I received the promised letter from the Consultant at The Royal Brampton today..... Not good news at all, it seems they cannot help me at all. You can imagine how I feel no doubt, i had so much hope i would qualify for at least some experimental tests, but nothing. All he can suggest is doing more rehabilitation, fat chance of that with my 4 slipped discs.
My breathing is REALLY bad now, and it takes forever to attempt anything.
How disappointing.
That’s terrible news Woofly and I really feel for you. Xx
Sorry . It must be so disappointing. 🥺
Sorry to hear that. You must feel so frustrated with news like that.
Aww, that’s hard to hear! Especially when you’ve been hoping so much! Sorry!
That almost seems cruel when compared to your earlier messages when you had such high hopes. Really saddened for you Woofly.
Thank you all for your kind messages, I have to say I am totally gutted, it was probably silly to have so much faith in the Royal Brompton..... ah well ......
So sorry to hear your news take care
I’m really sorry to hear that. Thinking of you 💐
Woofly,for some of us myself included there are only so many surgical interventions our consutants can do,even the Royal brompton.a so called centre of excellence can only measure our tolerance to those procedures and balance that against the quality of life we will achieve and the risk to our lives in doing them.i fortunately had one crack at the valve implantation,it didn't work for me and now i can have no other procedures because my lung function would not survive them but they will still give us oxygen to carry on living and we can still work on keeping as fit as possible and eating the best we can and still get something akin to pleasure out of the rest of our lives.
Keep smiling and giving it your best shot,thats all we can do.
Best wishes Ski's and Scruff's
🙃😻
Thank you so much skischool, I know you are right, but it has hit me really hard. Thank God I have a wonderful husband, and a daughter that speaks to me everyday. 🙂
Oh, I sense your emotions will be playing havoc with you Woofly. I am so sorry and wish I could find suitable words of comfort. Now try to relax and re-group. What did your consultant mean by more rehabilitation? Have you asked what the next step should be and what is planned for you? You need firm answers to help you deal with the way forward now.
Thank you so much roadrunner, I really appreciate your kind words.
Sorry to hear your news
Oh Woofly you must feel devastated. Try to keep hope alive. Consider looking into the rehab maybe the rehab could be planned to help your discs as well as your breathing. It is wonderful you have a great hubby and daughter for support. Best wishes to you Woofly. ⚘⚘💟💟
Bless You, It is a Devastating Feeling, I Broke Down in front of my Consultant, she gave me a Big Cuddle and said its not the end of the World. That was last Year. I put my Positive Head on and Strived to keep going. With Good Palliative Care, a Great Hubby, I live each Day as it comes to it's Best. I am not as mobile any More, But I still ride my Exercise Bike 10 mins, 3 times a Day in front of the TV , have little weights either side of my Chair to lift and count, I wear a "Step" Watch to keep myself active in the Home, Not Cleaning as Hubby does that, I do some cooking once a week nowadays, that is Theraputic for me. My main Problem is Never being able to Touch my Children, Grandchildren, Great Grandchildren, I see them Virtually,( In Spain) the last time I held my baby girl was on her Belly trying to Crawl, she is going to be Two on the 2nd Feb. She thinks I live in her Mama's Phone. Take Each Day Hun, Make the Best of a Situation That you have some control over. Always have "Hope" Lots of Love. Carolina XXX
I’m so sorry to hear your news Woofly and I know how your mind is spinning.Try to be positive and take the best from your life. I have two lovely children who care for me. I sadly lost my hubby to cancer ten years ago, but I also have my four legged friend, my dog Bertie, he’s the baby of the family lol.
It’s hard for you at the moment but try to think of all the little things that are good in your life.
I go from bed to settee each day, but find so much pleasure watching the birds in the garden, and Bertie playing with his toys or getting excited for a treat.
Try to smile and laugh every day 😄
Thinking of you. Jax 🐶x
It is Great that you have Bertie my Love, I too have a little Dog who is my Heart, I do have my Hubby also my Heart, he is only 52(I'm 69) and my Carer. I asked him to buy me Binoculars so I can see the Birds more Clearly ( eye sight not so good), Like you we have to make the Best of each Day and always have "Hope". Stay safe, stay happy with your loving Bertie. Much Love. Carolina. XXX
Thanks Carolina, just watching him sleep makes me smile 😊 x
Take heart from the wonderful comments above x
Hi Woofly
it might be worth trying Guys and St Thomas i have heard where people have been refused at the Brompton, Guys & St Thomas have taken them on. apparently they are more pro active and have several options to try.
worth investigating but have to be forceful with your constant and insist he/she write to the hospital. best of luck
Hi Woofly,
If you are, like me, you are a patient at the Royal BROMPTON Hospital in Chelsea and feel that you are not getting all the help that you can reasonably expect, I strongly recommend that you contact Nishanie in the PALS office.
She and her colleagues have been amazingly helpful to me and it will, hopefully, prove to be something which can readily be resolved.
Her contact details are as follows:
(e) N.Ramsaroop@rbht.nhs.uk
(t) 0330 128 7715
Wishing you as well as possible
Thank you Parliament for your post, I was referred to the R. Brompton by my consultant where I live, I just had the one video link appointment. The thing is do I have the right to keep on insisting "there MUST be something they can do!" I will hopefully get a call from my local Consultant (she is very approachable) and mention what you have said. I will let you know the outcome Thank you once again for your kindness, this site is SO helpful when one is feeling down.. I would like to thank everyone for their wonderful messages of encouragement it means so much to me xx
In my view, you have every right to expect medical advice appropriate to your condition and you, or someone on your behalf, should pursue every possible way in order to achieve this.Given the complimentary way in which you refer to your local consultant, I strongly recommend that you contact her to enlist whatever support she can bring to your needs.
I have encountered past resistance to what has been proven necessary and my advice is that you do everything possible to get the treatment you feel is necessary.
Given the pressure under which our healthcare advisors are obliged to operate, particularly in these continued unprecedented times, a respectful reminder of your plight should, hopefully, remind them of your needs.
Please don't hesitate to contact me if you need ANY further assistance.
Best wishes
I'm sorry to hear your news. It has no doubt come as a shock to you so give yourself a bit of time to think about it and then, as others have said, there may be other avenues to explore. If you then have to live with the decision, you will know you have done as much as you can do yourself to change it.
xx Moy
So sorry to read what you've been told. Praying that you will find some sort of way to improve your physical situation.
So sorry to hear that.
I hope the wise and kind people on this site have helped you by their positive attitudes to life xxx
oh sorry to hear this
x
Well that's that done.
The New Employee Handbook 😅 that's the way they like it to be....
LIFE IS SHORT, SO MAKE IT COUNT!
Day 2 and so it begins......
So so tired...
