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Chest Problems


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#1 Sandy B

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Posted 02 April 2012 - 08:40 AM

Hi All,

Haven't signed in for a while, still recovering from the surgery last year, but need a bit of input and advice from you guys and girls.

You may remember that last August I had an oesophagectomy due to cancer as a results of Barrett's. The initial surgery went okay, but it quickly became apparent things were going wrong and I had to have another major operation two weeks later as the top quadrant of my stomach had developed gangrene. My lungs took quite a hammering due to both lots of surgery, extreme weight loss and muscle loss, all in all I was in hospital for nearly sixteen weeks.

Recovery has been very slow and my tolerance to exercise poor due to my lungs and muscle loss. Over the months I gradually improved to a point, due to grit determination and a need to get back to some sort of normality, but I seemed to reach a plateau two or three months back and now things are declining.

I have had a dry tickly cough since October which has gradually got worse and my ribs seem to creak on the left hand side (it could just be an age thing or maybe they need a good oiling!!!) and my chest feels tight in the centre which gets worse the more I try to push myself and when I do it gets tighter and I can feel my heart racing away. The only way I can describe the tightness is that it's like someone pressing down on my chest. When I cough, sneeze or hiccup I generally have to brace myself for the gripping pain. By pushing myself, I don't mean jogging or cycling or anyhing energetic like that, but simple tasks like washing up, having a shower and getting dressed, or a very slow gentle walk around the block, which isn't far. So my exercise tolerance is not that great, but compared to how it was when I was in hospital when I couldn't even get out of bed or stand there has been a vast improvement.

I have seen a chest consultant who was very non committal, but booked a chest xray and lung function tests based on what I have told him and said depending on the results would book a CT scan. Well I had the xray and lung function tests last month and my DLCO is now 42% and consequently I have a scan next week.

What I am wondering is, does anyone have any ideas what this might be, does it sound like pulmonary fibrosis or pulmonary hypertension to you? Tests at the beginning of last year showed I had a leaky heart valve on the right hand side between the top and bottom chamber's, which didn't require treatment at the time and scans showed I had scarring on my lungs. To me, my current problems feel like scleroderma is trying to rear its ugly head again and no longer feels like the inital issues I had due to the surgery, so I would be very grateful for any input at all on the subject. My next appointment with the consultant isn't until June 23rd, but since having the lung function tests, he has written to me and said he would contact me after I have had the scan. I know it's not long to wait until the scan, but just feeling a bit jittery I guess and in need of some moral support.

Many thanks to you all for being there.

Sandy B

#2 Joelf

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Posted 02 April 2012 - 02:00 PM

Hi Sandy,

It's great to hear from you again and I'm sorry that your recovery from your operation has been so slow.

I have pulmonary fibrosis (though not pulmonary hypertension, thankfully) but I must admit I didn't notice a tightness of my chest in the beginning. My main symptoms were a shortage of breath upon exertion and a dry cough which I could actually feel in my lungs when I coughed, rather than in my chest as would be the case with a chest infection. I didn't experience the pain you describe nor the racing heart.

I'm sorry that I can't give you more helpful advice, but it's a good thing that you've had the lung function tests and that you're having the CT scan next week, as at least that will give your consultant a better view of the overall picture.

Here's a comforting :emoticons-group-hug: and I do hope you get some answers when you see your consultant; be sure to post and let us know how you get on, won't you?

Best wishes,

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#3 Amanda Thorpe

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Posted 02 April 2012 - 02:45 PM

Hello SandyB

Boy have you gone through the wringer! I have no idea what is causing the symptoms but have always understood that anything that feels like pressure in the middle of the chest is maybe heart related, I say that having a mother who has survived 3 heart attacks. I also thought that the main indicator of pulmonary hypertension/fibrosis was shortness of breath which you have not mentioned.

Ultimately I have no idea and I so hope that your consultant has good news for you at best, just news at worst. I know they say no news is good news but that's not the case when you're ill.

Take care.
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#4 Sandy B

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Posted 03 April 2012 - 12:49 AM

Hi Joelf and Amanda,

Thankyou for your replies, I have reread my post and you are quite right I did not mention breathlessness, which is one of the main reasons my exercise tolerance isn't brilliant. Can't think why I forgot to mention it as it is quite an issue, can only think it was a lack of oxygen to the brain!!!

Amanda, I think a wringer might have been more preferable, less painful. I had five drainage tubes in my chest at one time while I was in hospital, which caused a great deal of pain, four attached to buckets at the side of the bed and one to a bag. I had what they call a chyle leak after the operation so was losing a lot of fluid. Milking parlour springs to mind when I think of all those buckets!!!

I was on oxygen for several weeks on the ward and my breathing and exercise levels at first were pretty much non existant, but did improve and continued to when I came home, to a point, but everything is heading southwards again. Like you said Amanda, chest pains you associate with the heart, which is what is worrying most me at the moment and the more breathless I get, the tighter my chest gets; vicious circle springs to mind, so I try to chill out as much as possible so as not to make things worse.

Just counting down the days until my appointment, will keep you posted.

Sandy B

#5 Amanda Thorpe

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Posted 03 April 2012 - 12:33 PM

Hello SandyB

Yes, please try to chill out, easier said than done I know when your breathing is affected and you are having chest pain, I remember prior to my myocardial fibrosis & heart failure diagnosis, living with both symptoms, all I actually wanted was to know what was causing them, it's the not knowing that's worse, in my opinion.

Take care.
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#6 miocean

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Posted 03 April 2012 - 08:33 PM

Dear Sandy,

Part of the wonderful package of scleroderma is it has a way of rearing it's ugly head. You think one thing gets fixed and another pops up. Right around the time I had my kidney transplant my lungs significantly worsened. On the other hand, something can totally go away, like my skin hardness going from 45 -0.

I can only advise you based on my own experience. My lung issues sound similar to yours. I have Interstitial Lung Disease and a DCLO of 38%. Is the previous scarring on your lungs fibrosis? You need to ask at the next scan exactly what it is and if it has progressed. Does it look like ground glass on the tests? That is what my fibrosis looks like. Get copies of the old scan and the new one, if possible on a disk and the written report. Is the "chest doctor" a pulmonologist? I would also request that the CT scan be done without contrast. It can negatively impact the kidneys. All of my scans are done without it and the radiologist still gets the information needed. I would see if an Echocardiogram can be done to find out more about the leaky heart valve. The dry cough, shortness of breath, and difficulty with exertion all sound familiar to me for lung fibrosis but the chest pain does not. Did they do anything to your ribs in your previous hospitalization that could be causing you to still have pain?

Only a medical professional can evaluate your lungs and heart based on testing. After the lung tests and Echo if there is any question of pulmonary hypertension the next test would be a right heart catherization. I am so sorry you have to go through all of this after everything you have been through. I know all the testing and doctors is exhausting and worrisome and even harder after all you've been through.

I'll be looking for your update and for now don't push yourself. Be gentle with yourself.

miocean
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#7 debonair susie

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Posted 05 April 2012 - 12:11 PM

Hi Sandy,

I sure can appreciate your feeling jittery, not knowing what is happening. Though this is easier said than done, becoming anxious can expend your energy, which I'm sure you are aware of.

Standing by and sending you loads and loads of :emoticons-group-hug: s. Also sending postive thoughts your way; Thank You for keeping us up to speed with what is going on with you.
Special Hugs,

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