Monday, November 29, 2010

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.

Sunday, November 28, 2010

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.

Saturday, November 27, 2010

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.

Thursday, November 25, 2010

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.

Wednesday, November 24, 2010

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.

Tuesday, November 23, 2010

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.

Monday, November 22, 2010

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.

Saturday, November 20, 2010

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.

Friday, November 19, 2010

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.

Thursday, November 18, 2010

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.

Tuesday, November 16, 2010

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.

Saturday, November 13, 2010

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.

Thursday, November 11, 2010

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.

Monday, November 8, 2010

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.

Saturday, November 6, 2010

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.

Friday, November 5, 2010

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.

Wednesday, November 3, 2010

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.