Saturday, January 24, 2009

The latest updates on us

For some of you, this will be a repeat. But for those who were not able to follow me on Facebook, this update is for you. Remember, I am real new to this blogging thing, so bare with me.

5 years ago, we tried to get life insurance but Joe was declined due to protein in his urine. The doctor said that some men have that, and we didn't pursue it. 4 years ago, we tried again for life insurance. Declined again for the same reason.3 years ago, same story.

At this point, you would think that we would begin looking into this "problem", but it was the same month that we put our CA house on the market, sold it, got jobs in AZ, bought a house in AZ, moved to AZ, and then found out I was preggers again. Needless to say, we sort of forgot about it.

Joe got a job with ADOT (the AZ equivilant to CalTrans) 2 years ago. Part of that job required a commercial driver's license. He didn't pass at first as he had... yep, you guessed it, protein in his urine. He drank fluids, went back and passed. To keep your CDL you need to have a physical every year. Joe went through the whole shebang last year. Didn't pass the first time, drank alot, went back, and passed.

Fast forward to about 2 weeks ago. Joe has been having swelling of his feet. BAD swelling. And if he lays down, his face gets swollen. Terribly swollen. When it became painful, he finally thought about going to the doctor. Oh yeah, he hasn't had insurance for a year, as it was too expensive for us. Well, when I signed my contract in September, I added him and thought that I didn't want to take the chance anymore. We would find the money somehow. I am soooooooooo glad I did.

His doctor ran an EKG right away and that came back clear. Then he ran blood tests and had the results in one hour. Not good. Then he ordered a 24 urine test. In the meantime, Joe has to renew his CDL again. He goes, and same story. Except this time, he tried 4 times over 2 days and still never passed. The doctor told him that he will end up on dialysis if he doesn't get this under control. This hit Joe like a ton of bricks. He looked frantically in the phone book for a kidney spcialist, but there are none on the mountain. He called the hospital, grasping for straws and turns out that the lady who answered knew of a doctor who comes up from Phoenix once a month. Joe called and once they got his test results they squeezed him into an appointment for this Tuesday. We are so blessed that that particular doctor was coming up in a couple of days.

Tuesday, we went to the Kidney Specialist, still not knowing exactly what was going on. We had looked things up online and had guessed that Joe had kidney disease, but we didn't know for sure, the extent of it, or even which kind. When the doctor came in, he was using all these big words and talking so fast about treatments and whatnot. We asked, "so, does he have KD?" The doctor said, "well, yes, he's in stage 3." When we were looking things up online, we found the scale of stages. Stage 1 is the beginning, moving up the scale to stage 5 being kidney failure requiring dialysis or transplant. I thought Joe was a stage 2. We also thought that we were going to walk out of there with a prescription to take down the swelling and see the doctor again next year. Not so much.

The doctor started to have his nurse call the hospital to get ready for Joe. Hospital! We asked at what time does he need to be there. The doctor said, "right now." No going home to even get a toothbrush. Do not pass Go. Go directly to jail (oops I mean the hospital). They had to drain him of the excess fluids Tuesday night and then do his biopsy on his kidneys Wednesday. Since being checked in yesterday, he has already lost 4 pounds. At least the swelling is almost all gone.

The purpose of the biopsy is to determine which form of KD he has and how bad it is. He had to have a CAT scan, ultrasound, and then biopsy. He was supposed to be released today (Wednesday) at noon, but he had bleeding from the biopsy and they want to observe him for one more day. Hopefully, we will be able to bring him home tomorrow. Then the doctor says that Joe can't wait the one month to see the doctor again, so he has squeezed Joe into an appointment on the 29th in Phoenix. We don't know how often Joe will need to go in for treatments, but we can't keep running up and down the mountain (3 1/2 hours each way). We are seriously looking into moving to a city.

The biopsy confirmed the Kidney Disease. It also confirmed Stage 3. Finally it confirmed the type of disease. Membranous Nephrology. How's that sound? Now the doctor wants to see what is causing it. It could be caused by lupus or it could be genetic. If it is lupus, they can treat that. If not, then we treat this. So, more blood work.

On to treatment... the doctor wants to treat this with medication first. Joe's kidneys are spilling all of his protein and we need to slow them down. He is on meds now and it is a trial and error thing. We try these meds for awhile (3 months) to see if they solve the problem. If they do not, then we try transplant meds. Again, if they don't work, we try chemo. The doctor thinks that it would take Joe 15 years of no treatment to get to Stage 5, since it took him this long to get to stage 3. And he thinks that in 15 years, we may have new drugs and treatments.

Until then, God has been so good. Joe and I had alone time yesterday (I can't even tell you when we last had that) and really talked. This is bringing us closer together and to God. We are focused on what is important in life. And we have been completely blown away by all your kind words and gifts. Just know that each and every one is much appreciated

When I got home there were 2 envelopes in the mail. Before I begin, did you see the documentary "Sicko" by Michael Moore? I know, I don't like Michael Moore, but it was eye opening. I should have seen this coming. The first was from our insurance saying that they have a pre-existing condition limitation and they don't want to pay his bills for the Kidney Disease. Why the heck do I pay $275/month for him for insurance? There's no way we can pay the hospital bill (3 days, 2 nights, CAT scan, ultrasound, biopsy), the monthly appointments with the specialist, and the myriad of pills he is taking. No way. Maybe before the housing market crashed we could have used equity, but there is none now. You know me, I don't like debt. I don't like the feeling that we owe someone.

But, as if that wasn't bad enough, I opened the other envelope.The second one was from the state. We had applied for state aid (Californians, it's like Medi-Cal, in AZ it's AHCCCS). Denied. We had applied for Joe and the boys because we couldn't afford to pay $550/month for Joe and the boys. We were thinking that even if they only approved the boys, that would save us. But, alas, denied.

Just a little update. How do I summarize this?.... a little up and a little down. Joe's health continues to suffer. He was taking his Lasix pills to control the swelling, but he had to double up to keep the swelling down. Then he ran out. While we were waiting for the doctor to refill the Rx, he swelled up bad. It was up to his knees. When he woke up Thursday, his right eye was swollen shut. He is back on the Lasix now, but it only treats the symptoms, not the source.

Joe's boss told him that he won't need him until March, maybe. Maybe? How do I tell my children we'll eat tongiht, maybe? How do I pay my mortgage with "maybe"? There are just no jobs. Miraculously though, we have had all our needs met. We will sometimes come home to find food or clothes on the doorstep. We will sometimes find money in the mail. We are living by faith that God will provide. Funny thing is, it's actually less stressful.

The insurance is taking our case and the state will probably take the remainder. Probably. Even the hospital is involved and will negotiate. I refuse to get stressed out over it. It's really not even a resident in my brain.

We just got back from the doctor for Joe. Good news. Joe is holding his own and the doc is going to keep him on the current meds (instead of trying the transplant meds or chemo meds). Also, the doc feels so good about Joe, Joe doesn't have to go back until 2 months. That is a major blessing. but the best part was when Joe was talking with the doc. The doc asked how he was feeling and Joe told him that he was feeling good. Then Joe said, "most of all, I have faith". Sweet words to my ears.

where Glory meets my suffering