Just sharing

[The Wife]

He said his cramps were so bad he felt like his foot was breaking in half.  He had to take the pill.  I think they need to readjust the machine again.  

Something is wrong with a system that takes the caregivers concerns out on the patient.  Very very wrong.  If he dies from their actions, there is going to be hell to pay.    

Warrior woman rises.

[The Wife]

He won't go.  Stubborn as a moose, I tell ya.  Says if he dies, good.  He's tired of this. 

He took the pill at 2 am and is hoping it will pass through.  He already has a pacemaker...

Some things are out of my control.  If he passes out, I'm calling the ambulance. 

[The Wife]

The cold is passing....

I'll keep a close eye on him. 

It's tough being in the middle.  Can't call because he insists I don't.  Can't talk to the medical staff because they get all defensive. 

What a life.

[monrein]

TW, I still  think you should still call them and let them know how Wayne has reacted to the one pill.  Tell them you feel angry (because he's reacted badly before), tell them you feel unheard even though they say they're listening and tell them that above all you feel worried about what might happen to Wayne.
I know it feels as if they punish you when you complain but I don't think that's actually what's happening.  It's more likely that they don't really know what to do either but chest pains they have to take seriously.  
Ask if tonic water (much less quinine, like barely any) would be a better option.

Tell Wayne that if something happens to him you're left holding the pieces and you can't live with that.  It's not fair for him to leave you in this spot although I understand for sure his reluctance to call or let you call.  Helpless is just the worst feeling.  I'm sending you hugs and breathing reminders and please know that whatever you decide to do, we're here for you.   

[The Wife]

Thanks Monrein. 

He says the inadvertantly take it out on him when I call.  Says they'll do anything just to shut me up becasue they don't like feeling critized.   Is this about their feelings or his health?  I think you're right about them not knowing what to do.  I was thinking about calling the social worker but she's got to be the most useless person there.  I think I'll give it a bit of time....things seem to be easing.  And then I'll talk to Wayne again.  He has to let them know about this reaction. 

[The Wife]

I can understand his reluctancy.  It seems that every time he goes in when it's not a scheduled appointment, they drag him through the mill, or put him in the hospital, which he absolutely hates.  Or give him more drugs that make him sick, etc. 

As a caregiver and wife, I just don't know what to do sometimes.  Do I upset him and cause him more stress by doing what I feel needs to be done, or do I step back and allow him to make his own decisions?

When he's in a better place to hear me, I will share my concerns, and my feelings about what it's like to be a caregiver.  And about how scared I am when I feel I can't do anything to help.

[The Wife]

I'm going to call the clinic.  As his caregiver, I need to do this. 

[breezysummerday]

Every documentation can lead to something.

Good going Joie, give them a call.


Arghhhh....what a way to start the morning

[The Wife]

I called.  They're on it.  The nurse is going to see if his neph is on the ward.  I also informed her that quinine has been pulled in the States.  They didn't know this.  She said he's lost a lot of weight since June and has now put that he's had a reaction to quinine on the computer.  They're going to call back.

Thanks for being here.  I'll get back...

[The Wife]

The nurse can't find the doc.  She's faxing his office.  Told me to get him to stop taking this other prescription and just take tums.  Figure that's what's causing his nausea.  Told me the doc didn't write anything on his chart about gout either.  OH, that's nice.       apparently they don't record everything.   No wonder the nurses are confused.  The doc doesn't let them in on everything.  Is this to cover his ass?  His heart was low, now high...they're not saying what to do....took his heart pill, it's slowly going back to normal.  I'm keeping a close eye on him and taking his blood pressure, and checking his pulse.  The nurse also told me his sodium level is too low and he needs to cut back on fluids.  The nutritionist is going to call me.  He's gotten worse since they had him change numbers on the machine.  The nurse said she doesn't want to adjust it back to what it was...try other things first.  Yep, keep trying until you kill him.

I think when you have a bad liver from hep C, kidney failure, and a bad heart, they really don't know what to do.  Pulling straws, pulling hair... 

Don't mind me.  I'm a bit stressed but thankfully, all of you understand what this is like. 

Happy Monday everyone.

[kidney4traci]

TW, my my what a time you are having.  You dont need all this stress, nor does Wayne.  I feel for you.  AS caregiver you have to stay on top of things, either you or the pt.  You can't rely on the drs to know everything.  I noticed that in the hospital.  I had to remind drs I was on a risk protocol, and also had to prevent a nurse from giving me insulin.  Luckily I was lucid and knew my own numbers cuz she got it mixed up when the teck did my husbands blood sugar and they wrote that on my chart!  I don't have high BS, he does...  any way, my heart is with you.  Many hugs and hope you all pull through this soon. 

[The Wife]

You got that right.  They don't know everything.  I called his cardiologist's office.  Receptionist said to go and see his family doc.  Right. If the specialists don't know what to do, how is a gp?  Wayne just wants to sleep it off.  There seems to be a slow improvement so I'll respect his wishes.  I can understand not wanting to wait in ER for twelve hours.   He's so tired of this.

I guess today is just going to be one of those days. 

I'm going to go and take out the garbage now.  Breathe in some fresh air and stand under the blue sky for a couple of minutes. 

Thanks for the support everyone.  It's appreciated.   

Hugs to all of you...

[Wenchie58]

TW--
   Just came on line and reading your posts of the day....didn't realize until the last one that my jaw was hurting from clenching my teeth!  What a day you have been having.  Praying that all works out for you and Wayne.....that blue sky....enjoy it.

[The Wife]

As I was reading your post Wenchie, I realized I was clenching my jaw! 

Well, he's up, gone to the bathroom a couple of times.  Blood pressure and heart rate are still slowly improving but they're improving.  It seems to be moving through...

Scary stuff!

DO NOT TAKE QUININE!!!

No wonder he doesn't want to tell them when he's having problems.  When he does, they prescribe something like this.

We were just wondering if there's an FDA here in Canada.  Someone needs to be notified and I doubt the doctors will do it. 

Okay...let's breathe...

[The Wife]

Ok.  Things are better.  He's up, he's eaten....and I've spent nearly two hours today on the phone with a couple of women from the dialysis team.  They noticed that things changed when he had his pacemaker implanted.  Now they need to figure out the right amount of dialysis but we're working together. 

Ok.  I'll still be a caregiver.  They told me I was doing a really good job. 

Now I can really breathe.

Thank you for being here and helping me get through this day.

 

[kitkatz]

I was already to go out and run in the street screaming for you, since you cannot do it yourself!   Glad things are showing some light today!

[pelagia]

It seems that your days are getting tougher.  I know you must be consumed by worry sometimes.  Try to take it a day at a time (although maybe you can toss some days like this one)  You are doing the right thing by keeping on top of it.   

Unfortunately, when you think of how many diseases there are, how many drugs there are and how many possible side effects to drugs there are, you realize that any sick person is actually an experiment.  Two years ago my dad was seeing four different doctors at the same time, taking all kinds of drugs for all different symptoms and not getting better.  Then he had a stroke and they discovered that he had an infected heart valve and needed a double bypass.  Not a one of them had diagnosed those problems.  I am thankful that he is still alive. 

[The Wife]

I'm glad to hear your dad pulled through that time pelagia.  Geez....four doctors.

You can still go out and scream kitkatz....get rid of some of the stress of the day...

His heartrate and bp still isn't right.  One pill seems to have undone what the pacemaker fixed.  I'm going to call the clinic again tomorrow. 

One of the things the nurse told me is that his urine output has decreased, that they're dealing with three troubled organs, and to chart absolutely everything, from food, fluid intake, urine output, and whatever different pains he's experiencing.  I'm going to be a hound dog with them until they get this figured out.   

Thanks again everyone.  Maybe tomorrow will be a better day.

All we do is take one day at time.  Heck, sometimes, one moment at a time.

[The Wife]

Well, they're listening.  His bp and heartrate still aren't right...called the nurse this morning and the doc finally got back to her.  He's holding back his bp pills, we're charting everything over the next two days, and on Thursday, the doc wants the both of US to come in to the clinic at the hospital and see him.  Usually I can't go to cliinic day as it's always the same day as Baxter's delivery. 

I'd better take tape for my mouth when I talk to the doctor.   

Life is never boring.

Oh, and after ten hours of being hooked up, he was told to do a twin bag exchange which he just finished. 

I'm going to call them every day until they get this figured out and get him feeling better. 

[petey]

I'd better take tape for my mouth when I talk to the doctor.   

Oh, no, Wife -- keep your mouth open.  Say it loud and say it clear.  Say it over if the doc doesn't seem to actually hear what you're saying.  Say it, say it, say it until you know that someone's heard you and is taking action.  You've been right there with Wayne, and you know the signs and symptoms/reactions  he's having.  Right now, you're Wayne's biggest advocate; even if he doesn't admit it, he's probably counting on you to say it.

Usually, I've found that I'm right when it comes to Marvin and his multi-problems / reactions.  Convincing the docs/nurses/techs that I'm right is not always easy.  But I never keep my mouth shut.  To Marvin, I say, "I'm trying to keep you alive because I'd have a helluva time getting up in the morning if you weren't here."  Marvin (though he sometimes shakes his head when I start on a rampage) knows that I'm aggressive with his care/meds/treatments because I love him and need him.  I know the nurses/docs, etc. call me a "bitch" behind my back; I don't care.  This is my husband and my husband's life.  And, besides, I'm usually right in the end, and they know that.

Get ready, Wife.  Arm yourself with the knowledge you have (what you've seen Wayne go through), and fire the questions at them.  Don't settle for their explanations or their care plan until YOU're satisfied that that is what Wayne needs.  Give 'em hell, girl!

[pelagia]

  what Petey said!

[silverhead]

I also make the medical community shake their heads when I arrive, Sharon tells them to talk to me if they want to know her condition, she tells them that the meds mess with her head and she might not state the facts correctly, I'm with her 24/7/365, chart all her records, research all her meds before dispensing them to her and so forth. And I have no problem with "getting in their face" until we are both satisfied with the answers we receive. I must say that I have her general and medical power of Attorney and make sure that those we deal with receive a copy of them when we meet them.
So open your mouth wide and give them hell girl.......

[paris]

Dear friend,  I can only hope the day has gotten a little better.   I wish we were closer than the computer so I could stop by and sit quietly with you.   My prayer today is that you can feel some of the peace you give to us and your heart is filled with our love for you and LL.      

[The Wife]

Wayne was lying on his bed when he called out, "I think my pacemaker is exploding. Call an ambulance." 
I thought he was having a heart attack and said I was calling an ambulance at the same time he told me to.  You know something is going on when Wayne is wanting to go to the hospital!  After I called them, I put my hand over his pacemaker and holy smokes, I thought it was going to pop out of his skin.

Two ambulances, five paramedics, and ekg, and a chest xray, a few hours, and we're still waiting to hear what is going on.  They put on oxygen, have him hooked up to the heart monitor, and the pacemaker people came, took a reading and made some adjustments.  He's still in emergency but I thought I'd come home to pick up his coat and shoes in case they release him tonight.  And to rest my back.  It's killing me.

I took his record book....told them what time he took the quinine, showed how his bp and heart rate changed afterwards, etc....they don't seem to want to talk about this. 

Thanks for all the support!  I'll keep you posted.

Thank you Epoman for creating this site!

 

[pelagia]

   I am so sorry that there are so many problems.  It all sounds so scary.  And yet you sound like you are holding it together and staying sane.  You are an amazing caregiver.  Please keep us posted.  I will hold you both in my heart tonight.