HI everybody, Not feeling so good today so I thought I would make my first post in case anyone can give me good asdvice. I have just turned 83 and had both legs amputatetd below the knee 3 years ago, having been physically active all my life this is rather inconvenient but I have adjusted well and it is more of a nuscience than any thing else. My real problem is my lungs, as I have emphasema and bronchiectasis and was recently attacked by psudomenas courtesy of the hospital. My breathing has now deteriorated to the stage that on waking I am on the verge of panic and take about 20 mins. to calm after copious pumping of salbutamol and self control. It is obvious that without some meaningful relief my life has little point. Any suggestions would be welcome.
Nearing the end?: HI everybody, Not... - Lung Conditions C...
Nearing the end?
That is really hard going for you John, really hard. But your mind is still sharp and your sense of humour intact, the two main essentials in keeping going. I've had so many 'last' Christmases, 'last' visits to places I love, and 'last' other things that I've lost count. Keep posting here, you will inspire many people as you have me.
Lovely reply Don. You can't leave us either as what would we do without our lovely bard? x
Hi john I’m not good at giving advice as I still don’t understand my illness and why I can’t even leave the house due to being out of breath. Youv been through an awful lot yet you still fight on you inspire me so much esp at your age your still fighting your illness and not giving up , I hope someone can give you a bit of advice . I just wanted to thank you for sharing your story and I am so impressed thank you 💜 I will keep you in my prayers x
Your an inspiration John and in my thoughts and prayers. I hope you can get some much needed help. Xxxxx
It sounds to me that your medication needs a review, as you should not need to be using your Salbutamol so much. Do you not have a preventer inhaler? if not then it sounds like you need one, if you do have one then it should be reviewed for a different one. Then of course there is oxygen therapy if you need it. You are nowhere near the end yet. Have a word with your doctor and explain what is happening with you, you should not need to suffer in that way.
I agree with everything 2 greys have said. You need help with your breathing. There are meds that can help. Please get in touch with your g.p. and tell them what's going on. See if you can get an appointment with your consultant also. Ask for an x-ray, you might have infection. Unfortunately, you have to be proactive and get as much help as you can. Because if you don't ask you won't get. Take care and do let us know how you are getting along. Pat x
Wow. That’s a tough one but from what I’ve been told we don’t get to be “in on “ when it’s time to go. I think the moral of the story of life is do with it what you can in preparation for the next time around. Or however you believe the story goes. I have quite a lot of friends with amputated limbs. I myself am hemiplegic since I was 25 yrs. I tell my friends who are missing a leg or 2 legs are overrated. If I had my rathers I’d pick having the use of my left hand/arm back and keep dragging my leg. Have you considered prosthetics at all? My girlfriend, left leg amputee, is a professional athlete and still uses her “pirate leg” it’s a peg leg she actually made herself in her garage. She has great skills and catches more waves than most people with both legs. Granted she’s young but her excellence in attitude is for sure her saving grace. She actually had to give the leg to continue to breath. She was in one of the worst motorcycle accidents I’ve ever known about. She has a giant tattoo on her chest that says” just breath”. We all here can relate to that feeling on those days where we can spend a whole days energy chasing that next breath, or how my buddy would put it “ sucking wind”. I’m sorry you sound like you’re down right now I wish I had a magical way to cheer you up but as others have told me: the sun is going to set tonight and is sure to rise again tomorrow. Try to find a comfort zone. Only the strongest among us will not crumble under your circumstances! Take a little glory in your inner strength and make it through another day and then another and luckily you’ve been a physically active person up til your massive loss. That toughness is what will see you through. Apparently world still needs you here.you may not understand why now( I’ve been where you’re at minus amputations) it may be you need to help somebody else get through their trashed. It might be a child who’s feet will never touch the ground. Skateboard much? I find humor to be best medecine for all occasions. Hang tough !
Many thanks to all of you who have replied, espescially those who are worse off than me, and those over whom I have the advantage of having had a long and fruitful life. (although coping with my wifes dementia for 18months without the use legs was no picnic) Unfortunately it seems to me that as far as GP's go I am just another on the endless conveyer belt and the last consultant I saw (about 3 years ago) only looked at the obvious. I shall now take a no nonsense approach to the Medical proffession in order to obtain a meaningful result. If not then I have made my peace with God and look forward to the next chapter.
Again thanks to all of you who have relplied to me, it is indeed most encouraging that there is so much compassion to a complete stranger still left in this world to outweigh the mainstream of the"me first" attitude that prevails today. Also thank you for the sage and practical advice, God Bless you all! I saw a GP yesterday and am now on oral cyprofloxacin and am pleased to say that I did not wake gasping for breath this morning. What a relief!!. I shall follow up your suggestions which have beenof real practical help, as my mother used to say, "an ounce of help is worth a pound of pity" Once again my thanks to all of you, You are in my prayers I am sure you have been noticed by God. I will update you when I have something tangible to report, Good health and blessings to all John.
I think you are quite right to take a firm stance with the medical profession and get some help and enjoy life a bit more. Good luck xxx
Bless you John, You are an Inspiration to have stayed Strong for this Long, We can Learn a Lot from you John. Thank You, Hope you can get The correct Inhalers. Best Wishes XXXX
Hello Johnhawk
Sorry to hear you have and are having such a tough time. As your main problem at present is the difficulty with breathing, you really need to be your own advocate and be persistant that you are referred to a respiratory consultant. As you have bronchiectasis the consultant chosen (by you ((let us know an area close to a large city and we might be able to help you find one)) should have a special interest in bronchiectasis. You definitely need to see one and have a review of your medication. As 2G says you shouldn’t need to be using a bronchodilator so frequently and a preventer might be the answer or having a nebuliser. The respiratory con will find what you will find of most benefit. I am wondering why when you were in hospital with pseudomonas you were not followed up within the following 3 years!
Please let us know how you get on.
We care when one of our friends is unhappy and not getting the right treatment.
Love cx
Sorry you may hve misunderstood my post. It was 3years ago my legs were amputated, my admission for pseudo. was only 8 weeks ago and it seems it is on it's way back.
Apologies. Your post was crystal clear - my mistake.
This is all I can find for Exeter. They don’t seem to specify a speical interest for some reason!
Respiratory
Dr C Sheldon: 01392 402132
Dr D Halpin: 01392 402133
Dr N Withers: 01392 402827
Dr B Patel: 01392 402157
It may be a better ideaa since it was only 8 weeks ago to telephone your present consultant’s secretary and ask if they can expedite your appointment.
Good luck.
Cx
Ps. Torbay has good reviews but again no mention of special interests of cons.
nhs.uk/Services/hospitals/S...
X
My Consultant is Nick Withers and he is a real gentleman. Saw him yesterday & really listened to me and not just the "Lung function" figures.
Hi John,
So sorry..my only advice is get all the help and relief you can get so you can be as comfortable as you can possibly be..
From GP, nurses, specialists, and associations. I believe in associations, they offer good advice and they have ways..
You have reached out to the forum, you can do it again, you shouldn’t be pumping so much Salbutamol there are better and more efficient meds..
Try the BLF helpline.
Take good care of yourself and let us know how you are getting on x
Fran
Please research magnesium deficiency symptoms of magnesium deficiency also benifits of vitimins d3 k2mk7 good luck
I admire you for your positive attitude John and hope you soon feel better with the help of new medication from your GP , would certainly arrange to see him and explain how bad you are feeling
Hi there. I agree with 2greys, it does sound like your medication needs looking at. I had a preventer and reliever. When I was using the reliever too much they added a third inhaler (much easier now). Sorry to hear about your other problems, you have certainly been through the mill. Hope things get a bit easier for you.
Hi John , you can ask for an oxygen assessment team to come out to you . Also you can be referred to a local hospice for their classes on breathlessness and it includes anxiety and other things too . They are all about living and rehabilitating.Keep positive , keep happy xxx❤️
Hi John, what a hard time you have had and it seems like your postitive attitude has helped you cope with these problems. I do hope you get back to your gp and get on better medication as suggested in the above posts. Do you have any family that could assist or a support network. I do hope so, we all need help at times. Good luck to you and keep us updated. Irene x
You have had a rotten time but still have time for others. Keep posting John you have been a real inspiration to many. Kind thoughts, best wishes and prayers for you
johnhawk
Hi,
The loss of mobility must be difficult to cope with, I've not had that to contend with like you I was very active, however I do have severe emphysema & have had psuedemonas, the after effects can last for up to 6 months and leaves you very short of breath & weak. I've also had the same anxiety symptoms. for which my GP gave me a tablet to help calm the effects, it didn't stop the period it took to physically calm down but it put me in the right direction & slowed down the anxiety in general. (I can't remember the tablet name as it is at home & I'm on holiday). I found the anxiety was at it's height when I showered and the air intake seemed to be effected, but as soon as I got a carer & she did the showering it all seemed easier. Please don't give up, try talking to your GP about the anxiety, there are things out there that can help, without the anxiety you can feel better about yourself, I am only a few years behind you and am still seeking an improvement for the emphysema as I would like a little more time to sort out some issues.
IKeith
johnhawk,
Hi,
I think it as lorazipan (spelling maybe wrong) 1 to 2 tabs per day, can check when back in UK around 3rd February, keep smiling and be positive.
IKeith
And in the End…
End Stage COPD and heart failure
Bad End, Bad Beginning. Mattcass
GvHD of the lungs
The end of the line thank,s
