bahami1019
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bahami1019, September 23,  2019  9:07pm EST

Question about Husband's stroke

I apologize for the long post but it's quite the story. We have had a very rough year - back story is that about 4 years ago my very healthy, incredibly fit husband had a  physical which showed he had an aortic aneurysm.  Did some research and were told to go to a doctor with great credentials (he was a little arrogant but I was more concerned with his abilities than his personality. He also stated my hubby had a bicuspid valve (one of which was calcified) and needed a new aortic valve.  We chose the pig valve (at his suggestion) and the surgery went fine.  A few months later he had a bout of confusion, took him to ER and they stated they thought he might have had low sugar as he had just worked out - he seemed fine and then got very sick a few days later.  Took him to the ER again and they found out he had a blood infection.  In the hospital they initially said his valve was fine (we had several of the "gold standard" test (TEE) but he kept getting worse to the point he was in heart failure.  They did another TEE and found his valve was destroyed by the infection so back to the surgeon who suggested a TAVR.  I was concerned because they said they encapsulated it rather than remove it but my husband was so weak they felt it was the best option and told me there was no way the infection would get in his bloodstream from the encapsulated valve.  Back to surgery and it went very well but a few months later he had extreme confusion, back to ER and they did a CAT scan which showed nothing so they diagnosed him with Trans Global Amnesia.  Two days later he was no better so I took him to a neurologist who told me he had a stroke.  They gave him blood thinners and sent us home.  Over the next two years he had several strokes and I had to argue every time to give him an MRI because CAT scans never showed the strokes.  The increased exponentially - at one point he had 2 strokes in a 3 week period.  Each time he would be admitted, the doctors would all agree it pointed to coming from the aortic valve but never could find the cause.  They would do a TEE but it never showed anything - I was concerned because it took several before they showed the first valve as being destroyed from the infection.  I kept telling the doctors I felt we were walking on a land mine because although he had been lucky by only being left with mild memory issues, I knew each stroke had the possibility of killing or incapacitating him but they simply discharged us with more blood thinners (first Plavix and then Eliquis).  On April 10th we went to a pub with the dogs and my son - everything was perfect and then we went home to get into jammies and watch a movie - I was in the bathroom getting changed and I heard my son yell.  I came out and my hubby was collapsed on the floor, face drooping, no ability to speak and left side completely paralyzed.  911 was called and he was rushed to the hospital - they were going back and forth about whether to do the clot removal and then he started being able to move again so they felt it would cause more harm than good.  He was very confused, hallucinating and wasn't making any sense and they had him in ICU.  Another TEE and no obvious cause according to the doctors.  I asked the neurologist on staff what I was supposed to do and she told me to "just watch him" and as I explained to her that was completely unacceptable.  I then said I was taking him to Mayo and she said she didn't know anyone there  but I told her I didn't care.  I called Mayo in MN which is completely across the country but my insurance covered it.  They say him 10 days later and the neurologist said this was totally unacceptable and that it was unheard of that someone with no risk factors would have this many strokes without there being a physical cause.  They did the same tests and found the TAVR was pulling blood behind it and was causing the strokes.  The cardiologist got involved, admitted him and amazingly I found out he had actually trained my original surgeon.  He told me that he was a nice guy but had not done the procedure the way he was trained.  He had to undergo a 12 hour open heart emergency surgery where they took out everything the original hospital had done and then redid it with a mechanical heart.  After surgery, his confusion was almost frightening but they told me they felt it was ICU dementia. He has recovered well except for extreme fatigue but he is so confused.  He tried to go back to work but that was a failure.  He is going to speech therapy for cognitive issues and doing Constant Therapy at home along with some other memory games.  His personality has come back about 70% but his short term memory makes it hard to do much of anything and his abilities to have sny self motivation is nil.  I had hoped he would be much better at this time but I'm losing hope - I am not sure if I will ever have the husband I knew back.  I will be by his side no matter what but at times it is so lonely and depressing.  I also have to deal with our boys who are very close to our dad being worried they won't ever get their dad back.  They tell us that the most recovery is almost at the end - he'll still keep recovering but much slower.  Our entire life has changed and I don't know how to deal with it but I'm trying.  The thing that upsets me is that the hospital in our town (which is world renowned) didn't go the extra mile and our State makes it next to impossible to sue for negligence and I haven't found a lawyer who wants to touch a malpractice case.  I actually had one lawyer tell me that the hospital I used is very well respected but Mayo is top of the line and they don't expect our hospital to have the same standard of care as Mayo would.  Sorry for the length but I'm hoping I'll hear something that will give me hope.  At this point we're pretty much at the point at having to file for SS Disability which takes time and he can't get a NeuroPsych Test until December.  Thanks for listening.

3 Replies
  • AHAASAKatie
    AHAASAKatie, September 24,  2019  9:34am EST

    Good morning, I am so very sorry that this has happened to your family. Stroke recovery can be brutal and I can understand how hard this must be for all of you. Have you checked out the Patient Advocate Foundation? They might be able to help guide you through the financial piece of this.  Please know that you are not alone, we are here for both of you. Best Katie

  • JeffB
    JeffB, September 24,  2019  10:34am EST

    Wow, that's a rough road for you, him and your sons. I'm sorry that you all have had to endure this.

    I basically lost a father figure a couple of years back to a hemorrhagic stroke. He was never the same afterward but we all did what we could to ease his transition and accept the fact that we lost some parts of him, but not all of him. I hope that some part of your journey includes some brights spots. And soon.

    Hang in there and stay strong. But also realize that it's OK to be mad, sad, lost and otherwise on an edge that no person should have to be on in life. Take rest where you can and be as kind to yourself as you are to your husband. He's going to need your strength.

    All my best,

    Jeff

  • JKViggiano
    JKViggiano, September 25,  2019  4:45pm EST

    Please don't listen when someone says your husband is near the end of recovery. Yes, it slows down, but it only ends when he stops working on it. It took my husband 4 years to get one finger to move on his right hand. It took 4 more years to move all his fingers. At 11 years, he drank from a cup!  Sounds silly but it was HUGE to us! All the work has been worth it.

    We had young kids when my husband had his stroke. I had no idea how deeply they were affected.  It took years for the effects to truly surface. Our daughter was 14 and was more overt with her feelings. I was able to talk to her and help her for the most part.  Our son was 12 and he held everything inside. He is by far the most damaged from the experience. The father he was left with was so different. His way of dealing with the loss of the father he adored was to detach emotionally from just about everything.  Keep a close eye on your kids.

    We had a less that stellar experience with our first hospital. We had it investigated for malpractice and were told by the attorney that we would not win. It was very hard to accept.  My husband and I agreed that for us to move forward, we had to forgive those first doctors and focus on recovery--we had no room for anger and resentment. I had to remind myself to forgive them every day for a couple years, but it really helped. 

    It was important to us that our kids see us pull together through adversity. If there were ever an opportunity to model what a good marriage looks like, disability is it! It's hard but you can do it. Good luck.

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