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Showing posts from August, 2010

Some good news and some bad news.

Sometimes we have to force ourselves out of the hole we're in to be jovial about our situation. Tomorrow Larry goes under a general anaesthetic for the surgery on his left eye. At our appointment yesterday we were warned that given his current health, there's a chance things could go south and that has been on my mind all night. In an attempt to not make things morbid, we had a conversation at lunch today that turned into something funny. Tomorrow, if you see a light please make sure it's the light from the hospital ceiling and not the light back to God. Argue with them if it's the latter light. On the other hand, if you see flames .. I can't help you there. And we can laugh about that, because it's all we have. That sick sense of humor. The Russian nurse who bled Larry today is a cold woman. She means business so she doesn't give you the warning before she goes for gold and sticks you. We were in there for less than 2 minutes. Today they check for Renal

A below average day.

I need to clarify the issues with Larry's eyes, because there are people who don't 'get it' . Years of having diabetes has degraded his vision. Fortunately, diet change has reversed the diabetes some, but the damage has already been done - particularly with his eyes. Last Wednesdays surgery was to burn the blood vessels, that are leaking, shut. The surgery this coming Wednesday is the same surgery PLUS removing the bloody gel from the back of his eye and replacing it with saline. There are three things these eye surgery's are doing, excluding the cataracts none of these surgeries are going to be helpful with his eye sight getting better, but more so just keeping what eye sight he has. These are: 1. Seals hemorrhaging blood vessels that are leaking 2. Restricts the growth of abnormal blood vessels which tend to rupture and leak 3. Prevent the retina from detaching because of scar tissue created by the hemorrhaging blood vessels Neither of these surgery's are to

Eye Surgery.

2 hours after surgery. We had a pre-surgery consultation today and I've realized just how poor the record keeping is around here. You'd think that in a small town and everyone under the one health board, they'd be more on top of that. It's not so. I don't know how many times I've repeated his health history to how many different medical personnel, but it's getting to the point where I just want to say, "He's dying, move you're ass". We spend 20 minutes relaying our story each time we meet someone new. Why isn't this information made available to them? When I get to the part about the health board refusing to give him dialysis, they shrug as if dumbfounded. Today when she asked how close he was to needing dialysis I rudely replied with, "Three months ago". On our way out of the consultation the nurse handed me a pamphlet informing me of my rights when receiving a health service. They forgot to add that it does not apply to non-

Latest Results

Bloods Creatitine 815 - same, Potassium 5.7 - still safe level. Recormon shots have been increased to 6000 mls - two more viles ordered. Immigration Usually when you screw up with the immigration you screw up majorly. One document out of place and you're looking at a re-file. I sent in a detailed support document basically briefing them on our story. Someone woke up happy that morning and we received a phone call yesterday to submit the documents we'd left out, one included the Police Reports that we still have not received, but this is where Character References come in handy. It's not like we can call the FBI directly and ask for our Police Reports that have been requested twice already. We will send the needed documents in on Monday with the work visa extension. Everything seems copacetic with Immigration right now, but minimal. At least the application has been lodged a week after submission. My cousin, who's wife is British, lodged her application in January an

After Laser

The anesthesia has worn off and he's not feeling too hot, needless to say he'll be out of action for a couple of days. We were told there would be some discomfort, but the F-bombs he's dropped tell a story of discomfort being the wrong word. I'm banning him from his computer and phone calls are limited, for the next couple of days, to family. If he is needed for work related issues, please contact me directly. pasider@gmail.com Like the photo? I thought you would.

Laser.

Villa 3 is where you go to see the Opthomologist . Our appointment today was at 10:30am. When we got here we walked into the waiting room to 2 prison guards and an inmate handcuffed to each other and a man wearing headphones upside down singing songs by The Beatles. I considered whether we were in the right place. Villa 3 the eye ward or the east wing the psyche ward? It's almost noon and he's just been taken in for an injection in his eye. Local anesthetic . It takes five minutes to kick in then he's having 20 minutes of laser treatment on his right eye. Blood vessels on the back of his right eye and the front. Chemicals in his eye aren't working the way they're supposed to be working, so they've been confused and vessels have started to sprout at the front. There are a lot of after effects (not the software) and its likely he won't see anthing for the rest of the week. Sad because our niece, the one who thinks she's an elephant, is on her way down t

Immigration. Need a favor.

Larry's NZ residency application is in and as mentioned in a previous post, it's incomplete. Police reports are required and we have sent in 2 sets of finger prints this year and have heard absolutely nothing back. We need character references for Larry from those who have known him personally and professionally. I need to extend his current work visa before the 23rd of September, I want to have that in by Monday week - with the character references. The more the merrier and for those willing to do this please leave full contact details in your email in the case that NZ immigration require verification (since they may be unsigned). I myself know that had Larry not been sick, he would have fully qualified for the Expressions of Interests entry into New Zealand because of his profession and would be a huge asset to NZ in that regard. They don't have to be long, they just need to be truthful. Haters need not apply. pasider@gmail.com Example: Date To: NZ Immigration Re: Chara

Detox.

Day One. Because I'm prepping to give away my kidney no matter how unethical they tell me it is. Unethical is prolonging a sick mans residency decision. Unethical is denying hospital treatment. Unethical is not taking into consideration the financial woes of one and refusing partial payment or weekly payments for dialysis treatment. Unethical is an unprofessional medical system and it's treatment towards non-residents.

Weekly Blood Results

Creatinine : 818 (up, bad) Potassium: 5.2 (down, good) Haemoglobin : down slightly (not good) Not good news, especially the creatinine . She'll up the dosage of the Recormon shot. The Doctor is not sure how long he can continue on this way for. It's in the hands of the Immigration .. it's time to bring in the big leagues. I'm glad we have the Doctor we have. Very glad.

Blood Labs drama.

Our doctor mentioned to us today that the laboratory that processes Larrys bloods every week have picked up on the fact that he is a non-NZ resident and told us to expect bills now, as we should be paying for them. She didn't know if we would be billed for back payments, which go back at least 6 months. She told us the weekly fee is somewhere around $40 and attempted to reassure us that this is a good price. It's not a good price when you factor in everything else we pay for weekly for medical expenses. Sometimes we take one step forward only to take three steps back. I will wait for the bill from the labs, but I'm considering bi-monthly (fortnightly) bloods instead. Enough time for Larrys arm to heal, he has track marks to put a crackwhore to shame.

Residency.

Application sent and received. It's incomplete, we are awaiting the Police Reports from the FBI. These were sent away at the beginning of July and may take up to 6 weeks. It's been 6 weeks.

Scheduled.

Laser surgery for Larry's eyes is scheduled for the 25th of August. Next Wednesday I believe. Don't confuse Laser with Lasik. He'll be getting the blood vessels in the back of his eye lasered shut, to stop the bleeding. Weekly bloods and Recormon shot on Thursday. Happy Anniversary Larry. 10 years!

Bloods - not the gang.

Thursdays blood results. Creatinine 778 (up 8), Potassium 5.4 (down .2) Still the same, this is good. As for the Recormon ... it's doing diddly squat right now. At this rate, if nothing has changed within the month it will not be worth the $50 per week for more shots.   Upgraded his pill box this week to a 16 Liter box from the 1 Liter one.

A bit of good news.

His blood pressure was 126/66 today. 150/80 last week. 280/110 last November. It can take up to three weeks for the Recormon to kick in. Second shot was given today. Thanks to the donations of all you good people, the eye surgery required was paid for today and will be scheduled ASAP and done probably within the month. No dice on the dialysis treatment as of yet. Or Residency.

Work.

A few have asked why I don't work, why I don't have employment to fund our medical journey. Let me tell you why. He has 2 Doctors visits a week. He can't see his medication to take it on his own, three times a day. He can't see what's in the fridge to make himself something to eat. He can't get out of bed some days because he's so tired. Simply showering takes all the energy out of him and I often have to walk him back to the room to sit down before he passes out. Blind people shouldn't light fires and he needs to be warm. He can't drive. At times when his eye sight is at its worst, it comes and goes - good days and bad days - where he can't see at all, do I really want to leave him home alone to sit in darkness with no one to talk to? This is why I set up a photography studio in our guest house. It's all I can do right now. I am not a caregiver. I am his wife and I am bound to accommodate him, and I fulfil that duty without hesitation.

Residency and such.

Somehow, I have faith in his residency being granted – if not, then appealed and granted that way. It’s a long shot, but we are prepared to wait for the outcome simply because we do not have the finances. His eyes are an important factor right now, and him seeing will be our key to getting up funds for everything else. If he can’t see, he can’t work and from donations we have received from his industry friends, we are able to pay for the 2 of 3 surgeries required to bring his eye sight back. What funds we have at the moment is set to go towards his eye surgeries then we can generate income for the dialysis. Pretty much, we’ve exhausted all support from family and friends and rightly so, it’s been too long to leech off family who need money themselves – but it has been greatly appreciated. We haven’t looked into fundraising as of yet. We are definitely prepared to wait it out for residency and have the attitude that no amount of money can turn what is evidently and ultimately in God

The Auckland Trip

The only reason it was worth coming, really. The Recormon doesn't seem to have kicked it. He is still unbelievably exhausted and the last couple of days he has needed Paracetemol (OTC Pain Relief). More bloods on Thursday, another shot of Recormon on Thursday. Creatinine 750, Potassium 5.6. Mudslides on the roads back to The Bay have caused hold ups in travel. We're here longer than we anticipated, but it's all worth it. The pictures tell all.

About religion.

A couple of comments we've received push us in the direction to seek Gods help. We're religious people. I myself was born and raised into a religious family - 5th generation - and the only thing that keeps us both sane through-out this whole ordeal is the bigger picture, religiously speaking. Often we both find ourselves sitting in the Doctors office listening to her explain that nothing can be done but dialysis, nothing can be taken except prescription drugs, no one else can be asked except doctors, and that's just not true. It's hard to explain to a medical professional that we have faith to get through this. It's hard to explain that the prayers from family and friends work and that our spiritual support system is doing more for him emotionally than knowing the drugs and injections are working. One of our Doctors told us that there is nothing God can do, but everything he can do. You can't get offended at that when you know he doesn't understand what we&#

Just one of those days.

Our Doctor doesn't recommend travelling particularly in Winter. Since his immune system is down, we've been pretty limited to staying at home. I have even restricted certain visitors because it's important he doesn't get sick. I woke up this morning, after the day we had yesterday, and decided I wanted to go away for the weekend. I don't like that the extent of his 'outtings' during the day is from home to the Doctors. We can't go to the movies because he can't see anything. We can't go to restaurants because he can't eat anything. We can't go visit with family members locally because they all have kids and we all know kids are germs on legs. We're getting out of town for the weekend. It takes 6 hours - for a normal driver - to get to Auckland from The Bay. That's 6 (4 maybe) hours in a car with the sun shining in on him. 3 days in my sisters overly sterile house and 3 days with our 2 year old niece Larell, who thinks she's an

A set back.

Recormon shot - done. Flu shot - done. 2 hours at the doctors - done. Prescription - done. It was a good day. We've been home for, I kid you not, 20 minutes and the phone rings. It was the Opthomologist who has been avid about getting the eye surgery funded. She rallied the group of doctors who were willing to do the surgery pro-bono. All of that fell through today and it's not going to happen because the Hawkes Bay District Health Board won't allow it. It will set a bad precedent. <> How humanitarian of them. < / sarcasm > I'm afraid the hole we're in fell by a few more feet. The scenario that's playing in my head is this. Immigration receives the residency application, call the local district health board to liaison. His records are bought up and everything that goes with it, including the subsidized prescriptions he's not supposed to be receiving, the lab work we've never been charged for, the dialysis he doesn't qualify for and now t

A question answered.

I mentioned I was the sole beneficiary to my Aunty's estate in an earlier post. I mentioned we now have a house and the question was asked by a few people, "Why not borrow against the house". It's not something I like to mentioned because it adds to the stress that makes up our situation and because it involves family, but I appreciate the questions and will make things clear as discreetly as I possibly can. Aunty Marva & Aunty Hop are my grandmothers two younger sisters. They were never married. Both were military women. Aunty Marva was in the New Zealand Royal Air Force as a Warrant Officer and later an Accountant. She retired when she was 40, in 1979 - the year I was born. Aunty Hop was in the New Zealand Royal Army as an Executive Secretary in the Enrolments Office and I have no idea of her stats. The day Aunty Marva passed away we needed her NZRAF number for the obituary in the newspaper. I entered the house, that was never ever locked, and pulled all her pap

Thanks.

The donate button has been up for a little over 24 hours, and people have stepped up ten fold and this is greatly appreciated. We've received a number of emails since then from people caring, suggesting, advising, donating and I can't thank you all enough. I have had a couple of emails with questions, valid questions and I will answer that in a seperate post. I just wanted to say thanks to everyone. It deserved a post of it's own and when Larry is up to it, he too will respond.

New Prescription

The kidneys produce a hormone that tells the bone marrow to produce more blood cells. My husbands are shutting down, making him critically anemic. The anemia sends him into a sleep cycle that can last days. Today we were prescribed Recormon. The active ingredient in Recormon is a hormone that stimulates the production of red blood cells. Recormon must be injected, similar to an insulin shot in the stomach. Weekly. Recormon is expensive. $200 for a month, and that was discounted. At least he'll be awake for a month.

His eyes.

If you knew my husbands profession, you'd know how essential his eyes are. His eye sight started to go around a year ago. We've been told it was diabetes related and we've been told it's been due to hypertension, hypertension that he's had for years. Either way, his sight was going. Somedays he can't see at all and I know this because I've intentionally flipped him off a couple of times to test that. Two things kill me regarding his eye sight. 1. He can't work and I know how much he loves doing what he does best. 2. When we saw James Camerons Avatar last year in the cinema, he sat there the whole time with his eyes closed listening to the movie because he couldn't see it. We went to a Optometrist a couple of weeks ago who pre -diagnosed him and referred us to an Opthomologist . 4 days later we had an appointment with the Opthomologist and I know some people who have been on a year long waiting list to see the same Opthomologist . Hemorrhages in

Residency Application - in this week.

There's three reasons as to why New Zealand Immigration will deny someone residency, and one reason is Kidney Failure. I'm hoping our sob story, which I have written and added to the residency application, will pull at the heart strings of some authority at NZ Immigration. It's a true story and we have the complete medical report that confirms that. Our Doctor, who we absolutely love, hooked us up with a local minister of parliament who pushed the work visa through. An Uncle, who is a Justice of Peace - there are four in our family/friends circle - got us hooked up with another Minister of Parliament. These two are equivalent to the area reps for each party (National-Labour = Republican-Democrats). As mentioned, we have four JPs, our Renal Specialist, our Eye Specialist, our Church leaders and around 100 of my family members who are all willing to be advocates to our application when they're needed. There are so many other local people we can include, but don't know

Support System

Yesterday the blog got over 100 hits. I wasn't aware that my husband had been sharing the link with fellow LightWavers and we've had quite a few emails, IMs, Facebook posts of support and these are very much so appreciated. The sole reason for this blog is basically the pre-cursor to going to the media with our story when the time comes. I need to record every part of unfairness that we are faced with, every denial from government agencies and medical boards and every move we make in the right direction only to be sent to the back of the line again. Blood tests are weekly now and today is that day. It's also August. 2 months have passed. I think our story is more important than Lindsay Lohan's release from jail quite frankly and somehow she made the front page today. You'll also notice the donation button to the right. Call me proud, it wasn't my idea, but you know what? I don't have 56k a year for dialysis treatment. I don't know who in my family even m

Dialysis.

Did you know Dialysis is $800 per session, 3 times a week for potentially the rest of your life? If you're not a resident in New Zealand that is. I forgot to win the lotto before my husband was diagnosed with renal failure. The New Zealand medical system refuse to treat my husband based on his immigration status. New Zealand immigration are going to deny my husband residency because of his health. I can't go back to the United States because of my residency status. Treatment is not 100% guaranteed in the USA - free of charge. And giving my spare kidney to my dying husband is un -ethical? We discussed going to third world countries for treatment, but I'll still need a lotto ticket for that too. We have had support from family, friends and church - and all have been much appreciated. We have had pushes in the direction for private dialysis treatment but even then, it's not cheap when you take into consideration that it may very well be for the rest of your life. Simple p

My spare kidney.

The Renal Specialist told us that you don't need to be a match anymore to donate a kidney. As soon as he told us that, I asked what I needed to do to prepare my body to give my kidney over to my husband who so needed it. He gave me all the information that I needed, and it was so. I was prepping my body to give him a kidney. Medically, I was lost in the midst of all my husbands medical woes. Eventually, our doctor called me in for a complete medical. Since we were now talking kidney transplants, I needed to be in check. Results: Borderline diabetes. Not surprising, I am Polynesian and an avid chocoholic. I was told that since the diabetes is blatantly present, me giving a kidney would not be ethical. For me in the future, if the diabetes gets worse I'd need my second kidney. No lifestyle change promotion to reverse the diabetes at all. I wasn't looking for a second opinion on that, but I got one 3 weeks later by way of a registered nurse at the clinic who told me that it wa

US Immigration - Finito

When you have a Permanent Residency Card in the United States, it's a priviledge - not a right. That's what I was told in the letter I got when they welcomed me to the country after screwing up majorly. Us coming back to New Zealand was only supposed to be short term. You may leave the USA when you have a green card, but you must return within a year to keep it valid. Things changed in our lives and I didn't re-enter the USA. In not re-entering the country, I automatically abandoned my Permanent Residency. I had this confirmed twice when I rang US Immigration in Los Angeles. I was guaranteed instant deportation upon arrival to the USA. That ended my spree with the US Immigration. It took me 7 years to get it, and one year to lose it. I still don't know how I feel about it based on that fact, but it is what it is. The option is there to fight it, but it's not priority at this point. I have my own insensitive country to fight.

Kidney Biopsy

It use to be every two weeks when they'd take blood from my husband. It's always an unpleasant thing getting blood drawn. By the good graces of our medical clinic, somehow we've not had to pay for blood tests when we're supposed to be and bringing this information to light could potentially burn our wallets, but what's to burn when there's nothing in there right? Right. Onward. The blood work for a while was stable. The lifestyle change that he was forced to make, because he couldn't stomach anything outside of apples and oranges, had slowed the renal failure - so said the bloods. We were able to get the kidney biopsy by way of Church support. The first time we went in I forgot to give him his medication, it was 7am in the morning - who remembers anything at 7am in the morning? His blood pressure was 8 notches too high. Postponed for a week later. A week later we walked into a room that had all the instruments laid out on a silver gurney. It wasn't prett