Problems after Intubation and ICU

[DevilDog381]

My wife 2 months ago was intubated in the emergency room and was Life Flight to a bigger Hospital where she was diagnosed and treated for Micro Plasma Bilateral Pneumonia. After being intubated for two weeks she has had nothing but problems since then.. Being healthy as a ox before the illness. Now 2 months after the ICU and intubation, she now struggles with her voice box paralyzed open on the right side. So her voice is very raspy and often aspiration issues that occur with only liquids. Does this happen? As she is a very vocal person and the loss of her voice has left her devastated. Not only has the intubation caused voice issues but also has had rapped hair loss which is also very devastating to her. She also feels so depressed and anxious all the time as this has never happened before as she has always been full of joy and life. Sense the intubation also she has had issues with keeping food down. Every time we go see the Dr or go in the ER we are told that nothing is wrong and her Micro Plasma that she had, plus the intubation has played a toll on her body. How long does this take to heal? She can get up and clean the house or walk around the block and then feel wore out as if she had worked a 40 hour week. Please as I am searching for answers! Is any of this normal after being intubated and a long Hospital stay?

[Teniseelam]

Hi. Has your wife had a swalllowing study done? I too had a completely paralyzed vocal cord. I was gradually allowed to eat puréed food and worked up to soft foods and then regular food over a period of about 6-8 weeks ; the 8 weeks before I had a feeding tube and was only receiving liquids nourishment. I had to drink thickened liquids until I had another swallowed study done and it showed that no liquids were going down my trachea into my lungs. You can develop aspiration pneumonia from that. Your wife needs to rest a lot! She is pushing herself too hard. There is some formula like for everyday you are in the hospital/rehab it will take 5-7 days to recover. So if she was in the hospital 10 days it will take her 50-70 days to get back to her regular self. I developed other problems and don't think I will ever be like I was before. I too lost my hair. It fell out over a period of about 12 weeks. It is just recently looking thicker again. My skin sloughed off and I had/have ridges in my finger and toe nails that are still growing out. I think the high doses of antibiotic cause that. It would have been nice if someone had told me these things would happen. Her illness was a lot for her body and mind to deal with. I am still dealing with it. I am in the USA. If she would want to talk to someone I would be willing to, email or text or whatever. I always have to remind myself how far I have come since last June when I came home!

[DevilDog381 in reply to Teniseelam]

Thank you for your reply and so sorry for your medical circumstances also happy that your recovery is looking up. Yes my wife had a swallow study done. We had just found out that her voice box is paralyzed open and indefinitely. Her ENT said that there is a procedure that can be done to help her. Even now 6 months after discharge, when something is wrong with her I sometimes don't know what ever is wrong could be apart of her healing process, or something different. Thankyou for your time as I hope you continue to heal. Can't believe healing takes so long..

[DevilDog381 in reply to Teniseelam]

My wife wants to know what end up happening with your voice box. As her email contact information.

[e-mail]

[Teniseelam in reply to DevilDog381]

I can't remember exact dates but it was about 3 months after I went into the hospital but was home, the ENT did an injection directly into my vocal cord. Some call it Botox but it wasn't, just something similar. You are awake for it they do it in the office. The numbing process was very unpleasant. And it was a little uncomfortable when the medication wore off. I only have one vocal cord paralyzed. It helped a little bit. Went back 3 months later and they attempted another injection but my vocal cord had scarred and the Doctor stopped. Went back in December for a check up and my vocal cord had regained some movement so it is at about 50%. I go back in June to check again. There is a surgery where they place an implant into the vocal cord. Have not made a decision about that yet. They will not consider surgery until it has been about a year since the damage. My voice is almost normal, I just don't have any volume. People I don't know have trouble hearing me, in a busy crowded room I have trouble being heard. My main concern is calling for help if I am a couple of rooms away.

As far as complete healing goes. Everyone is different. I have multiple other problems brought to the forefront since my illness. Mostly heart issues and damage to my lungs from the pneumonia and ARDS. I too deal with anxiety and depression. Starting to see a therapist to see if that helps. I am also going to train my own service dog to help me with mobility, anxiety and alerting if I need help. I had to stop work and now feel that I don't have a purpose. Hope this helps. It helps me to share my experiences with someone, that gives me a purpose. Have a great day give your wife a big hug and if she wants to message or email me directly I am very willing to do so.

[Rockyhake]

Thanks for your query. My daughter had the exact same experience almost to the tee. Loss of voice and problems with liquids not solids. All doctors tell me there's nothing. She did eventually get function back. But has just had bilateral pneumonia again was luckily not intubated and is having the same problems again. If you've had any updated information would love to hear as my daughter is disabled and cannot speak so I have to work out what's happening to her. Thanks

[Lifesamystery]

I know first hand how difficult this unprecedented journey is.. I had a massive heart attack;(not in hospital) died In ambulance intabated stented in ER then put in medically induced coma for 3 days.

I,too woke up with my left vocal cord paralyzed, couldn’t swallow properly, pneumonia, 3 broken ribs ( from CPR) ..Left side of my heart is totally damaged- cognitive impairment. I was also told they cud do nothing for a year (& nothing cud be done to help me because of the drugs ( blood thinners , heart meds etc. they couldn’t manipulate my body in anyway; I cud bleed out..I was kept in hospital for 2 weeks!!

The swallowing food was hard . The thickening agent they used is disgusting- even milk was thickened- horrible! Easier not to eat .. this too will heal ..

My voice was very raspy ( I told ppl I had laryngitis) It was probably 9 months- I literally was yelling at someone( yes anger, frustration, depression &fear make u want to scream )all of a sudden my vocal cord just popped back& my voice returned ( sum may argue that wasn’t a good thing :)..

My pneumonia cleared with no permanant damage ( took months)

Recovery was slow& scary..

I have no memory of what happened. Nobody told me that there would be side effects from the coma-NO INFORMATION GIVEN!

I, too, started losing my hair, skin dry, nails breaking, sever depression-no energy - I had no idea this was “normal”! Everybody just told me to get over it and move on!! Ppl just don’t understand- It is an incredibly difficult process.. they made me feel bad; like I wasn’t trying to get better ..

I can’t speak to anybody else’s journey ; but if it helps at all... the more ppl u can speak too( Dr won’t tell u anything)..read learn- makes u feel so not alone in this ..

with time some things will start to heal - ( not mentally) .. please tell her to not push herself too hard, accept that there are changes happening in ur body and u will slowly start the long process of healing-! She’s lucky to have u- let her scream- listen to her ( don’t argue).. remember most of us have no idea what the hell is happening! Stay vigilant, challenge the doctors and find support..

I hope this helps.. it can get better ..

[Roz2409]

Wow! It really amazes how these symptoms persist in different ways. I too have this raspy voice that has got worse recently and I’m 5 months out of ICU. There sadly isn’t any ICU support groups locally available and I think this is an absolute necessity given how critically ill you have to be to even be in ICU. I never know what the recovery ‘symptoms’ are, what’s the asthma (which I’d never had in my whole life) what’s the side effects from medication etc etc alongside the new issues uncovered along the way. One things for sure the mind and body are incredible! 🤷🏻‍♀️ I really hope everyone gets well soon 🙏🏼 Roz

[Lam1e]

So pleased to have found this group, I don’t know if you are all still here but I had a similar experience!

As they tried to extubate me after a liver transplant in December I stopped breathing, they tried to reintubate, however I am a very difficult intubation and I believe they needed to be quite rough! They then did an emergency tracheotomy. When I woke up and they tried to get me to swallow I couldn’t, I couldn’t chew, I couldn’t even take a sip of water and everything was done through an NG tube! I couldn’t speak, even though they had adjusted the tracheotomy tube! At one point I thought I had a stroke as it was worse on one side!

I can not fault them as the Consultant and her team were trying everything and listening to me as best as they could! After about 5 days one of the registrar’s thought it might be something called Tapia Syndrome and after more research and tests they decided it was (only 5 people in the UK had been diagnosed with this)! Due to all the stress and trying to do an emergency reintubation the nerves had all been badly damaged but as far as they could tell my damaged functions would return! This all happened in early December, by the middle of January speech and language had started to return, by the end of January the NG tube came out and I got home, by the end of February I could eat normally and my speech and language function was 90% back and by the end of May everything is working as if should!

Very traumatic and I am going to have a virtual appointment with the ITU team to talk through the whole experience! I gave no complaints to make they saved my life, I am very grateful, but it will be good just to get it out in the open! I am also going to have some clinical psychology support!

Very blessed🙏

Lesley