Posted by DawnLynn on 10/11/2020

My husband is only 54-yrs-old and was in pretty good shape. About two weeks ago he called me from the desk at the ER and said he wasn't feeling well and it is highly unusual for him to go to an ER so I was worried and went straight away. I was close by the hospital so went directly there and was met at the door by a doctor who told me he suddenly dropped to the floor after he got off the phone with me as he walked into the emergency room. They immediately started CPR and shocking him for 30 minutes with no results so they quickly put him on ECMO to try and keep his heart pumping while they figured out why it stopped. I was told he was clinically dead for a total of 55 minutes. His brain lost too much oxygen so he was on cardiac life support for 6 days and now on pulmonary support because he cannot breathe on his own yet. I am so blessed that he has survived the attack. I am now so scared of what the future holds for him if he ever comes back to us. They kept him in a coma for almost a week and now are slowly trying to wake him but he won't wake up.

It has only been 10 days since the incident and he finally opened his eyes today but is delirious and they cannot do any kind of neurological testing until he can breathe on his own and come out of the place he is lost in his head. All I can do is cry. He looks so scared and I know he doesn't understand what has happened to him but I feel lost and helpless. I don't know if he will ever have brain function back even though the MRI does not show entire loss of any portion of his brain. He looks like he is in pain all the time and is continually withering around trying to get out of the hospital bed so they have him in restraints which I know would drive anyone mad but they claim he is delirious.

There is so much more and then I found out today that he has pneumonia and blood clots in his shoulders from the ECMO and ventilator. I'm not getting great communication from the doctors and my brain isn't processing all of this very well. I know every case is different so I am mostly just looking for information from anyone who may have had a similar experience who may be able to provide me some comfort or hope that I may not lose my best friend after being married for 30+ years.

I feel so helpless, lost and alone right now...any words of wisdom that may give me some hope would be very appreciated. I'm so afraid to lose my best friend....

Comments

Submitted by SCAFoundation on 10/13/2020

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Dear Dawn,

Our hearts go out to you. We are happy to know your husband survived cardiac arrest. At the same time, we are sorry to hear you are undergoing such a painful experience--including fear of the unknown. Please know we have interacted with many spouses of sudden cardiac arrest survivors who experienced similar feelings of helplessness and anxiety as they waited for their loved ones to come back to them. While we cannot comment on your husband's prognosis, we can offer you hope and support.

So many of our members have been in your shoes and in the end there was good news. Here are a few links that may be helpful to you:

We will reach out to some of our community members and ask them to share their insights. In the meantime, please know we are thinking of you!

Best wishes,
Mary Newman

Submitted by ajlepere@kensh… on 10/13/2020

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Dawn,
First--I am so sorry. It is awful what you are both going through and I am sorry again that you have more difficult days ahead. Obviously, no one can predict what the final outcome will be. I do know my experience though with my wife who had similar challenges.

When I was in your shoes I didn't know it at the time, but those moments were harder for me than they were for my wife. We discussed this in great length after her miraculous recovery. She was still under the influence of a great deal of drugs as they take a long time to leave your bodily systems. Plus, her mind was still recovering on its own and just was not fully aware of her situation as I was. I am glad since this allowed her to focus on healing and not worry about the details which was my reason for being there.

What helped me greatly was to arm myself with as much information as I could. I literally sought out the med staff--doctors, PA's, nurses, etc. and asked them many questions. I asked when they made their rounds to my wife's bed and ensured I would be there each day at those times to listen in.

I asked questions like: What is happening with my wife now--medically? Can they draw diagrams that explains what she is struggling with? What do they expect to happen going forward based on their experiences with other patients in similar circumstances? What do they see as the range of potential outcomes--what is the best case scenario and what is the worst?

All this helped me stay focused and gave me purpose. I could then learn and prepare for what's ahead--good or bad. I felt doing this was the best thing for both me and my wife. The better prepared I was the better decisions and support I could offer for her.

What you are going through will be one of the most difficult times in your life. You have to stay strong and one way to help is to make sure you are taking care of yourself--eating right, sleeping right, having the right mindset. Take moments throughout the day and when trying to sleep at night to breathe, meditate. Staying focused on his future health and your current health will help you both more than you know right now.

Keep us posted. I will meditate on both your well being.
With much compassion,
Andy

Submitted by tabbycat2002 on 10/13/2020

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Dawn,
I'm so sorry for all that you and your husband are going through. It's very hard not knowing from minute to minute how things may change. I don't have a lot of advice, as I was the patient and don't have memory of the early days. But I know that it took a long time for the coma medication to wear off. I had some very crazy hallucinations during that time. I was hospitalized another 3 weeks after coming out of coma and although I felt normal, I realize now that even by the time that I was released I still wasn't myself. My mind was clouded. It took many months. Each day more and more of the medication will go away and I think you'll see small improvements. I remember being so excited when they said I could get up and walk. The excitement quickly faded when I discovered that I didn't know how to even get out of bed. My nurses were a great help. I still had so much of the medication that I don't remember much of that day or if I walked much. It's very confusing for the patient and for the family. I think, as patients, we appear like we are comprehending what is happening around us, but so much of what my family told me later I have no memory of. And I lost memory of the week prior to my SCA and also things would come up and we'd find I had forgotten. Example; when my husband came to bring me home from the hospital, I didn't recognize the car. He reminded me that he had gotten a new car many months prior. Also, after arriving home (knowing how things should look at home), I realized that my vision was really off. Just so many small things like that. I don't think this is much of a help for right now, but I hope you will see progress very soon. If you wish to e-mail Andy or myself Mary Newman can give you my e-mail address. Best wishes to you both.

Mary -
I'm embarrassed to say I do not even remember signing up on this website or posting all of this information so I guess that shows what a basket case I really am.
Thank you for all of your advice in the ranks which I will definitely check out as soon as possible. I'm having a difficult day today so won't right a lot but I just wanted to thank you very much for your help and I'm sorry I didn't see this before but now that I know I'm already a member on the site I will try to check back is off and it is possible.

Thank you so much Andy,
I appreciate all of you words of wisdom and have been doing my best to be involved with every Healthcare professional who has been working with my husband, that said I am getting different answers from different people and nobody can seem to agree on much of anything at all. Due to the COVID, the hospital is only allowing me 1 hour a day to be with my husband. There is rarely a doctor to be seen while I'm at my hour visit. As we all know every case is different but covid-19 a reason for the healthcare professionals to not be providing me with the information I need to help my husband. Today I was granted temporary guardianship and I let the hospital know I wanted to be informed of any changes because he was doing great for 3 days until somebody did something with his tracheostomy and he went back into the coma. They said he was being aggressive but that was not until somebody did something and they will not tell me what happened. Now he is back in a deep sleep and they claim he won't wake up. They are moving him out of the ICU to a CCU unit but my fear is that if he continues to choke on the tracheostomy how will they know if he can't even be alert enough to push a nurse's button and I just don't trust them to keep him safe. I'm sorry I haven't figured out how exactly to use this website yet because I'm doing it for my phone but I will try to get better at this when I can see through my tears. Thank you again for your support and Godspeed

Submitted by Shael12345 on 12/10/2020

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Submitted by Shael12345 on 12/14/2020

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Submitted by klwilson on 12/14/2020

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I hope he is on the road to recovery. I can say as a survivor I do think it was harder on my family for sure then it was for me as I do not remember a single thing. I have lingering issues caused from the SCA and RF but have no memory, I look at pictures and absolutely nothing.

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