Feeling really down just been to see my stand in consultant, was hoping for answers as to why I've felt so rubbish since June just didn't expect him to be quite so candid.
I did know my emphysema was severe, he said it's very severe and wide spread which means lung reduction wouldn't be possible, and lung transplant is off the agenda as I have osteoporosis and I don't weigh enough, so basically that's it I suppose I know my last lung function was 27 % must be lower now.
He has extended my steroid for another 10 days and from 5 to 30mg and changed my AB back to Co amoxiclav 635mg I've been on Doxycycline since going to hospital Saturday.
When they're finished I've got to start taking Azithromycin 500mg Monday Wednesday and Friday
Any feed back would be great
Kim xxxxx
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kimmy59
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Dear Kim sorry you have been given bad news so bluntly. I take it you will be seeing the consultant again. Have a think about the things you would like to do and what questions you might have for the consultant. At present you still have an infection so that will also make you feel down. that is something that hits us all from time to time. When I was in hospital a few years ago all i wanted to do was go home and being a bit silly i kept crying to cheer me up my partner bought me a great big whit teddy bear with a pink ribbon it did the job. If I could send you a teddy to cuddle I would I hope you feel better soon. Irene
Hi, my health is in a similar state to yours. Fortunately I am on the transplant list (have been for 15months with one false call) but now need oxygen more regularly, azithromycin daily, maintenance steriods 12.5mg along with all the other meds. Guess we have to accept what we have got and take all the treatment available. I feel pretty good in myself but the exertion is really hard to accept. To reiterate what dazisnotsogood says we can only carry on as best we can and support each other as much as we can. Love SueE
Up until June I felt great then bang Pneumonia and I can't get back from it, only had oxygen to exercise or if out shopping now they've got me on 1/2 lt 16 hours but at the moment I need it more, I've not been assessed since June because of infection.
My usual consultant is off having a baby, she never really says much at all apart from the last letter to my GP she said I had asked about lung transplant and at present I didn't fit the criteria that was September and she didn't think I was ill enough so I don't know what to think.
I really hope these antibiotic make me feel better, I've heard good things about them.
I do want the truth but a bit a bit of hope would be nice.
Hi again, it was my consultant who put me forward for a transplant then I had to be assessed, long process but do push for it. The 16 hour oxygen is not just to help your breathing it is to make sure all your organs are receiving enough oxygen, evidently 16 hours daily is what they need. I did the 16hours at night but used it during the day when I felt I needed it. I think you get told too many different opinions about the usage of oxygen. The best advise I was given was to use it when I felt I needed it and boy do I need to use it now, just been upped to 4litre so hope this transplant comes quick. Good luck to you hope you get the option. xx
Hi Kim, I'm in the same boat as you, too much widespread damage for lung reduction surgery and have osteoporosis so no chance of a transplant as rib cage would be in danger of crumbling when lifted for the operation,. My lung function is about 20% now, my consultant referred to it as end stage 2 years ago but haven't become noticeably worse for quite a while.. It's a catch 22 situation, need to exercise, not enough breath! I just take each day as it comes now and if I have a bad day or two then it seems so much better when I have good days! Sadie xx
Sometimes there is a right and wrong way to say things we are all so different in the way we deal with life's slap in the faces. I was told that I need a pacemaker but they will have to make me pacemaker dependent because anything else they do could make me worse or kill me. Because of the damage I now have to my heart. I am a man that talks straight and likes to be spoken to in plain simple terms. Transplant is out the question as my breathing has been a worry to them.
One thing I did not understand is re not being able to have a transplant as you are underweight.....are you very underweight? could you put on any weight? and if so would that alter their opinion. I know you have osteo as well . but I never realised that low weight affected this decision
I've never been above 6st 5lb always been very tiny both my parents were, when I was a child my mother worried constantly I've had so many tests over the years it's untrue, but they never found anything and I've always been healthy. I never had children which does alter your metabolism my sister was very small she's not now after three children.
I've explained all this to my consultant who said she would fight my corner, but I think the osteoporosis is more what it's about, I did really well putting on a little weight or muscle really through exercise, but when you feel ill you can't do it.
Stupid thing is my own consultant who's away at the moment told my GP I'm not ill enough to recommend for transplant that was September.
Sorry to waffle
Kim xxxxx
ah,, disappointing for you ... I too very severe ... and exercise is helping me so much. Keep going and do what you can and enjoy life x
That's what I want to get back to. I had double Pneumonia last year took me three months to get well, but I went back to work in October and on a rehab this time last year, I felt fantastic. Then it all fell apart end of May, they want me to do another rehab but got to be infection free for 6 weeks. I hoping this new AB will help.
I also have very severe emphysema. I'm on 1/2 L/min oxygen. My FEV1 yesterday was 24%. Today it is 18%. I'm normally 27%. So it can change from day to day. I only have AB's and steroids if I get an infection. I find keeping as active as I can is the main beneficial thing for me. I still drive and do a part-time job and most normal things, just a bit slower now though.
My partner developed a pulmonary embolism a few days ago. As she was laid up in bed it meant me going up and down stairs a few times. The other day I counted how many times I went up in one day and it was 19 times ! Now that is some going !!
It is, I still do the stairs. I've been on melt down since my husbands heart attack in August, I was still recovering from pneumonia and suddenly had to do everything and go to work, my neighbours were fantastic. Then wait for the triple by pass, deal with all the bills and then had two of my four cats die on me. I thought I was going to explode, my family have been nagging me to give up work for ages, I was due to leave end of the month but I went in yesterday and just knew I had to go home again, can't tell you how much better I feel already. Xxx
You do seem to be very tiny Kimmy..perhaps you should try for a modelling job !!!!
But seriously, perhaps try to drink a food supplement, or try eating a little more protein etc. They are always saying to me to put on some weight and I am over a stone heavier than you . The reason is that if you are ill, you have some reserves to fall back on, and if you do get to have that op you will have reserves to fall back on too.
Its worth trying to build a bit more strength into yourself,
I am sure there are LOADS of people this Christmas who would love to have the luxury of eating WHATEVER they liked and as much as they felt like eating ...
Well I've given up work now so hopefully that will lessen my stress levels.
Still worried about my husband who had a triple by pass 31st October even though he's making great progress, but he's not worked since August so money is limited.
He receives ESA contribution related he's been self employed 40 years, anyway someone reported us that he was working my shifts because I'm ill and I'm getting payed for it, so it doesn't affect his benefit. How sad are they.
And it's funny you say about food supplement I already drink Ensure but my dietician wants me to trial a new one, he was surprised I had maintained the weight I had so that's something and my BMI had gone up since September and my vitamin D level is normal.
I'm not as ill, Kim, but I had pneumonia and a touch of TB. The ABs do the trick eventually. I had lost weight too. To overcome this, I drink hot chocolate with whole milk -there's Vit D in the milk.
I bought some raisins and unsalted roasted cashew nuts which I put in my cornflakes. Those nuts contain fat and boron which builds strong bones, there's a reference for it: nlm.nih.gov/medlineplus/dru...
through this, I have gained some weight. I sincerely hope and pray that you will gain confidence. Can I call you a tiny gem? Try whatever is available.
Thank you, you can call me what you like. Lol. I drink hot chocolate love it, my dietician told me to use powered milk as well as the full cream, for extra calories but I didn't know about the boron in nuts so I'll try that, I like oats so simple myself. Good thing I can eat all the things others have to avoid.
Kim xxxxx
I've got the opposite problem kimmy. Very overweight - in fact I'd class myself as obese. Exercising is difficult due to RA - in fact, I had a fall on Saturday. OH managed to get me upright, but I thought they'd have to organise a crane to lift me!! So here I sit, a bit bruised and battered, but no wiser sadly!! Oh the joys!!
Ah bless your heart hope your ok. It's weird when they talk about my size I've never known any different, but they look at me as though to say yeah ok, my brother in law who I've known since I was 11 calls me tin ribs, so I know it's normal.
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