Sally has been looking after me now for over 6 years, infact she was one of the team of physio's who were given the task of getting this poor wretch back from the dead after surviving the un-survivable. The ICU team had done their bit in pulling me through a double pneumonia, ARDS, a pulmonary embolism etc etc and now it was down to Sally and her team to rebuild what was left, a massive task because I had wrecked lungs and no muscles, infact I was a breathing skeleton that refused to give up.
I had an appointment with amazeballs Sally today, just a check over to see how I was getting on with the new gadjets she had given me and a breathing control check to recap a few important breathing exercises and technics.
I mentioned to her that my breathing was in a bad way since my rheumatoid arthritis consultant had tweaked my pills, he was new to me and decided lowering my steroids and raising my Mycophenolate was the way to go. I did think at the time this was going to end badly but gave it a go because he was the expert.
Well this was the cue for AB Sally to get on the case. She promised me she would get in touch with my Lung consultant and phone me once she new what he thought.
After returning home later today the phone rang and it was AB Sally, she told me that the consultant had said to raise my steroids to 20mg and drop back to 15mg if possible as a maintenance dose. She's also on the case about the length of time until my next appointment with the lung consultant.
As you can tell I am Sally's no 1 fan cus she gets things done, my head was in a bit of a spin, knowing that my tablets were wrong for me but not quite knowing what to do about it. I feel more relaxed now things have been sorted and I owe it all to AB Sally.
The pic was taken a months back just before the weather got to cold and wet for the Malvern's. Roll on next spring when I can return back to the top again.
With a physio like Sally I should be fit and ready to ride the countrywide tramper by then.
Got to say Sally was great right from my initial hospital recovery from 6 years ago and is still helping me now whenever possible. Seems I kind of set the bar from which its possible to make a recovery from so I'm not to easily forgotten .
Hopefully I'll be posing for many more photo's on top of the Malvern's and next time with a bit of luck I'll have a new set of lungs so there won't be a Tramper in sight. XXXXX
Lovely to see a post from you Tony; was wondering where you had been and was worried that you were poorly. Sally goes the extra mile for you and so she should. You are a fighter and do everything you can to help yourself and others - like all the people on this forum.
As you say Sally goes the extra mile which is very much appreciated by myself and many others I'm sure. Yes I am a fighter but there are times when you need a little help and support isn't there, whether that comes from a HU member or a dedicated NHS professional , its good to know your not alone in your battle to simply breathe
Jeeez - it p*sses me off when totally different consultants interfere and mess you up Tony. But due to the Amazeballs One, you are sorted and i couldn't be more thrilled for you. You hang in there, you're an inspiration to us all. I love the pic and come spring hope you'll be up there again. DON'T try anything rash before the weather warms up xx
For a few years after falling ill my consultants meetings were joint ones, both the rheumatoid and lung consultants would discus what to do with me. I would sit there and nod or shake my head as I was new to it all then. One of the main arguments they would have between them was whether to reduce or increase my steroids. They would reach a compromise and I would go with their decision but now with my rheumatoid consultant changing every time I go and no joint meetings I've lost confidence in them. I am happier to listen to my lung consultant who hasn't changed and knows me and my condition far better.
The problem lies when you need to talk to one of them and your next meeting is months away. Lucky for me this time Sally came to my rescue and sorted it .
Hope you enjoyed the Coral 02, feel the love and pass it on. .
Get this winter out of the way and I'll be back up the Malverns you can be sure of that X
Gerroff. Stop poking me with that sharp finger. OK I'm awake. Well done you, setting new records all the time. must admit I am a bit envious as I took to my bed and started the great slumber with 6 weeks of abs, different flavours, but am infection free now.
Lungs are now shot and can only walk about 5 metres before gasping. shame we can't get oxygen higher than 15. still better than the alternative and I am happy with my life.
Could be because I am still on 20mg pred and azothioprine suits me. Doc and I have an understanding that she writes the script and I medicate. love her to pieces. Off to lung consultant in Jan but going for an X ray next week.
So am still trying to keep up. just hope there is still room on your shoulder for me. Honeycomb Magmum on its way to you hero.
Hi Tina Great to hear from you Tony did say you wre Hibernating that's why you were quiet. my sitution is just the same awaiting the phone call from the Transplant team I am still going to three Classess a week + the Gym anytime I feel good and I walk 3x5 Kilometers a week as well. If I don't have an Infection then I have a chance with the transplant. Keep in touch.Matt
Hi Tina lovely to see you, but sorry you were disturbed from your hibernation much too early. I am so glad to hear you are infection free at last. How is lala land these days? Bev xx
Sorry I woke you DD mid hibernation but this Sally inspired post had to be sent. As you can see she is a great help and goes far beyond her physio duty's.
You and I are slowing together as our lung function decreases but at least we are still happy mostly and have our Honeycomb Magnums which are like Sally, completely Amazeballs!!! Ha Ha. When you first told me about them I knew I would love um but it took me a while to hunt them down as you must have been emptying the shelves before me , the wait was well worth it though. I'm waiting at the door for the arrival of your Magnum before heading to the shops for more.
Lets hope our consultants have come up with a miracle pill to fix us at our next meetings. Your Doc sounds great, she's up there with my Sally yeh'. Its sounds like 20mg of prednisolone is the going dosage for our condition, 12.5 was to low for me and I knew it when the rheumatoid consultant first mentioned it. Still at least I know now and won't be going down that rd again.
There will always be room on my shoulder for a walking miracle and that steadying voice of reason so enjoy the rest of that hibernation, be ready for some more fun and antics once winter is over. Good to see you sleep with one eye open on the HU posts . XXX
Hi Tony, Great to see you are gettin back on track it's a race to see who visit's first, You for Arthur's Seat or me for The Malvern Hills The Scotland Army were Training yesterday to escort me up Arthur Seat after my transplant.MC
I'm looking forward to those momentous day's when we celebrate reaching the top of Arthur's seat and the Malvern's by foot and without oxygen support. A nice cold pint of Guinness at each peak should cap it off nicely, I think you would agree eh' MC .
Hi Tony good on you keeping going like this. Sally sounds wonderful and I hope you can show her this post and replies. x
Sounds like a good idea Cough, I think Sally and her team would be happy to see what it means to their patients to get that extra bit of support along the way . X
How wonderful to have the Amazing Sally looking out for you, Tony! She will have a lot of fans here grateful for helping our superman to rock on. I hope you feel better with the changed dosage very soon.
Breathing is improving now as those extra steroids are beginning to cut down the inflammation in my lungs. I know my rheumy consultant was trying to improve my situation but it did seem a bit of a roll of the dice seeing he hadn't done any tests or bloods before changing my meds. I gave it a real try but my breathing got so bad something had to be done and lucky for me I had a chest physio meeting with AB Sally . Glad you enjoyed the music Tee xxx
Sally and her team have worked wonders for me over the last 6 years and continue to do so whenever help is needed. There's no doubt I would be much worse off with them.
Its survival mode this time of year isn't it Jess, we keep ducking and diving those bugs and hope for the best until spring arrives when we can get out and about with the camera again.
Bring on the Malvern's I say, they look all right from down the bottom but I would much rather enjoy their views from the top .
Sally, sounds like a great person to have in your corner Dall05, I'm glad she got you sorted, there's nothing worse than a consultant changing things and you just know your going to suffer for it.
It's happened to me with my Plaquinel that I take for my autoimmune disease. I'm paying for it now, pain wise, but, don't see him till January. xx
When you have different consultants going in different directions its not a lot of fun stuck in the middle is it. My pulmonary Fibrosis is being caused by an auto immune disease called Anti jo-1 positive, its treated by rheumatology and a lung consultant who sometimes have different opinions on how best to treat me.
Having an AB Sally in the middle is very helpful when your really not sure what to do and its a long time before your next consultants meeting.
I hope you can get your Plaquinel and your pain sorted soon XXX
Hi Tony, Glad you've got Sally in your corner. It's a bit scary thinking how many people could be feeling better, if they were on the right meds. Not enough Sallys to go around! Rocking song, Tony! Gotta do one of my music fests soon. Wasn't many people coming on, so I didn't bother. Always good to see your posts. Hugs, Ruby🌹
Getting those meds right is so important for us all and I'm sure the GPs and consultants do their best. The problems occur when your meds are altered and its a long time to go until your next meeting. There's not enough information or advice given at the time on what to do if you have problems.
Your right about Sally, there's not enough of her kind to go around .
Looking forward to your next music fest and jamming up the HU site again Ha Ha. XXX .
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Chest infection from spraying Flea Spray (or was it just bad luck, flu season or allergy?)
pulmonary hypertension
So Yet Another Follow Up - Starting I think 2020 - Bizzar,
Follow up -back to Fostair - hooray.
IS HE GOING TO SLIDE OUT OF THIS ONE?!
