Hi GAB85. About your appointment I would keep it as is becuse you'll probably only gain a week by the time they reschedule. In the meantime if you can keep a journal that would help you chart your progress and any small changes. Great to hear your friends and loved ones have noticed the cough has improved. Sometimes it's hard to notice small changes by yourself. I now measure every little thing - I ran for the bus but it takes less time to recover. I ran a little longer or further again quicker recovery. It might seem like there's not change but you might not be aware of all the areas affected because the SOB has been the main focus.
I had several years between streroid treatments because I was convinced it wasn't a good thing for me. I'd ruptured both Achilles tendons due to the steroids so I didn't want to expose myself to anything else. I didn't want to gain weight again not for vanity sake but because you have to explain to people it's your meds not overeating when the look at you like, wow - you've really put the beef on.
I was also dealing with a strange consequence which I believe is connected to the sarcoid. My womb began to grow, there was no reason and no way of stopping it and I developed fibroids. it was really serious in my eyes since the womb meant not enough space to expand the lungs properly and that mean less oxygen. I also didn't like my Consultant keeping information from me then deciding I needed to take meds without explaining the reason, benefits or disadvantages. He never gave me stats from the spirometry tests so I could make informed decisions.
After 7 years I looked like I was pregnant and struggling for breath , someone asked when my baby was due, not funny. I think respiratory thought I was overeating while gyneacology were concerned about my chances of survival if I had to have surgery. In the end the decision was made for the sake of my survival. There were no problems during the operation and being on pure oxygen for 3 days was amazing. I stopped wheezing and didn't need pain killers. I was up walking round the ward as soon as the epidural wore off. I didn't have any post op problems either. I was also able to walk up the hill to my house which has a steep gradient. I kept saying I didn't know what it was like to breathe normally for more than 10 years. I walked a mile to the surgery to have my staples removed 5 days after discharge and then back home. The Community Nurse came to my door to remove the staples 10 minutes after I got back but I didn't know she was coming. She was really cross with me until she saw how well I looked, everyone said I looked great - its amazing what oxygen does for you.
Before the hysterectomy and second round of steroids I lost my speech, another symptoms of this disease. There was no pain. I asked for a referral to ENT and requested the head of the department. Eight weeks after it began I saw the consultant, he put it down to dehydration caused by steriod / ventalin inhalers. He wrote to respiratory and I was taken off the inhalers. I was dehydrated because I had become stress incontinent every time I coughed and reducing my fluid intake was my way of avoiding an accident. It's a vicious circle but shouldn't be. It took 6 months to get back to normal speech with help from a speech therapist - not good when you're a professional singer.
Three years after the hysterectomy I went reluctantly back on the steroids (80mg), the cough was back and I was wheezing worse than before. I was afraid to do too much and avoided stairs etc. I had just lost all the excess weight. It worked, I felt a difference after a few weeks, my cough dissappeared completely though I blew up like a beach ball during that time.
Then one day I realised I could make the hill at the doctors surgery without stopping, slowly, but I'd done it. I used to have to stop 3 or 4 times gasping for breath, it's just over 100m. All the places I struggled with got easier and my walking pace became more purposeful rather than laboured. I started climbing the stairs at work and I'm still dong that.
It's been two and a half years and I'm now on a maintenance dose (10mg). My son got married 18 months ago, I was overweight but he didn't care, his Mum was there to celebrate with him and how I looked wasn't important. I was able to dance with him, such a special moment I cry when I think of it. Truth is, I'm lucky to be alive because my journey with this disease began 22 years ago when my children were 4 and 6 and the doctors didn't know from the symptoms what was wrong, no markers, nothing to suggest sarcoid and no way of treating me effectively. I was at deaths door with undiagnosed blood poisoning too. I just wanted to see my kids grow up, get married and be around to be a cool gran. I fought for that.
So, GAB85, have a goal, make it a good one, keep reminding yourself you're going to see it and remember you are living your journey. While it's nice to have input from other people about their experience there are other factors that affect you so keep your focus on you. I'm A-typical because I'm of African descent and I have slightly larger lungs, also I sang classical music for years and that helped my lungs cope with the damage and distress. On paper I'm not in good shape but in reality I'm doing better than a lot of people who smoke, drink and don't look after their health even though their stats are better than mine. I keep singing to keep working the lungs directly. I give concerts even with damaged lungs, it has affected my voice but it's time to work on my core muscles to get the breathing support I need. I'm still singing and people still enjoy it so the circle goes round.