000,000 get it. Hmmm. Anyhow, I wanted to ask you, does Joe have alpha 1 deficiency? It's rare, also, but my mom has it, and what it is, is a deficiency of a protein in you blood that can either give you emphysema, or even liver disease. My mom has had three thorocotomies, because of lung collapses. She never had rhuematic fever, but i do know that everything your heart does affects your lungs and every other major organ in your body. Scary, huh? We never knew my heart was bad, and every organ above my waist failed on me. I also have the alpha 1 dificiency, but not to the extent that my mom has. I never will. I have 60% of the protein in my blood, and my mom has none. Just wondering.
 
Hi Again.

Hi Again.

Hi Nancy and all.

I will ask my cardiologist when I go next week. Although, I am not seeing the same one that gave me the info I shared above. In my case the white spots that showed on the x-ray were very small and I do recall my Doctor at the time saying it was nothing to be concerned about. It is interesting how RHD effects each of us differently. I would also be interested in any good research you dig up.
Well you and Saint Joe have a Great weekend....

Ta'ta'

Tammy
MVR 04/06/89
My valve will be a teenager this year (I hope it doesn't start acting like my kids did when they turned 13) LOL
 
Just spent the evening searching the web for info. which relates to Rheumatic Fever and lung diseases.

So far this is what I've found. It relates to pleurisy. I'm still searching.

http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/23663.html

There is also a condition called rheumatic pneumonia, but the information is sketchy and seems outdated.

There was also a little information related to lupus which apparently used to be confused with rheumaic fever. Lupus can cause heart valve problems and lung diseases.
 
Mu husband is one of eleven children. 5 boys. WHen he was 18, two of his brothers were in the hospital (ages 10 and 12) with rheumatic fever. (one had St. Vitus Dance) - He had a sore throat, went to the Doctor, who said..no not strep. One week later, he was in the hospital, and in October 2001 had two valves replaced. A fourth brother came down with it two weeks later. Four boys, all in the same family, having rheumatic fever at the same time. It's kind of hard to convince me that it is rare.....perhaps today, as children get much much better health care.
He also has two areas (spots) on his lungs. Sounds as though these are related as well.
Unbelievable.

Marybeth
 
Hi Joy-

I think that today rheumatic fever is considered out of the ordinary because of strep testing and antibiotics. I'm not sure it's rare though. I seem to run into a lot of people who've had it, some young ones also. I sometimes really worry that doctors are not going to prescribe antibiotics for possible strep, because there is such a scare about developing antibiotic resistant strains. I always urge my daughters to have their children tested for possible strep when they have a sore throat, because I know first hand about what this can lead to and it's not pretty. One of my grandchildren is susceptible to strep, so hopefully my daughter will advocate for him. His doctors have missed a couple of strep infections in the past and only did the test when my daughter insisted on it.

When Joe had rheumatic fever, penicillin had just started to be used for infections, and he was one of the unlucky ones, whose doctor did not prescribe it. He got sulpha drugs instead. He spent a year in the hospital. I'm sure it devastated his system.

Joy, I've never heard about the alpha 1 deficiency, but Joe doesn't have emphysema or liver disease.

The scarring on Joe's lungs and the rare benign tumor, are mysterious to the doctors. They just treat the condition and try to make it better. But for general knowledge, I'd sure like to find a cause for the scarring. It's helps to understand what he's dealing with.
 
We had three in our family that had rhuematic fever. My grandmother had it and died when she was 31 in 1962(I wasn't even thought of then)and my aunt, who is still alive...I think she is 50 had it, and has just a little heart murmur. I also had St. Vitus dance, also known ad sydenham's chorea. We had no idea what it was until I went to a nuerologist in MN that actually knew what he was talking about. They hadn't seen that in 40 years. I am 24, so it's scary to think that young people can actually get that stuff these days. Perhaps that's why I will always take my kids to the doctor, no matter how dumb I look. I think it is just rare now since technology is better. I had scarlet fever when i was a kid, also. strange, huh?
 
Rheumatic Fever & Lung Problems

Rheumatic Fever & Lung Problems

Hi Nancy,

I am another one who had RF and ended up with Mitral Stenosis and Aortic Regurgitation. Long standing Mitral Stenosis can lead to pulmonary hypertension and permanent lung damage. It shows up on the x-rays of the lungs and is called kerby-B lines. Has your husband ever been diagnosed with PH. I can't remember if he had MS, but he did have the MV replaced?

I think someone said it earlier that any type of heart disease is hard on the lungs.....
fdeg
 
Hi fdeg-

Yes, Joe has been diagnosed with secondary pulmonary hypertension and he also has had his mitral valve replaced as well as his aortic. I'm not sure if the pulmonary hypertension would be the cause of the benign lung tumor or the scarred up lungs though. But anything is possible.

RF is such a terrible disease.
 
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