Weekend update

Hi everyone! I had a good Saturday - we went down to a big BBQ that some friends had. We were gone for about 8 hours - a record excursion for me! I didn't even need to go lay down in the middle! Silly, I know, but it's a big step for me. And I took a record low in pain medicine to boot! I'm just grateful to be blogging about happy things now! :-)

I had my 3 month bloodwork taken last week - I'm hoping to have the results back on Monday. My left lung has been achy and I've had a cough for the last couple weeks, so I finally went to Urgent Care for a chest xray. (My MN drs wanted an xray because of that pleural effusion I had when I was out there. And Urgent Care is just easier than going to my primary.) The xray was clear, so that's good. Just some bronchitis, likely due to allergies since it's been so windy. But the RN was concerned about my giant ankles. She recommended that I have bloodwork done to test my kidney function. Fortunately, it was already on the list of tests from last week, so I don't have to have MORE blood drawn. I'm sure that my kidneys are fine, but I sure would like to get all of this fluid out of my joints. My knees especially are so sore. There MUST be something they can do about it. I bought myself some compression hose tonight - see if they help any. Heck, I'm willing to shuffle around in my compression hose. They'll be a good part of my ensemble as I wheel through the aisles in my Wal-Mart scooter. Oh yeah - you know you're jealous! :-)

Cankles

Just wanted to pop in to say hi. I have some good news - the feeding tube is gone! It's all up to me now! It has changed my insulin needs a bit, but nothing totally out of control. We've noticed that my blood sugar goes a bit high after meals. I hadn't needed to count carbs or give myself insulin before meals. So, I was at 18 units of long-acting insulin; now I'm at 12 units of long-acting and then use the short acting before meals. I just started today, so we'll see how that works. Of course I was hoping for no insulin or only 1 shot a day, but it's all worth it to not have that panky pain ever again!!! I need to get a new glucometer - for those thinking of the one touch ultra mini, it is not accurate. I have to test my blood 3 or 4 times in order to get an average reading. For example, last night it read 463, then 176, then 199, then 128 all in a matter of minutes. Anyway, just a warning to anyone looking for a meter.

Thursday I go to the endocrinologist for my 3 month tests. They're doing the "Boost Test" where I have to drink one of those Boost milkshakes, then they take my blood periodically over 2 hours. It measures how well my islets are working. Then they draw blood for an A1c, which measures my average blood sugar over the last 3 months.

I'm still having abdominal pain and lots of swelling in my joints. I understand the abdominal pain, but not the joints. Those seem to feel a little worse with each passing day, though I'm not sure why. (Nor are the doctors.)  I didn't ask the endocrinologist the last time I saw him, but I will on Thurs. He's a pretty sharp guy and seems willing to cooperate.

OK, that's all for now. I'll update everyone once I hear the results. Ta ta for now!

Status update May 11

Well, things are about the same here. I've been feeling lousy for the last couple weeks. I'm exhausted all the time, nausea/vomiting, and lots of abdominal pain. My joints hurt horribly. I'm a wreck, eh? My primary dr has referred me to a rheumatologist, but their soonest appointment is in july. Really, even my worst days now are better than my best days when I had a pancreas. I just need something to complain about - otherwise what would you have to read? I spend a lot of time curled up in bed with my heating pad. I know I feel better when I do get up and get some sort of exercise, but convincing myself of that is the tricky part. My definition of "exercise" is certainly held loosely though, and when I try to push it too much, I end up hugging the porcelain god. Which is basically daily.

I think we're starting to get some answers now, though.   My blood work just came back and my liver numbers are out of whack. (My Alkaline, ALT and AST are super high.) Typically, those #s mean either an infection in my liver or a blockage where they re-connected my liver to my intetine. But, my White Blood Cell count is ok, so that would rule out infection. And my bilirubin is ok, which rules out a blockage. So, they're putting me on an antibiotic hoping that will do the trick. Otherwise, I think a blockage means surgery. On top of it all, I'm terrified that my liver is going to reject my islets. My blood glucose has been on the high side (around 140 which really doesn't worry the drs). They say when you're in pain, your blood sugar goes up. So, I know WHY it's high, I just hope it doesn't damage my little islets.

So, I'm asking for everyone's prayers again. Please pray that the antibiotic does the trick and that there is no damage to my liver or my islets. Pray that this relieves the joint pain. And pray that I start to get my energy back. I know all of you have been so wonderfully supportive with your prayers, and you've gotten me through much bigger crises than this! So thank you everyone, for all your love and support. I just didn't expect to need these prayers this far out from surgery. Also, please pray for God to watch over my grandpa Jim. He is not doing well, and is now in hospice at home. I just want him to be comfortable and surrounded by our family who love him so much. For those who cannot be there in person, we are there in spirit. And Congrats to Courtney and Sam on their big college graduations! It really is a TOUGH thing to do, but you persisted and you made it! I still have nightmares of realizing too late that I was missing one class in order to graduate (usually math, which is funny...). Thanks you everyone for your prayers and support. I love you for all that you have done!

Endo appt

Just a quick update for all my fans... ;-)

I saw my endocrinologist on Tuesday. The last time I saw him, I was considering the TP-IAT. He asked how I was and I said, "Here I am, post pancreatectomy!" He said, "How much did they take?" I said, "All of it!" He said, "No, your pancreas. How much did they take?" I said, "All of it!" He said, "Wow!" Ha! He said that I looked great and that I was managing my blood sugars amazingly well. He read through all the info that I brought from MN (a letter from the MN team describing what I had, and what they recommend for follow-up). He was wonderful and willing to do whatever is needed to accommodate the MN team. It was such a huge weight off my shoulders to know that he is willing to work with my MN team. So, I go back on May 17 for my 3 month post-op tests (bloodwork and a glucose tolerance test). I can't believe it's been 3 months! In some ways, it seems like forever ago and that panky pain is fading into the distance. On the other hand, I am still facing the daily battles of recovery and it feels like I am never going to be "normal" again.

Yesterday, I was driven around by a new friend, Suzy. Lew met her through Bill and Lisa, but I had never met her before. Yet she was willing to drive me to dr appts and run my errands while I was at the dr. Then she came back a few hours later to take Kyle to karate. The generosity of people just continues to amaze me. I am so blessed.

Overall, I am doing very well. I'm still very tired, but I've been able to run some brief errands or make dinner for the family. Yesterday I made a very yummy pork tenderloin in a root beer marinade that I got out of my diabetes cookbook. The whole family devoured it! Today is tougher - I haven't been able to get out of bed all day. All my joints fill up with fluid and it's horribly painful. I think this is a common issue after surgery, yet the drs don't really know what to do about it. If anyone out there reading this has found anything that works, please let me know! I'm using Lasix as a diuretic and my regular morphine for pain. Anyone?

Fortunately, I have more good days than bad, and usually my bad days come after over-doing it on a good day. What's frustrating is that a "good" day means going to the doctor, stopping at Target for a vacuum belt, and making dinner for my family. Just that will render me bedridden the next day. It's frustrating, but I'm learning to be patient. Sadly, I'm a slow learner. We're having some friends over on Friday evening, so I'll take it easy tomorrow, so Friday should be fun! I think Lew was a little shocked that I said yes when he suggested it. We haven't had people over in a long, long time. So, I'm taking baby steps, and just have to keep reminding myself where I was 6 months ago.

OK, OK, that's all. I always think that these posts will be short and sweet, but I end up rambling on. This post has taken me all day to write. So now I am off to bed - night night!