Just a follow up on my health

[Nch71]

Well its just a follow up after my ct scan...and the doctors still fo not know what is wrong with me. Its been 15 months now. And to be sick daily, not have an appetite. Ive got to go to another different hospital to see a gastroenterologist consultant. But i get pain in my left lung, have been since i had phneomonia last year in the june 2018, i sometimes get pain un both sides. Its very worrying and stressful not knowing what is wrong with me. How long is it suppose to take for lungs to heal after having pneumonia. I had it that bad i could off died the doctor said. My immune system was that low. And ive also looked up what gastroenterologist is, and as always it leads you to the c word (cancer). I have tried to keep positive but when you lose 3 stone in weight, it makes your mind wonder. Anyway does anyone know anything about gastroenterologist...and is it related to pneumonia.

[Caspiana]

Hello Nch71 👋😁

I should say nice to meet you. I am sorry to read you have had pneumonia for such a long time. Your lungs have taken quite a whacking. 😑 I have never had pneumonia so I can't really share any experience but I have had pluerisy and pain was awful. I would say though I have read of people having pain due to lung diseases. Especially during an infection.

Because of your weight loss I think seeing a gastroenterologist is a very good move. I would advise against reading too much on the internet. It will just scare you to death. A gastroenterologist commonly treats conditions like irritable bowel syndrome, heartburn, ulcers, colitis, polyps and yes cancer too. They will have a good look at your stomach, intestines, bowels , liver and bile ducts. But you mustn't jump to any conclusions. Don't worry too much right now. Go for the appointments and write down all your symptoms and questions so you are ready. From experience, I know that getting a firm diagnosis often takes time.

This is such a trying period for you. Please come here often if you'd like, and let us know how you are doing. I am thinking of you and keeping my fingers crossed. Take care.

Cas xx 🌼🌱☕

[Katinka46]

Caspiana as always is full of wisdom and very knowledgeable. I cannot add to what she said. I am a great believer in knowing as much as we can about our conditions; once we know what we are dealing with then we can do the best we can to manage it. Not knowing is always more worrying. All the best and let us know how things go.

K x

[knitter]

I do sympathise as I remember after I had double pneumonia I used to be sick most mornings, and sometimes during the day...I think it was the mucus collecting in my chest that brought it on. I also had chest pains for months after, and felt very poorly, and lost one and a half stone.

I guess your sputum has been tested many times to see if the infection has cleared......it took many courses of both oral and IV antibiotics , and many visits to hospital to sort my infection.

My friend and neighbour is asthmatic like me, and she has seen a gastroenterologist for tests....she suffers from acid reflux which makes her cough, and has been prescribed tablets to help.

Can you ask your health professional for nutritional advice after you get your results to help build up your strength. There are special drinks that can be prescribed .

The BLF has a helpline open during office hours....03000 030 555.

Thinking of you and sending best wishes. Hope you get better soon.

[offalot]

Hi, you do have my sympathy, 18 months is so long to be in doubt - and at last it's being recognised that doubt and anxiety make people ill, and recovery longer. Money is about the only real concern, but when it gets through to them that mental suffering due to delay costs them, things start happening.

Gastroenterology is do with your digestive system and gut, don't worry, you're getting somewhere with a specialist like that on your case.

At present I'm in hospital with what has been diagnosed as pneumonia, more blood tests, scan etc today to confirm that and whether recovery likely. Like you, my immune system is shot, and if no improvement then I'm probably on the way out, have palliative care team waiting in the wings. Or did they say WITH the wings? The ward I'm in, 4th move, is bad. I'd sworn I'd never go into hosp again, I have to fight for what I need. Meds get missed, not prescribed for a couple of days until I keep asking. I'm lactose intolerant but they cannot accommodate that and I have no control over my 24/7 oxygen. As my SATs drop like a stone with very little movement. Nurse call takes maybe 20 mins before response, I ask for O2 increased, but only a nurse can do that, so they go to find one, who might appear 20 mins later. I'm bedridden, cannot walk, so a captive. And the night I came in here, two nurses descended on me at 9pm saying they had come to tidy up and make me comfortable, having taken everything from me before they'd finished speaking. Then told me to roll over so they could check my bum for pressure sores. I declined, to be told "you're not at home now, you're in hospital and you'll do what you're told and obey the rules. I had not the breath, energy or resources to roll around, had been unable to sleep for 4 nights, but that cut no ice. So a slanging match followed, and then physical bullying, trying to push/pull me over. I shouted to stop, to leave me alone and hung on to the bedrail. I asked to see the sister. I AM the sister one said. Eventually they gave up, said they'd have to write it up as refused. Good, why not just do that without the verbal and physical bullying. Different crew next day, all ok, but I could do without stuff like that

[Ergendl in reply to offalot]

((((Hugs)))), offalot

[hypercat54 in reply to offalot]

Oh that's awful and you shouln't be treated like that. Can you have a word with the palliative care team? This I think is why it is so important to have relatives/friends visiting so you can have them watch out for your interests. x

[Ergendl]

You could ask to be referred to a dietitian, Nch71. They would take a diet history and guide you how to make the best of your diet in the circumstances you're in. All the best.

[twinkleyt]

You must be very strong to be able to stop 2 nurses from turning you over. 3 stone is a considerable amount of weight to lose .

Were you given steroids to help fight your weight loss and damaged immune system?

Were you given a contrast dye with the CT ?

It must be very frustrating for you when a diagnosis has not been found.

I hope one is soon found for you.

[SquirrelsHolt]

Morning Nch71 and I totally sympathize with you,having had double pneumonia and Pleurisy myself several years ago,before my diagnosis of COPD.

However,I'm struggling to give you any additional advice as I can see you've already had replies from some of our most knowledgeable members and believe me,they could tell quite a few consultants,what's what,lol! Seriously though,now you're going to see Mr Gastro,let's keep everything crossed that he/she will start things moving along quite swiftly. Please do keep in touch and I wish you a steady recovery.💞

[Nch71]

Thank you to all that have give me advice, it does help a little. But when the next hosptal appointment came, i was sent what they sent to my doctor and they havent even been looking at any off my lungs wich its worse in the left, but ive also been getting the odd pain in the right side but not as bad...im not sure wbat to think anymore. But all the tests ive had done and wasnt looking in right place.