Transplant list

[Kelda]

Hi everyone,

I just wanted to let you all know that yesterday I signed to go onto the transplant list. Now the waiting starts.

Love K X

[ross-35_]

Well done at being accepted! I have been there and done it, and its wonderful to breathe properly. Read through the book they gave you at assessment so you know exactly what it is all about. Good luck x

[Kelda in reply to ross-35_]

Thanks Ross-35,

I hope you continue in good health. It’s scary but exciting at the same time. I am glad to have made the decision anyway, and am enjoying the spring. I would be interested in hearing any advice you may have.

All the best.

Love K x

[ross-35_ in reply to Kelda]

first thing to you...is pack a small case with all you will need during your time in hospital.....also get an outfit that you can just pull on quickly...as once you get the call its so exciting and nerve racking there's no time to think! I had an hour to get to the hospital they sent an ambulance, its mayhem but exciting too. Just in case don't build yourself up too much, it could be the lung(s) are not suitable and you get sent home.....thankfully i was taken. I hope you are too. The assessment you had will give them all the info, you will be knocked out so will not know any pain, the Doctors and nurses are wonderful so well trained, you can relax!! Write down a list of goals of things you can do that you couldn't do with the oxygen. Kelda there are lots of things, one thing i did not do was look at what happens after the transplant. If you look through the booklet you have you will see various things that can happen afterwards. Make sure you know all this please.

[Kelda in reply to ross-35_]

It really puts things into perspective. I can imagine I’ll be panicking when I get the call, so it’s importsnt to get as much planned out as possible. It’s great you got an ambulance sent for you. I am having to rely on friends or possibly a taxi. I will ask them about that.

I have read the booklet and the surgeon made sure I understood all the risks. It’s scary, but I feel this is a good choice for me. I e been struggling for a long time now. I feel that I can begin to look to the future a bit more and make a list of things I’d like to do after the op. It’s an amazing thing but not perfect I know.

Warm wishes and good health

Love K X

[ross-35_ in reply to Kelda]

Hi Kelda, the ambulance was sent for me, as it will for you too. There is only a certain amount of time they can wait for you, so thats why they send one! I went to Wythenshawe Manchester and thats their policy!! So check that out. Keep me posted please and take care xx

[Caspiana]

Welcome to the "Waiting Club" Kelda . xx 🙋🐕

[Kelda in reply to Caspiana]

Thank you Caspiana,

It’s lovely to hear from you and I hope you are well. Which centre are you with. Perhaps we will see each other at clinic one day.

Spring is here and I am feeling more hopeful for the future.

Good luck to you my friend. I hope you get the call soon.

Love K Xx

[Hacienda in reply to Kelda]

You will have to travel to Japan to see our Lovely Caspiana. Xxx

[Caspiana in reply to Hacienda]

Hey you💋😀. *MASSIVE HUG* You feeling better?

[Hacienda in reply to Caspiana]

Good Morning my Dear Dear Buddy, it is 5.35 am here, I am up early as I go to bed early. I hope you are well Dear Cas . I know what my Problem was. The Valves have to be retrieved, cleaned and reinserted, Hopefully when they have done this I shall be back to my Old Self, waiting for appointment for CT Scan. It is always Lovely to hear from you, makes my Day Better. Love n Big Hugs Buddy to you & Chom, xxx(Princess is well Better and we both have been cuddling each other). xxx

[HungryHufflepuff in reply to Hacienda]

I hope this will happen soon, so that you can start to improve again. It's good to know Princess is doing better too 💐

[Hacienda in reply to HungryHufflepuff]

Thank You Huff, I have had to cancel my Plans for Spain, So, My family will come here in June. I do hope I have had the Valves done by Then? so I can do all the Nanar things for my Great Granddaughters, Ebony will be 4 months old by then, Desperately Need to Cuddle her. Hope you well Hun. Take care. xxxx

[HungryHufflepuff in reply to Hacienda]

I’m sorry to know you’ve had to cancel your plans for going to Spain. Hopefully it will be possible in the future? But it’s lovely your family are coming to you instead. I really hope you have your valves done by then 🤞

[Hacienda in reply to HungryHufflepuff]

Yes, Princess is so well now, lots of cuddles for her always. xxxx

[Caspiana in reply to Hacienda]

Oh my, I had no idea that the valves could be retrieved , cleaned and reinserted. 😱 How long will that take? Is it done all in one procedure? It's a little bump in the road Carolina, I am sure you will feel better once the dust settles. Thank goodness also Princess is better!

I have been busy working on a small river for my village. Chom is well and asleep on my leg after his breakfast. Please do keep us updated with your valve situation. *BIG BIG HUG* xx 😍😘✋🌿

[Hacienda in reply to Caspiana]

Good Morning my Dear Cas, Yes, this is how I was told it could happen depending on the Clear Information Results from a CT Scan. I know the Scan has been requested by my Consultant, just waiting for the Appointment. I am back on more Oxygen at this moment, which is very annoying for me after all my hard work of Exercise & Positivity, I was hoping the Valves would have lasted longer, all Lungs are so Different, as we have come to Learn from this Great Forum. I so Wish Skis is doing well today as he also has his "Check Up" on his Valves that didn't work. I will know later I hope, when he updates his Hospital Stay. Well my Dear Buddy, Sending Love n Big Hugs to you & Chom , Love Licks to you Both from a Fully Recovered Princess. xxx

[Caspiana in reply to Hacienda]

Hello Carolina, 😁

I sincerely hope this is just a little "bump in the road" and you will feel tons better very soon. You are the most positive and hard working person I know and you never , ever let things get you down. * HUG* Please keep us updated. So happy Princess is well again. Chom I and send our love. xx xxx 😘🐕💓

[Caspiana in reply to Kelda]

Hi Kelda , my transplant centre is in Tokyo. Please do keep in touch. xx 😘

[Hidden]

Hope you don't have to wait long for the phone call. 👍🙂

[Kelda in reply to Hidden]

Thank you Don,

It’s a positive step forward I feel, although still a scary prospect, I’m glad the decision had been made now and I can get on with trying to get as fit as possible and enjoying each day as it comes.

Lots of luck and good health to you

Love K X

[christina1947]

That’s just brilliant wish you luck on getting an early phone call and while your waiting keep busy on your fitness level take care xxx

[Kelda in reply to christina1947]

Thank you Christina,

It’s been lovely to get so much support here. It really makes a difference. I am so glad that the winter is now behind us and am doing my best to get out and enjoy the spring. I am going to fit to breathe each week and hope to start swimming if I can soon. It had given me a goal to get as fit as I can and a determination to stay positive and make the most of every day.

Wishing you good health.

Love K X

[Thomac]

Great news fingers crossed for a short wait

[Rachelmcc80]

Wishing you good luck x

My fiance was also added to the list this week! It’s been a rollercoaster, at the three day intensive check they found a new nodule that needed further inverstigation.... following another two month wait, another scan and two week wait for the results, we finally got the news we needed to hear!

[Kelda in reply to Rachelmcc80]

Congratulations on your news. Thank you for your support and good luck for the future.

Love K x

[Ergendl]

All the best. Hope you get that call soon.

[Kelda in reply to Ergendl]

Thank you Ergendi,

I am content to wait and to hope

Love K X

[Queenbean]

Congratulations kelda ... good luck to you. My mother was listed on Friday ... sit and waiting now.. she said she would like to speak to people in a similar situation... please let me know if you be interested in chatting...

[Kelda in reply to Queenbean]

Hi Queenbee,

Congratulations to you and your mum on her listing and thank you for your message.

It all feels a bit surreal to me still, but I do feel it’s a positive step forward.

I am very happy to talk to your mum or anyone going through this process. It’s always good to share experiences and connect with others.

Fingers crossed for a better future.

Love K X

[Anneinoxon]

Fantastic news for you to get on the waiting list! I had a "don't know if I should laugh or cry" moment after a recent visit to the Respiratory clinic.... my med for the suppression of my immune system is not working very well so I now on a different medication. As a by the way I asked if I could have a lung transplant. The doctor said as I was otherwise very healthy she would look into it. She phoned me up later and said "you nearly got away with that request, I thought you looked 62 years old, it was when I checked your records you are 72 years old!" Evidently the age cut off point for transplants is a max 65. The good news I look 62 the bad news I am still too old for a transplant!! I call that ageism, but in my heart I know that any spare lungs available should be made available to younger people. I have had a good life and there is not much unfulfilled on my bucket list so I am happy

[HungryHufflepuff in reply to Anneinoxon]

Not the same thing I know, but a friend's mum needs a hip replacement, she's just had her 60th birthday and been told she's too young, she has to wait until she's 65 then reapply. She's just had to quit her job. So now she sits at home all day watching television.

There's always a bigger picture but to assess something merely on age and not on a case by case basis doesn't seem entirely logical to me.

But congrats on looking 10 years younger 😊

[Kelda in reply to Anneinoxon]

Thank you for your support Anneinoxon. I am sooty you are not able to be considered for a transplant.

My surgeon said that not so long ago they would not consider anyone over the age of 50 , so I guess improvements are being made all the time.

Well done on your youthful looks and spirit by the sounds of it. Yoo sound a very positive person and that’s important. I must sit own and make a bucket list of my own.

Wishing you pod health and all the joys of spring.

Love K X

[Anneinoxon in reply to Kelda]

Bucket lists are a must. It is not so much doing various bucket list things it is the panning for the future that is important. Keep positive and try not to worry (ha!) but remember.....worry is like a rocking horse, it gets you nowhere! That has always been my philosophy in life, the glass is always half full not half empty. Sorry about the terrible cliches!

Keep us posted on your progress and happy bucket list making!

Anne

[Anneinoxon]

You are right about about assessing on need rather than age.... I was lucky as I have had 2 hip and 1 knee replacement before I was 65. I could not have imagined what it would have been like to wait in the pain the arthritis gives you for 5 years or more. Shame the Oxford hospital couldn't have taken the same view regarding a lung for me!

[Hacienda]

Hi Hun, I am very Pleased for you. I am a Staunch Promoter of Transplant and will do my utmost to assist and send the Messages for BLF, plus raising funds for them. If you look at my Profile you will see I have just recently "Come off" the waiting List, we all have our own personal reasons. A few Comments here saying that 65 is the cut off limit for transplant, I tend to think if you maintain a fitness level to be strong for Transplant, which is a Huge Op, then maybe you can have it at an older age? I have been poorly these last 2 weeks with the Lungs, as My Valves have appeared to not be working as well as they were, now waiting a CT Scan so to determine if they can be retrieved for Cleaning and re-inserted. Waiting game Again. !!! We can never know what the future Holds, I say go with your Gut Instinct, it is normally right. Just to add, I had left Hip Replacement at 57 ,to disperse the "Myth" of "having" to be over 60 as someone has said on here. I am now 67 and apart from this Hiccup of Valves, I am doing my best to stay fit and Positive. I am sure you have many questions rolling round your Head. Your Transplant Nurses are the Best to give you those accurate Answers and of Course your TX Doctor whom you will see at 3 monthly Tracking Appointments...I Wish you a very positive Wait, I do hope your not waiting too long. Love n Hugs. Carolina XXXX

[Kelda in reply to Hacienda]

Thank you Caroline,

It still seems a bit unreal. I am feeling positive and am doing my best to stay fit. It’s lovely to have some sunshine and I take pleasure in that. As you say nobody knows what the future will bring so I intend to make the most of each day as it comes and try not to think too much about ‘the call’.

I hope you get your valves sorted soon and feel better for it.

Wishing you lots of luck and good health.

Love K X

[Hacienda in reply to Kelda]

Thanks K, Just bought myself a second hand Auto Tread Mill, now goes with my Exercise Bike, weather warmer will use them outside in Garden, my Gym is closing Down and Needs must. Onwards & Upwards for us all Hun...Will be following you now . Love n Hugs xxxx