No promise for tomorrow

Joe came home from the hospital Friday night. I braved high winds, rain, and tornado watches to go get him at 10pm. LOL He was sick in the car several times because he had dialysis right before we left. The dialysis nurse up in Fernandina was really nice, the regular nurse was ditzy. So we went to the first dialysis session at a clinic on Saturday. I wasn't able to go and sit with him, even though I'd been expecting to. So I waited for 4 hours while they did it. I watched several people go in and out, some in wheelchairs, one on a gurney (sp?), all of them old and sick looking. It was depressing. I knocked on the treatment room door to check on him after 4 hours and I was told his blood pressure dropped really low, 80/something and that he had to wait until it came back up to leave. I walked back to the waiting room crying out of frustration and scared for him. The nurse didn't even change his bandage around his catheter (said it looked "fine") and today when I looked at it, it was bloody and gross looking. That bitch will be hearing from me about this. I met with the nurse practioner for a minute (she said she needed to get home, blah blah blah) and gave me a little information, but still not nearly what we need to know. I don't know when these people intend to give us the education we need. That's another thing we need to talk about. I may just talk to the doctor because I'm tired of dealing with asshole nurses that aren't doing their jobs. He vomited several times in the car again and had bad cramps (2 signs they may have taken too much fluid off). When we got home he was exhausted and went to bed shortly after that. Before he went to bed I asked him if he took a particular medicine he's supposed to be on. He said no, that it gives him muscle cramps and he didn't want to take it. I asked him to take it since the NP said it would be good for him to have it, and he did take the medicine. He spent the rest of the night writhing in pain from the horrible muscle cramps. I cried again because I felt so bad for asking him to take it.

Today I dropped him off at the airport for his flight to Ohio. I'm so scared that he'll get really sick while he's there and I won't be there to help him. He'll be gone for 2 weeks, and I know I'm going to be worried every minute of it. I just recently (like yesterday) noticed a sore-type spot on one of his toes that has me worried. There was some pus coming out of it and the skin around it is very thick and several layers are peeling majorly. I told Joe to tell the nurse about it at the dialysis clinic in Ohio and have someone take a look at it. With him being diabetic plus now this kidney stuff, you can't be too careful.

I'm hoping for the next 2 weeks he watches what he eats and drinks and doesn't come back worse off. I just have this horrible feeling that when he comes home he's going to look like the walking dead or something. I wish I could be there to make sure he's being taken care of (by both the medical staff and by himself).

Joe's doctor decided to put him in the hospital - AN HOUR AWAY - because he couldn't find a spot at a dialysis clinic yet. So yesterday he went in. He had his first dialysis treatment, and they pulled 2 liters of fluid off him. Today he had another, and pulled a similar amount off. He says he's feeling ok, just a little tired, and bored out of his mind. I had to work today and I wasn't going to drive up there again because I didn't have any gas money but one of my coworkers gave me some - I wasn't looking for charity or sympathy, just mentioned I wasn't planning on going up and why, and she gave it to me. I was very (pleasantly) surprised. So my mom and I drove up tonight and stayed for about an hour. Joe is going on a trip - leaving Sunday or Monday - to Ohio for work training. I really wish he wouldn't go, but he's determined to. They have him set up to do dialysis there at 5:30am 3 days a week. I'm just worried he'll be too exhausted to be able to concentrate in class, plus there's the matter of keeping a good diet up there. I guess I just have to let him handle it. He'll probably be able to come home from the hospital tomorrow or Saturday, just in time to leave again.

Told them we need to work on the communication. They never told him he might have to be unconscious for the surgery. They are taking forever to get back to us about when dialysis starts. They are not telling us if his meds need to be changed. They are still working on getting him set up with the insurance - I guess getting the dialysis pre-approved. He has to be tested for hepatitis tomorrow so they know what machine to put him on. I'm not sure why that matters exactly, but I guess it's good to know anyway. They are expecting dialysis to start Thursday or Friday, and supposedly we will have a sit down with social worker and dietician to work on plans and explain everything. He is expecting to go to his first session and see how it goes, but regardless fly up to Canton, OH for work training 2 days later. I think it's ridiculous and that he should reschedule the training for a few months from now, but he's made up his mind he's going. I'm worried how his work is going to adapt to this. I know by law they have to try to accomodate, but there's always a way around it. Right now it looks like he'll be in dialysis 3 days a week either early in the morning or starting around 3pm. Neither of which are good if you are trying to work during the day. I hope his job doesn't screw him over.

I mentioned previously that all my plans are changing. I want to elaborate on that. All along, my dream was to buy a house on some acreage, raise some goats and do the whole green-living thing, and make babies and live happily ever after. I'm afraid that's not going to happen anymore. I need to work on finding a job/career that can get me making pretty good money quickly in case he needs to stop working. We need to get out of this hell-hole we call a rental home and into a nice, cleaner (no mildew) bigger place of our own. We need to bulk up our savings. I don't even know if we can try to get pregnant with all this. There's no way I'm going to ask him to submit to more needle sticks just to try to conceive, and actually I don't know if it's safe with the meds he's going to be on. On the other hand, I don't know if we could get approved to adopt - something we really want to do - with his condition now. It's very frustrating. I don't know if he's feeling the same since he doesn't seem upset or worried. I don't want to talk about this with him right now because I don't want to stress him unnecessarily. ((Sigh)) That's all for now. I'll update more when I hear something new.

Friday, 1/6/06, my husband called me at work to say, this is it. He has to start dialysis. It had been a waiting game for the many months in the past. He's diabetic and was told his kidney function was way below normal. His nephrologist (kidney doctor) said it was a matter of time and the goal was to make his failing kidneys last as long as possible. I thought it would at least be several years before we had to deal with this. My husband has been in and out of the nephrologist's office for the last month doing labs after labs, trying to figure out what was going on. Well, what's going on is his kidneys are crap and now the fun with dialysis begins.

After he called me, he went to the hospital and had an outpatient procedure to place a catheter in his neck that will be used for the dialysis until a more permanent plan is formed. The doctor didn't tell him he would be completely asleep for the procedure and would not be able to drive home, so I didn't leave work as we both assumed it would be quick and simple. Joe ended up having to call my mom to pick him up after the surgery. Thank God for her. He now has tubes sticking out of his neck that hurt him by pulling on the sutures sticking through his skin. He seems to be handling this OK so far, but the dialysis hasn't started yet.

How am I feeling? I'm scared. I'm freaking out. I'm spending -every- waking minute on the internet trying to find out more information about what to expect. I feel like I can't really tell Joe how scared I am because I don't want to stress him out or scare him unnecessarily. I've always thought that once he has a transplant he'll be OK. I didn't realize that he'll have to be on anti-rejection drugs for the rest of his life (or however long the kidney lasts). I didn't realize that the average life expectancy for dialysis patients is 5-10 years after starting dialysis. Granted this average is thrown way off by the many very old people that start treatments, but I am in no way ready for him to die. Die. What a horrible thought. I find myself tearing up several times a day now. I don't want him to die. We want to buy a house and live there forever with our many kids and dogs. We want to have kids, and I don't know if we can anymore. What happens if he can't work anymore? I can't support us and our dreams on 8.5o an hour. How selfish of me to even worry about that when he could DIE. All of my "plans" are changing. I'm re-evaluating everything. No longer is it important to live in a big house on 20 acres with my farm animals. Now I just want him to live a long and happy life -with me-. I stupidly didn't think things were this serious.

We are going to call his doctor tomorrow morning to see what the game plan is. I'll update after that.