Dealing with Multiple strokes

[MrFritz]

Hello to all,

 

New to this forum.

 

I am a 42 year old gay male who has been in a monogomus relationship with my partner for 14 years. He is 60, used to be an IV drug user until last April when he suffered a stroke. Not only that but I then learned that he was also HIV/HEPC positive.

 

Needless to say, this event turned my life upside down. Not only due to his loss of income but to dealing with his lack of insurance, depression and disabling condition.

 

We have since started treating his HIV infection and that is under control. (Funny how I focused on the HIV immediately (probably out of my own fears)). Now I realize that the stroke is much more of a health issue than the other two combined at this point.

 

After 10 days in the hospital in April, he was finally transfered to a Rehab hospital. The rehab hosptial had refused to take him at first because of his lack of response in their evalutation. I had to literally fight with the Dr. to take him off of the "zombie" drugs they were giving him so that he wouldn't pull his tubes out. I was with him 24 hours a day (not to mention his family members were also there alot) and watched him every second. they just wanted to keep him on these "drugs" that made him so out of it because I think it just makes it easier on them. Well two days after they stopped the drugs, he was accepted.

 

Let me say that this has been a journey. From rehab, medicaid, a nursing home and finally (after 3 weeks in the nursing home (what a nightmare!) I was able to bring him home, through a charity program at the rehab hospital, that paid for all of his necessities until medicaid finally approved him. Also, through our states brain waver program, I have a CNA that comes in 5 days a week for 6 hours a day to care for him. This is all through public aid so I realize that I am really fortunate to have found all these blessings.

 

Since then he has suffered a mild stroke in August that only affected his eyesight and caused double vision. I was heartbroken because he was in outpatient thereapy (Physical, occupational and speach 4 times weekly), in addition, they transported him from home to the center and back, but he had made so much progress. Wasn't walking on his own yet but did with assistance. Right arm and fingers coming back, and speech greatly improved.

 

It took about a month and his vision returned to normal.

 

Now yesterday, he suffered another stroke.

 

Actually 3 mini strokes according to his MRI. His speech is slurred and he cannot move his right arm and leg again. The hospital physical therapists were in today and said that he showed muscle reaction in both arm and leg and would recommend him for inpatient rehab at the same rehab hospital.

 

So here we go again.

 

Glad I found you guys.

[jriva]

 

 

Hi MrFritz,

 

I'm sorry to hear about your situation. Strokes really mess up a lot in a person's life and then to have other health issues on top of that, it must be very difficult.

 

I don't have any wise or helpful words to say, I really just popped in to welcome you to this website. Stick around and do some reading in the other forums. I'm sure you'll find some comfort in knowing you're not the only one in pain.

 

Jean

[cinder]

My father is a multi stroke survivor. After each stroke and tia I watched him change a little more. I know the heartbreak of watching months of hard work and progress leave in the blink of an eye, and about the fear of an unforeseeable future. I know how helpless you feel and how much you want everything the way it used to be. All I can tell you is that sometimes in an uphill battle, there is some rolling back. Before you make it to the top and over. He needs you to stay strong and supportive, to learn as much as you can, to be his advocate, and to bring him a smile every time he sees you. He will feel alone in all of this, but your actions will help him to not feel as alienated. I'm glad he has you.

[MrFritz]

Thank you Cinder !

 

You have captured what I am feeling. I am so used to being in control of situations, that I have no clue what do when I am not. I get very anxious when I don't have a clear path in front of me on how to solve a problem.

 

I do not like relying on others (whether it be Dr's, thereapists, etc.) opinions on what our next course should be.

 

I am willing to accept his eventual disability. But not until we both feel we have given it our all.

 

I am afraid that I will be told tomorrow that he isn't going to be accepted into Marianjoy (the rehab hospital). I don't know why I am so afraid, but I am. His public aid situation has alot to do with this. If you have insurance, you can get a much longer duration of treatment than with public aid. I have talked to people who have had outpatient thereapy for six months, to two years. Yet we only get about 4-6 weeks per shot.

 

Its just very hard not to be discouraged after all this.

 

The bright side is that the Dr. said that since these were mini strokes, they might revert back and he would be as he was before the stroke.

 

Maybe wishful thinking.

 

Thanks for your responses.

 

Steve aka Fritzie (actually our dogs name/ chow/lab mix)

 

[Guest cbramsey]

Hi Fritzie,

 

I have had either 3 or 4 TIAs (depending upon whether you count the first one as a "real stroke").

 

I understand how you feel with respect to not liking not being in control. It does seem like a feeling of helplessness sometimes.

 

The fact that you are being a caring caregiver to your partner is a wonderful thing.

 

Hang in there. There are an awful lot of nice people here who have been through the same experience as you and the advice and knowledge they have will be of benefit to you as it has been to me.

 

Good luck to you and your partner.

 

Charles

 

[door60]

Steve:

 

You should contact the GMHC in New York City -- they may have funds for your partner for increased therapy -- who knows -- it is an additional avenue that you may want to reach out to. You have to tap into whatever you can that fits your partner's situation. I know for my mother, we tap into the Holocaust Foundation. My mother was a child in hiding during the war, and today because of her bad financial, and physical situation, she gets some funding for aids to take her to therapy.

Dorrie

[MrFritz]

Thanks for your responses,

 

Thanks for the info door, however we are in the Chicago suburbs. There might be additional options out there and I will see. Because of his HIV status we have a case worker who is really good. I will speak to him.

 

Unfortunately today, the rehab hospital dr's didn't make it to see my partner. Hopefully tomorrow. His situation is about the same, still no movement in hand or leg and speech still slurred, however, I could understand him better than yesterday and others have said the same.

 

Anyway, thanks for everyone's kind words. I will keep you all updated.

 

Steve aka Fritzie

[MrFritz]

Hello all,

 

After some reading here, it made me realize something I had forgotton about. My partner has a PFO. They discovered it when he had his first stroke. Reading his discharge papers from the hospital, they state:

 

"A TEE was also done which was consisent with a small PFO with evidence of right to left shunt during the Valsavla maneuver. I discussed this with cariology and they did not recommend any further intervention at this time".

 

It just makes me wonder why this has not been brought up again with the second and third stroke by his doctors?

 

Because he was an IV drug user, they have checked his urine with each stroke. Today I was told he tested positive for marijuana (he took one hit off a joint on new years eve before I caught him) and amphetemines. He has had no access to any drugs. (The joint was passed around at a New Years Eve gathering and I waIked into the room and saw him exhailing and then coughing till he turned red) However, it seems that the Dr's at the Hospital only want to "look" for "drug" causes of his strokes".

 

This seriously makes me think that his PFO could be the problem ( or a least part of the cause).

 

When he had the second stroke, they put him on cumidine. The third was caused by his smoking (3/4th pack a day) or so we have been told. I agree that smoking increases the risk of stroke, and he has agreed to quit and has started the patch while in the hospital.

 

Should I be pushing them into more testing regarding the PFO?

 

Any replies would be appreciated as he will probably be discharged Monday.

 

Thanks.

 

Steve aka Fritzie

[Guest Lin]

Steve,

 

The bad news is that often doctors cannot pinpoint the reason for a stroke. The human body is very complex and the parts are interrelated.

 

Medicine works, and we have been led to believe this is true, as a cause and effect system. That is every situation happens for one easily defined reason and the solution is to fix that one reason. Often the fix is meds or surgery. This works fine in some cases, but often not in stroke.

 

You say that the cause of the last stroke was smoking cigarettes. Certainly smoking didn't help, but I suspect smoking was just part of a matrix of things which caused the stroke.

 

I understand that 25% of the population has PFO's. Only in a small percentage of instances does it lead to a problem. Because he has had a stroke I would certainly ask about the PFO and why the doctors did not recommend that it be closed. There are people on this board who have had PFOs closed. Closing would certainly give the peace of mind that it a PFO will not contribute to another stroke.

 

Thinking that stroke is caused by drugs is very common with those under 65. I had my stroke at 46 and they were sure that was the reason. Blood tests showed that I did not have drugs in my system. I find it hard to believe that a small amount of marijuana would cause a stroke. But, because his immune system is compromised, his body may not have been able to deal with drugs.

 

Hard to say. In fact, the doctors cannot say for sure.

 

Keep asking questions!

 

Good luck.

 

Lin

 

[LMS]

Hi Steve,

 

I'd definitely pursue the PFO aspect. I'm 48 and had a stroke 6 1/2 months ago.The doctors were pretty certain this is why I had my stroke and I had the PFO closed 5 months ago. I'll be able to go off blood thinners for good in three weeks pending a good echocardiogram.

 

I can't urge you enough to investigate the possiblity of your partner having this closed. It could save him from more debiltating problems.

 

Take care and good luck to you both.

[kbosworth]

Hi Mr. Fritz,

I wanted to say welcome too.

 

My mother was a multiple stroke survivor. I know all too well the frustration of trying to keep on top of things and trying to find the key to make it all better. Cinder said it perfectly when she stated "the heartbreak of watching months of hard work leave in the blink of an eye." How true. How frustrating.

 

You are a great advocate for your partner and I have a feeling you will stop at nothing to make sure his care is good, his progress begins again, and the rehab keeps on. Good for you. He is lucky to have you. I agree with Lin that there are many things that probably contributed to his stroke. Nobody ever knows for sure. The challenge now will be to make him strong again and work hard to get there.

 

Good luck to you both and please hang around to vent and share.

 

Kathy B

[MrFritz]

Thank you all for your kinds words and well wishes.

 

My partner has since had a feeding tube put in since he developed aspiration pneumonia. That was about two weeks ago. Today he passed his swallow test so that he can eat regular foods if he turns his head to the right with each swallow. He is still on thickner for liquids.

 

He also has begun cooperating with the therapists at rehab. He has walked 42 steps with assistance the other day. Not much movement with the right arm yet.

 

He is being discharged next week and coming home where I will have home health care, a CNA and ME! (when I am not at work). In addition, he will be getting all three therapies at home for about a month until he starts outpatient therapy.

 

Just wanted to post an update.

 

 

Steve aka Fritzie

[mreefca]

It's estimated that 5-10% of the US has a genetic clotting disorder. Depending on the type, a clotting disorder alone may or may not make you more likely to have a stroke. The % estimates I've seen for PFOs vary widely, but they are relatively common. PFO alone raises risk for stroke. PFO + clotting disorder greatly increase the risk.

 

Just for estimation, if 10% have a clotting disorder and 10% have PFA, that's 1% of the population that has an inherent, genetic risk for stroke for these reasons alone.

 

Factor in additional risk factors, like smoking, or birth control pills, and the odds start to seriously stack up.

 

I'm the caregiver, but I'm the one with the clotting disorder, so I was up to speed on this subject prior to my fiance having a stroke. But it is SHOCKING how little many neurologists know about these two extremely common factors IN COMBINATION.

 

The immediate treatment will still be Heparin, Coumadin, or Lovenox, but you should ask to see and understand the tests they performed regarding clotting. There are genetic tests now that were not available 10 years ago.

 

Aspirin and Plavix are good to prevent some types of clots from happening again, but not all types of clots.

 

Lastly, there is a very good technique for treating PFOs now that requires minimally invasive surgery. Someone who has both a clotting disorder and PFO should definitely consider this, in consultation with a good cardiologist.