This past week has run the usual gamut of ups and downs. It started off on an unusually high note on Sunday as I got up and went to church with the family. This was the first Sunday that I've felt up for it since November. I made it through without any issues so we decided to celebrate my newly returned appetite by going to Macaroni Grill for lunch afterwards. I surprised myself by eating a normal meal, perhaps even a little more than one should at a "normal" sitting. The rest of the day went pretty well although I didn't really feel much like dinner later on, but that was more about the large lunch that I'd had than any feelings of sickness or appetite loss.
Monday was a holiday and is mostly a blur at this point as nothing stands out in my memory as particularly good or bad about the day.
Tuesday was a pretty good day as well for me, however my wife was under the weather which left me having to balance work with making sure that she and the girls were taken care of throughout the day. After I took the girls to gym practice it started taking a bit of a turn for me. After going to bed I didn't sleep for long before waking up with pain in my right leg. This started a cycle of bouncing between sitting up in the living room waiting for meds to kick in then going to bed until the pain came back and repeat until morning came and I had to get up. I think I only got about 3 hours sleep in all.
Wednesday, the pain was pretty persistent all day as I had to take a Vicodin, or two, regularly throughout the day and into the night without it completely going away. Accompanying this was some pretty severe constipation throughout the day which was pretty much the source of it all. I finally got it to pass that evening only to be kept up half the night with diarrhea. Every time I'd star to go to bed, I'd have to run back to the bathroom. This kept up until around 2 or 3 when I was finally able to get to bed and sleep.
I got up today feeling much like I did on Wednesday but somehow things calmed down by noonish and I felt better the rest of the day. I put in a call to the pain specialist to follow up with him from my appointment last week. I told him about the recent days' events and he said that it was unfortunately very common among patients in my situation to have bouts of extreme constipation followed by diarrhea. He said the main concern is the constipation since it is causing the pain and told me to up my dosage of the laxative that I'm taking. So we'll try that and see what happens. It took me a while to get to bed tonight and now I'm up here at 2:00 AM with some minor constipation as the roller coaster ride continues. We'll see what the extra dose of laxative does for me. I was hoping to get some sleep tonight as I've only been averaging 3-4 hours per night, but it's not looking to be in the cards. Perhaps I'll be able to catch up this weekend.
For some reason, it has seemed extra cold in the house the last couple of days. My wife has felt the same, though she had a low grade fever for at least a couple of them. It's weird, because the house has been at the same temperature that it's always been but for some reason it just seemed drafty even though this house is sealed up pretty good. The temps outside have been cooler, in the 20s and 30s with a wind chill in the teens, and somehow that cold has felt to me like it has permeated the house. The girls, of course, have been running around in short sleeves and bare feet without any complaints so I think that it must just be a side effect of feeling crummy. This morning I just couldn't seem to get warm so layered up in a t-shirt, sweater and heavy hoodie in order to get warm. I also had to put on some thick wool socks which seemed to make the most difference. All of this despite keeping the fire going strong in the wood stove all day.
I still tell people who ask how I'm doing that I'm trending upward and I do believe that to be the case, though it seems to be upward in a 3 steps forward, 2 steps back kind of movement. Overall, when I think how things have been just a few weeks ago, I am doing better. The toughest thing to realize is just how short of a time I've been at this. I'm still just under 3 months since my diagnosis and even less time under treatment. Though it has seemed like forever, it's really just been a blink of an eye and so much has been packed into that blink that it's already tough to think back and remember it all. I had hoped to be mostly back to normal by now, but what do I know about it. I really have no experience to point to in this. I'm sure there are some out there who have been through it before who would read this blog and be in disbelief at how far I've come in such a short time. As I've said before, patience has never been a virtue that I've embraced.
Hey Clint - You could also see if there's a Facebook group page. I found one on heart transplants so I'm sure there's one out there. That would give you a means to ask questions for people that have been through it. Everyone's experience is different but I think it would still be helpful.
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