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Please advise me my godmother is wasting away she has a recent Achalasia diagnosis

Posted , 7 users are following.

claire77920
claire77920

Hello i am new to this group. I am hoping to find a way to help my godmother.She is in her seventies. She was well until about 6 months ago she suddenly developed swallowing problems. Now even liquids are an issue. It takes her hours to manage a cup of tea. She has been to see a consultant and had various diagnostics and I think Achalasia has been definitely diagnosed. She is on muscle relaxants but these are not helping. She is waiting to see a consultant again and I think the gp is just lost. No one is addressing the fact that she has lost 2 stone and was lean to start with. She is depressed and I honestly think she will not last the year. At what point will someone intervene? I need advice on getting some calories in to her, if her condition cannot be treated surely she cannot be just left till we have to call an ambulance cause she is starving to death? Please help! Does anyone know who I can speak to?

1 like, 13 replies

13 Replies

  • AlanJM
    AlanJM claire77920

    Posted

    The diagnosis of achalasia can normally only be done by having tests like a barium swallow, an endocopy (miniature camera down the throat) and manometry (tests pressure at various points.   It is often to do with the way that the muscles work in unison with each other progressively to push food through the system to the stomach.   Sometimes the sphincter muscles between the oesoapahgus and stomach gets clamped tight shut.  

    I suspect that the doctors will deal directly with your godmother in relation to communicating her diagnosis, but she may want somebody to accompany her at appointments, which is often a good idea.   So first of all, there is the issue of discussing this with your godmother, how she feels about it all and whether she knows anything further about he rdiagnsois and treatment.

    It sounds as if she is being seen at a specialist centre.   You will find the clinial nurse specialists very helpful.   There are liquid nutrition drinks that can be prescribed, for instance, with very many flavours.

    I hope your godmother improves soon.   All best wishes

     

    • claire77920
      claire77920 AlanJM

      Posted

      Hello thankyou for replying. I wish she was being seen at a specialist centre. She has paid for a private consultant which got her no further than the nhs. She has had barium swallows but I don't think anything else. They are trying medicine but it's not helping. While she waits to see a consultant again she has had no advice about nutrition. No nurse. I have got her protein shakes but to be honest it's hard enough to keep her hydrated let alone give her enough of the correct calories if any at all. Soon she will collapse. I don't know who to call before it gets to the point where I walk her in to a and e
    • AlanJM
      AlanJM claire77920

      Posted

      I think that an endoscopy would be very important, not least because sudden swallowing difficulties are one of the signals that trigger off a referral to check about possible cancer.   In fact the Upper GI (ie gastro intestinal) centres for the NHS (places like St Thomas's; St Mary's Paddington, University College hospital for London) are where the surgeons work who would also deal with achalasia, notwithstanding that cancer-related cases are a large part of their workload.    So perhaps one approach might be to ask about whether cancer can be ruled out as a short cut for a referral to the specialist unit which would be the best place to deal with your godmother anayway?   The high nutrition drinks are something a GP could prescribe, but you can also ask your local pharmacist for advice.
  • Arif57
    Arif57 claire77920

    Posted

    If the diagnosis is confirmed, the either balooning or surgery are the real options. I had Heller's myotomy in May and have been well since then. If she can take the operation physically (laproscopically done), then it is the recommended option. Why are these options not being considered?
    • claire77920
      claire77920 Arif57

      Posted

      I think they are in consideration. The problem is that in the meantime she is receiving no advice on how to deal with the not being able to swallow. No advice on what to try to swallow. They seem oblivious to her rapid deterioration. I was hoping to get an idea of the severity of symptoms that others suffer. Is it normal to reach an emaciated state? Are people dying from this?
    • claire77920
      claire77920

      Posted

      I think I need to bang on my gp's door on her behalf. She is losing the will.
    • Arif57
      Arif57 claire77920

      Posted

      If she cannot take liquids, then she should be on a drip and in hospital!

      I was down to takeing Ensure, which is a nutritional drink. Swallowing was difficult but never impossible. Good luck. 

      Q: Has she had a manamotery test?

    • claire77920
      claire77920 Arif57

      Posted

      My thoughts exactly. I actually just spoke to a senior dietician on the phone. I have some key lines to say to the consultants secretary on the phone tomorrow. I think she needs to have a PEG tube in.
    • dawn3000
      dawn3000 claire77920

      Posted

      Hi Claire,

      I'm sorry to hear about this!

      As a sufferer I can also confirm that I too have received no advice on how to deal with this. I have also been put in A&E because of it (I couldn't take liquids or anything) and in total, I have lost over 2 stone in weigh (now I'm in the badly underweight section).

      They just don't seem to know how to handle this condition themselves.

      I hope that you're able to get further forward than me.

      If I hear anything at my next appointment I will let you know!

  • saxman
    saxman claire77920

    Posted

    I had same problem ay 68 years . Did a scope , found fungal infection . Treated with diflucan and nystatin . It cleared up in 2-3 days . Get a scope . Bobby -U S A
  • allideanne
    allideanne claire77920

    Posted

    I know exactly how you feel. My grandfather was 80 when he was diagnosed and got down to 100 lbs. liquids were hard on him too. He passed away from Achalasia, but because we didn't find his safe haven soon enough. A feeding tube was put into his stomach and it fixed EVERYTHING. No, he couldn't swallow perfectly. But he no longer became fragile and weak from his disease. We tried every operation possible. That was our saving grace. I highly suggest it.
    • AlanJM
      AlanJM allideanne

      Posted

      Yes, it is really important to maintain nutrition levels with achalasia.
  • tc7
    tc7 claire77920

    Posted

    Was diagnosed 6 years ago and had a balloon op. It worked very well initially but after about 4-6 months went backwards. However, it was still slightly better than before the op and have learned to live with this since. Apart from having to drink 1-2 pints of water with most meals am just grateful to live a pretty much normal life apart from that. Hopefully, this story can give comfort to your godmother as well as perhaps others.  
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