47 Days in the Hospital with ILD. Still fighting. Doing Well. Hopefully Inspiring.

[pb2112]

During July and August I was diagnosed with ILD and the form ( which there are many) was Cryptogenic Organizing Pneumonia (COP). Before I begin to share my story, please be reminded that we are all individuals and we respond to medications differently. So ignore statistics and personal experiences, simply let them guide you but do not use them as definitive answers to your questions. Weight, height, age, smoker/non-smoker, previous history may influence your prognosis profoundly. In my case it started with Bronchiectasis, which was not the right diagnosis. I had basilar streaking in my upper lungs which, after a Bronchoscopy, turned out to be COP. This is a form of pneumonia without a known cause. Cryptogenic means "crypto" cryptic or a mystery Organizing means in created a pattern, sort of glass like in shape, and altered the structural shape if my lungs creating restriction, unlike COPD which is obstructive. During my Bronchoscopy they nicked a blood vessel and I bled one liter of blood internally and had to be out on life support. What fun. After extubation, I contracted Staff Aureous Pneumonia and remained on 100% oxygen and in intensive care for 27 days. I was on deaths door and was told I could die, but to stay strong. I wasn't ready yet. Not at 51. After this incredibly painful journey I was in rehabilitation for another three weeks. I spend a total of 47 days there, learning to walk, pee, and breathe. Eventually they titrated my oxygen to zero! Yippie! Not knowing my fate, talk about being on oxygen for life, and lung transplants scared me to the point that I simply had to prove them wrong. Today, I have been off of oxygen for 5 months. I have rebuilt my body back up and am currently on 5mgs of prednisone. It has been hard hard work and dedication. Working out daily for nearly two hours, eating all kinds of crazy diets because the prednisone has induced diabetes ( no sugar), osteoporosis( more calcium), GERD ( no acidic foods) hypertension (no salt) and more. I'm watching my carbs and my calcium and vitamin K, and salt! This week I hit a wall and began relapsing. Very disappointed. Pain in my chest, possible upper respiratory infection, and may need to go back up to 7.5 for a while longer. Which means my diabetes will get worse, and so will all the aforementioned side effects. The good news is, that there is hope for us ILD people. The steroids can be alternated day by day, potency tapered, and life prolonged. I felt as if getting off oxygen was a triumph, but should have known the discrepancy between my PFT (pulmonary function tests) and my CT scans were vast. I was presenting well in person, no breathing problems, strong muscles, but my PFTs were lower than normal, improving, but still low. That should have been an indication to me that once the magic potion (prednisone or steroids) were tapered down, Superman would once again become Clark Kent. These are the ups and downs of the disease. It is unknown until they scan again on January 13th if I am to remain on steroids long-term. One thing I can say for sure is "be strong of mind." It is a roller coaster and ours just has a lot of bumpy dips and bends. We are all different, so don't expect miracles, but it is a disease that can be controlled, and in 2/3 rds of ILD cases where people have COP, there is light at the end of the tunnel. BTW my Bronchiectasis was incorrectly diagnosed by my ex-pulmonologist. I had no inflammation or phlegm. I actually had "Traction Bronchiectasis" caused by the abnormal stretching of the bronchi, because my restrictive lung disease was tightening up my chest and pulling and stretching the bronchi. Some of the bronchi have re-opened and some have not. My current blood oxygen is between 98 and 96, with exertion I am at 92/93. That could change again and get better or worse. Make sure you have a good team of doctors, and any single symptom during winter should be checked out immediately, especially if your o2 levels drop and your heart rate increases. Those are the two tell-tale signs that something is wrong... that and of course your breathing! From across the pond, stay healthy, my Brit friends, -Paul

[Hidden]

Hi thanks for sharing your story very intresting .. Is a roller coaster and like you say you have to be strong in mind and know your body

Like you said about your heart yep that is a sign ..

Hope all go's well cheers all the best

[pb2112 in reply to Hidden]

Thanks and cheers to you, my friend.

[Sohara]

Gosh pb2112, you certainly are one of life fighters, I can only admire your spirit, I do actually believe that we can be stronger physically if we are strong mentally

I hope your results are all good and that you can reduce your Pred....somehow I think you will do your best to help yourself in every way you can to improve your health and strenght..

Good luck to you pb2112

Love Sohara

[pb2112 in reply to Sohara]

Thanks, Sohara, I appreciate your kind words. I hope all goes well for me and for you too! Stay strong....Much love, Paul

[Hidden]

What a story of courage pb2112. Thanks for posting and thanks for your courage and positive attitude. Long may you continue! Take good care, TAD xx

[junespoon]

Nice to hear Paul, that all the,hard work that you have put in has worked, Puts me to shame really must get out and do more, Thanks for that x

[sassy59]

Good to hear from you again Paul. Several people have been wondering how you were getting on. My hubby Pete suffers from chronic sarcoidosis and copd and takes 10mg pred per day. He has upped the pred at the moment as he has a lot of mucus production but it is clear so hopefully no infection. I really wish you well and hope that your medical team help to keep you fighting fit. Take care and keep posting. Happy new year to you. xx

[Hidden]

What a great story of courage,self help,& a great fighter!

I do admire you, & your attitude,& wish you sincerely,every good wish for the future.You have certainly worked hard at it all,& deserve good outcomes.

Good night from the other side of the ditch( Aus.) xx