Starting double lung transplant assessments…mixed feelings!

[Mrbojangles]

Whole raft of tests being booked involving all major organs, bloods, mental wellbeing,family support and even teeth..😜😜

Been expecting this for a year but now obviously experiencing mixed feelings as reality sets in.

Anyone who has gone through a similar experience i would love to hear from you with tips and advice.

Stay safe everyone, this virus is still rampant with the additional worry of the MU variant .

Xx

[RoadRunner44]

Hello, I can't give you any tips but would like to wish you well and hope you have a swift recovery from your operation.

[Dedalus]

All very best wishes going forward, whatever you choose x

[cofdrop-UK]

Wishing you well Mrbojangles and hopefully our Cas and/or others with experience will be along with advice and support.

With love cx

[Hidden]

I will be thinking about you as you go through this process. I do hope that it all comes together successfully.

[CDPO16]

Best wishes as you begin this assessment. I hope that it works out well for you.

[Badbessie]

No experience but I did work in an area where patients were transplanted. (Kidney). There are good reasons for the workups including the teeth? Obviously the want to reduce any risk of infection post op and your teeth is one of these risks. Your reaction to the workup I think is fairly common. You can talk through things but it only becomes real when the talking stops and you start the tests and procedures. I wish you luck that all goes well.

[Suzie42]

Good luck with it....read Caspiana 's feeds

[Hidden]

Good luck with all the tests Mr B.👍

[Annie31]

Very best wishes to you and your family MrB😃

[Karenanne61]

I sort of understand where you are. I have been referred to the Harefield to begin discussing a lung transplant. There are some post op members on here who are lovely and helpful I'm sure they will offer help and advice. Keep strong!

[Caspiana]

Hello Mr. B,

What can I say about pre testing? The first thing they do is to take from you about twenty viles of blood and it will be the most thorough health check up you've ever had in your life. It can be quite tiring as there are so many tests some not so pleasant . I won't go through it all but I will say that not only are they testing to see your body is a good candidate to go through this operation but they want to know you are mentally able to manage the rigours of transplant and the subsequent lifestyle. They may find things you need to fix as a condition for putting you on the list. Things like cavities, or weight loss or gain. I had to have an operation on my nose to correct a deviated septum. Take it a day at a time. It will be okay. And we are all rooting for you.

Hoping to hear your good news soon.

Cas xx 🙋

[Mrbojangles in reply to Caspiana]

Thanks Casp,They tell me it’s about 4 days of inpatient testing which says i'm getting a full MOT and service.

Already told me my weight , age and height are in my favour but frustratingly i am O Negative which does lengthen the odds of finding a suitable donor.

Obviously organ rejection is a major concern but from what i read they are on top of this with amazing drugs etc.

I realise it will be a life changing experience which i'm up for and hopefully the drugs they put me on post op will not impact too much on life in general.

Living with someone else's organs in my body may or may not present its challenges but i believe i'm strong enough mentally to cope!!!

What i do have though is the amazing support of my beautiful family and i know they will always keep me on my toes …❤️❤️

Stay safe and God bless.. xx

[Caspiana in reply to Mrbojangles]

Ah, the I negative factor may indeed take a little longer for a match. But we are not navigators in these events and I believe the right pair of lungs will come to you as they are meant to. I am assuming you are up for a double? The medication inevitably will impact you and your life as they are pretty toxic. But, like the rest of us you will find a way to manage. Having good support is a huge plus. So take the bull by the horns and go for it!! Wishing you the best of British luck. 🍀🙋xx

[Alberta56]

Best wishes. xxx

[HungryHufflepuff]

Wishing you all the best MrB.

[HighGables]

Hi MrbojanglesI was on the transplant list with Harefield for two years, sadly no phone calls in that time and I chose to come off the list as my health was declining.

My first visit was overnight, so two very full days. I first saw a senior nurse who gave me lots of information. From what I remember the next one was bloods. Think it was about 14 vials that I counted! Then ECG, CT scan with dye, where they discovered I was allergic to iodine. A normal xray and the one I hated most, the lung function test.

Forgot the teeth! I had to get a letter from my dentist to confirm that my teeth were in good condition. I think this is due to the toxidity of the medication afterwards.

At the end of the second day we met my consultant and then had a meeting with a transplant nurse. It was a fairly long meeting and I was very tired and it was hard to retain my concentration. At that stage I couldn’t wait to get home!

The staff at Harefield are lovely and very helpful and you get a contact number for any problems.

I then went back every 6 months for most of the tests to make sure I was still fit enough for a transplant. You are given a list and work your way around the departments.

I wish you every success in getting some new lungs. 🤞

Be positive, and try to stay fit and healthy. I’m behind you all the way, as are all your lung buddies on here.😊 Jax🐶x

[Mrbojangles in reply to HighGables]

Thanks …Wow, 2 years and no joy!

How are you feeling now?

I too will be at the Harefield and from what i gather they are excellent throughout.

Did they ever mention to you anything about staying local for a couple of months post op in case of rejection?

Stay safe…xx

[HighGables]

Yes they did MrB which is quite sensible. My journey from home took between 1-2 hours depending on the M 25. I think you can have a lot of hospital visits in the early days of discharge. When you go for your assessment appointment, make sure you take a list of your questions.

Sadly I have been better. On o2 24/7. My time is split between bed and settee. I’m well looked after by my two children, and my dog Bertie is a good companion. I love watching the birds in the garden, just wish I could be out there with them with my trowel in hand.

Onwards and upwards as they say.

Jax🐶x

[Mrbojangles in reply to HighGables]

Aren’t kids amazing when it matters?Bless you being on O 24/7 that must be quite challenging.

I’m on 1 cylinder a day ( 480 ltr) which is plenty and using more and more as each month goes by.

Netflix and Politics keeping me sane as i somehow struggle to read these days due to concentration lapses.

Like you i love the birds in the garden, gotta a very cheeky, tame Robin who calls in everyday despite my elderly cat ( 17) glaring in frustration knowing she could never catch him.🤪

[HighGables]

Also meant to say that at the your 6 monthly appointments, in the afternoon, you get to see your consultant or registrar. They go through your tests and tell you how your doing. Jax 🐶x

[Ergendl]

Wishing you all the best as you go through the process.

[madonbrew]

Thinking of you MrB!

[mary1956]

Hi, I’m now on the transplant list at Harefield. I had my assessment at Birmingham, where I was initially referred to. It involved, bloods, X Rays, angiogram, CT scan, 6 minute walk test, ECG, and probably a few others. I had a long chat with one of the transplant nurses to ensure I was mentally fit to receive a transplant. None of the tests were too bad, and the care was superb. It is all very tiring. Getting onto the list was a great relief.

Coping with being on the list is tough. Constantly waiting for a call can be stressful , and everyday without the call is disappointing. I’ve now been on the list for 14 months. Good luck on your journey.