Newly diagnosed with COP and NSIP

[SCM75]

Newly diagnosed with Cryptogenic Organising Pneumonia (COP) and NSIP

After 3 months in hospital 6 weeks antibiotic treatment for pneumonia 2 bronchoscopies, and finally lung biopsy I have a diagnosis. I’ve never had any previous lung condition in my life before and so its all brand new terminology and info to me.

Like others I have read on this site my condition seems to stem back to October 2017 when I had a very bad chest infection / virus Never seemed to get rid of it fully and was permanently run down resulting in other infections that required antibiotic treatment. In the New Year I felt very low in mood, very short of breath and anxious (looking back now I’m not sure if it was anxiety or COP that was creating this issue) I continued to get breathless on exertion to the point I had to lie down when I climbed the stairs at home. I never had a cough and my Dr gave me salbutamol inhalers which made no difference. Got so bad one night that I took myself to A&E convinced I had a really bad chest infection

Instead I was immediately admitted for treatment for double pneumonia due to my chest X-rays. Fast forward a few months and I’ve just started steroid 50mg per day prednisolone treatment Early days but very nervous about steroid treatment. After a long stay in hospital being home is quite frightening and I’ve lost confidence in knowing if I’m able to tell if I’m just having sweats and shakes from steroids or if I’m getting poorly Feel like I don’t know myself at all at the moment. In addition Im still drained and painful still from the biopsy almost 3 weeks ago. Wounds are still healing but rib and muscular pain can be debilitating. Already had bad reflux but now really struggling with the additional steroids, antibiotics and anti-histamine that I have been prescribed.

Would appreciate hearing any advice support from any others with the same conditions and also any advice for dealing with pain management after my lung biopsy

[Wendy_A]

Morning, I have COP along with other problems. The only advise I can give you is try not to put too much pressure on yourself to be how you were before becoming ill. It’s going to take a long time for you to accept your I’ll ess and what’s it means to you. You need to adapt the way you do things and do them at a much slower pace. Your body will adjust to the meds but again it all takes time. Are you on any stomach protectors like lanzoperzol or pantazoperzol ? These will stop any reflux. Always take your steroids with food that will hopefully stop any nausea. I’ve had my illnesses for 6 years now and accepted it for the most part, I’ve been on steroids all that time and will be on them for the rest of my life the worst thing about them is weight gain for me and now I’m a steroid induced diabetic type 2 but it’s all under control. Try and stay positive it defo helps. Good luck. You can ask me questions if you want and I will try to help if I can. Keep your chin up.

Wendy

[SCM75]

Wow thank you so much Wendy It’s a very scary place when you have no one around you who has anything like this I take Lansoprasol and Ranitidine for reflux plus peptac throughout the day but still have breakthrough reflux. Trying to eat with all meds but wondered if I need to adapt my diet too

Have you found that the steroids improve or control your illness and how much of your life before diagnosis are you able to still enjoy. I only ask as I’m really not sure what to expect.

We are also about to become young grandparents (I’m only 43) but our daughter lives in Australia and is due at Christmas. It’s breaking my heart to think we may not be able to fly out to be with them. Trying to take every day at a time and just see how I go.

Feel very anxious about being confident about knowing what my body is really doing with all these new meds. Thinking is this side effects or am I ill, think it’s just because I’m just out of a long hospital stay Does that come back?

Thank you for your support. It’s really great to be in touch

[Yarnaddicted in reply to SCM75]

Hi there SCM75 ,

I stumbled across your post I don’t have your illness but I do have

COPD amongst many other problems. Like you I was in hospital this year for 4 Months. I broke my Hip in jan and it kept getting infected meaning a total of 5 operations and 4 Months stay in hospital.

I remember coming home from hospital feeling like a fish out of water my place not feeling like my own and me not feeling like me , add to the mix I now had 4 carers a day and still couldn’t walk so had wheelchair and walker from the hospital.

But very soon I started to feel like me again maybe not 100% but perhaps that’s a good thing!!

I’m. Now down to carers 2 times a day. Still can’t walk so I’m still housebound but I’m coping ok and so will you, we humans are Marvallous At adapting!!!

Sorry such a long essay!!

I to became a Nanna last year at the age of 46 it was my granddaughters 1st birthday yesterday but I still haven’t met her as my daughter too lives in Australia. So I understand how difficult this feels for you may I suggest close contact in the way of phone calls. Letters and frequent parcels to your daughter and grandbaby may help you and will most definitely will help your daughter.

I wish you all the Bestest xxx

[SCM75]

Thank you so much for getting in touch with such a positive message. It’s been a difficult pregnancy for our daughter and she has had to watch me via FaceTime in hospital for months so it’s been very hard on the whole family

I’m determined to try to be a stronger better me and try to stay positive. I managed to get home just before her 25th birthday recently and the smile on her face just gave me so much hope. I had a rough day yesterday and cried through frustration and lethargy but I’m a great believer in getting emotions out. Today I feel a little more positive.

Acid reflux is nightmarish though. I’ve adapted food types and am on max antacid and PPIs but to no avail. Hopefully it will reduce gradually

Well done in getting down to 2 carers it must feel good to find that you are making some progress

I’m very grateful to you for taking the time to reach out to me Sx

[Oshgosh]

Hope you are feeling a bit more comfortable. My ctd nsip took longer to develop than yours. My local hospital messed me about with appointments.i had an emergency admission in November.

From this my meds were all changed. Transferred to specialist centre as an out patient. The fatigue gets me down.i had to give up work,discouraging!

I had a bronchoscopy,but after much thought, refused a biopsy as I was concerned about side effects.

Think I will be put on different drugs inApril. Just want to feel better.the pulmonary rehab was good.it can’t help your lungs, ut buildsaerobic and muscle strength. The education was really helpful. Have started the gym which helps. Y confidence.

If you still have pain from the biopsy,ask your GP And consultant ,if they don’t listen insist. Hop you feel a bit better