Friday, December 31, 2010

Happy New Year.

Our nurse told us that it's ok to miss a day of dialysis. I've tried hard not to because she had said that missing days may or may not send him back into a pre-dialysis feeling state. Over the Christmas period it's been a bit touch and go with family and spending all hours away from home. I tried to not let dialysis dictate our lives, but the truth is .. dialysis is our Daddy and that's below below average.

Summertime in the boondocks Hawkes Bay is a time where you get random power cuts and we've had a couple of these over the last few weeks. When this happens, if the machine doesn't pick up from where it left off, you pretty much say goodbye to the unused dialysate. It wouldn't be such a big thing if NZ subsidized it, but they don't.

I put Larry on manual bags for 2 days. We were already running low on freeline solo bags because we used alot during training. When we use them we almost always lose a bag whether it be a drain bag or a fluid filled bag. Once connected, the manual cycle is similar to the machine cycle. Drain-Fill-Dwell. Each bag is equipt to drain and fill. The cycle finishes on a drain, so we lose a bag of fluid. Ya' with me?

A few days ago we only used three bags. I can't remember why exactly, but his body told him tenfold that the cycle was not a full transaction. He fell back into that pre-dialysis state we know so well, which enlightens us on how advanced his kidney failure is.

Tomorrow we're making a quick trip to Auckland. He will be doing his dialysis in the car on the road. To avoid losing a bag, the fluid will be left in his peritoneal cavity during the day until it drains him again via the machine Saturday night.

Manual dialysis.
See the goodies on top of the filing cabinet behind him? His medication.
Just his morning ones.

New Years resolution?
To season my body with the spice of good health for a kidney reduction.
Something about LW10 videos blah blah.
Happy 2011.

Tuesday, December 28, 2010

No news.

No news is good news, sometimes.
No news from Immigration is good news. Keeps him here longer.
No news from the hospital is bad news. This delays the cataract surgery.
No news from the SSA is bad news. Hardup-ville isn't an awesome place.
No news from the church is good news. Means there's no issue with payment for dialysate for another month at least.

Larry's weight is creeping up, this is not good news. Perhaps it's the time of the year when it's impossible to go on a diet unless you're insane. Maybe it's the fluid restriction he doesn't stick to. It's probably the 12 months of food he couldn't stomach before dialysis began and it's probably that new Mexican restaurant in town that's not as awesome as Taco Bell.

I'll give him another week to do as he pleases, culinarily speaking, then the reigns will go back on and I'll retrieve the whip from my back pocket. We call this inspiration.

The green dialysate bags pull more fluid off. He has been on a one green and one yellow (normal) regime everynight and his weight continues to esculate. He'll get in trouble from the specialist when he see's the stats after christmas.

116kgs is not good news when his goal weight is 110kgs.

Saturday, December 25, 2010

Early Christmas

I took the tree down 2 days ago and we opened gifts lastnight.

We spent Christmas eve around the warmth of the dialysis cycler that was heating the fluid to temperature.

In my attempt to have christmas early so it can go away faster, it's not working. We still have lunch with family to get through and my family don't understand the four words, 'Don't feed him that'.

It's all very superficial when you've been through an emotional bog for the last 12 months. Bear Grylls on crack would not even have got us out of it.

I'll be glad when it's tomorrow.

Merry New Zealand Christmas.

Friday, December 24, 2010


Eligibility for Publicly Funded Health Services at the Hawkes Bay District Health Board is granted if you are a holder of a work permit that allows a stay of two consecutive years or more.

This is great information to know after the fact.

All he needed was a 2 year work permit. It's too late for that now, the damage has been done.

In other news, Hastings got it's first Mexican restaurant.
It's a breath of fresh air since the place is riddled with below average Asian restaurants.
Larry got his Christmas wish.

Thursday, December 23, 2010

Cataracts and such

There's a 3 month waiting list for cataract surgery in Hawkes Bay. I don't know why, it's a 10 minute operation. My Aunt who lives across the road has been waiting for longer than 3 months so I'm guessing that 3 months is the minimum waiting time. Because Larry is a private patient, he's been bumped up the list and the max waiting time may be a month. I'm selfish. I don't give a pink M&M that there may very well be 1000 people before him who have been waiting years for the operation. We've had a crap year. We're entitled to have Grinch-like tendencies around this time of the year.

No word re: residency.
Disability application is in and pending - this can take up to 3 months too.
Dialysis treatment is going very well.
He's still blind.
He's happy.
All is well.

Merry Christmas.

Tuesday, December 21, 2010

All I want for Christmas.

Dear Santa,
Larry would like a kidney, residency and his eye sight.
I'd like a babysitter, sleep and snow.
Much Obliged.
From Us.

There will be no christmas shopping this year. I'll gift wrap his rejuvinating health because that's the best christmas present of all, still even better than the iPad.

And to my family. Don't get him chocolates, he's not allowed them .. or slushies and don't give it behind my back or I'll drop him off at your house with the cycler for a week. If you really want to get him something, he needs another box of Primapore, 5mm micropore and 2 5mls syringes with needles all available from the local pharmacy.

Thank you kindly.

Sunday, December 19, 2010

Up close and personal with the dialysis cycler.

There's a few reasons why the cycler machine will beep in the middle of the night. One being because it's broken and two because there's a kink in the line. This can range from sleeping on it wrong to fibrin in the tubes that requires tapping to get fluid flowing again. We keep running into snags with the latter. It beeps alot because the tubing is wrapped about Larry's body a couple of times. He's well aware that he should limit his movement to his back and one side, but when you're hibernating and slowly dehydrating from treatment it's really the last thing on your mind. So when it beeps, I have no choice but to drag myself out of bed to check error messages.

Three beeps means If you just move around you'll work out the kinks and I'll shut up.
Six beeps means I told you to move around and work out the kinks.
Constant beeps mean, You didn't hear me the first time mofo, get the hell up.

My sleeping pills don't work, not even when I take two AND a Wilma Flintstone vitamin, they just don't work. I hear the beeping when it's not beeping.

Once the cataract surgery has been done Larry will be trained to disconnect himself in the mornings.
It's a start.

Friday, December 17, 2010


Pressure in his eyes have dropped back to normal. Cataracts are a go.
The hospital have complained, again, that they won't touch him until we pay up front or agree to a payment schedule.

How nice of them.
I like how their exact words are, "We won't touch him until ...".

Cataract surgery will be for his right eye only. There's alot more work needed to be done on the left. Saveable, but not promising as far as vision is concerned.

Thursday, December 16, 2010

How to be optimistic.

The Doctors appointment was as expected. All is well. Progress is good. If it weren't for the fact that the Doctor wanted to see Larry's ankles, it would have been 100% a pointless trip that cost $200 in fuel alone because NZ gas is now $2 a liter ($6USD a gallon), so the trip was only 98% a waste of time and money.

A check up eye appointment tomorrow to see if Larry's eye pressure has gone down after a week of being off of the Maxidex eye drops. A GP appointment for a mini medical after it. It's been a busy week.

His overall health is great. His overall psyche? Better than great. He's not comatose anymore. He can get around. He even braved the kitchen and cooked himself a meal a few nights ago, bacon and eggs. Bless his blind eyes, the 'bacon' was sandwich ham, but that's a start.

Be optimistic, don't you be a grumpy
When the road gets bumpy
Just smile, smile, smile and be happy.

Tuesday, December 14, 2010


Arrived in Auckland yesterday.
Needle training done this morning. Basically how to administer anti-biotics when/if he gets peritonitis.
Doctors appointment this afternoon and then we can hit the road if not today, tomorrow.

Saturday, December 11, 2010

ESRF and Disability.

US Citizens with End Stage Renal Failure automatically qualify for disability through the SSA.

Larry is out of the country and New Zealand doesn't seem to be on the list of countries the SSA will send payments to, but we have started the paperwork through the Pacific area department in Manila, and so far so good.

Fingers crossed.

Friday, December 10, 2010

Inked for Christmas

Sometimes I get inked to remember things.
3 memorable things have happened in my life, I have three inks.
The most recent inkage occured yesterday.

2010 has been a roller coaster year of emotions. The lows outweigh the highs by a tonne, but towards the end of the year things have picked up muchisimo. When Larry was given 12 months to live (this has been voided since dialysis began, btw), our ultimate goal was an LDS Temple sealing. After ten years of marriage, we fulfilled that in July and that was the inspiration for the ink.

A painful, permanent and discreet momento that I'll have him for forever.

Kanji - Eternity

It's ok, my Mum shook her head and told me I was an idiot too.

Wednesday, December 8, 2010

Eye Appointment

Pressure in his eye was too high. Doctors error, which he didn't take credit for. Maxidex is a steroid that helps with inflammation in the eye after surgery. We were only supposed to use it on ONE eye for a week after laser surgery. The prescription said to use on BOTH eyes until finished, and there were three bottles. The side effect of long term Maxidex use? High eye pressure and blindness.
Good one.

The right eye is doing great. No blood leaks and apart from the cataract and high pressure, there is nothing wrong with it. Saveable.

The left eye is not doing so great. There are obvious blisters at the front. This is from oil, that is holding the eye in place, leaking. A blood clot in the back of the eye that has more or less scabbed over is blocking the retina and even if he used the hubble telescope, the doctor would not have been able to see the back of his eye. That needs to be removed. Alot needs to be done on the left eye, but the doc said today that it's pretty much worthless forking out money for it. Any surgery now on the left eye is going to be purely cosmetic. Minimal vision, but he won't look like a Klingon resides in his eye anymore.

His eye pressure needs to go down in the next two weeks before cataract surgery on the right eye can be done.

Friday appointment with our GP, general check-up.
Back to Auckland next week for needle training and a check-up with the renal specialist.
Then Christmas.

He's still with me.
Best Christmas present ever.
I'd prefer him over an iPad anyday.

Monday, December 6, 2010

Stitches out.

A step closer to independance today when the stitches were removed from the wounds from the tunnel line removal surgery 10 days ago. After 2 months of half showers and sponge baths, he can finally shower like a normal human.

This is good news.

As much as the dialysis cycler machine is a life saver, it's also an abomination. It beeps all hours of the night because the patient has selective hearing.

Weight is 115.9kgs.
Not a good weight.
It's not fluid weight, it's food weight. I can only give him death threats for so long before he eventually stops listening.

Oh well.

Friday, December 3, 2010

Non-Resident hostile.

The Hawkes Bay Hospital won't touch Larry as far as dialysis is concerned. Should he contract peritonitis, we'd have to wait a couple of days to get anti-biotics from Auckland to take care of it, anti biotics that need to be injected directly into the dialysis bags. If we even have a question we've been told the Hawkes Bay Hospital won't help us out because of the non-resident situation.

Awesome right?

We pay for all our hospital visits, hundreds sometimes thousands at a time. We've appreciated the support some doctors have offered, but to be told we can't even ask a question is pretty pathetic.

With the amount of people on dialysis, I don't know why this backwards country hasn't moved up with the Jones' yet and expanded resources.

Wednesday, December 1, 2010

Going dry.

Over the span of 10 hours, the dialysis machine cycles through 3 steps. Drain, Fill, Dwell. There is an initial drain on first hook up, which drains the fluid that has been sitting in the cavity through-out the day. When this is done it fills with 2 liters of fluid from the 12 liter bags that will pump through him during the night. The dwell period is around 1 hour 30 minutes. It repeats during the night for 10 hours then he wakes up in the morning and holds 2 liters of fluid during the day.

It wasn't pulling off as much fluid on the initial drain. It was getting less and less and his weight wasn't changing in the morning at all.

Going dry is removing the last dwell from the cycle where he walks around with 2 liters of fluid all day. Instead of ending with a fill, it ends with a drain. I don't know how different it feels physically, if it does at all, but his weight is 112.9kgs.

All very boring.
That is all.

Summer part 2

Nessa envisioned this shoot with my nephew Ellis. They pulled it all together very well. Hubs was supposed to be in it, but got stage fright...