Feedback please - very worried wife.

[PamO]

Anti-psychotic drugs? That sounds very suspicious. Is there any reason he would have been given these before or during his surgery? Neuroleptic episodes - can they be caused by anything else besides this?

Definitely get the anesthiologist's records/charts to see exactly what he was given.

I am so glad things are looking up and you're seeing glimpses of his old personality. It will take a while, but things sound good! Keep us posted.

 

[Gemma]

Anti-psychotic drugs? That sounds very suspicious. Is there any reason he would have been given these before or during his surgery? Neuroleptic episodes - can they be caused by anything else besides this?

From the link I posted earlier:

"CAUSES

NMS is caused almost exclusively by antipsychotics, which includes all types of neuroleptic medicines along with newer antipsychotic drugs. The higher the dosage, the more common the occurrence. Rapid and large increases in dosage can also be attributed to the development of NMS. Other drugs, environmental or psychological factors, hereditary conditions, and specific demographics may be at greater risk, but to date no conclusive evidence has been found to support this. The disorder typically develops within two weeks of the initial treatment with the drug, but may develop at any time that the drug is being taken. NMS may also occur in people taking a class of drugs known as dopaminergics."

(NMS is neuroleptic malignant syndrome - which is all that turned up when I googled neuroleptic syndrome so presumably the same thing)

All sounds a bit weird to me too. The "Rapid and large increases in dosage" bit is what made me wonder if he was given something recently...

Incidentally, I did Psychology at high school and vaguely remember dopamine is something to do with mood, so dopaminergics are maybe some type of anti-depressants??? Don't quote me on that though!

 

[PamO]

Other drugs, environmental or psychological factors, hereditary conditions, and specific demographics may be at greater risk, but to date no conclusive evidence has been found to support this.

So, even though "...no conclusive evidence has been found to support this..." I take this to mean just about anything, although we can't prove it!

 

[jcat2006]

thanks again

thanks again

Hi all,

Thanks so much for the info on the narcoleptic syndrome. I agree with those that have posted that it seems a bit fishy that this is what he had especially since I found out today that he only displayed a handful of the symptoms you have when suffering from neuroleptic syndrome.

Also, since I last posted I have found out that the panels of doctors on his case are all not in agreement with what exactly happened during the surgery ? His primary cardiologist said there is an ?intellectual debate? on what exactly happened. His primary cardiologist and the cardiologist at his rehab center do not think he suffered from neuroleptic syndrome, but his neurologist thinks that he did. The two cat scans they gave Tim show no signs of a stroke, but his rehab cardiologist does not always go by Cat scans because they don?t always tell the entire story and eluded to the fact that he thought Tim had a stroke, but did not want to ?second guess the neurologist?. His primary cardiologist just seems to thinks that there was a problem with blood flow while he was on the bypass machine and has the attitude that he is getting better so who really cares what it was. Of course he did not actually say this to me but as he rushes me off the phone when I am trying to get answers from him this is the feeling I get.

As it stands now Tim is in cardiac rehab and he is getting better each day. He is slow in his thinking processes and physically (still can only walk with a walker), but the doctors are optimistic that he will make a full recovery, but it will take a lot of time.

I will keep pressing for a clear answer on what happened and when find out I will share with this group. I really want to make people aware that they need to ask questions before surgery. Having never had anyone in my life have major surgery I was not as proactive as I should have been in getting a clear picture of the risks. Part of this was that I did not want to scare my husband, when he obviously needed to have this surgery in order to survive and detailed risks would have only made him more petrified that he already was.

I just can?t wait until he is home, its very lonely here without him. He is encouraged by a psychologist ay the rehab center to write down his thoughts in a journal. Today he wrote ? ?I miss my cats and want to be able to sleep next to my wife?. It is not as well written as it normally would be but it was just so heartbreaking to read. He just wants his life to back to normal even though he cannot fully articulate it yet.

Thank you all again you really have been a great support!!!

 

[BDMc]

I'll Keep The Prayers Coming!

I'll Keep The Prayers Coming!

I think of you two every day. I hope his recovery gains momentum, and you see signs of his return to his old self. Brian

 

[Karlynn]

Sending you a big hug and God bless you for being such a devoted loving wife. You are going through tough times, but life will be sweeter and much more appreciated than the average couple your age can fathom. My husband and I went through some struggles because of my valve troubles when I was in my 20's and we both remember so well all the "would 'a, could 'a, should 'a" feelings we had then. Hind sight is 20/20 - you are doing an incredible job of coping, acting responsibly and being diligent throughout this experience.

I'm very glad that there is a psychologist seeing your husband in rehab. Depression is very common afte open heart surgery and when a young, vital person has the speed bumps that your husband is experiencing, it can heighten that depression.

Make sure you are taking as good care (or at least half-as good) of yourself, as you are your husband.

You both remain in my prayers.

 

[geebee]

Jen,

I think Tim's writing about missing his cats and wanting to sleep next to you says it all and actually brought tears to my eyes. You are right, he just wants things back to normal (whatever normal is) .

Rehab will make a world of difference and I am sure he will improve daily.

He is very lucky to have someone so devoted looking after his interests and providing such obvious love.

I am praying for you both.

 

[Blanche]

Jen:
My heart is there with you as you get through this stressful time. You have all of my hopes and wishes for an early reunion with your dear one, who will need much understanding and your love and patience. The most important thing that you MUST do now is take care of yourself. You must eat well and regularily, sleep, exercise and do all the things necessary to keep you at your best. Your husband will need you and you need to prepare for his homecoming by being in as good a shape as possible.

My husband had a stroke in 2000 and was hospitalized for nearly five weeks. It is so hard to maintain a balance when a loved one is in crisis and in hospital.

Kind regards,
Blanche

 

[Phyllis]

Praying for both of you that he will be home soon. I can imagine your frustration with the conflicting information you are getting. Just concentrate on caring for your husband and yourself for now, but be sure to get a complete set of records when this is all over and you have the time and the clear mind to go over everything and see what you can discover.

 

[hensylee]

This has been heartbreaking. We are a support as much as possible, but there comes a time when we are at a loss, too. This is one of those times that we just don't what's happening, like you. I hope at least one of those doctors can give you the real scoop that is needed for the recovery of your husband. If they don't know, they need to find out. You certainly have many people here watching and hoping for some good news and that you will be able to get him home in his proper setting. That will probably help him as much as anything. Home is our root and we need to be there. We are here, we care and we are reading all that you write. God bless.....

 

[LinPat]

Stay Strong

Stay Strong

Hi Jen

It sounds like Tim is making improvements every day. It's so hard when the improvements don't seem fast enough to get them back to where they were before. You have to celebrate each step taken, no matter how small they may seem to others. I agree with the other posts that you don't seem to be getting all the info you need. Have you tried to talk to the patient advocates at the hospital - sometimes they can be helpful in getting copies of the records. I remember that I didn't really research the risks when Mike had his surgery and only found out afterward. However, that didn't change the fact that he had to have the surgery to survive. You most likely would have made the same decision, even if you had researched it more. Don't feel guilty or responsible - Tim is very lucky to have you in his corner.

Keeping you and Tim in our thoughts and prayers - stay strong!

Lori

 

[aussigal]

Tim & Jen...

Your'e still on the prayer-list...

God Bless you both...

good to hear each day is bringing an improvement

 

[cassidy183]

verry worried wife husband home

verry worried wife husband home

Today I came home from my 2.5 week in the hospital and cadiac rehab. We are very happy but there is stll a way to go but I am looking forwardto getting back to normal

 

[PJmomrunner]

WELCOME HOME TIM!!!

All the best to you as you get better and better one step at a time!

 

[Karlynn]

Wow - HOME - congratulations!

So good to see you post!

 

[Granbonny]

Welcome Home, Tim

Welcome Home, Tim

Glad to see you post..means things are going a little better. Now, rest, nap and try a little walking in the house. Remember..1 day at a time... and you will be back in the real world soon. Bonnie

 

[Praline]

Welcome home Tim

Welcome home Tim

Glad to hear that you finally got home!!! I had surgery January 18 and did not get home before Sunday, January 29. I had an episode with "Ventricular standstill" where my one of the ventricles in my heart just top firing for about 4-5 beats. Sent me back to ICU for a few days with a temporary pace maker. Doctors( cardiology people) debated whether to put in a permanent pace maker but my surgeon insisted on waiting and my heart finally got back to sinus rhythm on its own. I still have AFib but they are just waiting ...
I wish you an uneventful recovery from now on. I am sending prayers and positive thoughts you way.

 

[Georgia]

Congratulations, Tim. You've certainly had a rough go of it. You got hit by the truck and the train and the tsunami, methinks.

Take good care of yourself - I'm sure Ann will see to that.

Stay in touch.

 

[KAJ]

Grrrrrrrrrrrrrrrreat news Tim! WELCOME HOME!. Your job is now to get well. Don't rush it. You have been in my thoughts and prayers.

Karl

 

[Phyllis]

So glad to read that you are home, Tim and posting too!!
Best wishes for a complete recovery and we look forward to hearing about your progress.