Removed from Transplant: Sadly I have... - Lung Conditions C...

Lung Conditions Community Forum

51,626 members62,246 posts

Removed from Transplant

mary1956 profile image

Sadly I have been removed from the lung transplant list . Harefield say the pulmonary hypertension I have has worsened so much that I wouldn’t survive surgery.

I have no idea what will happen next. I’m on 24/7 oxygen, my lungs have approximately 10% capacity and I have no idea what to expect.

My respiratory consultant said once I went on transplant list he no longer needed to see me. I guess this might change?

93 Replies

That’s so disappointing and worrying for you.have you got an appointments scheduled ? Please let us know how you go on xxxx

mary1956 profile image
mary1956 in reply to Oshgosh

No appointments with anybody. I will make some calls on Monday

Oshgosh profile image
Oshgosh in reply to mary1956

Have you managed to get anyone to speak to you ?

mary1956 profile image
mary1956 in reply to Oshgosh

I spoke to GP yesterday and he is seeing me on Thursday. Palliative care nurse on Friday. I’ve left a message for respiratory consultant.

So sorry to hear that Mary. I do think your respiratory consultant will need to see you now. Thinking of you. Xxxx

So, you’ve been left in limbo over the weekend, with no idea of what happens next? How upsetting. I’m sorry about your news, to have a flicker of hope dashed like that must be unimaginably hard, tho you said it was on the cards. I think you’d be best to contact your gp, I feel sure in these circumstances they’d want to come and see you x

mary1956 profile image
mary1956 in reply to Hanne62

I will call my GP on Monday. I tried to on Friday but they were too busy. I haven’t seen any GP since before Covid despite being on transplant list for 20 months with 2 dry runs.

I'm so sorry Mary. Perhaps a consult with your GP is the best next step.

mary1956 profile image
mary1956 in reply to CDPO16

Will ring on Monday

Damon1864 profile image
Damon1864Volunteer

So sorry to hear that Mary, I. sure you're Respritory Consultant will certainly need to see you, thinking of you please let us know how you are doing. Take care and please have a good night 😊 Bernadette and Jack 🐕 xxxxxx 🌹

mary1956 profile image
mary1956 in reply to Damon1864

Thanks, ironically knowing I wasn’t getting a call for transplant resulted in a good nights sleep

I’m so sorry you’ve been left with all this worry and unanswered questions over the weekend. Take good care and perhaps follow up on Monday after you’ve had some time to process this over the weekend. I hope you have people in ‘real life’ to support you but, of course, you have us too! 💐

mary1956 profile image
mary1956 in reply to crashdoll

Love all your support. Friends and family have been great.

It seems that when it comes to transplants or any other procedure regarding the lungs we haven't come very far with regard to compensating for patients other comorbidities in order to undergo surgery,even if it will be life saving.i feel for you Mary it must be so frustrating but do please insist that your original consultant deals with your immediate needs with some urgency,it is the least they can do for you.Best wishes Ski's and Scruffy cat.

😊😻 x

What a disappointment for you Mary hope you get. Seen to again with your consultant I do hope so my thoughts are with you big hugs xxx

mary1956 profile image
mary1956 in reply to primrose71

Thank you

So sorry to hear this. What a bitter disappointment. I am sure your consultant will take over your care. Thank you for posting. Love and hugs

Kxxx

mary1956 profile image
mary1956 in reply to Katinka46

Thanks for your reply.

So sorry to hear this. I hope you are able to get help back with your original consultant. Best wishes to you.

mary1956 profile image
mary1956 in reply to Lemon7

His PA is great so I will call her on Monday

Lemon7 profile image
Lemon7 in reply to mary1956

I send every good wish for your further help/treatment. Good luck.

Very sorry Mary. You must be devastated. I know their reasoning but I think they shouldn't leave you like that. They need to be more proactive in helping you with ongoing care. It's like well we can't help you so off you go, but to where ? I think all you can do now is go back to your GP and ask him to sort out palliative care and inform your respiratory consultant of the decision that's been made. Lots of love and hugs. 😘

mary1956 profile image
mary1956 in reply to Biofreak

Luckily the transplant hospital had put palliative care in place and I have a visit arranged for Friday.

Hi Mary 1956

So sorry to hear this , I know what you are going through .

Once you are off the transplant list , they hand you back to the care of your original consultant and they come up with a plan and send it to your GP to implement and manage until your next appointment.

It wouldn’t hurt to drop the consultant an email or text Charlotte at the Brompton for her advice, to get this moving. When I got taken off the list the professor from Harefield came up with the plan , he also prescribed opiates , which I refused at the time , but he did the prescription and left it on file.

Hope this helps ? Chin up were in this together!!!🙏🌷xx

mary1956 profile image
mary1956 in reply to Beachballs

Thank you. I have been given Lorazepam which has helped my night panics of blocked nose etc, so I’m hoping for more of the same so I’m not so frightened of what’s to come. This is the info I’m hoping the medics can give me.

Beachballs profile image
Beachballs in reply to mary1956

Ahhh thank you for the tip will write this down and ask for it , I know what you mean about what’s ahead , I just take one day at a time ! I have accepted Palliative care under the local hospice to make my life easier and to get information when I need it it’s a big step ,let’s see how it goes .my very best wishes to you. x🙏🌷

hypercat54 profile image
hypercat54 in reply to mary1956

I am so sorry to hear this Mary and you must be devastated. I know it's very hard but try and concentrate on today and not worry about the future. I have heard that once you are close to the end they put you on a syringe driver so it's all very peaceful. Hopefully you are a long time away from that and have years yet. While there is life there is always hope.

Thinking of you my lovely. xx

That’s 2 of us within a couple of weeks.😡I am having a second opinion by the Papworth and would suggest you do the same.

Good luck with whatever you decide and my thoughts are with you…

Xx

Good luck to you Mr B , know how you feel. 🙏🍀

mary1956 profile image
mary1956 in reply to Mrbojangles

Yes I read your post last week, and thought how awful it was for you. I’m going to find out all I can but the pulmonary hypertension does sound extremely dangerous considering the high pressure

So sorry you will battle on good luck xx

mary1956 profile image
mary1956 in reply to Burghy

Thanks

Hi Mary, I wonder why it is that medics habitually drop disappointing news onto vulnerable patients just before a weekend when there's a two-day wait to mull over the situation without anyone medical available for advice. Their timing could not be worse.I do not know where you are based but I hope I can share something positive, based on the experience of a very dear friend of mine.

Diagnosed with mesothelioma, her prognosis was not good; it never is with that particular illness. However, when things became increasingly difficult to manage, she was referred (after a really robust discussion with her GP) to a local hospice who were absolutely fantastic.

When it seems there's nowhere else to go, the hospital specialist is busy and not always available and a GP is either not terribly supportive and/or out of their depth, a hospice can fill the gap and work wonders.

You might already be aware/enlisted but, if not, hospices have specialist doctors, work closely with hospital consultants and can offer out-of-hours and incredibly fast support as and when needed.

They tend to have a wonderfully positive outlook on what can seem to be a hopeless situation.

And to quell a common myth, a patient does not have to be in the throes of the dying process before they can get a referral to a hospice or be accepted onto their lists as a patient. Hospices manage longer-term issues as well. My friend and I discovered that some GPs are appallingly ignorant of this fact and can need pushing hard to write the referral sooner rather than later, but in my friend's experience it was well worth the shove.

Support is out there; it's just sad that it's sometimes hard to find and funded largely by charitable donations.

I hope this info is helpful rather than depressing and that you can find someone who'll help you with supportive next steps.

Beachballs profile image
Beachballs in reply to bridgeit

Found your post very helpful as I have just been referred to our local hospice for Palliative care. I am at the point of needing help, as everyday life and accessing information is very challenging, as for weekends, it fills me with dread as no/ one is available apart from 111. So looking forward to getting the help, I have IPF the advanced stages and I have a lot of questions, a lot of my questions get answered on here, wanted to access a charity as well for further help. Thanks again🌷

bridgeit profile image
bridgeit in reply to Beachballs

You are very, welcome. It's good to hear that you've been referred. Bear in mind also that you can give the hospice a call to say you've been referred and explain your situation, which might help speed things along if you're getting worried about waiting time. That call should help with detailing your case to the hospice staff, who can then more appropriately prioritize.

It is surprising how, once the necessary and appropriate support is in place, fears and worries can begin to melt away. I think it's the thought of coping alone without on-call medical expertise that's scary and this is where hospices really provide a grand service. I do hope this proves to be the case for anyone in such a position.

Wishing both you and Mary speedy peace of mind.

Beachballs profile image
Beachballs in reply to bridgeit

Thank you so much , very helpful, will do this . Thanks again , enjoy your day . x🌷

mary1956 profile image
mary1956 in reply to bridgeit

Thank you, that is really useful. I do have a vague knowledge of Hospices, but certainly don’t know how to access them, or when to. Ironically until a few months ago I volunteered with one by being a “befriender”, visiting people at home.

mary1956 profile image
mary1956 in reply to bridgeit

Excellent Advice

So sorry to hear that. I hope you can get back on your consultant's list, so that he/ she can offer you the best possible care. Look after yourself in the meantime. xxx

mary1956 profile image
mary1956 in reply to Alberta56

Will do. I just feel in a real weird place. Focussing on transplant for 20 months and then suddenly having it whipped away with nothing to replace it.

So sorry to hear this bad news. I do hope you can get the help you need soon xx

mary1956 profile image
mary1956 in reply to Jane2005

Thank you

So very sorry to hear that Mary.Am keeping you in my heart ,thoughts and prayers x

mary1956 profile image
mary1956 in reply to Cloudancer

Thanks

Thinking of you Mary, I'm so very sorry to hear this news. It seems so unfair for you and Mrbojangles. I hope you'll look into a 2nd opinion too if at all possible ❤

mary1956 profile image
mary1956 in reply to peege

Will certainly give it some thought

I’m really sorry to hear this news Mary and I’m sure your respiratory consultant would see you again. Like the others say, it’s awful over the weekend when you can’t contact anyone. I hope on Monday something gets sorted, somehow! A hug 🤗 for you x

mary1956 profile image
mary1956 in reply to madonbrew

Thanks

How hard is it for patients to receive this news and be left alone to wonder what happens next. I really feel for you Mary and would contact your gp or even the consultant that was dealing with you on Monday morning. In the meantime you have the support of this group and there are a few on here who have been through the same thing so will know how you are feeling. Thinking of you x

mary1956 profile image
mary1956 in reply to Izb1

Over the months this group has Ben fabulous. Never more so than now

Izb1 profile image
Izb1 in reply to mary1956

Aaaw thats so good to hear, the support on here is wonderful and we have good hearted people that really care x

I'm soo sorry to hear about your transplant must be very hard can't even imagine that I'm 42 and my consultant said my capacity is about 20% and I'm 24/7 on oxygen don't know how long I have. I hope things get better for you and good news comes your way take care

mary1956 profile image
mary1956 in reply to Foxy79

Gosh that sounds dreadful. I hope you are getting all the help you need. X

Foxy79 profile image
Foxy79 in reply to mary1956

Thank you for asking and yes I'm getting more than half cause my broncechtisis consultant is great everytime I get ill or chest infection I mail her and she takes me in for IV my doctor is great always gives my medication on time and my NIV register is OK as well only issues is with oxygen nurse doesn't want me to have cylinders! And I was meant to go for voulme reduction surgery last year still haven't heard anything that will help me breath normal again it's very good I don't know if you can take a look on internet and ask your consultant cause this surgery isn't life threatening or blood involved and susses rate is 90% there's soo much out there we just need to know what is best for us cause no one will say it only we will doctors aren't same like before no one cares about patients I feel sometimes.

hypercat54 profile image
hypercat54 in reply to Foxy79

We had a lovely member on here several years ago who wasn't diagnosed until she had only 22% of her lung function left. She lived another 11 years and quite a few relatively active ones too.

Never give up and just keep plugging away. Concentrate on what you can do rather than what you can't. We are always here for you, Mary and any others in times of need. x

Awful news for you to receive Mary especially when it’s the weekend. I sincerely hope your consultant will see you again and will provide support for you. Good luck with the Monday phone call. 🤗🤗🤗

mary1956 profile image
mary1956 in reply to watergazer

Thank you

Oh I am sorry that you have been disappointed with being able to have a transplant. This is a difficult stage of this illness and I hope that you and your GP can agree on a forward plan. My very best wishes for Monday.

Grace

Thank you. I really need to have knowledge of what will happen next. I did ask months ago what would happen if I didn’t get a transplant but was told we don’t know.

Very disappointing4 u x

Mary, when my mother was told she would have palliative care she went into a tailspin, but the reality is palliative care is just a multidisciplinary team approach to maximising on life for those with complex conditions. It seems such a shame it isn't talked about in a more positive light.

My mother also had wonderful support from a local hospice. She could go there once a week for company, various activities and access to care and someone to talk to about her condition. We all need just that sometimes.

She also had a few individual weeks as a resident during her journey. She would have her meds balanced or re-balanced and whilst there she would be totally pampered - hair done, nails done and so on. She used to hate to have to go, but always felt so much better when she had been.

I'm so sorry to hear of your outcome. I don't know how you must be feeling, but safe to say you have friends here who will play their part in looking after you when needs be.

??? I am confused as i never said anything like this? Did you mean to answer someone else?

skischool profile image
skischool in reply to hypercat54

I think mary was answering to Foxy bev.

mary1956 profile image
mary1956 in reply to hypercat54

I’m so sorry. I was answering Foxy 79 who asked me to google her case and then discuss it with my Consultant. I said I couldn’t do that. No idea how I put it on the wrong place.

hypercat54 profile image
hypercat54 in reply to mary1956

lol x

Foxy79 profile image
Foxy79 in reply to mary1956

Hi Mary you got me wrong I said to goggle about a voulme reduction surgery that might be helpful to you as I said it's better than transplant and less effective and costly. I said to discuss it with your consultant about the surgery nothing else I know it's confidential about patients privacy and morale y.

skischool profile image
skischool in reply to Foxy79

Foxy you need to be aware that LVRS requires the same amount of reserve capacity in our lungs to undergo surgery as does the lung transplant procedure and sadly Mary like many other of us do not have the capacity to undergo such a procedure.

Foxy79 profile image
Foxy79 in reply to skischool

That's why consultant are there to advise you I just said what sounded good to me cause I was told about it my lungs have 20% capacity I'm on 24/7 oxygen I weight 106 kg I'm 42 I was told about it voulme reduction surgery but Still waiting don't know weather will I go through. I don't know if Mary is suitable or not I just gave an idea rest is up to her take care 🙏

mary1956 profile image
mary1956 in reply to Foxy79

Hi Foxy, I completely misunderstood your reply. Sorry. I will be looking into all options and appreciate your thoughts.

Foxy79 profile image
Foxy79 in reply to mary1956

Hi Mary No problem I'm happy for you as long as you understood me all I wanted is everyone and people like myself yourself to check out all the options there is for help anything will help people like us to breath. Take care

My dear Mary,

I was taken aback to read your post. Within the last few days three people I know have been removed from the list. After all this waiting and anticipation and I am truly sorry to every single one. I wish they had alternatives to using human organs so that everyone could have a chance. Our organ pool in both Japan and the U.K. are too small. So they have to make these decisions based on who they think will be able to survive the massive operation And the aftermath. And even then some who seemed to be fit enough candidates don't unfortunately.

To my mind, your next step would be to see your regular lung consultant. I am surprised your transplant hospital did not refer you back. Or maybe they have. I hope you have palliative care in place and the hospital social worker ( In Japan that is the first port of call) should be able to help with other care if you are in need of it. I don't know what the care system is like but I think you must be entitled to carers if you don't have them already. It is important now to prioritise quality of life and to get as much support as you are able.

Having said all of this, we have no idea how long we have left. There are many who continue to live with serious conditions and have a zest for life. You have come so far and done so well considering all the difficulties. I truly believe you will find your way as you have always done. As always, you know you have our love and support Mary. Sending you a warm hug and much love.

Cas xx 🙋🐕

mary1956 profile image
mary1956 in reply to Caspiana

Thank you. They said they would refer me back to my respiratory consultant. My husband is caring for me and is amazing. It was a shock when I was apparently an ideal transplant candidate 3 months ago. I am determined to find out what help etc I can get to make life easier.

Thank you for your message. X

Caspiana profile image
Caspiana in reply to mary1956

Yes, it must be a huge shock. Things can change so rapidly even for us who are post transplant. I'm very relieved to hear you have great support. Please let us know how you get on. xx 😊

I think Foxy was suggesting you ask your consultant about the volume reduction surgery for yourself, Mary. That’s how I read it. I hope Foxy won’t mind my saying he’s a bit hard to follow at times… but very kind and caring x

mary1956 profile image
mary1956 in reply to Hanne62

I will re reread the post, trust me to get that wrong!

I’m really sorry to hear this. Thinking of you 🤗

So sorry to hear your news take care

What a huge disappointment for you. I hope you soon get the advice, help and support you need. I think it’ll take time to come to terms with this and your thoughts will be all over the place. Be good to yourself and have some treats.

This must be very disappointing for you Mary. I hope your GP will refer you back to lung consultant. May I ask how long you have had the Pulmonary hypertension, and were you told it was as a result of your COPD?

mary1956 profile image
mary1956 in reply to Dedalus

Hi I had a cardiac catheterisation in July 2020 which was normal. ( one of the tests needed to get on transplant list.I noticed palpitations about 6 months ago. They were not too concerned. Normal pressure is 20 and mine was 28, so ok. In November it was 40 and on Wednesday it was 80. Definitely caused by lung disease. I have hypersensitive Pneumonitis with Fibrosis. Lungs now so scarred that blood can’t get to heart easily causing damage to my pulmonary arteries.

Dedalus profile image
Dedalus in reply to mary1956

So sorry to hear this Mary. I have recently developed pulmonary hypertension and the breathlessness is really bad now, even on oxygen. All best wishes and good luck going forward Mary x

I just wanted to say how sorry I was to hear this news, Mary. I trust you will be referred back to your respiratory consultant who will make sure you get the right help and support you need. It is good to know you have a loving and caring husband. Thinking of you both and sending love and best wishes xxx❤️❤️❤️

mary1956 profile image
mary1956 in reply to HollyBoyd

Thank you

I am sorry to hear your sad news Mary, I am also in the same boat as you as I was removed from the transplant list last April due to them finding a fractured bone in my spine. Yes it's brutal news and you are left in Limbo. I contacted the transplant team at Manchester several times for an alternative plan and got know where, I never gave up badgered my GP and Chest Specialist until I was seen and got a total update on medicine available that for now would give me a sustained better quality of life. Please don't give up my friend. x

Thank you. I intend badgering GP and respiratory consultant tomorrow who I’ve had no input with for 2 years.

Hi mary1956 I am sorry to hear what has happened I just wish I could give you a big HUG Yes for sure your respiratory consultant will want to see you as soon as possible please get on the phone to him first thing tomorrow morning get holt of his secretary and explain what has happened and keep on phoning until you get her don’t give up there’s a lot more they can do please will you let me know how you get on remember do it Tom and don’t take no for an answer lots of love Sue SUESAL 💜💜💜💜

I am so very sorry to hear what’s happening to you and everyone in the same position 😢 You must be so disappointed, worried and afraid but as someone said where there is life there is hope . Tomorrow may bring you some peace of mind , I sincerely hope so 🙏🥰 xxx

Oh my, Mary. That is disheartening to say the least. At 10% lung capacity, can you ambulate around the house ok with oxygen, or is it all “baby steps” like I experienced with the flu in2019?

A few steps only to the bathroom. On 10 litres O2, 24/7, so I’m very limited.

10 L/min. ??? OMG! I wish I knew more regarding lung transplant. Needing reserve capacity…as skischool said. They took me off the transplant list when superficial urinary bladder cancer was diagnosed and resected. They said go three years cancer free to get back on.

I’m really sorry to hear this . I hope you’ve got support from your loved ones and your consultant finds the best plan possible for you going forwards x

So sorry to your bad news, I will keep you in my thoughts and prayers

Dear Mary,

I'm very sorry to hear that things are not going well for you. Your disappointment will be overwhelming. Thinking of you, sadly there's nothing I can do to help you.

All the best to you

Joan. xxx

You may also like...