Just sharing

[kitkatz]

Oh my gosh!   Prayers to you both!   


I am running screaming into the street for you all!   AUUUUGGGHHH!

[The Wife]

And now he's home. 

I pulled out the bags and a regular dialysis session is soon to be in the works.  I hear the clamps.  His heartrate is still too high, and he's exhausted.  Mind you, so am I. 

It amazes me, this journey that we are all on, where one moment, one can be quietly lying on their bed and the next, "a bass drum" beats  hard and fast on a chest, leaving us thinking a heart attack is taking place.  Or fluid is in the lungs, or blood pressure is too low, or all the things that dialysis patients experience.   

He didn't have a heart attack.  And he didn't think he was going to last for the paramedics.  Neither did I.  The paramedics said that he is a medical students nightmare.   With everything that's wrong with him, they don't know what to do.  Fix one thing, something else go out.  Fix that, another problem occurs.  

At least he has a pacemaker.  The medical staff said it was an unusual reaction for a pacemaker, but it did its job.  Apparently, he has the cadallac version.  That sweetheart drove real well today.  Took him around the corners at high speed, but it stayed the course.

Everything is out of whack, and they've been challanged to find balanc, prior to the quinine. 
Since his quinine reaction, the nurses have passed messages to stop and start different medications.  I will call the clinic tomorrow, or they'll call us because his neph was at the hospital and released him and is aware of what's taking place.  I'll continue to keep tracking of everything, and on Thursday, we will both go to meet with the team.

In the meantime, I'm going to go and pour myself a nice cup of herbal chi tea, mix in a spoon of honey, sit back, take a long slow deep breath, and exhale gratitude for this moment, and for all of you.

Love...

[kitkatz]

It sounds like you need some thing stronger than chai tea.   FlipBob would have put Vodka in it.

[breezysummerday]

I'm glad your home now
( kisses for waynes' forehead)
Have your tea and don't stay up all
night worrying....too hard....you
need some rest too.

Me, I would be listening to every breath
Ray takes and counting the time between each
one, then taking his blood pressure, then his sugar,
and if I had a bloody ekg machine, I'd be hooking him up to
that too.  Then Ray would ask what the hell are you doing.
Then I would say....'nothing'

Take care Joie, want updates.....deb

[willieandwinnie]

  The Wife. I am so sorry. I will pray that everything will start to get better. I'll be thinking of you. 

[pelagia]

I hope you are sleeping as I am typing.  and I hope today is better. 

[The Wife]

Wayne had a good night.  BP is better, heart rate still a bit high.  He slept well and I only woke up once in the night. 

I'm really tired.

At the hospital, they mentioned that Wayne's kidneys have changed.  Twice.  What does this mean?

The day before, one of the nurses told me that his creatine has increased since November.  Something about urea too.     

Hopefully on Thursday, we'll get a better explanation that will lead to better understanding. 

I will keep all of you posted. 

Between his liver, his kidney's, and his heart, I'm starting to get confused.  I told the nurse I need training.

Or maybe I just need a shot of vodka.   Don't drink the stuff but I could always start. 

Thanks again everyone.   

[paris]

I think we need to get out the glasses and pour    a little for all of us.   You two have had quite an adventure.  Hopefully you can both rest today.   Thursday may give you a better view of what all is happening.   I'll keep you both in my thoughts and will look forward to news on Thursday.    You are an incredible caregiver.  We all wish we had someone like you.    

[LightLizard]

things are a little calmer today. we're supposed to go to the hospital tomorrow to see the dialysis team to take a looksee at what kind of changes have occurred since the re-programming of my baxter machine. that little adjustment, plus the inclusion of quinine, one small pill, seems to have been enough to throw stuff out of whack pretty good. one of the paramedics wanted to make a list of all my issues and symptoms. we didn't get half-way finished the list before he had to say, 'man, you are a med student's worst nightmare!' nice to know i still make a difference to someone...heehee
he asked me what being on home dialysis was like. i said it was like being a drunk juggler on a tightrope in an earthquake. sometimes, all you can do is grab your balls and hang on.
it looks like, so far, that thanks (again) to my  incredible wife, i just might make it to sixty!
 

thanks, all of you for your support of my partner through this. too few understand this journey, and too many are on it.
bless you all!

 

[pelagia]

he asked me what being on home dialysis was like. i said it was like being a drunk juggler on a tightrope in an earthquake. sometimes, all you can do is grab your balls and hang on.

You pretty much got the essence of it with that one!  I am happy to hear that you are feeling a little better.

[paris]

Good to see you post LL.    We love both of you and hate that things have been so rough lately.  "The Wife" helps all of us so much with her calm words.  I hope we are of some help to her in return.   You two make a good team.   

[The Wife]

Where do I start?  I know, I'll start with me. 

I've never had a bubblebath with candlelight at 2:30 in the afternoon, but yesterday, that's exactly what I did.  Afterward, I slept for two hours, and last night, slept right through the night until a decent time this morning as nothing woke me up. 

Wayne didn't cramp!    And I'd like to celebrate this for a moment, if that's okay.
 

His blood pressure is a bit low and his heart rate is still too high but we had a good chat with the team.  His doctor admited he was wrong when he changed some things, like his dialysis, but also told us that it's hard to find balance when you're dealing with the liver, kidney's and heart. 

We're going to talk to them again on Monday, and get this figured out...

I also asked about the wait for the heart surgery.  Is it because of the waitlist or is it because of the risk factor.  It's because of the risk factor. 

Once I knew that, I asked "When it gets to the critical moment, how much time does he have before I start worryng if he's not going to make it in time for surgery."  When the symtoms appear, they usually book the surgery in a week, or in that month. 

The next thing I asked was this:  "So, I'm to watch for shortness of breath, chest pain, or passing out - he gets short of breath, and the other day, he had chest pain.  How am I supposed to know if it's fluid in the lungs or his heart?"

Answer:  Wait for five or ten minutes.  If it doesn't settle when he's resting or lasts for an hour, it's time to do something. 

We talked about neropathy, osteoporis, vasculitus, and threw in a few jokes. 

I feel much better getting some of my answers answered, and better, knowing they really are doing everything they can and will continue to keep close tabs on Wayne.

Thanks everyone. 

Have a beautiful day.

 

[monrein]

I'm so happy that you're feeling better about Wayne's doctor TW.  It's awful thinking that they don't care or that our system is shortchanging us.  I've been extremely satisfied with my medical people for the most part and this whole business would be too much to take if I felt differently.  Thank goodness you got them to listen and felt heard too.
I hope things continue on this calmer track and your afternoon bath, nap and a full night's sleep sounded wonderful.

[paris]

Bubble bath, candles and in the middle of the afternoon!  How decadent!!  And you absolutely deserved every minute of it.   Glad to hear the doctor visit answered some of you big questions.    It is nice to hear that you had a good nights sleep and today is better.   Be good to yourself more often   

[pelagia]

It's so important to know what to ask and to feel empowered to ask.  For me, that's one of the best thing about IHD.  We can give each other the support we need. It's always difficult with medical professionals because some of them don't know how to listen and most don't really have the time to contemplate what it is you need to know.  I am happy to hear that your docs were listening and taking the time to give you answers.

As far as the bath and the candles and the sleep - sounds like you got "just what the doctor ordered!"  I am glad to hear that you are feeling better.  You can't be there for Wayne if you are worn to a frazzle, now can you!?

And, finally, I hope Wayne is having a better day, and I hope tomorrow is better than today.  One day at a time to a new, better, place. 

[breezysummerday]

     NO CRAMPING!!   

That's been going on too long.
I am so happy that a treatment plan is coming around.
Do you keep a journal?  I have one for Ray.  Helps to keep
track of his disease, especially helpful to see if a pattern is developing.

Have many more nights of peacefullness, you and Wayne....debs

   
(oops, left out some little happy dancers, hence the edit)
   

[The Wife]

With Clinic days always the same as Baxter delivery days, I hadn't seen Wayne's neph since he started PD.   He doesn't respond to emails or phone calls and this has been part of my frustration. I'm grateful that the doc took time, outside of his regular scheduled time, and spent quite a bit of time with us. 

I forgot to mention that Wayne is dehydrated.  Part of this was caused from using a 7.5 as a last bag, per their orders.  When you add the heart problems to the mixture, quinine, and not enough fluid in him, it's no wonder his heart reacted and the pacemaker did what it did. 

I learned a lot today and I'm still processing and coming to better understandings.  Through all of this, I've decided to start keeping a journal.  I can't believe I never thought of this before.  Then again, I'm not surprised.  It's another job to add to my list.  Sometimes, I'm too tired to even read my list.  But you know what, this is my life.  The more I know, the better I can help Wayne. 

While I'm helping him, I need to make sure I help myself.  We all do. 

And one of my new ways is going to be by taking candlelit baths on the days when afternoons work the best.   I'm just not going to wait until there's another crisis.   



 

[kitkatz]

I journal here on the board through posts I write, but a good journal time is hard to beat.  Go for it.

[The Wife]

I guess you could say I journal here.  Not so much numbers, but things I can look back on if I need information, such as dates.  It's why I like to keep what I write in one thread. 

There was one thing the doctor said that I need to record.  When we talked about quinine and I told him that it has been banned in the States, he said, "Quinine can cause heart arythmia's." 

I wanted to ask him why he would prescribe such a drug, knowing full well that Wayne has this problem but I decided to let it go.  If I were to answer for him, I would say that he was trying to help Wayne with the cramps and the only drug he could do it with, was quinine, with a hope Wayne wouldn't react.  But he did.  It was beyond stressful but Wayne is alive, and right now, that's more important than challanging a man who is trying to find balance for my partners body.  When I asked about the pain from his neropathy, he told us there is a drug but the side effects wouldn't be good for Wayne and DIDN'T write up a prescription.   

I think I'll just sit here for awhile and breathe....

[Wenchie58]

Breathing is a habit we should all  take part in often!
I think about you all the time....you're one together
lady!!

[jessup]

I don't have much to say mate but I do send you both lots of love
Take care
Here's some flowers to smell next time you have a bubble bath
 

[The Wife]

Bloop pressure and heart rate are now good.  And it's the third night without cramping.

 

[kitkatz]

This sounds like an upturn.   

[jessup]

 
 

[willieandwinnie]

  The Wife. I am so happy to hear that.