ESLD Failing vocal chords

[Peeps7]

I have posted about this before and at this late stage we both appreciate there is very little to be done but would appreciate any further thoughts and suggestions for remedies to salvage Peeps’ vocal chords. Bile and reflux have done so much damage that he can barely make himself audible, his voice is more like a hoarse whisper so we have the added problem of communication! Thank you in anticipation, Anne 😳

[Hidden]

Hi Anne,

Has peeps been referred to an ENT ( ear nose and throat) specialist? Maybe his hepatologist could organise for him to be seen by an ENT consultant and they can discuss options?

Sending you both warm wishes

Trust1

[Hidden in reply to Hidden]

Thats definately a great idea.

[Peeps7 in reply to Hidden]

Thank you, I have been in touch with his hepatologist so we are now waiting for a referral.

[Hidden in reply to Peeps7]

I hope it goes well. Pamela below also made a very useful suggestion of the SALT ( Speech and language therapy ) team also helpling. The ENT should be able to oragnise an internal refarral to them if needed.

Trust1

[Hidden]

Oh Anne that is sad to hear! As trust mentioned maybe a ENT can help out with this? Best of thoughts wishes and love to you and Peeps. ❤

[Peeps7 in reply to Hidden]

Thanks as ever Phoenix x

[Yuiop]

Hi Peeps, my hubby was the same before his transplant, but is fine now. Nobody could understand what he was saying, and his voice was quiet. All his words were broken.

[Peeps7 in reply to Yuiop]

Sadly Peeps has not been fit enough for transplant ☹️

[Yuiop in reply to Peeps7]

What can I say! Work as hard as you can to get peeps well enough. My hubby was really poorly and severely malnutrition’s, was only when he got his assessment that he was put on feeds. Hope it all comes together xx

[Peeps7 in reply to Yuiop]

So pleased for you, sadly Peeps is 81, five and a half years post diagnosis was rejected for a transplant and deemed not fit enough to recover. His hepatologist has very recently said that there is nothing further medically that can be done. I am lucky to have had him this long.

[Yuiop in reply to Peeps7]

How sad, when it’s someone you love dearly, age just doesn’t come into it, it’s all from the heart xx

[Porphyriamaniac]

Hi Anne, I've just done a quick search on this loss of voice and cirhossis, it seems to come up often on forums, even if theres no medical evidence for it, very puzzling!? Some of those online have suggested severe fatigue and lack of energy as the cause? Anyway, when I'm hoarse I drink lemon and ginger tea with a spoon of honey in, it may help until you see someone, and it's nice and soothing. Love and best wishes to you and peeps, Stacie xxx

[Peeps7 in reply to Porphyriamaniac]

Thank you Stacie for your research, very much appreciated! Peeps already has a spoonful of Mannuka honey with breakfast and I will get some lemon and ginger tea. Love to you, Anne x

[Lilyrosemarie]

My late fiance's voice went like this too, it was so heartbreaking to see and so frustrating for him when people couldn't understand him and he'd have to pass the phone to me.

[Peeps7 in reply to Lilyrosemarie]

Just helps to know it’s not uncommon, so sad to hear that you have lost your fiancee, it is such a cruel, elongated, debilitating disease, with love and thanks, Anne x

[Beture47]

Hi Peeps my voice went to a whisper before my transplant I sounded like a little mouse

It returned after a couple of weeks post transplant

Elizabeth

[Peeps7 in reply to Beture47]

So very pleased you were able to get T/P.

[Peeps7 in reply to Peeps7]

And very good luck for a healthy future! Anne x

[chell1704]

As above my hubbie was a loud whisper at most. Now all returned to normal post transplant. Our consultant suggested fatigue and muscle wastage as a likely cause. Ie a lack of energy to raise above a whisper.

[Peeps7 in reply to chell1704]

Thank you for your reply, as I said above, T/P not going to happen but both fatigue and muscle wastage are grim and probably a contributing factor in all this. Thanks for your post, Anne x

[chell1704 in reply to Peeps7]

Sorry about that Anne. It's a hard thing to watch our loved ones suffer. Hold strong x

[RedLottie]

Hi Peeps. I too had this although it wasn’t related to my liver/acid reflux I had a nodule on my vocal chord but they did think it was reflux at first before my endoscopy.

What the Speech and Language Therapist and consultant recommended was for me to drink lots of fluids (water or fruit juices) as these lubricate the vocal cords, to try not to cough as this can make it worse (which is easier said than done), to use steam to lubricate my vocal chords, to not eat cough sweets as these have a drying effect, to stop smoking (which I did) and to rest the voice as much as possible. I was actually placed on total voice rest for 2 weeks so had to go sick from work as I talk a lot in my working role and I was told not to shout or strain my voice, so for example if I found myself a little out of breath when speaking I had to stop and measure my words and take my time when speaking.

I’d push for a SALT referral from your GP as they can give you exercises to support the vocal chords.

Hope this helps

Pamela x

[Peeps7 in reply to RedLottie]

Hi Pamela, thanks for your post and very constructive thoughts. We are awaiting a referral from Peeps' hepatologist to an ENT specialist and I shall certainly have a chat about SALT, Anne x

[RedLottie in reply to Peeps7]

Hi Anne,

You are more than welcome. Let us know how Peeps gets on please. It’s a horrible thing in itself to go through without everything else that you are both going through. I had it for over a year before being referred and I went private in the end for tests as I was being fobbed off by my GP, but once my results showed the nodule I was referred quite quickly and she was a God send to me.

Take care

Pamela x

[MsTrixi7]

Would he be able to write on a chalkboard or use an iPAD to communicate? I know it is not ideal. I have a non-verbal autistic son that uses an iPAD with symbols to communicate. Stroke victims sometimes use white or chalk boards. Just until he could get his voice back. My son also uses PECS, which are picture cards to communicate his basic needs! I hope that he gets his voice back soon, but maybe you could use an alternative means for him to communicate until then. Best of luck to the both of you!