Now my mind has cleared (this is for informational purposes only as they say lol ) I saw "mos" my transplant consultant yesterday and what an honest and open guy he was about my condition .He stated the two reasons as far as I'm concerned for having a transplant is a), extension of life and b), quality of life .Apparently I'm a very good risk for transplant and he would have no qualms in ordering the plumbers ( surgeons) to do the OP. I wont go into to much detail but because of my previous good health and my robustness now ( now that made me laugh) I should benefit from a transplant in quality of life .
As to a), if I stay as I am the transplant wont offer me any extension of life ( he could only reasonably expect to offer me 5yrs of life after transplant and b), he could if ( and there was 3 if's) certain criteria were met offer an improvement in quality of life but that quality might shorten it .
Isnt it funny how life or death decisions get very personal very quickly ,i have for now declined the offer and I'm still on the " wait and see " list anyway long story short I have a new appointment in 6mths time ,I've been told to keep doing what I'm doing especially the excercises
Whilst there a lady from cambridge university ,( I allowed her to sit in on part of the appointment ) the winton centre risk and evidence communication dept asked if I would be part of study which will help them ( in conjunction with papworth hospital) personalise a online calculator which will help patients referred for transplant assess their risks and benefits of transplant, hopefully this tool will be much clearer and easier to refer to than trying to remember everything that is said whilst you see the transplant specialist.
She or one of her colleagues will visit me at home ( the enticement was a £10 amazon voucher lol) or another location if I wish , coffee shop or in a hospital , I asked if they could meet me in Jamaica but that wasnt gonna happen , well if you dont ask you dont get ,
Time to stop jawing now
Have a good day everyone , enjoy the sun but not if you're on certain antibiotics and as always breath easy .
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soulboy118
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Good Morning SB118, Well, You have a Choice now, Not really a Positive one Though. Like me, I was on the List for 3 Years, Hmmm, I thought I can do this without the Pressure of the Phone on my Ear 24/7,hence why I came off the list, Not one call in 3 years. That is Me Though, and many have gone on to Transplant Successfully. I always work hard to maintain my Lungs regardless of the last 2 negative appointments. It is a Huge Decision Hun, like Russian Roulette. Only YOU can come to that right Place, you have a few Months to do That. Whichever way, Stay Strong, Stay as Fit as You Can, eat properly, Wear a Fit Bit, Breathe well. And Love Life Today. Love n Hugs Boy Band. xxxx
Morning hacienda, difficult decision isnt it whether to stay on the transplantist or come off it especially when the consultant says he would and could do one on me tomorrow , or after my kidney stone has passed anyway , if I was struggling all the time for breath the decision would be easy but at the mo im not ,sat here I'm fine my stats are 96% (even in this heat) and during mild excercise it drops to 92% at its lowest but I am gasping like a fish out of water I fly quite easy although my stress level rises and stress and breathing are never good bed fellows , I guess I'm still available if any of the boyband are one short for a while yet , have a good day
Were all Different Hun, I know why I'm Breathless, (Ventricle thingy) so make the most, you sound in fine fettle , Your stats are Good, Do mine every day, stay at 92, drop to 88 on exertion, Thank Goodness for Oxygen), had my Reassessment last Thursday at Rehab, I passed, so I'm Happy, As long as I can walk keep the Legs going and Have a Vino, all is well. Cheers to That Boy Band who are looking just for you SB118. Love n Hugs. xxxx
I have just returned Home after a Meeting for Breathe Easy, We have that meeting in a Pub, Couldn't leave without a Vino Rose, sat in the sun under a Parasol. Now off in my garden to do a bit of Sunbathing under my Gazebo. Yes, I so Miss the Dancing Hun. Have tried , But The Mobile Oxygen hanging on my Shoulder doesn't entice any Dancing partners. Ha Ha. I will upload a Spanish Pic, when I used to Dance all the time....in Spain.. Hugs C. XXXX
What a difficult decision to make, Soulboy, and I don't envy you. So many pluses and negatives to way up. At least you have six months to think about it all til your next appointment.
I wish you good luck and enjoy spending your Amazon voucher!
Difficult decisions seem to make the time fly by but I’m sure you’ll know what’s right for you. I do wish you well and keep exercising and doing all the right things.
You sound like you have a good few years left in you yet given your present condition and level of fitness and a continuation of your regime will certainly extend that even further,so thankfully plenty of time to weigh up that decision when you feel you need to make it.
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