Late effects and problems

Hi Peter,

ports weren’t around when she just began treatment in 2004, and they used central lines when she had auto and allo. I hope this is temporary to be honest.....they want her to go in tomorrow morning, as the immunology department at Oxford seem to only be mornings.

hugs xxx

Hello Moomy,

Guessing by central lines you mean the equivalent of PICC lines, which I've had in the past. Seems a bit strange to me only having a department open in the morning, what would they do if something happened?

I am off today for my 1st round of 2nd fight chemo this morning, I expect to be home tomorrow lunchtime, Good luck to you and your daughter, its been a long journey.

Best Wishes.

Best wishes for today, Peter! Hope all goes well.

yes, her local day hospital is not really classed as a full hospital, and if anything happened it would be blue lights to Oxford. But within the immunology department in Oxford, that is in the John Radcliffe hospital which is a large general hospital with many specialist units too, so if anything happened there it would simply be a transfer to a different department, most likely via A&E. 

Today she’s had I/V antibiotics again, and will have the same tomorrow. So yes, they’ve bandaged up the cannula again. We hope this is just short term so a central line (PICC or Hickman, which she’s had in the past) won’t be needed or appropriate. She also had a nebuliser today too, and blood was sent for immune levels to Oxford, for them to advise. They’ve been trying to get her levels up all winter, this will enable them to see how she’s reacted after a break. 

Hugs xxx

Your poor daughter, moomy.  I do hope she recovers soon.  having an infection is miserable, xx

Bit of a left field question, but several of you here have mentioned having hearing aids and I am desperate for some signposting to where I could be looking for sensible advice!

My hearing in one ear disappeared suddenly overnight last November.  Despite the fact that it's usually a more-gradual decline (I might not have noticed this, if it happened, though...) it has been diagnosed as otosclerosis.  It's a sort-of bone growth on the stapes bone and most likely caused by an auto-immune response (a bit like gvhd of the ear'ole!)  It's a conductive loss and not a sensory-neural one. 

I've seen an ENT consultant who said the options are surgery, which has a high chance of sorting it completely, or hearing aids.  I thought it was probably an idea to try hearing aids first, rather than volunteer for surgery (at least at the moment), but I have been disappointed with the hearing aid trial I had.   The NHS referral wait is long and I was told the aids from there wouldn't be as good.

Finally I have got round to asking what I should be looking for in a hearing aid!  The trial I had was for a receiver-in-ear hearing aid, which the audiologist advised would be best, because the hearing loss is quite severe.  I got a lot of distortion over the sound, like hearing through a dodgy loudspeaker.   He thought that it was distorting because of the power that needed to go through it.  

These hearing aids are really expensive and I would rather go without than have an aid where the sound is distorted.  It would drive me mad!  

Any pointers you can give me about what you have learned from experience and where I might look for good information would be useful!  

Grateful thanks,

Sheri xx

Hi Sheri,

if it’s of any help whatever, one of the Bombe Team Rebuild engineers has pretty expensive hearing aids, they work well but he goes through batteries like no tomorrow. His real problem is in distinguishing direction of sound, which is awfully common with all hearing aids. However, they are incredibly subtle and you really cannot tell he’s wearing any; in normal use he is to all intents and purposes, normal! 

We notice it as in a big-ish room when there are people chattering around and he’s trying to listen for something subtle he finds it very difficult. 

I once tried the NHS ones and yes, direction discrimination is really hard as all noise is amplified, not just the specific noise you’re listening for. 

Hope you find something that helps at not too huge a price! 

Hugs xxx

Thanks, moomy. 

I understand the brain learns to filter sound for relevance, but appreciate there may be a period of adjustment while everything is amplified.  

The main issue for me was the distortion.  It was better with the volume turned right down, but it just lessened to 'irritating' at that volume, rather than unbearable.  The audiologist started with the volume way down on where he said the target should be, but that was ridiculously loud, to the point of pain and with such distortion that I could not hear. 

My instinct would be to go for the surgery - but my SCT team might have something to say about it!

xxx

I had to get my hearing aids before I started my main treatment as one of the drugs used did the damage. My right is mostly gone with the left at 50% much the same as yourself just sounds like broken loudspeakers.

I got my units through my NHS Audiology Department not having to wait long and they were good. Following my radiotherapy and two SCTs my SCT team arranged for me to have another hearing test and my settings had changed so I was given new units with small in-ear units again on the NHS with all repairs and batteries free.

I should have said that an MRI showed nothing wrong so the drugs had killed the audio signal so no operation can help me....... it did take some time to get the settings correct to enhance the areas that could help me hear ((hugs))

Thanks, Mike. 

I'll try an NHS referral and be patient, I think. At least the NHS audiologist is likely to be objective about the type of aid that is likely to work best and won't be trying to sell me something I may not need.  Did you ever get rid of the distortion, or have you learned to live with it?  

Xx