Scary Stuff

[looneytunes]

Well, the other shoe will fall, won't it.  Things going along fairly smoothly (at least as far as living with dialysis can be smooth) and last night, hubby had another seizure and crashed during treatment.   I swear, I lost ANOTHER 10 years off my life, probably won't make it till 70 now.     And I had a goal of 100!  This is the 3rd time he's done this.  I could handle a normal BP crash with just weak or fainting but..no...he has to have these very scary seizures with it.  Eyes roll back in his head, gasping like a fish out of water, thrashing around, then goes slack and is totally non-responsive with a gray color to his skin and a clammy sweat pouring out of him, can't tell if he's breathing or not.  700 ml of saline brought him back after what seemed an eternity.  He opened his eyes and said "I'm fine" just like nothing had happened.  Then he began vomiting and I had to unhook him to let him go to the bathroom.  No rinseback since I had emptied the saline bag and we couldn't wait to get him off the machine and into the bathroom.  Afterwards, he laid on the bed and slept for 4 hours.  With me watching him like a hawk! 

The weird thing is that this happens with no warning.  His BP was a little high going into treatment, 156/82.  We were taking a total of 1.8 off (which we only got .5 of before this happened) with 1. per hour.  His BP was fine 5 minutes earlier when we did a stat check (132/78) .  Then it went to 74/46 within the space of 5 minutes.  Everytime this has happened to him, it has really been sudden.  No cramping...no weird feeling, nothing.

And he wonders why I refuse to leave the house to even walk the dog when he's hooked up.   

My big conversation with him today has been about his weight and eating habits.  I told him that I refuse to be his mother and won't nag at him when he chooses the wrong foods to gorge on.  But his weight is not stable and every day is like playing roulette with his dry weight.  Eating empty carbs that have no nutritional value and not eating what he should has made his dry weight a moving target.  Not to mention that if I were to have to do CPR again on him, I would not be able to pull him onto the floor.  I don't weigh much though I am pretty strong physically.  But he outweighs me by about 125 lbs.    And I don't know what will happen if he doesn't respond to the saline.  Last time I had to do CPR I was able to pull him into the floor.  Last night, I tried and couldn't budge him.  He's gained at least 20 lbs since the CPR incident.   I really don't know if the fluid pull was the problem since it was so early in treatment and we were actually pulling less than we normally do or if there is another reason for these episodes.  The obvious culprit is the fluid but are there other reasons that could cause it? 

Today he has been very contrite and vows to "do better" and that he hates putting me through these scary episodes.  I've heard this before, though, and it'll be ok for a few days and then back to the same habits he'll go.   So, I put the shoe back on and wait for the next time.  I know I seem pretty calm and matter-of-fact about this but inside I am just shaking.   

Thanks for listening, I just needed to get this out.  (actually reading but who's splitting hairs here?) 

[okarol]

  very scary

[texasstyle]

Am I missing something here Looney my dear? His doctor DOES know about these? I may have missed other posts about this and am just reading it for the first time, but sounds like your husband is having Grand-Mal seizures. Also known as Tonic-Colonic. These are the kind of seizures that people usually have if they have other health issues. Extremly low BP, medciations, all kinds of things can trigger them off. Ok, so I guess evryone knows about this me. That being said-what is going on Looney? You know to put the head to the side so they don't choke on their tounge. Move things out of the area so they do not injure themselves on it. Very low blood sugar can cause an episode,  kidney failure, the list is endless. You know there is also the possibilty he has a seizure disorder. Does he have them otherwise when not on the machine? What is the dr. saying? If he has aseizure disorder he needs to be on anti-seizure meds.  grand Mal seizures generally happen when the electrical activity in the brain has been interrupted. My brother had them for years. It got to the point that we knew what to do when he did and didn't get him into ER anymore. They most likely won't remember and sometimes when they come out of a Grand Mal, they may be aggitated and little forceful. Like pushing you off them for example. they do come on out of nowhere. You can be standing and just fall to the ground. Oh those eating issues lol. Here we go... do they just NOT understand the importance of their eating habits. It's not even about living or dying because that's their choice but QUALITY of life. I know he deosn't want live feeling like crap. No one does. I can't even imagine having to do CPR!!!! How scary. I would be shaking too much to do it. Did you ever have a class on CPR instruction? I never did but would like too. I also have to wonder just a bit, is he really responding to the saline or it just so happens he coming out of seizure atthe particular time? If you haven't had a doctor check him over and dicuss this matter fully you should. There could be another problem outside of his dialysis that needs to be addressed. That's so stressful what you're going through. HUGS

[del]

I agree with texas.  Make sure his doctor knows about this.  It does sound like a Grand-Mal seizures.

[boswife]

All i can do is  and say im so awfully sorry you've had to go throught this.  It nearly gave me the shakes reading it.. its awful to say but i think this would have my hubby back to the clinic for D.  I just dont think i could do that more than once.  It just is awful, and im so sorry that one of us has had to go through it.  I sure hope you find out the reason for it and get it stoped once and for all.  another  with you right in the middle!!! 

[looneytunes]

Thanks all for being out there.  Don't know what we'd do without each other. 

Yes, his neph is aware of the incidents.  The first one was a few months ago and he was actually air lifted to a regional hospital because he went into cardiac arrest.  That was the one where I got to practice my CPR on him.  (TS...I was certified for many years until 2007 and have not been certified since but sure recommend the training for any caregiver of a patient with a life threatening condition...classes are usually available through the Red Cross and a lot of hospitals).  The second one was shortly after the 1st incident and no ER visit, just saline here at home and he came out of it and then lots of rest for the next day or so. 

He has never had a seizure except these three here at home while hooked up.  But, like I said, we were actually taking less fluid off than we normally do (lately it's been 2.5 because that is MY max ever since the 1st seizure).  And, this happened very early in the treatment with a higher BP to start with which stayed well within normal range until the crash.  So I have to wonder if the seizure caused the low BP or the low BP caused the seizure.   I also wonder, (TS), if the response to the saline was real or just coming out of the seizure at that time. 

We talked to our nurse today and she suggested increasing his dry weight again and said it would be better for him to carry a little fluid than to have another incident.  Our neph felt that the other two incidents were also related to pulling fluid and so there really hasn't been any other investigation. 
I can't disagree about the cause when his weight is so unstable.  He will binge on junk food for weeks and then go on almost nothing for a while because he is gaining weight.  Then it's back to the junk food. 

So I really don't know much more.  Other than back to the waiting game.    

[Des]

Oh My, You poor thing. I can just immagine how scared you must have been. 

For this reason hubby will never ever allow me to do any kind of home therapy - not even PD. He will crack and will never recover from the shock.

Now I think you are worrying more and more and I bet you you don't sleep so well. My friend, I  am thinking of you and I hope you can get to the bottom of this. Sorry that I don't have sound advise but just know I am here.

 

[texasstyle]

Looney from a number of sites I read apparently low BP can cause a seizure but it just so darn hard to tell given he is on the machine & everything that goes along with that. It could be a combonation of things too.

[billybags]

looney, I feel awful, there was me moaning on about this, that and the other to you and you are going through all this. I really feel for both of you. Doing CPR, your a braver person than I, no wonder you are so stressed. I am thinking about you.

[yliebert]

Looney,
Ask the Dr. if they can hospitalize him, then try to reproduce the seizures in a controlled environment. That way they could sort out what came first, the chicken or the egg. Also, you could then threaten to leave him there if he does not promise to become more compliant!
YL

[looneytunes]

yliebert...this has been suggested and will probably happen at some point.  It just seems like it takes a REAL scare to get more investigation done. (I'm not sure that it's me that the scare has to happen to in this....  )  As far as his compliance with the diet, that's a losing battle.  He is the epitome of stubborn and it just causes friction between us so I gave up.  If he wants to eat his way into less quality of life, then I have to accept that one.  Even though it may cause more problems for me in the long run. 

Not brave, BB, just doing what I was trained to do.  And SO thankful it worked.  All 3 times this has happened have scared the s&^@ out of me.  I pray it doesn't happen again but realize it might and that scares me too.  And...you moan all you need to, that's what I'm doing here.     When times get tough, we lean on each other.   

Thanks to all of you, I keep my sanity, (I think) and go on each day.  And thank God for each and every one of you.   

[Poppylicious]

Gosh looney, that's awful.  It's also one reason why I prefer Blokey being anywhere other than at home for his dialysis.  Yes, it makes me selfish, but I truly don't think I could cope with things like that. 

I hope they get to the bottom of it; it must be very irksome and scary for you every single time he's hooked up!

Many *huggles* my lovely. 

[wackywixo]

Hi im sherri,i feel for you, omy husband is sick to chronic kidney disease also,he also goes to dialysis,a couple of weeks ago he got real weak was falling down-and he was jerking his arms-legs,i called ambulance-when he got to er his heart stopped twice--was put  on breathing tube for a few days. now hes in a nursing home again.when he went through that i think i lost 10 years of my life also.it is really hard having a sick husband,our life sure changes dont it?

[looneytunes]

It surely does, Wacky. 

Poppy, hubby has offered to go back to the clinic but with slower gentler dialysis, he will get better results.  So, though I would love to say YES...PLEASE GO (in a shouting voice) I just can't bear to see him go downhill like he did the last time he was going to the clinic for D.  He has never gotten adequate clearance (even with 4.5 hours 3 x weekly) at the clinic and he does here at home with 4 hours 5 - 6 days a week.   

Hugs back to all of you!   

[del]

have tyhey even sugested doing MRI, CT scan and other tests to rule out some things that could case this.  May not even be related to dialysis .

[texasstyle]

You know that you are not alone with your frustrations about the diet. And boy oh boy, it is frustrating! To us at least. We can't make them do it butyou'd think they'd at least try. It very very tolook the other way. Everyday I feel like something  bad is going to happen. I hate living that way. (((hugs)))

[looneytunes]

Me TOO!     I just know that shoe is going to fall again at some point...I just don't know when. 

 

[looneytunes]

Well, the shoe didn't stay on too long.  I took hubby on another fast ride to the Regional Hospital on 3-19.  Another round of sepsis.    He got out today but we will have to continue the antibiotics for another 2 weeks.  After 4 rounds of this bug, I have about got the routine down.  He woke me after being in bed about an hour with chills and fever.  So...off we went. While there he developed paralytic ileus (paralysis of the intestinal tract) and was given Reglan which did work though with all the bad publicity about it, I was pretty concerned for him.    So, now the shoe is back on, hopefully for a while this time.   

[willowtreewren]

 

Oh, Looney. I want to fill the well of strength that you have been drawing from....

 

Aleta

[boswife]

looney, my prayers for strength go out to you.  Oh lord do i feel bad     I know there the patient but it takes its very emotional toll on us too.  Hope for goodness and health to come your way...

[YLGuy]

Wow, at a loss for words. So much to handle. 

[MooseMom]

Oh my...I don't know how I missed this thread.  I don't have anything to offer, but know that I am thinking of you, and if there is anything at all that you think we can do to help you, please let us know.  In the meantime, just keep talking to us.

[Des]

Darnit  tell him to keep his shoes on!!

Thinking of you

[billybags]

looney , when does all this stop. I, like you are living on the edge. So much to think about, so much to do. I find it really getting me down lately.I have no idea how you are coping, but cope you do because we love them. I would really hate the shoe to be on my foot. I will think about you when I break out the wine and ciggs to-night.

[lmunchkin]

Looney, so sorry you are dealing with this! We are here for you & both are in our thoughts & prayers. You hear alot of people in the Medical profession say that it is harder on the caregivers, to some point, I believe that is true!  But I know that in their hearts, they so appreciate us, even though they may not say it!