Hi everyone I’ve been lurking in the background for a while but havnt introduced myself properly. Please bear with me as it’s a bit long winded & confusing. Basically I don’t know what to do & need some advice please.
I have RA diagnosed over 20 years ago & in November 2017 on screening for new Biologics for my RA my chest X Ray showed a small mass. I was given a High resolution CT & referred to a Lung Consultant. The results showed small vessel fibrosis & a further CT in 6 months was planned. Somehow I received a further CT appointment for March with my first appointment with a Consultant in April at an ILD clinic. He explained the mass was a nodule & said he had no idea why I was seeing him in the ILD clinic & would repeat the CT in 6 months which showed a much larger nodule in one lung & a cluster in the other plus ground glass effect. A further CT was requested for 3 months time. This one showed the ground glass had gone but the nodules remained. Again CT in 6 months requested. This one showed more ground glass everywhere plus a new 7mm nodule. Planned CT for 3 months but in the meantime I was admitted to hospital with a chest infection in November 2019 which I later was told was Pneumonia. I saw the Consultant on discharge & he arranged a further CT for 3 months. I was admitted once again with a further chest infection prior to this in December 2019 which I was later told was Pneumonia that had not resolved. My next CT was in February 2020 & then I had a call from the secretary to say my Consultant wanted to see me. Then Covid struck & all appointments were cancelled. I never received the results but in April I had a call from my Rheumatology nurse to say there was a letter on my notes saying that the CT showed Bronchiectasis & they needed to see me! Well I knew nothing about it so was pretty upset & not sure what to do. I then received a letter in June from the Consultant to say I only had Asthma & that he would do one final CT later in the year & then if the nodules were stable would discharge me. I then received a further letter in October 2020 to attend for an X-ray & said my last CT showed I still had Pneumonia & that I had had infections on every CT & treated with antibiotics which was not the case. It said the Radiologist reported Bronchiectasis but he didn’t think so. I had the X Ray in November then a phone call unexpectedly in January this year from the Consultant to say I’m complicated & that I have inflammation here there & everywhere. I told him I was coughing up phlegm every morning which he thought was reflux & said he would call in 6 months. In March I sent photos to my GP of the green sputum I was coughing up daily & he prescribed Doxycycline daily. I asked him if he should discuss this with my Consultant first.
In the middle of all this & after 5 years of funny turns I was eventually diagnosed with Epilepsy last November. I was aware that if I am on antibiotics then the Epilepsy meds are not as effective so contacted my epilepsy nurse who increased my dose.
In April my GP had a letter from a respiratory registrar to say they didn’t want me to start on Doxycycline but prescribed Carbocysteine & would arrange a phone appointment with a nurse to explain how to clear my lungs. I then was able to reduce my Epilepsy meds dose
Since then I’ve had Covid in August & now another virus which had badly affected my chest & ive done a PCR today as it feels just the same. I’ve had several courses of antibiotics this year prescribed by my GP over the phone. They are currently refusing to see me till the test results are back. I did a lateral flow test on Monday which was negative but apparently that’s not reliable enough.
The Carbocysteine are working really well & im managing to cough up sputum much more easily as it was dreadful before.
But now what? I havnt been seen since I was diagnosed in Feb 2020 & im struggling with no help from my GP at all. One minute im told I only have Asthma ( which I’ve had since childhood) then I’ve got inflammation then Bronchiectasis then I havnt or he doesn’t believe I have. But I really feel I need to be seen & im even wondering about asking for a second opinion. I totally understand the effect Covid has had on Respiratory appointments which is why I havnt so far contacted them as I don’t want to be a nuisance. Im currently in bed coughing like crazy feeling awful since Saturday.
I just wanted to ask what you would do in my situation. Should I push to be seen? My notes now say I have Bronchiectasis on them. I don’t even know anything much about it as havnt had the opportunity to speak to a dr.
Im sorry this is so long but wanted to paint a clear picture. Thanks for listening & for reading ( if you managed to get to the end ) 🤪