Losing a loved one to Achalasia

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My grandfather found out about 3-4 years ago that he had Achalasia. He had the balloon procedure done twice and had Botox done probably 15 times. The Botox worked wonders, until it wasn't helpful. It would make everything normal for him for a year, then only 6 months, then it came to where he was still having issues two weeks after his operation. He lost around 50 pounds easily. He became so fragile. He shuffled his feet when he walked. He developed an aneurysm in his stomach, and it couldn't be removed due to his fragility. He would go three to four days without eating sometimes because he couldn't keep anything down. He couldn't sleep. He said water was the worst thing for him. It would always come back up. We began having problems with food becoming lodged in his throat. He couldn't chew well and was too weak to cut his food up, so his wife did. However, not always as small as it should've been. We would have to go to the emergency room to have the food removed. Three weeks ago my grandfather ate a piece of chicken, which wasn't cut up good, and it became lodged in his throat. He was constantly throwing up, spitting up, until he had nothing to come up any longer. We had to have fluids run through him so he wouldn't be dehydrated. After a week, the food had come out. But it was too late. He was now 90-100 lbs at 5'8. Bless his soul. He became too weak to stand, to use the bathroom, anything. During his final days we gave him water, at his request, through a straw. It went down fine. He drank probably 2 gallons of water in 5 days. He also drank a lot of his favorite soda, it also went down without trouble. We have him milkshakes & chicken broth. It went down fine. It broke my heart to see all of this happen when he could no longer enjoy it. My grandfather was put on hospice & passed after a few more days. I hope no one has to go through this with their loved ones. Please, cut up their foods as small as possible. Watching my sweet grandfather starve to death broke my heart and I feel awful for him every single day. His brother now has Achalasia. We have done everything precautionary possible and he has done great. I just needed to share this somewhere where people understood what he was experiencing. I hope there is a perfect cure found for this and I pray for everyone experiencing this.

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  • Posted

    I would like to add that we did try a feeding tube inserted through his stomach. It worked wonders. I wish we would've done it as soon as we found out about it. However, his body pushed the tube out after 3 months.
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  • Posted

    Really really sorry to hear this awful story...... Very sad for you! 

    I am an Achalasia sufferer and it is dreadful sometimes.  I have had one balloon dilatation and thank god it has helped for many years now.  I guess I live with it and adapt accordingly but it is always there! 

    Sorry for your loss, may they find a cure/solution in the not too distant future. 

     

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    • Posted

      So happy to hear the balloon diliation worked for you! That's awesome! Best wishes to you!
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  • Posted

    HI allideanne. 

    Firstly I am so so sorry for your loss. It is of little comfort I know, but all that was possible to try and support your Grandad clearly was done, especially by you. Know that he was grateful you were there for him and loved him dearly.

    My Father-in-law sadly passed away from this awful condition although at the time we were unaware of what it actually was that was wrong. It was only when my husband also developed it and the medical profession finally diagnosed achlasia after two years, that we eventually realised it was one and the same condition and both had had/have it. My F.I.L. refused point blank all tests and procedures and instead opted to slowly starve to death. His option and whilst we didn't understand at the time eventually realised it was his choice.

    My husband, still stinging from the passing of his father decided to find out what on earth they both had so that at least we had answers. He was diagnosed some sixteen months ago and had surgery (Myotomy and Fundaplication) twelve months ago. The last twelve months have been slightly hit and miss with him having great weeks at a time and then problems for a day or so. Gradually the days get further apart that he can eat the the problem days have become far more frequent again and tomorrow we start all over. Tomorrow he has botox again, something that prior to his surgery never touched him, but we hope now will

    Thank you for sharing you story with us and bless you xxxx        

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    • Posted

      We also had those roller coaster days with pawpaw. Botox worked best out of the surgical operations for him. We always suggest the feeding tube inserted into the stomach if Botox fails when we talk to others with this problem because had we done that at the beginning, we would've never struggled with him being hungry, weak, etc. praying for your husbands recovery!
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  • Posted

    I'm so sorry to hear about the loss of your grandfather but even more so his suffering the last year of his life.

    Coupled with the fact that now his brother had been diagnosed with it... you have learned a lot about things no one ever wants to learn about.

    My best suggestion about the food issue is that at some point when food is getting stuck and you can't seem to cut it small enough, might you consider buying a blender (or bullet) to pureé those foods that would be prone to being a problem?

    I'm surprised that they didn't start a feeding tube with your grandpa at some point... again so sorry for your loss. Keep the faith. ♡

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    • Posted

      We actually did do a feeding tube! It was inserted in his stomach. It worked WONDERS. Unfortunately, his body rejected it after a few months and eventually pushed the tube out and closed. That's when we ran out of options.
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  • Posted

    I think it is ture to say that the doctors would not noramlly advise on too many repeat dilatations or botox procedures, but that this might occur of the the patient is not physically strong enough to cope with surgery.   There is also an age factor that comes into play;  sometimes the oesophagus does get 'baggy' and that makes it more difficult to perform surgery.

    I offer condolences and symptahy, as this does seem a dreadful way to end your days.   For thers with the condition, I suppose that it does reinforce the argument that one should try and get a diagnosis and best treatment for the long term as soon as you can, from an experienced specialist in this condition.  

    With very best wishes

    Alan

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  • Posted

    Hi allideanne,  My husband was diagnosed with very severe achlasia, and after trying to stretch his esophegus, the Cleveland Clinic did a new procedure called a "POEM".   That surgery did not work, so the next step was to put a stent into his esophegus, which caused him to do nothing but throw up blood.  The Cleveland Clinic then took him back to surgery to remove the stent, which was supposed to be a simple procedure, but his lung collapsed and he ended up in ICU for two months, intibated and with a feeding tube.  He then spent two more months in a specialty hospital, and then two months in a rehab facility because he could not walk.  Since then, we have found another surgeon at Cleveland University Hospital who has done at least four other procedures.  This surgeon put a different type of stent in his esophegus, and after about three months, it was removed.  It was like a miracle because now he could eat.   Two weeks ago he finally had the peg tube removed.  He has to really be careful that he chews his food many times.  Sometimes, unexpectedly, he will have problems eating, but the next day he will be good again.  He is on ativan daily.  We see a gastroenterologist and my husband is on 300 ml of Zantac a day.  We will see the surgeon again in two months for another scope to be sure there is no scar tissue.  My husband drinks 4 bottles of Boost every day as well as chewable vitamins.  We love our surgeon, and if it were not for him, my husband might not be here today.
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  • Posted

    Hi allideanne,  I wanted to tell you how very sorry I am that you lost your loving grandfather.   I almost lost my husband to this awful condition.

    Bonnie

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