In 2013 I had a persistant dry cough I went back and forth to my GP. I was referred to the Respiratory Clinic at West Suffolk Hospital Bury St. Edmunds Suffolk. They did the usual tests Chest x-ray C T scan and Lung Function tests. All came back inconclusive.
In January 2014 I noticed slight breathlessness and cough made another appearance. Like a normal man I just ignored the symptom and carried on as normal or as best that I could. Fast forward to September 29th 2014 after feeling very unwell for three or four days in was admitted to WSH with total respiratory failure. A&E transferred me up-to the Intensive Care Unit. I was in ITU for 8days and with the help of a C-Pap mask and very high flow oxygen and huge doses of anti-biotics and steroids. I avoided being placed on life support to help me breath. I was transferred onto a ward for the next seven weeks. Consultants confirmed that it was severe pneumonia that took into hospital. All the tests that had been carried out since have confirmed that i have an Interserial lung fibrosis which has affected both bottom halves of my lungs. Cause unidentified.
When i was discharged from hospital in the November of 2014. I was referred to specialist Consultants at Papworth Hospital in Cambridgeshire. I went trough another battery of tests and the gave me a live expectancy of a year to eighteen months. Only option being a double lung transplant.
The next issue I am battling is my weight. I currently don't qualify to get a place on the transplant list. I fully understand what the are saying. So to help with the weight loss programme I have employed the services of a personal trainer twice a week. So far since February I have lost 13kg. I am really pleased with the progress so far given my poor capacity to tolerate exercise and the high dose of steroids that I take also being on oxygen 24/7 to maintain my blood oxygen levels all make it all such hard work.
But I am still here and fighting. Hope I haven't bored everyone with my waffle but thats roughly my story so far.
TimS154
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TimS154
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I am so sorry to hear that you are not well and have been going through a very difficult time.
Telling your story isn't whinging. You're stating facts relating to your condition. Even if you were whinging, that is one of the benefits of this forum. It allows you to get rid of your pent up feelings and get a bit of support from people with similar problems that understand what you are going through.
I can relate to much of what you say because I went down a similar path. I started off with a persistent none productive cough. Thinking it was the start of some sort of infection I just treated it using the normal remedies. About 5wks passed and it hadn't gone so off I trots to the Doctor. He treated it as an infection with antibiotics. After two lots of antibiotics the cough hadn't gone and I was more noticeably breathless.
My Doctor did the usual spirometry test, sent me to Hospital for X-rays and referred me to a Pulmonary Consultant.
After all the other tests - CT Scan, Ultrasound (heart), Lung Function Tests and loads of Blood Tests my next visit to my Pulmonary Consultant confirmed that I had Idiopathic Pulmonary Fibrosis in the bottom half of both my lungs. I was also told that my life expectancy was approximately 2yrs so I know exactly how you must have felt. That came as a very big shock as I had always been fit and active. Fortunately I have a very positive attitude which allowed me to get on with life although at a much slower pace.
I guess what I want to say to you is that no matter how bad things seem at the moment, you still need to keep the positive attitude you seem to have and focus on what can be done to improve your condition. You have already made a good start by employing the services of a personal trainer and you have done really well by loosing 13kg. Just watching what you are eating and the amount can also go a long way in loosing a few pounds.
You haven't bored me with what you have said and I doubt you have bored anyone else either. If you ever need to talk there is a great bunch of people on here and you will always find someone willing to listen or offer support. I hope that you will find many new friends and I am sure you will be able to help others as well by sharing your own experiences.
I wish you all the best in achieving your goal of getting onto the transplant list.
I'm not bored Tim. After what you've been through you can achieve anything.
I have the same problem regarding transplant list only at the other end, but Harefield or Papworth won't even consider seeing me because I'm so small. I completely understand there has to be a criteria but I've been the same weight all my life not since I've been ill.
Thanks for your story, Tim. We are all concerned and interested in lung problems of all sorts. And you have a nasty one. VERY impressed with the weight loss and training programme. Well done. There are people here with similar stories and situations and are brilliant with advice, help and support.
You do seem to be well looked after. And you have more than done your part in the process.
Wow - what a story. Sorry you had such a rapid decline, but I have so much admiration for the way you have gone about it. I too am too heavy to be considered for a transplant so need to work on getting the weight off. I have about a stone to go. Luckily though at the moment I am still able to work and don't have oxygen. Keep up the good work and it snot boring at all!
Well done Tim to get this far, sounds like you have had a tough time of it but you are still battling on , hopefully you will get a chance of transplant now you have lost some weight. A personal trainer sounds very modern and up to date.
Wow, so many shocking tales of personal diagnosis on here, everyone is so different, good luck with your weight loss you seem to be in the right frame of mind xx
Giving you a very big virtual pat on the back for effort at least .... it is hard to stay trim when moving is a problem but it is essential ... even walking from one room to another every hour beats sitting for hours which is so easy to do .... Lots of luck with whatever t
hey decide to do to you and there is so much nowadays .... keep us posted xx P.s. I only have 1 lung so doing everything I can to keep that going x
Good afternoon Tim,
Bored?.....not at all - you want to live - it's as simple as that. I wish you every success with your continued weight loss - you should be jolly proud of yourself. Stay with us and tell us of your progress towards the lung transplant - I feel you will get there and wish you well. Please keep in touch with us and let us know how things are. We are here to support and encourage you.
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