It’s been a while.

[insanemoose]

I haven’t posted in a while I haven’t really had anything to say, I’m 2 years on since my diagnoses 24% lung function and still on oxygen when I sleep. Haven’t had any hospital trips & only 1 round off antibiotics so my consultant is very happy with me as I’m still off the cigarettes and Still very active. Yesterday he brought up if I would be interested in been assessed for a double lung transplant it’s totally knocked me for 6. I guess I naively thought if I kept doing as I was told I would just potter on like this!! Huge wake up call. Any advice would be appreciated thanks xxxx

[Hidden]

You’re young for such severe lung disease. You must be an alpha. I’m alpha one ZZ. My go asks me at every office visit if I want to get on the transplant list.

[Mandy6513]

I agree you are very young. I was in my late 40s and everyone said I was very young. Here is my advice. Get the assessment it takes a while to get it all sorted out and none of it is scary it's just x-rays scans blood tests etc. I could tell you more if you wanted as I'm on the lung transplant list too. Go for the assessment. Nobody will tell you what you should or shouldn't do you won't be pushed in any way they will just assess you then tell you if they would offer you a transplant or not. Once that's done you can decide if you want it or not or you can get on with your life and not think about it again. My advice is get the assessment get the answers because it took me 3 years to decide I would go for transplant and I'm so much worse now and I'm so tired now and I'm in hospital a lot now. I know it's scary but it's just a few tests then you may be given the choice of getting your life back . If you need any info just inbox me . Mandy x

[Diane11270 in reply to Mandy6513]

Sorry to hijack your post insanmoose but I am in the exact same shoes as you, 3 months ago I was told mung function was in the low 20s and the dreaded transplant word appeared, i felt i had been given a death sentence that second, my consultant gave me 3 months to think about it and believe me I've done nothing else but I'm petrified at the thought of it but reading mandy6513s reply makes me a tiny smidge at ease. Would be nice to keep in touch, ta xx

[insanemoose in reply to Diane11270]

Hello Diane I hope your well! I would love to stay in touch see where this journey takes us both. X

[skylas in reply to Mandy6513]

Hi I've got to go wythenshawe for the 3 day accesment I hate needles really bad n I've got to have one with ct thorax n abdomen with contrast n another with the heart catheterization n blood tests n not sure how many more x did u have these I'm 49 x

[Mandy6513 in reply to skylas]

Hi sorry I can't help no I didn't have these and don't think that's a transplant clinic ?? Don't be scared they will do everything they can to make you feel comfortable x

[skylas in reply to Mandy6513]

Yea it's a transplant clinic I wonder why I'm having them then I'm sure il find out am dreading it x how u doing now x

[Mandy6513 in reply to skylas]

Hi. I had a CT scan where they give you an injection and blood taken but didn't have what you mention. Do you have a heart problem. I'm doing ok life on the list has been long for me because I have very high antibodies so have been waiting quite a long time so keeping emotionally upbeat is really important . All the tests you have will end after a few minutes be brave you will be fine I'm sure the staff there are just as amazing as harefield xx

[skylas in reply to Mandy6513]

How long have u been on the list x no I dont have a heart problem well not what I no of think its cause it's nearly ere when I go on wednes b flag when all the tests r done n I no weather it's a tes or no x keep well x

[Mandy6513 in reply to skylas]

Ok perhaps different clinics do different tests all I had was a heart echo but the one your having my sister had last year and she said it was fine. I've been on the list since June 2017 I did get suspended for a few months because I got a bit frail so an important thing to do is get as much exercise as you can to keep fit x

[skylas in reply to Mandy6513]

Ad my 3 day accesment goin home now but got to come bck for bone scan as not enuf staff so shud find out if it's a yes or no by the end of this month il let u no x hope your well x

[Mandy6513 in reply to skylas]

Oh that's a simple procedure . Glad it's all done now just relax and wait x

[skylas in reply to Mandy6513]

Aw thanks x yea will do xxxx

[simplesprout]

Hi, i think mandy6513 has given good advice. I was first given the offer to be assessed for double transplant 4 years ago, i went to wythenshaw to see what it was all about and after a long chat with one of the doctors decided to put it on hold as i was still pretty active and didnt need oxygen at all, also will add i had never been admitted to hospital. However january 2018 saw me in hospital for most of the month and since then been admitted twice more so early this year i decided to move forward and agreed to go back to wythenshaw. To cut a long story short, i did my 3 day assessment in march, which flys by due to the tests and are really nothing to worry about, and now im officially on the transplant list. Everything is really well explained, and it is a hugh decision, but its also an option that could change my life. Personally after how ill i felt last time i had pneumonia i think it is the right decision for me. Each one of us is different and you may decided it isnt for you, however its always good to have added another option.

Best of luck for which ever road you take.

[skylas in reply to simplesprout]

What tests did u have done x I'm at wythenshawe on wednes for the 3 day accesment I'm terrified of needles n I've got to have a ct thorax and abdomen with contrast n a heart catheterization m blood tests not sure what else yet I'm dreading it x

[simplesprout in reply to skylas]

Hi , the biggest test is the heart catheterization as far as intrusive tests go but it really is nothing to worry about. The staff on the jim quick ward are fantastic and really make you comfortable and relaxed. I know you will be apprehensive but try not to work yourself up too much. The first thing when you get there is blood test then after that its things like bone density ,ct scans, ex-rays all of which are non invasive. To be honest the time flys by and before you know it you will be back home.

Think of it as a comprehensive MOT and if all gos o.k. you will be on the list which in my case has made a huge difference to my life now ive had my tx. If i can help you with anything else just ask away

Best wishes and good luck for your the outcome.

[skylas in reply to simplesprout]

Aw thanks so much il let u no what happens x what wud u say is the worst thing to ho threw n now u ad it done what's it like wud u do it again x

[simplesprout in reply to skylas]

Yeah i would go through it a million times to be like i am now, i took my dogs around a huge nature park at 8 this morning, 6 months ago i couldnt walk to my front door. Dont get me wrong, no pain no gain, but the pain can be managed qnd only lasts a few days/ weeks at most. Go for it... xx

[skylas in reply to simplesprout]

Yea if I pass all the tests I'm def guna have it done just hope I do il let u no x ps how long where u in hospital n do u have to have the camera down regularly now x

[simplesprout in reply to skylas]

Its standard practise to have 3 broncs ( cameras ) in the months following transplant just to check for rejection infection etc, and although uncomfortable a necessary proceedure. When i had my tx i was in hospital 19 days but everyone is different so that is nothing to go on,however not many spend less than that.

Keep up the posts to let us know how you get on.

Best wishes.

[skylas in reply to simplesprout]

Wow 19 days does that mean u ad a great match n u must b strong person x aw keep well n take care x

[simplesprout in reply to skylas]

Just lucky i guess, there was a couple of tx patients on the ward while i was there (one lass in her 40s) had heart and lungs but they were all dojng well and i see them in clinic from time to time and they are all still doing good. X

[skylas in reply to simplesprout]

Aw wow that's nice to no yea I'm just 49 but feel 80 ha ok keep in touch x

[skylas in reply to simplesprout]

Ad my 3 day accesment just waiting to go home now but dint have bone scan cause of short of staff so will no at end of mo th weather it's a yes or no il let u no x hows u x

[simplesprout in reply to skylas]

Hope everything went ok for ya and not too stressed, i will be keeping my fingers crossed for a positive result and you never know may see ya in clinic at some point x

[skylas in reply to simplesprout]

Yea went better than I thought n yea hope I do c u in clinic some time xxxx hope your well xxx

[simplesprout in reply to skylas]

Thats great, home chill out and a glass of something stronger than tea.😁after the 3 day ordeal. Take care xx

[casey16gatsby]

Some very good input.

I'm also --in the 'thinking' phase. Not an easy decision by any means.

Like Apeter7874 --I'm a ZZ Alpha.

All the best!

JCL

[Lemon7]

I dont have any experience or advice to pass on but want to wish you well. Hope everything goes well for you in the future.

[tracyglenn]

On my last doctor visit i was told that they wanted to do a certain CT scan and see if im a canidate for the one way lung valve surgery and if im not or if i am and it doesnt help then they want to do lung transplant. Im scared to death of a transplant so praying the lung valve surgery will work out im on 24/7 oxygen i think i stay on it more due to panic more than anything else it kinda gives me peace of mind having it. My lung function was at like 28% i think. Im 46 and feel 90 i hate not being able to walk without losing air and panicking over it . Does your heart rate jump up when you stand or move around ?

[Hacienda in reply to tracyglenn]

Hi Hun, This Thursday I go to have my "Valves" reassessed had 4 put in last June, and they worked fine, Almost a year on and they are not working as well, so Hope this time when they are "Sorted" I can continue to have an Active (ish) life. I was on the Transplant list for 3 years without a call, so went for Valves, I'm 67 now so decided to come off list and get on with my Life as best and happy as I can. Good Luck, We must try new Technology when it's offered. xxx

[tracyglenn in reply to tracyglenn]

Well ive had the lung valve surgery and it can take 6 to 12 month before i notice any improvement i my fev before surgery was at 19% a few days after surgery it was at 21% so about the same im hopeful this will help me get off oxygen soon so i can live life without a hose in my nose 3 years of wearing that is to long i pray it wont be much longer to tell a difference even a little bit cause as of now im pretty much worthless cant even walk a few steps without getting breathless.

[janice01]

Its not an easy decision....

Im down to upper 20s% lung function, not on oxygen and never spoken too about transplant.

I will see prof at Bromp later this week.

No longer stable and need cotimoxazol x7 days a week.

Would like to return to 3 weekly but feel that may not be possible.

Im going to again request laser treatment to pull in top lobes of lungs.

Should have said ive Asthma, Bronchiectasis and small airways disease.

Still fairly active although severely restricted in comparison to how l was living.

Been awarded top rate P.I.P.

And have the help needed for most things.

If l was offered the chance of a transplant, l would be thinking how it used to feel to breath easily and seriously consider my position as a dependant on my family....

Not much help to you l know but its an oppertunity you may not get again....

Good luck in whatever you choose to do.... x