Just sharing

[monrein]

Hi TW.  I too am Canadian and the situation you describe sounds very bizarre to me.  I would have a tough time accepting that answer and I would become a very squeaky wheel.  I'd contact my Member of Parliament, or a newspaper or television reporter, a social worker to advocate for me, I'd change doctors if necessary.  This is just my opinion but I don't think that acceptance is the best course in this case.  Even if you had to go somewhere else in your province for the surgery, waiting for cardiac failure to actually happen sounds like incompetence to me unless there are other details that I've missed.

[The Wife]

I don't know what province you're in Monrein; in this province, the waitlists are quite long.  I will ask questions.  You mentioned cardiac arrest. i didn't say they would wait until he was in cardiac arrest but you raise a good point.  It leads me needing to ask this question: When my partner starts getting dizzy or passes out, what exactly does this mean?" When he had his pacemaker inserted, he first had dizziness.  Eventually he started blacking out.  He wasn't in cardiac arrest but I guess when you're blacking out, it's not far away.  The pacemaker situation happened so quickly, we didn't have time to prepare ahead.  It took 28 hours from the time they discovered he needed a pacemaker until the time it was inserted.  The surgeon had to stay overtime and get my partner in that night.  They couldn't wait any longer.

For some reason, this seems the same.  If they wait until the last moment and there's no operating room, then what? 

I'll need to make a list of questions.

As far as incompetence goes, this does exist.
 
In the meantime, tomorrow is a brand new year.   

Happy New Year Everyone.

[The Wife]

Acceptance means not being in denial about how things are.  Acceptance of something doesn't mean you don't take action. 

Just wanted to make that clear.

[monrein]

I really hope TW that you don't think I'm suggesting you're in denial.  Not at all.  There's also a difference between cardiac arrest and heart failure.  My thinking is simply that if there's something that can be done, it ought to be done.  If there isn't then acceptance is absolutely essential and there's no question that you and LL have had to accept a whole lot of downturns in your present situation.

I live in Toronto, Ontario and wait lists are of course an issue. 

I enclose this link as a starting point (not that I think Wikipedia is the most trusted source of info) about heart failure.

http://en.wikipedia.org/wiki/Heart_failure
  and a Happy New Year. 

[The Wife]

Not at all Monrein.  I've had the experience of others not understanding what I meant by acceptance in the past.  That's why I clarified.  Just to be sure.  I agree with you, if somethng can be done, it should be.  The problem is the doctors don't talk to me.  I even wrote his kidney doctor an email and told him about my concerns in regards to LL's heart.  He didn't respond to me but did tell LL I was right when he had his three month meeting.  I wish they'd realize that I'm a valuable part of their medical team.  I live with him, take care of him, and know when somethng is off. 

Thanks for the link.  I'll check it out.

Oh, and it is the first day of the year.

Let's all have a good one!

[The Wife]

When LL had a reaction to the interferon for the Hep C and nearly died from a gut bleed on the sixth week of a year long treatment, they stopped it.  For months they pushed the drug but when they discovered that he's someone who can't take it, they stopped talking about Hep C.   What was once so important to them just disappeared and now we're left on our own.

When his heart rate dropped in half, he called the home dialysis unit in the hospital to ask if he should cut his heart pill in half.  They thought that was a good idea but it kept dropping, even after he weaned himself off the drug per their orders.  When I called back on the third or forth time and told one nurse his heart rate was still dropping, the nurse told me that athletes often have a lowered heart rate.  Hello?  Forget about calling his doctor.  He doesn't call back...you have to go through the nurse.

When we've brought up his leg pain and inability to walk much, they don't know.  When they did an echo, they didn't look closely enough.  It wasn't until his heart rate dropped that they discovered he needs his aortic valve replaced.  I'm not a doctor but if you're doing tests to check out someone's heart, shouldn't you look closely at the results?

When LL asked his doc about how Hep C patients need to take interferon before a transplant but he can't take it, and that that the transplant drugs would flare up his Hep C, and it would probably kill him, his doc said, "You'd think so."

When LL asked about his blood pressure, his doc said they really don't know what a dialysis patient's blood pressure should be.

After I voiced my opinion about certain things, LL's fistula quit and they didn't sedate him.  After being tortured, the doctor told him that he was quite tough.  That most people get sedated.  We didn't even know they were going to be repairing it, we thought they were just going to look at it and make another appointment to fix it. Why didn't they tell us that he could be sedated?  More importantly, why didn't they just sedate him?  Was this a cost saving decision or was it because I spoke up to the social worker?

Another time, LL went to meet with his kidney care team, and when his doc showed up, he told LL he was busy, and only had ten minutes. 

Next.

They don't tell us what we need to know unless we ask questions.  Sometimes we don't know what to ask and sometimes we research, and they don't know how to answer.   This can be very frustrating at times.

[The Wife]

The past is over. 

I inhale deeply, exhale, and release.

Today is a new day.  A new year. 

I inhale again. 

As I exhale, I let go of any future worry and allow each moment to bring what I need to walk through whatever takes place.

I breathe and feel this moment of peace.

Ahhhh....

[kitkatz]

I think you and Lola should get together and bash a few medicos heads in this year!   

[The Wife]

 

They say the pen is mightier than the sword.  The pen is the sword.

 

[del]

Hi the wife. I am in Newfoundland and there was a story on the CBC news a couple of nights ago about a man who needed heart surgery.  He was going to have to wait a long time as well. He went to the media.  Guess what he had his heart surgery before Christmas. Maybe you should try going to the media. What part of Canada are you in??  We have really long waiting lists here in  Newfoundland.

[The Wife]

We're in BC. 

I need to talk to my partner and ask him a few questions to clarify exactly what 1- 3 years means.  Does it mean that's when his heart will need the surgery or is 1-3 years the length of the waiting list?   Once I know that, then I can find out why they wait until it's life or death. 

Thanks everyone.  I'm going to make a list of questions and give them to my partner to ask his doctor. 

[The Wife]

I couldn't wait until tomorrow so I asked.  It's one to three years before he needs the surgery and once he becomes short of breath, dizzy, etc, they will do it.  When I asked him about the life or death part, he said he didn't use those words.  I'm sure he did. 

By sharing with all of you, I've come to realize that I'm still not over his pacemaker incident.  That was tramatic for me and I don't want to go through another event like that again.  It wasn't the first sudden twist in this roller coaster ride of illness and it won't be the last.  As much as I would like to know exactly what to expect and when to expect it, and to control it, I can't. 

My mom died of heart failure.  She needed surgery but she wasn't a good candidate for a various of reasons.  I didn't think to ask for a second opinion.  When her kidneys failed, dialysis wasn't mentioned and it didn't cross my mind.  As I look back, I wonder if I could have done more or if it would have been her time no matter what I did or didn't do.

With the recent anniversary of her passing and the recent pacemaker implant and the discovery that an arotic valve replacement will be necessary for my partner, it's no wonder I'm feeling the way I do. I apologize if I've caused any of you stress. 

I need to stay in this moment, and to accept and allow myself to feel what it is I am feeling. 

I need to breathe...

[The Wife]

Told you the pen is the sword.  It slices until we find our truth.

Thank you again.

 

[breezysummerday]

Hi Miss Joie!

My mom passed from heart failure too.  It's been 8 years since her passing and the Holidays are still
not the same.  We used to gather at Mom's house.  Everybody laughing and singing.  My mom and
my aunt taking turns playing the piano and the accordion, family members and friends singing
Christmas carols.  Wonderful memories.  And speaking of accordions....I came across a picture of
a certain someone playing one       Made me smile when I saw it.

I didn't get to spend any quality time with my family this Holiday Season.  Me and my youngest daughter
spend the time suffering from the flu.  Ray made us some chicken soup.  Nice and hot. 
So, I called my grandson and told him I wouldn't be able to see him.  It didn't matter.  He was
chattering so much and so loud on the phone.  I asked him to slow down since my ears hurt from
the flu.  My 'mimi' was reading!       My daughter says it was like he just woke up
one morning and just started to read...everything.  How cool is that!

Please give Wayne a kiss on the cheek from me.  I think about you guys often and am so grateful
for your peaceful thoughts....deborah

[The Wife]

Deborah,

We have something else in common.  Mom's passing in the same year.  I feel at peace with you and fondly remember the joy.  Accordion, eh?  That's amazing. 

I gave Wayne a kiss on the cheek and told him it from you.  He had a really bad couple of nights with the cramping and the kiss helped pick up his sprits.

It's very cool that your mimi is reading!  Can you tell me more about this?

It's a better day today, the rain is hammering everything it touches, and I'm going to have a visit with my grandson. 

Have a great day and when I can, I'll get back here.

 

[The Wife]

Well, you've probably noticed the thread Wayne posted on Off Topic.  Yep, that's us, dusting off the keys, pulling down the drums, getting into the groove again.

Receiving the webcam couldn't have come at a better time.  After two nights of severe cramps, Wayne was ready to pull the plug.  With a future heart surgery in the mix, we weren't feeling very hopeful.  What does this mean in regards to where he is on the transplant list?  Does it mean he won't be eligible for one before he has the heart surgery?  You know the questions.  And if you're like us, you get tired of asking them.

But when the UPS man arrived with a suprise package, we both knew what we had to do.  The books are out, the keys are dusted off, the dishes can wait.  We get to play for an audience again.   

[The Wife]

Which one did she say to press?  I can't remember.

[The Wife]

                       Find beauty in every season.

[The Wife]

Moments pass us by as quickly as starlings in flight.  We can pause and capture the moment or let it slip by, leaving us forever untouched.  Life brings tragedy, pain, and difficulty.  It also brings beauty.  In beauty, we find moments of grace.  These moments, though temporary, endure in our hearts forever.  They carry us through the difficult days, the days when our lives appear to be crashing down before us. 

Whatever you are going through, stop and look around.  Inhale the warmth of a sunny day, the scent of an opened rose, the sparkle of a peacock spreading his feathers, and then remember.  Remember grace.  Remember, nothing remains the same.  Moments string themselves together like beads, contained only by the clasp in our hearts.  We collect plastic, broken, and chipped beads.  We also collect pearls. 

Inhale the scent of the sea, kind words of a stranger, a silent sunset, a gentle rain, a daffodil swaying in the breeze.  Inhale, a moment of grace.






copyright J. Novak

[Yvonne]

  I took this photo on my mobil so it's not very good, but by the time I had rushed home and got my good camera the sun had gone down. It was taken of the life boat house in Selsey West Sussex UK. on about the 29th Dec.2008 just a 10 minute walk from me.

[jessup]

woweeeeeeeeeeeeee
Great to hear from ya mob
looks bloody great
but a bit too cold for me
I'm in the top end of oz
lots of love mates

[The Wife]

Great shot John and Yvonne!  Love the light!

The snow is gone from our freak snow storm and we're back to rain.  That's what our winter's our like.  Rain, rain, and more rain.   I guess that's to be expected.  Even though we live in the city, we're still in a rainforest area.

When I get a chance, I'll see if I can scan some photos from when I was using my 35 mm.  Better camera, nicer shots.  Just not sure how they'll load into photobucket.  They're panoramic instead of your regular 4x6.  Guess I'll just have to test it out and see how it works out.
One day I hope to have a SRL digital.

[The Wife]

Has anyone heard from MyssAnne?

[pelagia]

How are you?  Hope all is going okay.  Are we going to get another one of the performance videos anytime soon. I thought it was great. 

[The Wife]

Hello again.  We're okay.  Dealing with coming to terms with the heart surgery but have spoken to one of the nurses and asked why wait until it's an emergency.  I brought up a lot of points and the kidney doc is going to talk to the cardiologist to see if they can move up the surgery.  He also moved up the echo that he was going to take in the fall to March.

Wayne was having shortage of breath and I asked the nurse how we can tell if it's fluid on the lungs or his heart.  They took a chest x-ray and another ekg.  It was fluid.  After adjusting the machine and the type of bags, he's doing better.  Low energy and still cramping. 

Well, the nurse decided he needed quinine for the cramps.  I guess she talked to his doc.  What gets me is that they prescribed it once before and the medication made him sick.  When told this, the nurse said, "Well, we're going to prescribe it again."   Duh.

It was delivered but he's not taking it and I can't say much because when I do, the medical staff get defensive and take it out on Wayne. 

What's a caregiver to do?

Here's another song we recorded while Wayne had energy.  Enjoy and thanks for asking about us. 


http://www.youtube.com/watch?v=jvJJrwWoTqE&feature=channel_page