After a few weeks of Discussion with My Hubby, Family & my Consultant Amy, I have Decided to Come off the Transplant List. I am having an Emotional Time at the moment,, it is a case of carry on waiting, getting older, I am now 67. As most of you know from my Posts, I have maintained my Body capability with Exercise and Positivity for the Transplant if it was to ever Happen. I had the " Valves" which worked, now, not so good. I do not wish to carry on Waiting for a "Phone Call" that may never Happen. So, I now inform my Transplant Team after New Year, Then I start to try and have a Life for the 2 years I have been given. I am extremely Grateful for My TX Team and all of you, my Friends to have given me the Encouragement to "Keep Going". My 2nd Great Granddaughter is Due in February, I have never Missed any of my G/Children or Great GD Births, So We are Planning to be there in Spain. Have to sort out Oxygen, etc. I will keep you updated....Last word goes to My Dear Caspiana...My Lung Transplant Buddy, Here's to you Sweetheart, I will always be your Buddy and I so Wish that 2019 is going to be your Year for your Transplant. Love n Hugs to Everyone Carolina/Hacienda, Hasta Luego Amigo's. xxxxxxxxxx
To All The Forum Family For 2019 - Lung Conditions C...
To All The Forum Family For 2019
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Life is what’s happening when your busy making other plans all the luck in the world xxxx
Oh Carolina, You are such a brave person to have strived so hard to keep yourself fit enough for the transplant journey, yet incredibly strong to have made the rational decision to withdraw. I just want to give you an enormous hug and wrap you in love.
You have a wonderful family and now I hope that you will be able to enjoy them even more without the pressure of waiting for the phone call and all of the worries associated with that.
I am sure that all of your friends on here are looking forward to many more posts from you, starting with pics from Spain.
Wishing you and your family much peace, joy and fun in 2019
Verity 💖
Thank You LP, for understanding. I will always exercise obviously, for the old Lungs. And Yes, I plan to Photograph every thing I can in Spain, Starting with a New Baby. Have a Great New Year and Long may it Continue to be Blessed with Good Health for you & Everyone. Love n Hugs, xxxxxx
Happy New year to you and yours. I'm on the same page as you and I'm pretty sure you'll feel much better now than hoping/dreading that phone call. Peace and laughter all the way caro. Lippy on love janex
Thank you Jane, It is Good to be on the same page Hun. Lippy on, onwards & Upwards, At a Steady slow Pace . Ha Ha . Love n Hugs XXXX
What massive decision you have just made. I will never know how you feel about it, as I have never been offered one, but my heart goes out to you. I know how much hard work you have put in to get a t.x. I hope the decision was yours and you weren't talked in to it. As you seemed so positive about going for it. The emotional turmoil must be terrible for you right now. And the only thing I can say is we are all here for you, thinking of you and sending our love. Gentle hugs . Pat xxx😘
Oh my....wish I could also give you many gentle hugs!😢 You have been so patient and I cannot imagine what you go through,every time the phone rings? Ultimately it is your body,your decision obviously with advice from your Lung Con,Tx Team,family & friends....but even so,a totally HUGE decision to arrive at.
You sound very sure and positive about your decision and I hope you can continue to stay strong,do all your exercises and most importantly,see your next family addition come into this world. (Camera at the ready when appropriate,lol).
Wishing you a healthy,happy New Year!🍷🍸🍹
Thank You SH, Yes, it was a very Tough Decision to make. I can now re-arrange my Future Plans. I will be there with camera in Spain. XXX Love n Hugs xxx
Wishing you all the very best of good health, good breathing and good mobility.
Wishing you the very best of everything for 2019 and beyond. Take good care and Enjoy x x
Thank You Hun. So many plans to make, Slowly, and to enjoy. XXXXX
What a wonderful inspirational lady you are dear Carolina. That can’t have been an easy decision to make and I applaud you for making it.
Wishing you everything good for 2019 and I will be raising a glass to you dear friend. You will get to Spain in February.
Lots of love and hugs to you and your family. Xxxx 💖💕🌹😘
A special kiss for Cas too. X 💋
Hi Carole, No it wasn't Easy, We have umed & arred over it since my meeting on the 19th Dec., with my Consultant. I feel a little more Relaxed now and will not be Shouting at the Phone. Hope Pete is getting Better and you are more relaxed now. Let 2019 be very Kind to you Both. Love n Hugs my Dear Carole XXXX
Wow Carolina, that's an enormous decision you've taken, you are so courageous and always so positive so I'm sure you have given it a lot of thought and are convinced this is right for you. I wish you all the best now and in the future. Enjoy your trip to Spain to see your family and new Great Grandchild. I have a Great Grandchild, a Grandchild and a great Niece or Nephew due next year so am looking forward to 2019 with excitement. Peace and the best wishes for the new year, love and hugs. Christine. XXXX
Thank you Christine for your lovely Message. I have 5 Grandchildren , 2 of whom are visiting me today on their way back Home from visiting Family in York, My Son & Daughter in Law will be with them. They are UK Based. We will have a Mini Christmas(exchanging Presents) etc. whilst they are here. All the very Best with your GC for 2019. Love n Hugs xxxxx
Here's to a great new year. As for 'the list', I understand your reasoning. Enjoy what you have. My love to you and your family xxxxxx
You are truly a very brave person. Wishing you the best you can experience. Hugs
Thank You KK, love n Hugs to you, all the Best for 2019 XXXX
You to. Go for it.
I wish you all the very best for you Carolina. Raising a glass 🍸🍻 to you and your family for 2019 and beyond much happiness and lots of love to you. Majt.💄 Xx
Hello my best buddy. 😀💕
I want you to know that you have my support with your decision. I know what the waiting is like, always living on the brink, never really being able to relax. The stress is enormous for an outcome that has no guarantees. I cannot pretend not to feel a bit of sadness, as I had imagined we'd both get transplanted next year. Yet, I totally understand your train of thought and to be honest, if it was not for my mother, I may have been happy to forgo all this stress.
Just promise me that you will have all the joie de vivre that you can muster. (I'm pretty certain because you work so hard at the gym etc. It will be far more than two years!!) Party hard and enjoy that brand new grandbaby. When I am wheeled in and out of that operating theatre, it will be for both of us.
Please do send tons of pictures. Can't wait to see them. 📷🌞💘 Sending much love and a big, big, hug.
Cas xx 🙋🐕🐾💜
My Dear Buddy, You made me weep with your Beautiful Words. It means so much to me that you Support me in my Decision. I too was hoping that we would be both together in Spirit at Transplant, You are still young, But unfortunately My use by Date, I feel, has expired at 67. Now I must plan time away from the exhausting phone waiting. I shall continue to Exercise at my Classes, ( Which right now, I'm in need of) and The Gym, and endeavour to do more at home. I will be with you all the Way once your call comes, which I'm sure won't be much Longer my Dear Cas. Sending all my Heartfelt Love to you, The Girls and a Big Loving Cuddle to Chom. Lots of Love and Big Big Hugs My Buddy XXXX
Dear Hacienda
I can only imagine the anguish you must have felt whilst coming to your decision, what a courageous person you are! I hope your family is fully behind you and will support you every step of the way. I know all your friends here will do the same! Sending you lots of hugs and a big thank you for your New Year wishes too. May 2019 bring you Love,Happiness and Peace xx
Oh my... I am sure your decision took hours of emotional wrangling and I cant imagine the turmoil it takes to even arrive at a decision. But just like your approach to life which is that of best foot forward for as long as the journey takes I feel sure that your decision will bring the peace of mind for you to enjoy each day as it comes. My the love of your family surround you. Bless you brave lady.
Hi Ledge, Yes, it took days from my last Appointment with my Consultant 19 th Dec. After Our Talk with her, My husband Listened and agrees with my Decision. I am feeling less pressure at the moment and aim to Plan things with a Clear Head. Thank you so Much for your Support. Have a Great 2019 and Love to you & Your Family. XXXXX
I salute you Hacienda, a massive decision, I'm sure you and yours have been through hell and back in making it.
I wish you a very happy, stress free, fun 2019 full of family joy - plus a few more years on top! Thinking of you. P xx
Hi Peege, Thank you for your inspiring comment. It was a very hard Decision to come to. Now though I can think & plan more Clearly. I will carry on the same , Exercises & Gym and must do more at Home, But I plan to get walking a bit more. Happy 2019 to you and yours Hun. Love n Hugs. xxxxx
What a difficult decision to make Carolina but I am sure you have made the right one for you. Wishing you all the best.
When I hear stories like yours I think it's not fair that a wonderful and well loved person like you has this prognosis when someone like me who is alone carries on with a useless and unloved life. I would swap with you if I could. Bev xx
Yes Bev, I have been thinking about it long and Hard. My Decision is Based on the time I have been waiting and my Age. May only have a couple of years left so, want to live a bit by travelling to my Beloved Spain to see my Beloved family and the Pending Great Granddaughter No. 2, Ebony. Will carry on with all our Bonding here on this Great Forum. Very Best Wishes for 2019 Bev, to you & your family. Love n Hugs xxxxx
We love you.
Ah bless. Thank you. x
We Love You Too Bev, you are a vital link to everyone here. Thank You heart. Bless You XXXX
Thank you my dear. x
Well Carino somehow i new you would make this decision,you are brimming with life,far more so than many with far bigger lungs and i know that you will use every second of a life that extends far beyond that silly figure of 2 years somebody in a white coat has given you.
For us the bling has failed to make dramatic changes in our lives but it was worth the while trying and who knows there may be benefits around the corner if the future.
So put that lippy on,make those preparations for your journey to a land we both hold dearly in our hearts and wrap yourself in the warmth of your family.A new life is just beginning again for you.
Besos my brave warrior.
Ski's and Scruff's xxx
Hola Carino. I just knew you had a Feeling, it's that Crystal Ball isn't it. Thank You My Amigo, Yes, have to take a step Back and let some Youngster have those Good Lungs, which is probably what's been happening for awhile?. We have been given a great interim Breathing Bling, as of now , mine needs some of those Bunny Batteries. I am very Grateful for the NHS and will enquire about more in March when I go back to see Amy. Now that I am feeling less pressured I can think Clearly for the Year ahead, and Plan Beyond, as you say No-one can predict your Life Span. I'll make the most of it, Very eager to get back to my Classes & The Gym, After all this Sitting around with Festivities and Chocolate. Ha Ha Though it was very Good, eating them all. Wishing you a Great 2019 Carino and please give Scruffita Gentle Cuddles from me. Sending Amor, Abrazos, y Besitos . XXXXX Love n Hugs. xxxx
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Hey Carolina, that sounds like such a huge decision but definitely the right one. Glad it feels such a relief so now onwards and upwards with your beloved family - we look forward to happy tales from L'Espana. Love and strength to you and great respect xxx
Thank You Hun, Trying to catch up and reply to everyone. Yes, it is a Big Decision, But, one I am now Happy with, I can work my future to my Family also, and Go and Visit them in Spain. I'm not getting any Younger, make Hay and all that . Happy New Year to You & Yours. Love n Hugs XXXXXX
I’m certain you have given tremendous thought about this decision. It’s not an easy one. However, stressing and being held hostage to a phone call that may never come or a transplant with no guarantees you are now free to enjoy the rest of your life. With exercise and doing all the things you can to stay healthy you may have longer than you think. I had madecthe decision to not have a transplant years ago when I asked my Dr. would you do it if you were me? He said no I would not go under the knife. Then he told me he did not think with all my combined illnesses I would be a candidate anyway. So that was that. It caused me enormous stress wondering whether I’d have more time just moving on with my life or taking the risk of dying on the table or shortly after the transplant. All the anti rejection meds etc. it’s a very individual and personal decision. So I know it was difficult for you.
Thank You Hun, You do Understand, It was not an Easy Descion, One I am glad I made Though. Love n Hugs, All the Best for 2019 xxxxxxxx
Life’s what happening when your busy making other plans. All the best in the world xxx
Thank You Christina 1947. Happy New Year to You & Yours. XXXXX
Wish you well. Hope you are still posting for many years to come xx
What a very brave decision to have made. I wish you all the best in the world. Many blessings to you xx
Thank you so Much Hun, for your Lovely Words. Happy New Year To You & Yours. Love n Hugs XXXX
((((Hugs)))). You must feel such a sense of relief now. Enjoy 2019.
I felt very sad reading your post. I am newish here but always read how positive you are. That said you are the best person to judge what is needed for you. With a wonderful family around you and more to look forward to I wish you great happiness and good health.
You are very brave and inspirational.
Thank you my love, that is very kind of you to say. Yes, had my Christmas Visit from 2 of my Grandchildren Yesterday with parents,(they live 3 hours away from me), Once all was explained properly, There where a few Tears Especially Mum & Daughter. But, I have New Year Resolutions, To Stay Fit with more Exercise & Positive for as long as I can...Happy New Year Hun. XXXXX
You live life to the full girlfriend .. xx
Thank You Rosie. Tonight will be the First time I don't Party , I did last year but it was an Effort on my Oxygen Ha Ha, I'll Party to the TV tonight and have many Phone calls I can respond to without the party Blasting in my Ear. Happy New Year Hun. XXXX
Your a brave lady and I wish you all the best for the future. Enjoy your life .x x💖💖🌹🥀🌷
Wishing you all the very best of everything x
You showed great strength of character with this decision. I wish you the best of health and happiness for 2019.
Hola Carolina
You did well. It is a lot of stress at 67. So am I. They don’t consider lung transplant after 60/65 here well if you are healthy otherwise which I am not.
I don’t need to take undue risks I have enough on my plate.
So I think we can live as freely and as comfortably as possible now.
Lots of love 💕Fran
Happy New Year Fran, Yes your so right, Live now but still , I will carry on with My Exercises. Right now I am back on Prednisolone as my Breathing is a bit shallow and chest tight, I put it down to No Classes over Christmas, and probably over Eating. Mmmm Lovely.
Roll on Thursday first class back, Some How I think we will be rather Over packed & Bulging with Chocolate Bodies. Ha. love n Hugs Carino. XXXX
A brave and difficult decision I imagine. But you still have a great deal to look forward to - your plans and exercising etc are inspiring, thanks. Have a brilliant 2019
Thank You, Same to You Stamford, Have a Great New Year, and the rest of 2019. xxxx
So sorry to have missed this post. Life has been hectic, family here (Need I say more?). So only just catching up from your reference in today’s post. What a wise and very brave decision. It cannot have been easy. But — for you —- where you are now right the right one. Well done. Others would have chosen differently but they are different and you are you. (Good heavens, Kate, what a clumsy sentence, but you know what I mean.) so, well done. Love and hugs
Kate xxx
Thanks Kate, means a lot to hear your opinion, everyone has been supportive also. Hope Your New Year has been kind so far and you have caught up with yourself, ha ha. Yes, I now inform My Transplant Doctor Tomorrow Morning, I am sure he will Agree, Time is not on my side now. Wishing you a Great 2019 and Always be Happy & Positive, Love n Hugs Hun. XXXXX
As the newby to this site I am so moved by all the positive support that comes from you all, even when the post has difficult news to relay and digest.
As none of us know how long it will eventually be, enjoy the rest of your life Hacienda, your growing family, and the peace and calm of not worrying everytime the phone rings. You are inspirational xx
Dear Hacienda,
It’s such a hard decision. I completely understand. I am at the other end and have been asked to sign up for the list tomorrow. All sorts of things are going through my mind and I don’t know how I will be able to cope with the waiting. I desperately want to see my mother who is miles away in a care home in Devon- not as far as Spain but it feels like a million miles to me. I don’t have anyone close to me who can drive, so at the moment I don’t know how this can work, but I feel I must give it a try.
I wish you good health and happiness and hope you have a wonderful time in Spain with your family, you deserve it.
Good luck honey,
Love K
Hi Kelda, Thank you for your Lovely Warm Message. Yes, you must carry on , Have you had your 4 day Assessment? You must think of yourself at this time of your Life. I have had 2.5 Years and getting older, Although I am a Young 67. I am on the QE Hospital Website so get to know most Pro TRX patients. I have until the 19th March to determine my Decision. Which I won't change now. But you Must carry on and get on the List, it is vital you Do Hun. We are all Different, My Good friend who is 55 had her Transplant just as I went on the List, she is doing very well now, I hear more good stories than Bad. Please Don't Hesitate. Just think of your Mum being very Proud of you. I am Phsycing myself up to Travel to My beloved family in Spain. My Granddaughter is about to have her baby Girl, I won't make it for the Birth, But I will be there to Cuddle her. Good Luck Hun, and be very Kind to yourself. Love n Hugs XXXXXX
Sarcoidosis messed with the wrong woman
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