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mini stroke part of HE

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Posted 10/25/2012 3:46 PM (GMT 0)
Hi, just a review ... hep C since the late '70's, 4x of treatment, deemed decompensated in 2006 from esophageal bleed and recent onslaught of HE ... and have just started evaluation for transplant.

Went to begin transplant evaluation a couple weeks ago ... waiting for appointments for various tests.  Initial meeting was helpful.

Then, I had what was diagnosed as a mini stroke on Monday.  CT scan and neck ultrasound were clear, now waiting for follow up with stroke centre.

When I told the transplant co-ordinator about my symptoms she thinks it might not be a stroke, but caused from encephalopathy (nobody had contacted them but they had the results of the scan).

I'm still experiencing twitching and jerkiness two days later.  Today is better.  I'm taking lactulose 4 times a day.  Am mostly in bed exhausted and can't eat much.

I'M TRYING TO REMAIN CALM until a course of treatment is prescribed.  It was the scariest thing I've ever been through ... I was extremely shaky, my face was contorted sideways, couldn't talk, and my leg was dragging ... it came out of nowhere.  Didn't last long though, only about 1 1/2 hrs.  Once I figured out what the EMT guy was saying, the oxygen helped SO MUCH!!

This is a small hospital in a rural community ... they have to send blood tests out sometimes, so any serious testing is 1 1/2 hours away ... occasionally I feel like they're out out their league in dealing with serious illness.  Thankfully the transplant co-ordinator is getting the hepatologist involved and even if it's not liver related they will try and have their input.

Any similar experiences?  Suggestions?  We are likely moving back closer to civilization in the next year or so ... giving up waterfront & 270 degree mountain view ... but we both feel like it's the wise thing to do.  We'd be closer to my family who could give my husband a break sometimes.

 

Posted 10/25/2012 5:27 PM (GMT 0)
H&C

Welcome back, we don' hear from you often.

This stroke/non stroke is new to me. HE is NOT new. My partner had it in spades before his tranplant...but no mini strokes, or TIAs. Lots of somulence...sleepiing the day and night away though. And grumpy, craziness.

I think that moving close to civilization sounds like a great idea...espcially if your need for care is increasing.

We are 2 hours plus traffic jams from our transplant hospital and get NO care locally. Though we live in civilization, we had a couple of close calls at the community hospital and don't do that any more.

We have talked avbout moving closer to Miami and that would have been a good idea a year ago, but things seems to be more stable now.

I hope some others have some help for you.

Carol
Posted 10/25/2012 5:53 PM (GMT 0)
Hi, H&C. It certainly sounds like a stroke to me. However, I don't see the connection to HE. As you know, HE is caused by ammonia build-up in the brain. A stroke is caused by a burst blood vessel in the brain, commonly due to high blood pressure, but there are other causes...HE not being one of them. I have seen people post about having restless legs or twitching, but not from a stroke or TIA. Our member, David, had a brain hemorrhage at one point, but I don't think it was due to his liver disease. Maybe he will chime in here.

How close are you to a major transplant center? The center isn't at the smalll, rural hospital is it? I surely hope not. I agree that it would probably be wise to move closer to a major center. If it weren't for my transplant and ongoing problems from Hep C, I'd probably be in Sarasota or Clearwater (FL) right now. I stay in Jacksonville to be close to Mayo. I'm actually at Jax Beach and Mayo is 12 min. away by car. I use Mayo for most of my medical care, not just liver related.

If you should experience symptoms of a stroke again, get someone to drive you immediately to an ER. There is medication to prevent the effects of a stroke, like droopy face on one side, verbal impediment, and dragging one leg. It is called "the Golden Hour" as the med has to be administered within an hour of symptoms.

If you do have a transplant, you are going to need a caregiver for awhile. You also need someone to take you to appts. For some, they require a caregiver to be with you. There are many tests prior to transplant, during the evaluation, but Mayo does most of them again after transplant. I'm having most all of them done again for my 1-year anniversary (on Sat.) with my new liver. After I was discharged following TP, I had to go 3 x a week for blood work. You could probably have that done locally, if they coordinate with your Transplant Coordinator or hepatologist.

Get the best care you can. Also, make sure you are getting some nutrition in the form of Boost or Ensure, or Carnation Breakfast Essentials, since you are not eating much.

Hugs,
Connie
Posted 10/25/2012 6:32 PM (GMT 0)
You need to find out if your stroke was from a clot, or a bleed from a ruptured blood vessel. If it's a clot, there are clotbusters, but they need to administered within an hour or two. A bleed (like I had) is dangerous because when your liver is failing, you bleed more readily. If clot(s) are the cause, you might need aspirin or coumadin sp. to keep the clots from forming. Get to a good neurologist. They might give you a med to take care of possible seizures, as they often precipitate re-occurrences of a bleed. That's what happened to me. First a mild bleed, a week in the hospital, another week in rehab and I was pretty much OK. Five days later, a seizure led to a big bleed, paralyzed right arm, then a month in the hospital, 6 weeks in rehab and a year of outpatient rehab. Don't wait to get this taken care of.
Posted 10/25/2012 7:09 PM (GMT 0)
As a side note my father was taken off Coumadin months ago due to problems with the medication . I have heard more doctors are getting away from prescribing it ( Coumadin ) and using Xarelto ( Rivaroxaban ) .


A. Ziffle
Posted 10/26/2012 12:30 AM (GMT 0)
Thanks so much for your input, everyone. It puts my mind at rest a bit. MamaLama ... the more I've had to go to this country hospital the more uneasy I get. Connie ... the transplant centre is 6 hours away and if we move, we'll be by it because that's where my family live, so that's good.

They didn't administer any drugs ... they tried but blew 3 veins and they tried once more that day and another one blew. They didn't try again until the next day - and that was just to prep for the ct scan. They gave Ativan to calm the tremors and seizures, and just kept me for observation. We did go to the regional hospital the next day for the ct scan and neck ultrasound ... which were both clear - no clots, no bleed. (I think that's why the transplant co-ordinator thinks it wasn't a stroke.) When we got back to the country hospital I was released and wasn't able to ask any questions.

Thankfully the neurologist at the regional hospital is seeing me Wednesday next week so I might get more answers then. I feel like I'm walking on eggshells until then. My neighbor(s) are on high alert, bless their hearts. They had to call 911 for me on Monday ... I was home alone and they recognized my number and called ... I couldn't talk.

David when you had the mild bleed did it show up on a ct scan? If there is a mild bleed, would it show up then? I've had no blood in my stools or stomach. Just wondering because they almost missed the esophageal bleed until it was too late. I believe the hepatologist is going to request that the neurologist do an MRI ... not sure what the difference in results is between MRI and ct scan.

Thanks again ... Deb from Canada

The input here really bridges the gap between doctors and patients who are undergoing new and frightening symptoms. Thanks again.
Posted 10/26/2012 1:12 AM (GMT 0)
Deb , I can relate to anxiety with small town hospitals . I live in rural N.C and dealt with old school doctors after my diagnosis . Liver disease is usually dealt with by G.I doctors here , They are knowledgeable but don't have the specified training and usually a lack of desire to get into new research . " If it's worked for 40 years don't mess with it " type mentality .

There is just simply too much room for ere when dealing with liver disease , let alone having someone digging around in you with substandard technology or the inability to use technology available to them . Two weeks of learning the hard way in our local hospital convinced my family to relocate me by ambulance to another hospital 1 hour away . Now my wife and I both go there to get services that could be done properly 15 minutes from my house . I also see a Hepatologist that's almost 3 hours away from me . I'm not sure I even want a aspirin from our local hospital . Do what you have to , Your life is way to important to gamble it .


A. Ziffle
Posted 10/26/2012 1:14 AM (GMT 0)
They could see the blood, as it looks like there's a cloud around the area of the bleed. That was a CT scan. Blood from a bleed in the brain doesn't show in urine or bowel movements. I think you need to think about moving nearer to civilization, for a top notch hepatologist and a neurologist. We have a great local hospital, but when things go awry, they fly us to Boston by helicopter.
Posted 10/26/2012 2:23 PM (GMT 0)
Not trying to be a Debbie downer here,,,but from first hand experience from my deceased husband who suffered from many many strokes,a C-scan does not always show a stroke has happened right away ! it could take several days for it to show up,,so I would ask for a second scan ! Strokes are nothing to play with,and its is so true with the "Golden Hour" Good Luck and Stay on the Drs with it !
Posted 10/26/2012 3:31 PM (GMT 0)
A. Ziffle and David .... your comments are well noted and I'm taking them to heart. My husband is in the middle of a winning football season (coaching two teams) so we'll wait a couple of weeks until the playoffs are over, then make a plan. This little community team never had a winning season before so you can imagine his excitement!

notenoughhelp - I didn't know that about the stroke not showing on a ct scan - any info is helpful whether I like what is said or not - I always feel better with more info than less!!! So thanks!! My understanding is that the ER diagnosed it as a stroke, but the transplant clinic feels it may be damages from encephalopathy episodes.

They are doing an MRI in a couple of weeks (ordered by the transplant clinic). Plus I do have an appointment with a neurologist next Wednesday. Today I am out of bed and that's great progress, I think.

The hepatologist from the transplant clinic is ordering more blood tests and I have to go back to see her Nov 6. She'll have all the results from the abdominal MRI, the head MRI and the blood tests, then .... so .... hopefully either the neurologist or hepatologist will have a better idea of what we're dealing with. If not, perhaps we go back to the old "wait and see" routine which we all know and hate.

thanks, everyone.

Deb from Canada
Posted 10/26/2012 7:37 PM (GMT 0)
Deb, I don't know if the "rules" are different in Canada, but here you have 4-5 hours to get to the hospital when the TC calls to say there is a possible liver for you. If you don't get there within the allotted time, the liver goes to someone else.

Hugs,
Connie
Posted 10/26/2012 8:22 PM (GMT 0)
Connie - I have read that rule on this forum and it was in the back of my mind. They have not talked about putting me on the list yet so I think we have time to sell and relocate. We're almost at the American border where we live now, so it would be 5 1/2-6 hours from our door to the transplant hospital - University Hospital in Edmonton (Alberta). If it was winter, who knows how long.

I didn't get the chance to see if the rules are the same here but likely they are. Was waiting for an appointment with the transplant clinic (it's in Calgary, only 2 hours away) that included some teaching and we just haven't got that far yet. Last I heard I was "years away" from needing a transplant. I'm hoping and praying that's still true regardless of this latest trouble.

Thanks, Connie. So glad you got through your anniversary tests o.k. - sounds gruelling. Have they given you a "percentage" chance of the HCC coming back because of the HCV? I've been on treatment 4 times and each time was hell on wheels - (mind you the success rates were lousy back then). At some point after your transplant you should be able to have some peace. That's what I'll be hoping for you.

Deb from Canada
Posted 10/26/2012 8:33 PM (GMT 0)
Debbie, we haven't discussed HCC coming back, but I'm going to bring it up at the meeting in Nov. I feel that's what will happen if we wait too long for treatment.

Before being listed, you would go through some extensive testing and consults to determine if you might be a good candidate for transplant. That info goes to a committee who makes the recommendation (or not) whether to have you listed. Here's hoping you will never need a transplant, but if you do try to go with a center that has a short wait time.

Hugs,
Connie
Posted 10/26/2012 9:06 PM (GMT 0)
Debbie

Sorry if I am being stupid and hopefully it will never be needed but wouldn't they fly you up to Edmonton for a transplant?

Ann
Posted 10/26/2012 9:24 PM (GMT 0)
Hi, Ann. I've never had a chance to ask about it yet. In theory it sounds great but what if the organ is ready in the middle of the night? I don't think the air ambulance can even make it there in 4 hours - maybe. Commercial flights are 1 1/2 hrs away and a 2 hr flight after that. So it's cutting pretty close, I think. It's all the cumulative driving back and forth that's going to be the main reason for a move ... it's already getting to be stressful and we're just starting what may be a long list of appointments and tests.

Deb from Canada
Posted 10/26/2012 9:36 PM (GMT 0)
Yes I can understand that! I only need to be monitored twice a year and I find the 2-3 hour trip to the hospital I attend very annoying!

I have relatives in Canada (in Alberta and BC) - it is only when I visit them that I am reminded of the distances there.

Ann
Posted 10/26/2012 10:56 PM (GMT 0)
Deb, Mayo requires a lot more testing than most. I was there 4 days a week during evaluation and post-transplant about the same. Blood work was very frequent, finally dropping to once a week and then every two weeks, and finally at once a month. During this anniversary checkup, I've been there A LOT. They have to keep checking the gall duct flow immediately post transplant, as well.

Hugs,
Connie
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