I am on the lung transplant list. One of the tests to get on the list was the 6 minute walk test. This I could do. However now I wouldn’t be able to, as despite 24 hour oxygen, just walking a few steps and I have to stop as my oxygen levels plummet to between 60 & 70%. After 30 seconds, they recover to 90% and I can walk a few more steps. I wonder whether this means that at my next assessment, I will be removed from the list?
I know some of you have been taken off the list, and I wondered why?
Perhaps you could phone the British Lung Foundation nurse, who will be able to talk you through this.
Obviously, I cannot say what the TX team will decide regarding your suitability, however it may give you some assurance that prior to my TX 2 years ago I couldn't walk for 20 seconds without desaturating to the extent that they gave up with the 6 minute walk . Best wishes on your transplant journey, and if you have any worrying questions, or just anything in general I will try my best to answer.
Steve ...
Thanks Steve, your positivity is so encouraging. I am becoming discouraged that I won’t get the call. Palliative care are visiting next week to form a plan.
Hi Mary, 😊👋
I do believe they will look at different aspects of your assessment. I don't think not being able to complete the six minute walk test is enough to consider you ineligible. Of course I am judging solely on my interaction with other lung transplant recipients from the U.S and Japan. I know people who could not be considered because of other underlying conditions, other organs failing, cancer, osteoarthritis etc. Rarely have I heard of someone struck off because of the walk test. Do not go in worrying about what you can't do, if we could do it all, we wouldn't need the transplant. Grit your teeth and go at it as best you can. Take it one test at a time, one day at a time. I hope you will keep us updated. I am thinking of you and wish you the very best of luck.
Caspiana xx ❤️
P.S. how long have you been waiting?
Hi, thank you, I’m sure you are right. I’ve been listed 15 months, but I’ve deteriorated rapidly in that time. Even the transplant nurse told me, last week, that I was a grave concern to them. However the great replies I’ve had have once again helped. Thank you.
What Caspiana said, Mary. I had/have urinary bladder cancer. I was told I needed to go three years cancer free before being put on the recipient list. All the best, sunshine. Keep us informed please.
James
Thank you. Just hope to get the call.
Hi mary1956. My husband couldn't do the 6 minutes walk test either but that didn't result in him being removed from the list. Of course the walk test isn't the only thing taken into consideration. I know it's worrying especially when you're pinning your hopes on a transplant. Based on my husband's experience I don't think you should worry about the walk test. It proves you need a transplant.
Oh thank you, exactly what I was hoping. I will check with the team when I next speak to them. Silly to sit and worry, when I could just ask them. Guess I was just reaching out to this lovely group.
Once again, you have all help. Positivity levels are going up again!
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