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.
Larrys?
Something about LW10 videos blah blah.
Happy 2011.

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.

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.

HBDHB

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.

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.

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.

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.

Cataracts

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.

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.

Auckland

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.

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.

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.

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.

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.

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.

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.

More appointments.

Eye appointment on the 8th. Fingers crossed he'll have his sight back by Christmas. Anyone who can't appreciate my christmas tree, which looks like elves vomited on it, is missing out.

Back to Auckland on the 15th of December. Needle training and a check up on the 16th. We'll leave the same day.

Very hard to believe I'm living with the same person who was knocking on deaths door just 2 months ago. Doctors said confusion and being dellusional are a part of end stage renal failure. Larry doesn't remember much of the last 9 months. He slept most of it.

In 3 months he's had 12 surgeries. 2 more to come.

Happy Sunday.

It's great being home. Dialysis wise, things are moving along nicely. Larry was able to take a walk down the street yesterday and he was awake the whole day. He spent some of the afternoon sitting in the sun. This turned out to be the wrong thing to do. I had to remind him, when he felt like he was about to pass out, that he is on a fluid restriction and that's on top of the near no water in his body post-dialysis. Technically, he's already dehydrated from dialysis and to sit in the sun will near kill him.

He is the worst patient ever because of his selective hearing. There are foods he must not eat, even in moderation and it's important that he not drink over his allowed max a day. It's hard to explain this to my Maori family who fed him pineapple (high potassium, high in fluids) all morning.

On Immigration: We're probably going to need a lawyer. There are two in the family, but neither specialize in Immigration.

Eyes: I hope we can get the cataracts done before Christmas. I will get the ball rolling on that tomorrow.

Overall health: I truly am glad he changed his mind about dialysis in the end. I can't imagine how bad he felt physically, but to think that at the end of September he only had a few weeks to live .. I'm appreciative that he got a clue and change his mind. Dialysis has worked wonders. Drained the life out of us financially, but the price is worth having him here just a little bit longer not to mention having him awake and happy again.

Surgery

The tunnel line was removed today and it was a horrific experience. Once again I'm reconsidering nursing school next year. A usually 30 minute surgery turned into an hour long surgery because of cut blood vessels and an artery. These needed to be isolated and tied shut, which took a while.

Larry said it was more painful than the line going in. I already knew this from the curling of his toes and infrequent moans of displeasure. It was the kind of surgery you had to look away from for a moment to spare yourself from passing out and this is the reason I don't have gorey photos to share.

We were supposed to stay in Auckland one more night, but no thanks. It was time to come home, so we snuck away and for that, I'm thankful.

Happy Thanksgiving.
Eating turkey in NZ is an abomination when you have lamb.

2 more days

Surgery tomorrow.
Home on Saturday.
Needle training and a check up in 3 weeks.
After 8 weeks, we're finally going home.

Time to take care of his eyes.

Fibrin

Fibrin is a fibrous protein associated with clotting. It's a mesh like substance that forms over a wound site to basically plug it. I wasn't listening when the nurse explained fibrin, which was a brief two sentence explaination. There was some fibrin in the drainage bag lastnight. To me it looked like stringy snot floating in a bag of pee, because the draining solution is yellow.

Where fibrin and PD is concerned, it's quite normal and nothing major. By the 2nd/3rd drain, it had absorbed completely and there was no trace of it anymore. With dialysis patients, heparin is usually injected into the lines to avoid clotting. In Larry's case, clotting is a bad thing because clotting can cause blood leaks in his eyes and he's on a baby dose of aspirin to keep his blood thin.

One sign of peritonitis is the accumulation of large amounts of fibrin in the PD effluent. Lastnight was the first time I've seen fibrin in the drain bag and the nurse isn't too worried.

I tell you, it never ends.

All is well, all is well.

Possible surgery on Friday. If not, we have the go ahead to go home 'for sanity reasons', so says the Doctor. Everything's crossed at this point for going home.

APD is going well. Larrys weight is currently sitting at 113.2kgs and that's with 2 liters of fluid on board. 1 liter of fluid = 1kg. Without the fluid he is 111kgs - this is his target weight. Good times.

Without going into detail, it seems there may still be some activity from the kidneys.

What I've learned from having a husband near his death bed, and going through all the motions (and emotions) to be his avid supporter, is that everything going on around us is all superficial to what we are living. In the last year or so since we've been in NZ, I've been as sad as I will ever need to be for the rest of my life. We have learned how to build bridges to bypass the issues going on around us to avoid walking through them. We have bigger fish to fry, in other words.

<--- it's kinda been like that.

APD - Night tres

The last thing that occurs during the therapy is his peritoneal cavity fills with 2 liters of the fluid. The first thing that happens after hook up at night is an initial drain of the fluid that has been sitting working it's magic for some 12 hours during the day. The initial drain usually takes about 15-20 minutes. The nurse set the machine to drain a minimum of 1700mls per drain.

Lastnight it took an hour to drain. The machine kept giving the error message Low Drain Volume. We went through the whole manual and troubleshooting book in an attempt to stop the beeps that occured every 2 minutes.

No dice.

I text the nurse sometime before 11pm. Naturally, she didn't respond right away so I did a crash course on the bypass feature on the machine. Turns out this was the right thing to do. Everything fell into place after that and we had no beeps until this morning when the tab from one of the fluid bags had a kink in its tubing. Easily fixed.

The point is, it's all about troubleshooting the machine more than anything else. The machine was only unfriendly because it hadn't met it's draining minimum yet and was unable to pull out anymore fluid.

The machine needs an f9 button.

APD - Night 1

It's been a long night so far. Our nurse did promise that there wouldn't be much sleep involved the first couple of nights and I chose not to believe her, but here I sit at near 4am listening to my new rhythm of life - the hum of the machine that is connected to my husband, his life line.

Turns out the machine doesn't make things easier at all. If he moves and the machine doesn't like it, it beeps and it's beeped twice. Three obnoxiously loud beeps. The machine doesn't care for sleeping children or the hour of the morning. It will still beep.

When the urgency to go to the restroom comes, you need to disconnect and reconnect when done. That process in itself sucks. It sucks more for the wife who has to wake up and do it after 30 minutes of sleep.

I shouldn't murmur, because I believe that joy doesn't come until after the pain. It's just that it's been painful for a while now.

APD

It's a home-away-from-home temporary set up.

We'll be living out of a suitcase for another week.

APD Training - Done.

Training is done. We could go home tomorrow, but we have an appointment on Thursday. We'll be staying till at least Thursday.

Automated Peritoneal Dialysis (APD) training began and ended today. It's very simple. The hard part, compared to the manual method, is putting your faith into a machine that may or may not co-operate. Tonight will be the first time on the machine. It occurs while he sleeps and the machine does everything except hook, unhook or make dinner.

What's the next step you ask?

Getting home.
Getting Immigration sorted. He'll likely be denied, then we appeal.
Get the ball rolling on my US Immigration.
Getting his eyes done so he can work, I can work, and we can be self sustaining financially.
Keeping him well.

Our church has been a huge help, HUGE.

CAPD Training - Day One

It usually takes 6 days to train someone for peritoneal dialysis. This length is based on older patients and not youngins, like ourselves myself. One day was enough, tomorrow will be a refresher and onto APD, the machine. Our nurse understands the urgency to get home and the fact that we're more capable of picking things up better than her normal patients, who are older folk.

I watched a DVD she'd left, on the procedure to drain and fill, several times. I managed it once with her and once without her. We have one more exchange to do tonight, without her, and another in the morning before she arrives. It's all doable.

The biggest issue is the hand washing and unwashed hands and a unsterile environment leaves room for Peritonitis.

Glad to be in our finals days being away from home. Coincidentally it falls on the same week as our car needing a WOF and registration.

It's foolishness not to expect an anticlimax when playing a concerto no matter how close you are to the finis.

Haemo - Done

Today was the last day of haemo dialysis. It's been a long 6 weeks and a well worth it 6 weeks. Peritoneal training begins on Thursday, it will be all up to us.Ready and willing.

Weighing our options

There aren't many left, really.

Since learning of the news that our first two hurdles with NZ immigration have been denied, it's been exhausting trying to figure out what to do next. After NZ deny his residency completely, a lawyer is needed to assist with the appeal and as much as I can't be bothered with it, Larry insists on remaining in New Zealand and fighting it. I appreciate that he has the energy to mentally carry on (pretty sure it's the dialysis), and to a degree back him in his desire to do so.

However, over the last few days I've resigned myself to the fact that it's probably going to be easier for me to get my US Residency reinstated under hardships than it would be to simply keep Larry here.

We are at the mercy of a system that doesn't seem to have a heart .. unless you're a hobbit.

Peritoneal Dialysis

The tenchkoff was flushed today. The nurse was looking out for any leakage, blockage and just making sure it all worked. Works like a charm, good news.

She demostrated the hook and unhook procedures and it is really simple, washing your hands everytime it's needed, which is everytime, is going to be the maker or the breaker of the whole thing.

We have one more haemo treatment then bags begin next Thursday. It's not as complicated as we had imaged it to be and he will only be on manual bags for a couple of days before the machine automates it all.

As I mentioned before, the date to go home keeps changing. That's the one thing that is frustrating at the moment. Every 2 weeks we've been told we'd be home in 2 weeks. Today we were told 2 weeks. I understand that these things shouldn't be rushed, but we NEED to go home for reasons like bills, immigration and to re-marinate ourselves in the sanity that has been in a reduction pot since we got here.

End of Thursday

4pm - Renal Nurse. Traffic got her here at near 5pm. She answered questions we'd gathered over the last two days. On Saturday she will flush the catheter to make sure it's all working properly after 3 weeks of healing. Fingers crossed. The specialist said it will looked out of place, but good.

We also received one month supply of dialysis liquids in 20 boxes that are not going to fit in my car to take home. We'll cross that bridge when we get to it.

The next week will consists of alot of training. I consider ourselves intelligent people, I hope it takes less time than what the nurse feels is necessary.

Larry has caught whatever sick I've had for the last week. It was bound to happen. I am his eye seeing pet and theres no way around not having any contact with him when he is dependant. Glad tomorrow is a free day.

Haemo/PD

Two more treatments of haemo dialysis, then the switch over to peritoneal dialysis. No more driving in Auckland traffic. It is a big deal when you've spent the last year in Bumpkin town, Hawkes Bay where a traffic jam is caused by farmers moving sheep on the main roads. Auckland is nothing near Los Angeles freeway traffic at rush hour.

They keep pushing the date to go home further away. The Renal Specialist wants to see us on the 25th, we hoped to be home by the 24th. How long the education part takes depends on the students. It could take 2 days, it could take 10, all depends on us. It's safe to assume that the tunnel line will come out anytime after the 25th. Below average.

The specialist removed a few drugs from Larrys cocktail.
Awaiting the renal nurse for todays PD training.

Residency

First part of residency has been declined.
The second part of residency, the medical waiver, has also been declined.
We jumped ahead and we're at the appeal process and this is near impossible to do here in Auckland.

I'm pretty fed up with New Zealand at this point and America and I are currently not friends.

We're back at the 'shit-out-of-luck' stage.

Sick. Home. Tired.

We need to go home. We've been here far too long, and despite that it's so essential for us to be here, other things are going on in our life that require us to be home. Like immigration, bills, eye treatments and our car sounds like it's about to blow up. His eye looks worse today than it ever has.

I felt under the weather yesterday and when I woke up sicker than I've ever been this morning, there was no one here to take Larry into dialysis today. We called the clinic to say he wouldn't be in due to the circumstances and they argued that it was life threatening that he go in today, lest they lose out on todays $800 treatment. So I had to get up and take him and sit there for 5 hours, sick.

What I'm saying is, Dialysis takes over your life. I have a love hate relationship with dialysis. I love that it's healing my husband, but I hate that my life is currently built around it. I can't so much as sneeze without consulting the dialysis gods first.

I don't even have time to be sick because of dialysis.

It's one of those days where I keep telling myself that I'm too young to have to go through this. One of those 'feel sorry for myself' days because I'm ill and can't afford to be.

Larry's great, btw.
Weight 112kgs and believe it or not, he needs another haircut.

The Hobbit

What's The Hobbit got to do with Cancer, Kidneys & Immigration?
Maybe everything.

Recently, New Zealand lost it's dignity, thanks to the Prime Minister -John Key, who fought for a deal to have the movie filmed on location in NZ. Laws were changed to gratify the minds of the powers-that-be. No, not the sovereign. Warner Brothers.

Employment laws were changed to bold the difference between employee and contractor. Now workers in the film industry don't have the right to take action for unfair dismissals, en masse, because now they're contractors and not employees.

John was nimble, John was quick.

At the snap of his fingers, a law was changed to cater to a multi-million (maybe trillion/billion/fagillion) dollar American studio. That's awesome.

My husband just wants Residency.
That's all.

Once again, democracy is hindrance.
The funny part is ... Larry is in the film industry. Had he applied for work in NZ based on his career alone, Residency would not have been a problem.

He has two things on his side.
Married to a citizen and his career.
He has two things against him.
His hostile kidneys.

PD Training

To commence on the 11th and will end on the 23rd. Home on the 24th.
3 more weeks of haemo dialysis.
Haemo Dialysis works wonders.

Comparing his health from a month ago till now, I can honestly say he was destined for downhill with a first class ticket had he not changed his mind. Now he's just a commoner in coach and there's nothing wrong with coach.

His weight on Tuesday was 113.4kgs.
Blood pressure has been up for the last week. Advised to take his blood pressure pills after dialysis on D-days, not sure if that makes a difference.

Getting alot of mixed answers with medical personnel. It gets confusing, but all I know it we'll be home by the end of the month. Something to look forward to.

Eyes

A few queries re: his eyes over the last day.

Dialysis removes toxins, this helps his health overall, including his eyes. He still can't see detail due to cataracts, but his vision has improved some over the last week.

When we are back in Hawkes Bay permanently, we'll be looking into the next step on getting his eyes done, at least the right eye. Fingers crossed by Christmas, but probably the new year. The left eye still looks mutant. The redness has gone from it, but the x-files buldge look is still there and looks inflamed somedays and not so much other days.

Overall feeling?
Fantastic.

Protein has been introduced back into his diet and so far so good.

Good progressions

Our Renal Specialist visited the dialysis clinic this morning and was happy with Larry's progress post surgeries. The tenchkoff surgeon is happy for him to start peritoneal dialysis asap, but the Renal Nurses - who have more experience with this - prefer him to wait the 3 - 4 weeks. We'll meet our Renal Nurse sometime next week and will know definately our date to go home. My guess is the 20th of November.

We've been told the education is pretty indepth and can be a little overwhelming and is mostly about the bag changes, dressings and taking care in a sterile environment. I've been watching the renal nurses and I have a general idea.

Peritoneal Dialysis is more easy on the body than Haemo Dialysis and can be done in the comfort of our own home and at night, so we have the daytime to go about our business.

Larry has reported that he has not had any blood leakage in his eyes for weeks now and said today has been the best day as far as his eye sight is concerned. He said his eye sight, today, is good enough for him to drive. This is great news. He's still not driving as far as I'm concerned.

The renal nurses are quite impressed with his progress and how his body is handling the treatments.

Today the light at the end of our tunnel grew an inch.

Home.

We have a final Renal Specialist appointment on the 11th of November. I'm not entirely sure whether or not the peritoneal dialysis will have begun at this point, but it would only be a matter of days after the appointment when we will be able to go home permanently.

Haemo Dialysis will continue while the tenchkoff heals, 2 weeks.

Still no word from Immigration.

Tenchkoff Catheter.

Everything has healed well, the surgeon is happy for Peritoneal Dialysis to begin, but the Renal Nurse begs to differ and she thinks 3 weeks waiting is better. I wish she understood how much it sucks to live out of a suitcase, miss the comforts of just being home and losing privacy when you move in with someone else however temporary it is.

The good news is, he can shower now after weeks of semi-showers.

The best news would be that we could go home next week .. but that doesn't seem hopeful.

Back in Auckland

As of tomorrow, dialysis will be 3 times a week. Tuesday, Thursday and Saturday. Fluid intake during our trip away was manageable when I combined it with death threats. It's easy to stick to 1 liter when your life depends on it.

Summer is coming, now Larry doesn't walk around wrapped in a blanket 24/7. He even had the window down during our drive today. Before dialysis the heater needed to be on and all windows up on a hot day similar to today.

We were told when dialysis began that in a couple of weeks he'd have the "spring back in his step", and he has.

When we go home indefinately (hopefully 2 - 3 weeks, possibly 6) we'll take care of his eyes again. They've been put aside for dialysis.

Happy Sabbath

One of the reasons for coming home was to collect our mail. I had hoped there would be something from NZ Immigration. It was not so. There are two applications in. His Residency application and the Work Permit application. They also have his passport because it was required for the work permit application.

I've learned that calling immigrations customer service and inquiring may or may not irritate someone there, so I refrain from doing it because as long as there is an application pending, he's ok to stay.

Fluid retention, if any, over the last couple of days has been minimal and he has been successful in keeping with the 1 liter of fluid allowed.

Back to Auckland tomorrow. From here we wait for the tenchkoff to heal. While that heals he continues haemo dialysis and the education for peritoneal dialysis begins.

We also have a prescription for 6 weeks of Recormon. That's $2400.
Yeah right, it can stay in my car until we win the lotto as far as I'm concerned, which didn't happen last night, by the way.

Home again home again jiggedy jig.

Tramadol has been his friend since the Tenchkoff surgery. It works wonders.

Strict diet begins today. Since he is missing his Saturday session of dialysis, he needs to watch his fluid intake. It's all about urination this weekend and I'll refrain from the details and stats.

The whole dialysis and diet thing is frustrating me. He can't have this, he can only have so much of that, a serving of this and stay well away from that. After going through the list all that's left is cardboard and fresh air. The diet part is the hard part because I almost get into a domestic dispute trying to explain to him why he can't have a double whopper burger and large fries and at times I've given in just to lessen the headache.

Home for labour weekend and good to be here.

Dialysis - Round Six

I could see the something was wrong this morning when he walked out of the bathroom. He looked bloated and retaining fluid is a hideous side effect of dialysis. Urination becomes infrequent and may stop completely. We're at the infrequent stage nearing the stopping completely stage.

On top of that hes having pain around his bladder area. The catheter seems to be sitting on his bladder causing pain and the feeling to urinate. Again, this is normal. One of the nurses suspected a Urinary Tract infection because they've restricted him from having proper showers, but he shows no signs of this and the catheter on the bladder scenario sounds likely.

We were going to head home today, but he's not up for the trip so we will try for tomorrow.

There are currently 14 humans in this 3 bedroom house. The only thing missing is the wheels on the bottom of the house.
That's what it feels like.

Tenchkoff Surgery

Apart from being an hour later than the scheduled time, all went well. Surgery took 45 minutes, recovery took 45 minutes and the time it took to get from the hospital back to the house took an hour.

This is why it's important for Larry to get his eyes done. He listened to Transporter 3 because no matter how close I put it, seeing it just wasn't happening.

Recovery.

You can't see his view, which is Rangitoto Island, an inactive volcano in the Hauraki Gulf. Rangitoto is Maori for 'bloody sky'.
I felt it my duty to share that potentially bit of useless information.

Resistance is futile.

It's Tenchkoff day.
Early morning this morning. 7am check in at the hospital. Its a first in, first served deal and unfortunately, even though we arrived at 6.30am, there were four people before us. His surgery is scheduled for 10:15am.

It will be a lapriscopic surgery through the abdominal wall (micro surgery for Larrys Mom), and will take 45 minutes. He will spent a further 45 minutes in recovery and 2-3 hours in a ward before being discharged around 2pm this afternoon.

He'll be Borg in no time and he will comply.

Going home.

It's labour weekend this coming weekend. We're hoping to go home for 4 - 5 days, but it's a full on week.

Depending on how he is on Wednesday determines whether or not we go home.

Insomnia is a side effect of having dialysis treatments and it's not awesome.
3 hours of sleep because if he can't sleep he takes the attitude that no one is going to sleep.

Update:
Thumbs up from the Doctor to go home after dialysis on Thursday. We need to be back on Monday. Half a day traveling in the car is worth the short 3 days of being home.

Recormon dose has been upped to the max of 10,000mls, twice a week.

Today's treatment was 4 hours 30 minutes, the max he'll have.
Stitches out today.
Surgery tomorrow.
Sleep now.

Dialysis - Round Five

The public health system in New Zealand is overloaded with people needing dialysis. Up until recently, dialysis was denied to people over 80 years old because 1. Resources were minimal and 2. Some genius played God and decided that no one needed healthcare after 80 years old.

This is the only clinic in New Zealand that offer private dialysis care. There are at least 10 chairs in this clinic that I have counted. There may be a couple more out of view that I'm not aware of. This is exactly why having Kidney Failure is a big no-no as far as the Immigration is concerned.

The other 8 people in here today have come from the Waikato region, an hour away, by shuttle. They're delivered at 7am and leave around 1pm. Most of them are of Polynesian descent.

We have more sheep in New Zealand than we have people and it seems that NZ feel its meat exports are more important than its residents. Meat exports boost the NZ economy, why doesn't the money go into the healthcare system? Who gives a crap about the Kiwi and Kea being endangered, peoples lives are endangered because money is being spent in the wrong places by a Government who claim to be for the people. If money was being spent on the health system, which is a necessity really, then hospitals wouldn't be under staffed and medical personnel wouldn't be on strike, like the Lab Unit at Middlemore hospital will be next week.

Today marks a week of Dialysis treatment. Dialysis takes over your life. I can understand the depression it sends people into and that opinion is gathered after only a week of sitting here. Endurance is my life right now because Larry could easily fall into the same pattern the other 8 people here live with daily. After talking with some of them, they're just so tired. Go figure. It's only 4 hours per treatment, but one woman comes four times a week and she's in her 8th year of Dialysis.

It's an eye opener for my people and the need to change and control their diet. It's also an eye opener as to why we have loved ones. I can't imagine Larry going through this with people who were in his life before I came along, and I'm not just blowing smoke up my own ass for the fun of it. It's quite true. You have to have the stamina to simply apply yourself to endure just being a supporter.

The Port. He got a free chest wax the other day when they ripped off the adhesive bandage that was applying pressure to the incision sites.

Masseur Dalek.

The Artificial Kidney.

Day off tomorrow.

Blood Transfusion

I thought it was 12 hours long, but its only going to be 6 hours long. I had hoped we got the weekend off, we both could use the sleep, but it wasn't so. We have Sunday off then back into it again on Monday. Eventually, dialysis (haemo) will only be 3 times a week at four hours per treatment. When the catheter heals completely after surgery (4 to 6 weeks) and peritoneal dialysis begins, then we can go home.

ETA on going home? December. Yuck.

We're in a day stay unit at Middlemore hospital today. Larry can't keep still. The discomfort is irritating him.





Isn't the hospital the worst place for someone to be when they have no immune system? I'm just saying, because the dude two chairs over looks like his next stop is Heaven.

Dialysis Round 4

When they hook him up and pull him off, I have to leave the room as a precaution against infection through the tubing. One of the tubes leads straight to the heart via the jugular vein so .. I get out.

Four hours of Dialysis today. A blood transfusion tomorrow and nothing but miscommunication between the private health system and the public health system. 3 pints of blood at 4 hours per bag. Even though the hospital is a 2 minute drive from my sisters house, I'll probably sit there with him all day during the transfusion because he'd want it and I'm happy to do it.

We found out today that it takes 4 - 6 weeks for the tenchkoff surgery to heal, we were told 3 weeks originally. During that healing time, he will continue to get Haemo dialysis until his catheter heals. It irks me that so much money is going into this and I know it's support, but it's just so much money.

If you know Larry, you know he talks alot. I had to tell him to shut up today because he was holding the nurse up trying to educate her about dialysis. I assured him that she probably already knows.

Dialysis Clinic.

HemoGlide

Just a little something to make you vomit.

You're welcome.

Dialysis - Round Three

"Going Flat" in dialysis terms means, "Give me agua! (water)".
This happened today.
Larry has a sense of humour, so when he stopped responding to me and put his hand on his heart I had to ask him if he was tricking, because he has that tendency. Yesterday he said he saw a light then opened his eyes, looked at me and uttered, "You're not Jesus". When his eyes began to roll back it was time to call the nurse.
I can't remember the explanation they gave, but it was a mixture of needing water, low blood sugars, body going into shock because today's dialysis treatment was to be 4.5 hours long and alot of dialysis over the last couple of days. His heart rate was slow and irregular, he was unresponsive, needed oxygen and they stopped his treatment 40 minutes from completion.

The nurses responded accordingly.
I love those women and it wasn't so scary because they knew what they were dealing with and were quick to respond. That's the only reason I didn't back myself into the corner and scream save him. I gathered my chi and let them do their job.

He has been taken off a couple of his prescription drugs, but the worst part of his meds are all the eye drops he has to instill at different times of the day. Easy to forget.

He drank tea today, because he needed a sugary drink to bring him back to Earth. I told the nurses it was against our religion and Larry said we'll let this one slide because it was for medicinal purposes.

Blood transfusion sometime this week.

With his immune system shot, he's susceptible to basically everything viral. After the first round of dialysis we returned to my sisters and her 2 year old was diagnosed earlier in the day with the 24 hour Rota virus she had picked up from daycare (sharing food, daycares fault). We weren't home for an hour before Larry had symptoms and so it began.

That was the hideousness that was Saturday night.

His blood sugar is up from a usual 5 to 9. 9 being a little on the high.

Day two of dialysis. He lost 2kg since Saturday. I'm pretty sure 1kg of that is from the haircut.

The haircut.

Larry got a haircut today. I was supposed to take him to his usual barber in Hastings before we left, but we left sooner than we anticipated. I took him to a barber in the closest mall. Three Indian guys who barely spoke English were the hairdressers. As we sat waiting I'd listen to the other clients when it came their time for cutting. They knew what they were talking about. "A three on top and a two on the sides", "Three all over" and so on.

When Larrys time came, he sat in the chair and said "Long on top, short on the sides". The hairdresser didn't understand this and after a few minutes of trying to understand eachother I hear Larry finally say "Cut it like yours".

Before I could protest, he was already getting what I found out was a "2" all around his head. I text my sister swear words as I watched because she suggested the place.

The guy had a faux hawk and my blind husband couldnt see that.

I'd say this is a perfect example of what a wife is for, but it would only be perfect if he didn't have a faux hawk.

A good night.

Our evening was saturated with nausea and complaints of pain and discomfort. Rightly so.
By midnight it was time for bed, where he slept well.
Today there is a little blood from the incision site, nothing that can't be fixed with hyperfix.
Dr called to check in, he is happy with his overnight progress.
A free day today.
We may head out to find New Zealands only Baja Fresh equivalent MexiCali, it's in Auckland somewhere.
His fluid intake is limited to 1 liter per day, this includes water in foods and beverages.
He will slowly be able to bring protein back into his diet, bio-proteins.
He misses bacon, because bacon is the answer to everything.

Dialysis removes fluids in it's process. They took 1kg from Larry during yesterdays treatment. Hence the nausea.

Dialysis - Round One

The dialysis machine.
Looks like a pimped Dalek.

2 hours of haemo to begin with.

The nurses were happy.

He was content.

Currently, he feels like crap.
If ever there has been a time, at all during this whole journey, where I wanted to just give up, it's this weekend. That's after having 45 minutes of sleep in 48 hours and dealing with a seemingly delusional man, which is apparently a side effect of ESRF.

I've been waiting for him to tell me he's backing out of treatment again, because that's when I'll exterminate him.

Need sleep.

Emergency Department

We wound up in the Emergency Department about an hour after we got home from the hospital this evening. First the blood at the site oozed, then congealed, then stopped then came back with a vengeance. It wasn't so much that I could see the blood pooling down his shirt, but the color left his face and his lips began to turn blue. Naturally, he thought he was He-Man and didn't want to go back to the hospital, but I pulled rank.

In a foul mood, we went to the Emergency Department where the receptionist told us her life story. With my husband bleeding and turning whiter than he already is, I quickly told her I didn't care and stated the urgency.

Long story short, he needed another stitch and was discharged .. not before he talked to the Doctor about 3D Animation and Lightwave vs Blender for 30 minutes.

I hate public health.

All seems well right now.
In trying to be optimistic, the clock telling me it's only 11.40pm is giving me the chills.

I just want 6 hours of sleep.
Sleep and I haven't been friends since May 2009.

Of course I took photos.

Did you know? Some people thought Larry's illness was fiction.
Here's Larry before surgery, basking in the sunshine like a lethargic reptile.

No idea what the steps of the procedure are.

That thing was like half of a knitting needle.

Tasty.

That's the haemoglide.

Installation.

Continued.

In.

Out.

More anaestetic.

Jugular. This part was a little horrific.

Catheter.

30 minutes later, all done.
He was discharged from hospital. I think that was a bad idea, but you can't tell a man what to do at the best of times no matter how hard you try.
Dialysis tomorrow morning.

Who's the naughty boy pinging SplineGod.com then?
We got your IP fool.

Surgery Day.

Out of surgery.
All went well.
I was able to sit in and watch.
Greys Anatomy tend to embellish.
The anaestetic hasn't worn off yet.
I'm looking forward to when it does, he's been calling me a primate all morning.
If all goes well, he should be discharged this afternoon.

Surgery

He will have a tunnelled catheter installed tomorrow, which will be placed in the jugular and will exit out of his chest. The tunnelled catheter is designed for short term acess, which in Larry's case (haemo) is to stabalize him for peritoneal dialysis some 4 weeks away. He will not need the fistula like we originally thought. He will require haemo 2 hours a day, 3 days a week for up to 2 weeks, but the specialist thinks he will be stable after 1 week.

Pending the outcome of tomorrows surgery, he should be out by tomorrow afternoon. There is a risk of bleeding. Should this occur, he will be required to stay in hospital and undergo a blood transfusion.

Dialysis will begin on Saturday.

October 19th - Tenchkoff surgery.

We can go home days in between him being dialyzed, but that's a $200 return trip and I'd rather endure my sister than go home 3 times at that price!

Appointment today

We have an appointment with the Kidney Specialist this afternoon. As far as I know, it's the fistula installation.

This:

"When we put a new fistula in someone we don't needle it for 6 wks. In the mean time we put in a permacath (line in the neck) to dialyse through until the fistula has matured"

.. from a friend, who is a Renal Nurse in Australia, who has been a huge help over the last couple of months.

Maybe this is what they'll do today. More updates through-out the day.

Wrong side of the bed.

What a day, and it's not even lunch time.
Idiocy on the forums.
An eye appointment turned out to be laser surgery. On top of that his left eye is not healing and doing weird things that the doctor can't diagnose or pin point right now.
And then, we need to be in Auckland on Friday to put in a fistula. His health is dire, he needs haemodialysis to stabilise him for the catheter surgery.
On top of that, our car is a crapshoot and needs to go into the shop, but we don't have the time so we have to drive to Auckland on it anyway.

Give us a break.
PLEASE.

Back to Auckland

We're going back to Auckland next week.
His blood work wasn't good today, so it's likely he'll need Haemodialysis and a blood transfusion, unless we can miraculously get his creatinine and hemoglobin down and up this week. How we managed to get it down and up in 2 days a few weeks ago, I'm not entirely sure.
We've been told we'll be in Auckland for up to 6 weeks.
I didn't grow fond of Auckland while we were there, but what can you do.
The Doctors are happy he changed his mind, I'm happy he's changed his mind.
We see the eye doctor tomorrow. It's supposed to be for more laser surgery, but the last thing we need right now is for issues to arise with his eyes so close to dialysis.

The pharmacy also discovered today that we weren't supposed to be subsidized, so cheers to paying for prescriptions now AND thumbs up to $200 on Recormon today. This morning Larry begged me for an iPod touch, to listen to his music because our tastes in music differ. I was all for it until we were handed the Recormon prescription.

Good times.
What is it?

The light at the end of our tunnel.

Dialysis.

Is back on.
Headache much?
Glad someone was able to talk some sense into the man.

Eyes.

I think it's important for him to get his eyes done and this is what will take priority right now.

We talked with one of our church leaders yesterday and he bought up a point that I never considered before, which was that New Zealand have an immigration scheme you can apply under called the Expression of Interest. This category is open to people with specific skills that New Zealand lacks and creative artists falls under that. Larry qualifies for this (he also qualifies with his actual degree - Laser Optics Technician - but he has not worked in that field for years), but with his eyes as bad as they are at the moment he wouldn't be able to work.

We have this on our side and it's important to get his eyes taken care of first.

There are over 16000 illegal aliens/overstayers in New Zealand. Worst case scenario: Should he not get residency, he will overstay until I get my US Residency back. During that overstaying period, any medical expenses will need to be paid for out of pocket. Here's where getting his eyes fixed comes in. With his eyes done he becomes independant. I can go to work. He can work from home. We can pay for his treatments.

Best case scenario: New Zealand grows a heart and grants him Residency despite his illness.

I think it's best we continue with his eyes.
I know he's scared and I don't want the darkness, that is his vision, adding to that.
Our church leader talked about quality of life yesterday.
What is that when you have no sight?

Comprehension.

It's been an intense week and I'm fortunate to have family to go through the emotions with us. I've run Larry's decision through my minds centrifuge for the last 6 days and finally have a full understanding of why he came to his ultimate decision, and it's money based. Understood.

I asked myself if he was suicidal. That was pointless, so I asked him and he laughed.

He explained, as he had on Monday night, that he's exhausted from being sick and exhausted from the mental effort he has to muster up just to make it through another medical visit. Again, understood. Add into the mix the kurv ball. Add to the mix the Immigration situation. Add to the mix the must-be-pre-paid healthcare system here. It's a hybrid of fatigue. Go figure.

Our Doctor called on Saturday night, and I'm glad she did. I thought that after his decision, she'd drop us as patients - but she was genuinely worried and dialysis aside, she'll treat him the best way she can without dialysis.

Should he get residency in New Zealand, we will go the dialysis route, but right now that's the million dollar question or at least the $56,000 a year question.

Seen better days.

It's a sad state of affairs when the governments of two such great democracies have become this oppressive to its citizens.

We await a Residency decision from Immigration New Zealand.

Clarification

We appreciate the comments, concerns and suggestions. Larry has asked me to clarify, because if you have not read and kept up with the entire blog you may be a bit out of the loop. I suggest you read the whole blog, it’s the only way to fully understanding our situation.

At this point in time, I cannot return to the United States because I have an abandoned green card. Should I go back, I will be given two options at the border. 1. Be deported or 2. Surrender my green card and be housed at an Immigration facility until my application processes.

Larry and I cannot be apart. He is dependent on me for mobility.

Larry does not have Residency in New Zealand at the moment. His status this way does not qualify him for free public health care. We are awaiting a residency decision.

There are three bridges to cross with the residency before deportation.

1.They can give him residency despite his illness and missing paperwork.

2.If the above is declined, a medical waiver can be issued and he can possibly get residency this way or

3.If all else fails, we appeal it through the courts on a hardship.

We have not passed 1 yet, this is what we are waiting for.

Medical expenses cost money and it’s money we just don’t have. The donation button up got us enough money to pay for the first two eye surgeries. Very grateful for that. We didn’t anticipate the follow up appointments being so expensive or the emergency surgery he required. He still needs 3 or 4 more surgeries after this one. We have absolutely no way of paying for this.

We were grateful that our church offered to help for the dialysis treatment, unbelievably grateful, but it was done so reluctantly and done under certain conditions that I have mentioned before. The condition being that we return to the USA after 2 months of paid treatment. Well aware that I can’t return, they instilled this condition and had us agree upon it.

What it was that set Larry off a couple of days ago to refuse treatment was a bill we received from the hospital for the emergency eye surgery. A bill for $2200+. I called the hospital immediately and asked to speak to the accounts people in charge. I told them what our eye surgeon had said about being over charged, asked them for an itemized invoice and let them know that I wasn’t going to pay the bill until I got to the bottom of this. Doctors and Nurses have told us that there is corruption in the health board in Hawkes Bay. It’s a common thing through-out New Zealand. The hospital called back and said the bill was right, I needed to pay.

We got ripped off and as long as we keep paying we’ll continue to be ripped off.

I don’t work because I can’t work. Larry is dependent on me. Where he goes, I go. Where I go, he goes. It has to be like that because he is dependant.

I want him to continue with his eye treatments. I’m not going to fight him on the kidney treatments because I understand where he is coming from, but I do want him to get his eyes done. He needs to get back to doing what he loves to do best.

A change.

It's been a long sleepless night.

10pm last night Larry came to a decision that he was not going through with the surgery that was set for today. He's not going through the motions to be dialyzed here and he did not want to be treated anymore.

At 4am, I surrendered and emailed our Doctors and Bishop to advise of the decision.

We've paid close to $10,000 in medical expenses just in the last 2 months. $15,000 in the last 6 months and our church recently fitted the $16,000+ bill for the dialysis. All this has been money we did not have initially. It has all been from donated money, money from selling everything we owned and money from family.

When you add the stress of Immigration, lack of work, being partially blind, medical bills and expenses, his health in general and Kurv Studio's owing money, you can understand why someone would "give up".

He is utterly exhausted. He is fed up with being ripped off. He is tired of putting out one fire just to turn and see another one blazing. He is over being a burden and all of these things are understandable and valid.

We don't have the money to pay for more eye surgery. We don't have the money to pay for hospital stays ($600 a night). If complications were to arise from the surgery today, we don't have the money for A&E visits, for treatments needed related to the surgery and for more prescriptions.

He is not giving up. This is him embracing what's ahead and leaving it up to God to decide. We've been told that these trials and tribulations are to test our faith and this is him doing it.

I don't understand his decision completely, but ultimately it is his decision.

Dialysis funding was conditional.
Our church paid for dialysis for 2 months to get him fit enough to travel back to the United States where he could receive it for free, apparently. My US immigration is going to take longer than 2 months to process and the bottom line is that we refuse to be apart.

He does not have the energy to battle through US Immigration again. We can only await a decision from the NZ Immigration and hope it's in our favour. If it isn't, we'll be using what money we have left to file for an appeal and hire a lawyer.

Just when you think you're a strong person, something unforeseen comes along and melts you back down to molt.

Hospital bills

My mother arrived in Auckland today bringing with her our mail. Amoung the mail was a nice bill for the emergency surgery done on the 16th of September. I called the hospital in an attempt to get what was supposedly owing to us from the first surgery. We were told that we were over charged by $1500. They supposedly charged for a private cataract when he had a vitrectomy.

I found out today this was not the case. When I tried to credit the $1500 over to the new bill, they told me everything was itemized correctly and we were actually under charged.

I can't put a price on keeping my husband alive, but holy crap.

Surgery tomorrow.

Breathe baby breathe.

I'm a bit nervous because it seems his eye's going down the relapse path again and any pain he feels in his eye that he tells me about makes me cringe because we're so far away from our eye surgeon. I didn't want to do the eyes first. I wanted to take care of the kidneys because I knew we'd run into problems with his eyes, and we have.

Sleep, since we've been in Auckland, has been in a lower degree. If he can't sleep he won't let me sleep either. So I have half asleep conversations with him and a few nights ago he talked for one hour about radiation and Chernobyl. That should have put me to sleep, but I don't want to waste a minute sleeping if he's awake. Y'know?

The report says that he has severe lethargy, so he sleeps alot and I let him because he's constantly uncomfortable.

He's exhausted.
He's in pain.
He's unhappy.
He's ready.

I'm not.

How to help.

Thanks to the suggestions and help from you good folk, see the new 'How to help' section to the right.

Refer to this post.

Please know it's completely optional, but you will get a high res image with a verse on it. These verses have been very helpful to us during our hideous journey.

Renal Specialist Report

PROBLEMS
End stage renal failure (ESRF) - cause unknown
• Renal biopsy revealed marked glomerulosclerosis, 10/10 glomeruli almost completely sclerosed
• No diabetic changes identified but severely scarred kidney (possibly end stage diabetic
nephropathy/electron microscopy results unknown (biopsy 31 May 210)
• Symptomatic end stage renal failure with lethargy and anaemia
Diabetes mellitus
• Poor control now with good HbA1c of 6.6%, 49mmol/mol
Hypercholesterolaemia total cholesterol 6.7mmol/L
Height 1.81m, weight 117kg, BMI 35.7kg/m2; waist 130cm.
Anaemia
Severe diabetic retinopathy
• Functionally blind in left eye; and shapes only seen through right eye
Bilateral cataracts
Non-resident
Asthma as a child
Pneumonia (about 2005 in the US)
Peripheral vascular disease with weak pulses in the lower limbs

OPINION/PLAN
Larry has end stage renal failure and needs to start dialysis now. I will attempt to get a Tenckhoff catheter in next week. He may not last without haemodialysis until a month’s time when we can start to train him in PD but we will assess this next week following his surgery and his results. I have given him a laboratory form today for monthly blood tests when he returns to Hastings.

EXAMINATION
Pale and needing help with his escort and mobility. Height 1.81m, weight 117kg, BMI 35.7kg/m2, waist 130cm. Blood pressure 134/70mmHg sitting right arm. Pulse 76bpm regular. He has no pulses in his lower limbs except the left popliteal. His femoral are equal and normal. Dual heart sounds and no murmurs.
Clear chest. JVP +3cm. He has mild leg oedema.

Friday

The Tenchkoff surgery was to happen depending on yesterdays blood results. The Renal Specialist said he'd email us yesterday afternoon, last night at the latest. I was checking my emails every hour on the hour. No emails. No emails this morning. No emails at lunch time, by 1pm I thought the worst.

I missed a phone call from the renal specialist. He called twice and finally sent a text message to say call him ASAP. Not awesome.

Called.
Creatinine - 790 (down 20 since Tuesdays bloods)
Potassium - 5.4 (up since Tuesday, but still safe)
Hemoglobin - 70 (apparently good)

These results are good enough for surgery without the hemodialysis and a blood transfusion. We had to pick up paperwork near down town Auckland before 3pm.

It's all a go.
Someone's definately listening!
This was a good day.

Renal Consultation

The renal specialist had me in giggles the whole time we were there. He gave us the brief on what happens next pending todays bloods are good.

Height 1.81m
Weight 117kgs
Waist 130cm

Swabbed for MRSA, a precursor to surgery.

We won't know much of much until tomorrow when the specialist gets the blood results, but we do know it's going to be an intense next couple of weeks. He said he had a few things up his sleeve re: Immigration and that alone made the $500 visit worth it.

Keeping it together in the meantime.

Blood results

Results from yesterdays bloods.
Creatinine 812 - down.
Potassium 5 - down.
Good news.

8am appointment with the Renal Specialist tomorrow.

In Auckland

The weather channel told us there may be snow on the mountains tomorrow and the roads may be closed for some of the morning. I packed the car and we left The Bay at 7.30pm. Arrived in Auckland at 12.30am. Bless his heart Larry stayed awake and yapped the whole way. From Glen Beck to nuclear weapons to the US Constitution and laser weapons in orbit.

O_o

Coming a day earlier will give him the rest he needs because it's all on come Thursday.

Dialysis

Our Doctor advised to postpone the eye appointments for two weeks and head to Auckland to start the Dialysis treatment. We will drive to Auckland tomorrow morning for Thursdays appointment. There's a chance he will require a blood transfusion and haemo dialysis just to get him in shape for the tenchkoff surgery. This is where the hidden costs come in, I mentioned it in this post.

To everyone else, thank you for the donations, the video purchases and the emails of support and comfort. I read every email and instant message to Larry and they always put a smile on his face when he's feeling at his lowest.

I'll be giving thanks to LightWave3D this Thanksgiving.

Blood Results.

Creatinine is down - good.
Potassium is up - bad.

Added medication to his perscription cocktail:
Resonium A
Apo Timop
Latanoprost
Alphagan
Azopt

Appointment clashes this week. We're required to be here and out of town. A follow up eye appointment on Wednesday in town and a Renal consultation in Auckland on Thursday then surgery in Auckland the following Tuesday and more laser surgery on his eye on Wednesday back here. Not quite sure how all of this is going to work out. It probably won't. Both eyes and kidneys are very important, but the kidneys are more important than the eyes .. but without the eyes working there will be no income to fix the kidneys.

Sometimes, just sometimes .. life puts you in a bitch of a situation just to see the route you take to get out of it.

Asking for luck would be a below average request.

Cyber suicide.

My parents have helped us out alot in the last year, more than enough. We only see them once a week for 2 days. They're dorm parents at a boarding school and they live on campus 5 days a week. So when my mother visited this morning I detailed her on the eventful week we've had and gave her an update on the royalties situation. She's known about it and has been insisting we go public because 11k is alot of money to lose, especially when we could use it right now.

When I told her the cat was out of the bag, her comment was that he pretty much slit his own throat.

Slitting his own throat was his choice.
Larry doesn't have a choice.

Word of the day.

Invertebrate.

Imagine it.

Imagine not hearing him call out to you in the middle of the night for help.
Imagine not being woken to noises of pain.
Imagine not seeing him hug the walls just to make it down the hallway.
Imagine not seeing him sitting inches away from the TV because he can't see.
Imagine not hearing him tell you I love you.
Imagine not seeing him walking in circles reaching out to find you.
Imagine not leading him through the grocery store.
Imagine not staying awake all night just to make sure he's still breathing.
Imagine not hearing him struggle to breathe at night.
Imagine not hearing his pleas to God in prayer for relief.
Imagine not being scared that today is the day it all goes away.
Imagine not hearing him tell you "that meal was interesting, I'll fore go seconds".
Imagine not seeing him next to you when you drive somewhere.
Imagine not comforting him.
Imagine not having to keep it together for him.
Imagine not hearing him talking loudly at 3am on Skype.
Imagine not hearing him laugh.
Imagine not hearing him sing two notes off key.
Imagine not waking up to him in the mornings.
Imagine not receiving emails from him saying "I love you again today" even though he's in the same room.
Imagine not seeing him smile.
Imagine not having dinner together.
Imagine not hearing him cry anymore from pain and exhaustion.
Imagine not hearing him snore louder than a fork in a blender.
Imagine not hearing him apologize for being sick and taking up my time.

Imagine him not there anymore.
I don't need to do that to know that I appreciate him.

The cons outweigh the pros, but I'll run in a heartbeat to his every beck and call if it means another moment in time with him.

TGIF

Larry spent the night in hospital, and I cannot wait for that bill, but he is much better than he was yesterday. Ocular hypertension means the pressure in your eye is higher than normal. Yesterday Larry's was three times higher than normal. It was elevated by inadequate draining in his eye post-surgery. He was prescribed 4 different eye drop treatments that will lower his intraocular pressure. Do you know what it looked like to me? On District 9 when the main dude begins to turn alien and his eye is all wiggy-like, that's what it looked like. Attractive.

New Recormon prescription today, 6000mls - now twice a week. That's $200 a week. I only cringe because earlier today we lost $500+. Let me tell you about that.

You may have noticed the donation button has disappeared. Due to a third party snitch, paypal has closed our paypal account. Said snitch did their homework though and must have eagerly searched through the paypal policies on receiving donations and found something that would 'stick-it-to-us'. Tu'che! On top of that, my gmail password was attempted to be reset this morning. I can only suspect but, for the life of me, what a kurv ball.

Instead of donations, Larry's videos at Liberty3D are available for purchase. These are available for digital download and the customer service there at Liberty3D are good people, no hassles, quick service and no excuses. I sincerely thank the Liberty3D guys, all of them, for over fatiguing themselves and supporting us whole hearted. To the Lightwave community in general, for the support and donations made over the last 6 weeks, we are so grateful.

Finally, Dialysis is a go. He will have the Tenchkoff Catheter surgery in the next week.

The Tale of the Lost Royalties

At 5am this morning Larry, who has been sleeping in the lounge on a chair because he needs to sleep sitting up, crawled into my bed crying because he was in excruciating pain. Wishing there was more I could do for him, all I could do was hug him because telling him everything's going to be ok would be dishonest.

I implore the Lightwave community to refrain from purchasing videos from anywhere that isn't www.liberty3d.com or www.splinegod.com, clearance sale or not.

He has been admitted to hospital for emergency surgery on his eye. Dialysis treatment will now depend on his overall health.

New Medication

Added:

Ferro-Tab - Iron Supplement.
B12 Complex

Hopefully both will help his hemoglobin because Recormon shots stopped this week due to the price.

He slept for 12 hours straight on Sunday, but I don't know if that's because of his health or because he was up all night skyping with some of you good people. Do send him to bed if it's 4am here and he tries to call!

Bloods on Thursday.

Immigration update

We received a letter yesterday from New Zealand immigration. We've been through about 4 different case workers in a month, but it seems we have a set one now. The letter detailed on more documentation that was needed and gave us a heads up that the medical application has been through the first set of medical assessors and the outcome wasn't good. Because of his condition he'll be a strain on the system here in New Zealand. Ok, we knew that.

By the 8th of October he will require all documentation needed and then make a decision based on what he has. He did mention a medical waiver and that would come when the second set of medical assessors assess his medical application. It doesn't look promising, but we have to hold on to what little hope we have now .. which I liken to holding on to someone hanging over a cliff, about to fall, by the pinky finger.

Sometimes it's normal to just be human and I hope that, which is what we've been praying for, will overcome our case worker, that our story may soften his heart and the fact that we only want to be together hopefully will be worth something to him.

Deny him medical benefits in NZ if you must, just let us be together.

Sunday.

Not a good day.
His health is very low today.
The sooner we get the dialysis ball rolling, the better.

Keeping it together

Woke up to an email from the NZ Immigration today telling me they required even more documents for his applications. He now has two pending applications in. One for residency and one for an extension on his current work permit. If it weren't for the case workers email today I would never have known that his passport has been sitting in in mail center HQ for the last two weeks with ten years of correspondence from family and friends used to prove a bonafide marriage. I don't know why it was sitting there for that long, but it cost us two weeks because his passport was required to extend his work visa and the application was held up because of it.

In 12 days he'll be an illegal alien. I spent all day photocopying documents and getting statutory declarations and notarized stamps for what they require. I don't know why they can't liaison with each other there at the immigration offices because they'll see that the documentation they require is already there and as much as I've wanted to tell them this during our all day phone calls and emails, you don't bite the hand that feeds you etc etc.

The only thing that is guaranteed right now is that the sun will rise tomorrow.

It's been a stressful week, but we have to remind ourselves that even though it feels like the weight of the world is on our shoulders, we have the support of good people, family and friends, who have helped and continue to help and that's what makes enduring it worth it.

It's been one year already.

Eyes.

His eyes are doing well. He will require more laser work on the right eye.

But the fantastic news is that the hospital overcharged us for the surgery last week by around $1500. They charged for a private cataract surgery when in fact it was a vitrectomy surgery.

God Bless the receptionist who is at the desk when I march in tomorrow morning.

What do we want?

Just each other.

A free day.

We are currently at a road block.
We have no appointments today, so we will stay home all day not thinking about the road block.
Because sometimes it's nice to forget about everything for a day and just sleep.

"I am willing to mourn with those that mourn
Comfort those who stand in need of comfort
Bear anothers burden that they may be light"

Another question answered.

Why not move back to the USA for treatment?

We've had this question alot and we have taken it into consideration, but you need to read the whole story to fully understand why it's not an option right now. The biggest thing is that in this time, being apart as a husband and wife is not an option. I don't expect his family to tend to him in my absence because they have families of their own to care for and as a non-immigrant who is guaranteed deportation on arrival, I don't know how long it could be living apart while I re-apply.

Put yourself in a situation where you're told dialysis may or may not help, where you've been given a few months to survive this and dialysis may or may not help because of the level of your degraded kidneys. Then ask yourself who you want to be with while you are going through this.

It's all we're asking for really, to just simply be together.

We can't just uproot and move in with his elderly parents especially if only one of us can go back.

That's why the USA isn't in the cards at the moment. We need to exhaust all our efforts to keep him here before we frustrate ourselves and throw another country into the mix.

I smell a rat.

A phone call from the private dialysis clinic doctor has me suspicious.

You wave enough money under the nose of these people and suddenly the price changes or his health drops a couple of notches.

We went to our church for XX amount for the total costs. The dialysis clinic have been told that it's all a go, but it seems things are going to change, specifically the costs.

Factor in the $4800 per month it's supposed to cost.
The $10k that needs to be paid before hand for the surgery and the month advance for fluids.
The gas it will cost to drive to and from Auckland when needed.
The cost of living - I don't know.
The cost of gas to and from the hospital.

He talked about overnight stays in the clinic/hospital there that he didn't say whether or not was included in the 56k. He's supposed to email us today sometime with a plan layout, if the price has changed we're declining and waiting for a Residency decision.

Again, two steps forward, three steps back.