55yr old man born with no immune system, Brutons XLA , led to bronchiectasis or Non Famillia Cystic Fibrosis. Lung conditions went into freefall since Xmas, now on oxygen 24hs a day and being referred for transplant list .
Anyone out there either been or going through the same process.
I can't answer your query, I'm afraid, but welcome to the forum. Some people should be along soon who can chat to you about transplants.
Welcome to the forum. I don’t have your problems but I do have bronchiecstasis. There are people on here who have similar issues.
Hello. I had a transplant five years ago next month. Thankfully, I am doing very well. Please ask me anything. Best wishes to you going forward. Cas 🙋
Hi and welcome to the forum x
Yes Smurf 55 I have been through similar situation and at the same time of life you are now. In 2019 I was 54 and on full time oxygen and in March the same year I attended Wythenshawe transplant unit for assessment. Everything went well and on 1st June 2019 I received my double lung transplant.
I can pretty much guess where your head is at the moment and if you want to ask anything go right ahead. However not everyone is the same so I can only give you my own experience.
I've been lucky and only had bronchiectasis really bad the last 5 years. I was able to shield my kids from the full picture but not anymore. I mistakenly thought I could take on their grief and pain or worries and up until now I've been doing quite well.my youngest finishes a levels in 2 weeks and then we've decided to lay the cards on the table and I'm not looking forward to that . I know I'm going to hurt them if things don't work out , they already know I think , they aren't stupid.
I'm trying to get all my affairs sorted , you know service , burial plot, hyms.
Insurance and wills all enveloped up.
Then I plan to get stuck into the qualifying targets they need , BMI , 6 minute walk test , head doctors tests. Etc etc.
To be honest I was too poorly to do the 6 minutes walk and they stopped it after about a minute because my oxygen stats dropped too low and heart was too high.Depression is a common occurrence with any serious illness and you probably will be feeling it, but don't write yourself off yet. Concentrate on the transplant option, because if it comes off, it can be life changing. It may not feel like it where you are now but it really can offer a second chance. I went from not being able to walk a few yards to walking miles with my dogs. However there will be many hurdles in between.
Try to keep up beat, I'm sure your kids will support you to the max.
Any questions just ask and I will do my best to answer.
Best wishes.
I was under Harefield tx unit for two years. I had tests and consultations every six months. We were there for the whole day so took snacks, it was emotionally and physically exhausting but good to be tested and have the opportunity to discuss stuff. All the staff are amazing and they often have other doctors or those involved in txs sitting in for their further education and understanding, only if you agree of course. Fortunately, I have remained well and stable, even managing to improve my lung function. So well in fact that I've been provisionally discharged! Good luck
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