I was discharged from hospital a week ago last Tuesday. I was diagnosed with four new back fractures to add to the three I had two years ago. I have got osteoporosis quite badly so that explains it. I am on bone treatment and six months ago I changed from teraparatide injections to Deosumab. I questioned why my bones had gone and was told the Denosumab takes a year to two to start to work.
Anyway that was not what I would like to know. I thought I would ask you clever people on here. If you can shed any light on what this means.
My discharge sheet says I haveNo significant lymphadenopathy seen. Bilateral Interstitial changes are unchanged as is a 5mm Pulmonary nodule at the left lung base.
Obviously it’s regards to my lungs.
I must have had this when I was discharged after pneumonia and aspergillosis two years ago. They have checked my fingers for clubbing a couple of times and I wondered why because obviously clubbed fingers and interstitial lungs are symptoms of Pulmonary fibrosis which is what my Husband had.
Has anyone any clues.
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Mavary
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Thanks for your good wishes. I have not been told anything at all. It was only when I read the discharge I found out I had a problem. I’ve always thought my breathing wasn’t very good but am surprised I wasn’t told why and had the discharge form explained.
Hopefully someone will be along soon to explain it. Though someone at the hospital surely should have talked to you about it and explained it.
Not remotely medically qualified, but the fact that they say the interstitial changes and node are unchanged means that they are likely leftovers from aspergillosis and the pneumonia as I understand things. Any chest infection, even a relatively mild one, can cause permanent changes to the lungs, and aspergillosis is well known to be a culprit for lung damage. If it was a genuine ILD like IPF, over time the imagery would change due to the progressive nature, particularly without any kind of treatment, so the fact that it’s not changing is actually reassuring in my opinion.
Thank you. That is what I wanted to know. I can’t believe they don’t tell you these things. I’ve got a very inquiring mind and like to know things like that.
Glad it helped, and I absolutely agree - I think they quite often take for granted that we haven’t been to medical school for 7 years. I spend half my life researching and reading up on things that are obvious to someone that’s medically qualified, and not at all to the rest of us! I would definitely be reassured myself by the fact the imaging is unchanged.
Just to say I have always been interested in medical things. My Mother said I had to follow my Sisters into the factory when I left school and I wanted to be a nurse. I was married at eighteen and had my first child just before my twentieth. In those days being a nurse was out of the question. I wouldn’t have been able to get to a hospital and really I wasn’t clever enough. I’ve learnt a lot since and have retained my interest in anything medical. I look up things and treatments all the time. All I could find on Interstitial was Pulmonary Fibrosis and I never found anything on Pulmonary nodule. I’ve been talking to the Osteoporosis Society and she asked the question of had I had a Secondary blood test which involves the thyroid. So I put the question to my Consultants Secretary. I received a letter to book with my Dr to get a blood test and let the Consultant know when it’s done. It pays to know a little bit.
I had an ambulance young fellow (who thought he was the bees knees) told me I look up too much. I told him not to dare to put that down while he was writing. I’ll never know if he did.
Hi Charlie G. My Husband had IPF. So that is why the name Interstitial rang a bell with me. They kept getting me to go back to see the consultant and he checked my fingers for clubbing every time. They did it this time when I went in. Of course my brain is going to work overtime as I know what they are looking for. I never even heard of IPF before my Husband had it. I don’t like the sound of a pulmonary node either. They keep asking me if I cough up any blood. So you can see why I’m concerned.
Basically you have no enlargement of your lymph glands which can indicate an underlying condition which is a good thing. From your last last report there as been no interstitial changes which in your case means any damage, scaring etc as not progressed or been observed. Which again is a good thing. Nodules can be clinically significant or not. By the wording of the report it was made as an observation for the information of your GP not as something that required action to be taken. Obviously I am not an expert but I would not worried. If you have concerns the best person to speak to is your GP.
I concur with both posts by Charlie_G and Badbessie that you really should not be worried at all. I would be more than happy to to receive a report like that about my own lungs.
Thank you. I expected them to say scarring as I’ve had pneumonia three times in my life and also TB. What worried me was the interstitial and the pulmonary nodule.
Hope you feel reassured with the replies from Charlie and 2greys M. I'm Im sorry I'm no help at all, just wish you well and say please take care of your precious self and hope the fractures aren't too painful.
Very best wishes and hope that Denusumab starts working very soon 🙏 xxx P
Thank you Peege. I’m ok with the fractures. It’s only if I’ve got to wash up or carry anything that it really aches. I’ve already shrunk three inches so soon I’m going to be like a jelly slithering along the floor 😆😂
I found out I have COPD from a throwaway comment on my hospital discharge sheet a few years ago. following my first bout of pneumonia. I took it up with my GP who said, 'No you don't have COPD,' so I referred him to the letter and he was taken aback by it as it was written so insignificantly that he had missed it.
I then had a spirometry test which confirmed it and have gone on to be diagnosed with Bronchiectasis as well. I already had asthma.
So whilst I completely agree with what others have said about your report being good news rather than bad, I would still be inclined to speak to my GP if I were you and they can clarify things further and ensure that the right information is in your notes.
Good luck with the bone meds. Maybe, speak to your GP for some better information about that too. xx Moy
Thanks Moy. I will speak to my GP when I see her. We shouldn’t have to find out things like this by what we read. We should be told especially if it’s nothing to worry about. Xx
I'm fed up with spending hours every week (at the moment) chasing procedures ( that haven't been booked), test results (that haven't been downloaded to the GP), medication changes (that haven't been shared with other medical people involved) and, like you, having to follow up on stuff I have seen written in letters to my GP that have not been discussed with me. Aaaargh!
Oh that’s awful. I thought I was having enough trouble.
I’m a little bit cross that I didn’t know about it two years ago. Had I gone on holiday abroad and was taken I’ll with my lungs I probably wouldn’t have been able to claim as I hadn’t informed them. Not that I intend going abroad but you know what I mean.
I know exactly what you mean. It was the first thing I thought of when I had my first knowledge of having COPD as we had recently returned from a holiday in Crete where I did, indeed, have some breathing difficulties! I hadn't notified the insurance people because, like you, I didn't know!
To be fair, if I had read properly and carefully the tiny print in the discharge summary, (the whole letter was printed on paper a quarter of the size of A4) when I first got out of hospital, I would have known, but as I sent the copy to the GP and kept mine to read when I could focus enough to do so, it didn't happen until many weeks later.
I am getting older and much wiser about these things now. Talk about 'Live and Learn'! xx Moy
Hi Mavary. The previous posts have answered your question about lung problems. Having had 4 further vertebral compressions fractures must have been pretty painful for you, hope things are improving and you have less pain now. Like you, I have had 2/3 comprehensive fractures, then 3 years ago I was started on Denusomab and fortunately have had no further fractures. So hoping this will work for you. Good luck. Carol xxx
Hi Carol. I’ve now had seven back fractures in two two and a half years. I had three two years ago and now four. They put me on Teraparatide for two years after my first three and I had no problems. I’ve been on the Denosumab for five months and have now got another four fractures which makes the seven. On my discharge sheet it said the Denosumab has failed. I rang my Consultants secretary and she asked my Consultant who said it takes a year to two years to work. It hasn’t failed and I have to carry on with it. I had three fractures after taking steroids it must be two or three years ago. One of them then put me in hospital for twelve days. I couldn’t walk or stand. They are now saying my T12 is severe. The rest not so bad. It’s no fun getting older. Do you still get problems from your fractures?
Hi again, You really have had some pretty bad luck with your back Mavary. Not sure what else there is as I know you will be on Adcal for calcium and Vit D. Yes, I do have have pain from time to time, mainly spasms that hit, not nice, usually last a week or so before settling down. Do hope you can cope with pain and get effective medication. Carol xxx
My pain is more a terrific ache and it’s if I wash up, dust,clean the bathroom or even carry my handbag. I still do these things as I won’t let it beat me. I do stop and have a rest in between. It’s just a nuisance. I take calcichew tablets. One twice a day.
I understand, it's all consuming, as though your body is not being supported. You have to be strong to keep going and not let it take over, but have you not got strong painkillers when it's bad? xxx
No because if I sit and rest for a few minutes I can continue doing what I was doing. I don’t call it pain I call it a bad ache that tells me to rest or my breathing gets bad because of the aching. I went into hospital because of my breathing. I saw my Dr and she could hear me breathing at the bottom of my lungs but not the top. But what I’ve realised since is it’s the ache in my back that makes the breathing worse. I have got a breathing problem if I try to hurry myself anyway.
Hi. You sound to be managing your problems, although not at all easy. I can only say I am thinking of you and that your back settles down for you. Take care. Carol xxx
Thank you Carol. Judging from the fractures I already have I don’t ever think the ache is going to go away. I’ve had it for a couple of years now although since my new fractures I can do less now than I could before without having to rest in between. It doesn’t matter how long it takes as long as it’s done. Xxx
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