where do i begin?

As the title says - where do i begin?

my journey started in september last year when i had day surgery for carpal tunnel sydrome, i figured have both hands done at the same time to only need time off from work once and get back to normal as quick as possible.So the operation was a success and after a couple of days of resting with my arms up i started to become a little more active by taking my little dog out for walks throughout the day. it was only when coming up the two flights of stairs back to my apartment that i found myself a little out of breath when reaching the top, i had had a cough for a couple of weeks and thought i had a bug like most people do and shrugged it off as nothing to worry about. as the days went by my cough didnt go away and the breathlessness remained so on the 1st November i went to see my doctor-told her what i had been experiencing and how it had just crept up on me, she listened to my chest and immediately sent me to hospital for an x-ray as there was something she didnt like the sound of.I went for the x-ray and had a call from the doctor the next day saying she has made a referral to a doctor at the hospital to see me as soon as possible as she could not explain the cloudy patches in my lungs showing on the x-ray.so started a long and somewhat frightening journey to where i am today. i spent the week before christmas in hospital with a collapsed lung and after lots of tests and an invasive lung biopsy, on the 24th March i was given my diagnosis by the surgeon. I had IPF.I had no traceable cause and limited options for treatment. All my life i have been an active man DIY, car repairs, installing flooring and even a couple of complete bathrooms so when i could just about tie my shoes i was devastated.In the time from becoming poorly to now i have lost around 4.5 st in weight and look like half the man i used to be. In between all this my lovely wife and i got married on my birthday in Feb as we didnt know what the future was going to hold for us and didnt want to wait until the september date we had already set.She is my rock and I would definitely not be where i am today without her.

My more recent visits to the hospital have been turbulent to say the least - as my condition has rapidly progressed from comparing test results from Jan to march i was ruled out of any treatment from steroids(there is no medical evidence to suggest they actually work)and was told that the only other option to consider is a transplant of both lungs.

To bring it bang up to speed i saw a new consultant yesterday and after reviewing my ECG from the day before he informed me i also have Pulmonary Hypertension.This may mean that I will need a full lung and heart transplant if i make it onto the list. My next appointment is with a cardiologist to determine the damage to my heart and more tests to find out if i am strong enough to go through the surgery. I am a fighter and always have been and even though this has all happened in a very short space of time I know i can stay strong and hopefully get the transplant i need to be able to lead a moderately normal life again. I know things will never be as they were before this illness but I am determined to carry on as long as possible and by writing this I get to vent a little about what is on my mind and hopefully inspire others in a similar situation to never give up. My consultant has short waiting lists for transplants so providing i am fit enough and meet all of the criteria i wont have years to wait for the operation because my time is running out and im not ready to leave yet.

5 Replies

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  • So sorry to hear of your plight mrWheezy. I wish I could offer some advice or solace but I cannot claim to know anything of your condition. It is good that you are a 'fighter' and have your lovely new wife besides you. Try to keep yourself as otherwise healthy as you can in the meantime (eat the healthiest foods etc) and do keep us informed of your journeys progress. Best wishes to you and your wife, Parvati.

  • Hi mr Weezy, I'm really sorry to hear of your health problems. I like Parvati have no knowledge of your condition. I hope that you will be accepted on to the transplant list. It is good to have your new wife by your side to give you the support you need. Stay positive, eat a healthy diet and keep as fit as you can.

    Best wishes

    Jo:-)

  • Hi Mr Wheezy. Wishing you all the very best - I do hope you can get your transplant. Great that you have a lovely marriage, it'll help maintain your fighting spirit. Julie

  • Good Morning Mr.Wheezy, Wish I could offer you the magic wand! But a positive attitude and a great new wife will surely help! Good luck TAD xx

  • Thank you to everyone that has left me a comment I feel like part of the family here already. I will post regular updates as and when things happen, I have a bone density scan tomorrow so something else to tick off the pre-op checklist. Many thanks and let's all breathe a little easier xx

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