exhaustion

Tonight, I think I have a new definition of the word exhaustion. But I don't know how to describe it. I don't know when I have been this worn out. I'm not sure that I can physically do another set of stairs tonight. But I have to, to get to bed. It's only Wednseday. How do I make it through the rest of the week?

He was in a low from 2 pm - 7:30 pm again today. Nothing could get him above 52. Apple juice, smarties, bananas, peanut butter...nothing worked.

I think he took too much humulin this morning. They have been changing his dose about every 2 days. I wrote down he was supposed to take 20 - he said he took 22, he thought that's what he was supposed to take. He's on prednisone and should be going high. Instead, he's going low. A 5 1/2 hour low, testing every 15 minutes. His finger tips are so filled with holes it hurts me to look at them. He hurts all over and just feels sick.

I know why I'm worn out. Not to mention running up and down stairs, it's the stress of everything catching up with me right now. The stairs are just the physical part of it....the emotional tireness coming out in the physical activity.

My sister is here helping out. She said she just doesn't know how I do it. I spent 2 hours tonight getting caught up in the charting as we have an appt with nutrition tomorrow. And then he has a 2 hour ultrasound called NIVA. Supposed to look at the vessels taking blood to his back - related to the back pain he is having. He is completely stressed out about having to lie still for another 2 hour test as he knows the pain is going to be more than he can stand. I told him he simply has to ask them to manage his pain.

There are days like today that I think I no longer have a life of my own. I have no time to do any of the things I did pre surgery. The good thing is that I don't have much time to think about what I've given up or why, and less time to get angry about it. Way too tired with no energy left for anything.

DW

The ups and downs of post surgery

Yesterday morning, he took 22 cc of humulin and he was only supposed to take 20. I was wondering why he got confused...and then remembered that this can happen post surgery. So of course, he had a couple of major lows in the early afternoon. And I don't think he recognized them coming on. So I am ever so grateful that he is now testing on a very regular basis.

He was pretty depressed most of yesterday as well. But today, he woke up in a much better mood. He actually did his 30 minute exercise without a reminder. And he maintained his fairly good spirits most of the day.

We got a call from vascular therapy that he has been referred for a NIVA - non invasive vascular assessment for his spine. And then a consult with that department once the ultrasound is done. A 2 hour ultrasound! That should prove interesting since he can't stay in one position for more than about 5 minutes without pain.

The gout infection has cleared up and he is finishing up the rest of his prednisone burst. I am so far behind on charting, but will get that caught up tomorrow.

My sis is here visiting this week and I'm getting some much needed "therapy". She is working hard to get me back motivated to do some art, so that is great.

All-in-all it was a good day today. :o)

DW

Post-surgery emotions

I had been warned that open heart surgery can completely change a person's emotions. And that for the first 2 years post surgery, there can be lots of emotions, depression, etc. But I just was not prepared for what he did Saturday morning.

I woke up and was working on my laptop in bed. It was almost 9 and I decided I'd better wake him up. So I called to him and he didn't answer. I called again. So I turned the light on and he didn't move. He wasn't moving. I got up, talking all the time, telling him it was time to get up and still no movement. I put my hand on his shoulder. I really thought he had gone into a coma. I wasn't going to panic, but I was already thinking about what to do - call 911, or stick OJ down his throat. I started to take his CPap mask off and he grinned.

I just burst out into tears and came downstairs and cried so hard. I didn't know whether to get madder than I have ever been at him, or just give up.

He did this once before when we were at a friend's house and he promised me he would never ever do it again. So I know I can't ask him to promise me that again. He is not capable of keeping a promise. He came down and was truly sorry. But I said to him that he can't possibly understand what he just put me through. I said that I had sat in that surgery room for 8 hours, praying non-stop for him. That I had gotten everyone I know in the entire world to pray for him. And now, he can merely joke about it and act dead?

He agreed that he can't know what I'm going through. We didn't talk for the next few hours. It wasn't a tense silence at all...it was a remorseful one. I know I can't change him. I know that he will never understand how much I love him. And it simply pains me that he doesn't love me enough, that he doesn't care for me enough to keep me from this kind of needless suffering.

When he does go into a coma I will probably just stand there and punch him to death. It's going to take something for me to ever believe he is in a coma at this point. And I explained that to him. But he just doesn't get it. He doesn't see how fragile life is right now. I think he doesn't care.

And I thought I was worn out before? I had nothing to give him or anyone else all weekend long. I was just completely drained. And he doesn't even understand that.

I don't want to stay, but I know I can't leave. He can't even drive himself to the doctor's right now.

I want to hurt him so much. I want to make him feel this pain. This utter sense of violation. This sheer hopelessness. But I don't think I ever can. And then I feel guilty for wanting him in more pain after what he has just been through.

And no, he was not in a sugar high or low....he just was not thinking about how his actions might affect me so soon after surgery.

So then yesterday, he was depressed all day long. And I'm not sure why. I think it's because his son had invited him to attend Easter sunrise services at their church and we, together, had decided it was not the best thing to do, that it would be too much this close after surgery. The church is about 18k people, the services are outdoors, early, cold, and quite a long drive from here. And I still think the decision to not go was the healthy choice, but he was depressed all day long. Wouldn't talk. Wouldn't smile at anything. Just sat and moped all day long. Sigh. I don't know which is worse. That deep of a depression, or risking the outdoor elements to go to a church.

Here's hoping the week improves.

DW

The nephrologist

Said he doesn't think hubby's kidney failure is from the diabetes.

Go figure.

I'm trying to figure out if the nephrologist is an idiot, or uneducated, or just doesn't have a clue?

He was a pretty young guy.

He wanted to reduce the alopurinol from 500 mg to 150 mg. Hubby takes it for gout and to keep his uric acid low. It's working just fine. Why reduce it? Especially since hubby just had a MAJOR gout attack last weekend.

So the doctor at least agreed that he would make that a referral to hubby's GP and let the GP (who just saw the gout) make the call.

It's like they all just look at a chart and tell him what to do. But no one is looking at the whole - the entire picture - to see what might be best to do.

Lower the alopurinol, increase the gout, increase the prednisone, make the glucose go up, increase the insulin......

Am I the only person on earth who sees the path this would set him on?

I honestly think none of his physicians really care.

And that is so sad.

DW