The randomness of me

Well we have returned from Jasper late last night, and Sarah and I had a great time!

Some Highlights:

Columbia Icefields - Sarah's 1st time there
Athabasca and Sunwapta Falls
Horseshoe Lake - Sarah jumped into the 2 C water!
On the beach at Lake Edith
Horseback Riding - my 1st time!
Canoeing on Pyramid Lake
Old Fort Point
Picnic Lunches

I will post pictures after I get them developed....

The place we stayed was great, the weather was beautiful, the company was perfect.

OK, so really not too much to tell to be honest. Clinic went very good yesterday - I was out of there in less then an hour - which is awesome. All my numbers are looking great - except for my creatine (the Tacrolimus is hard on the kidneys). So we lowered the dose (means less pills for me!). Other then that , we talked about a 2nd transplant, and agreed there is no need to plan for that at this time. I also had a few other various questions, and they were all answered the way I hoped!

In the afternoon I went to see Dr Blais, my family doctor, to fill him in on what has been going on, and he was very interested in the results, and wants to be in the loop. It is nice seeing your doctor when nothing is really wrong, and you don't need various things done because of it.

Other then that, Sarah came for lunch yesterday - and we shared some dinner as well. Mmmm yummy goodness!

Tomorrow I have an interview for the new diabetes radio program that is coming on this fall on CJCA radio. The first show will be SUnday September 11, at 9 pm MST (and Mom, you should be able to listen online to the program!) I will be talking about my support group for this show, and at some time in the future, will do a segment about my islet cell transplant.

After that is all done tomorrow - we are leaving for Jasper at about 5, and returning on Sunday. I want to take Sarah to all the cool spots I love, as well as all the places she wants to see. Will be a great time - and we should have a bunch of pictures when I return.

It is finally nice out today - sunny anyhow, but the temperature is coming back up too.

The islets are doing great, I have had no side effects at all in several weeks now. My insulin needs are very low, and most important - my sugars are incredibly stable. I had a 9.8 the other day and was in a total panic - and then I realized that 2 months ago, I would have been happy with a 9.8. Now I am so not happy with anything but a 5.0 to 6.9. Even 7.5 or similar makes me think - ok, why is it so high!

I think it is pretty cool how my perception and attitudes have shifted in less then 40 days. This weekend will be filled with fun things again, with lots of Sarah, a BBQ with my school friends, and lunch with my Dad and his wife on Sunday. Then just 1 more day of work on Monday, and 1 week off!

Sarah and I are renting a car on Thursday the 25th, and staying here, for only 75$ a night, as compared to 130 or higher in hotels. We are totally going to be tourists for those 3 days, and I am looking forward to every second of it. Hopefully she enjoys all the places I want to take her too.

Hmm.. been awhile, let us recap the weekend!

Friday night - went shopping with some of Sarah's friends and had wings at Earls. Fun times.

Saturday - went to Fort Edmonton with the Grad Students Association, and had such a good day. I have not been there in a really long time, but we had so much fun. We spent the better part of 7 hours there, and walked home (a long walk, but doable). Later that night I went over to Sarah's and we watched Blade with her roommate, and then just hung out.

Sunday - we had a BBQ at Hawrelak Park, and it was a blast. There were about 14 or 15 people there, and we cooked burgers, people brought soup, desserts, chips and pop. We ran around and played frisbee, went for a bit of a boat ride on the pond, and just generally had a really really fun day.

Who knew weekends could be so much fun?

Today I got the results of my arginine test that I had on Friday that measures the function of the islets. My islets produced 12.5 units of insulin (the average normal person produces 29) But the thing that is neat, is the average islet cell recipient only puts out 5.5 after 1 transplant. Looks like my 300,000 + cells are functioning very well. I was quite pleased to hear those results, and the nurse who did the test was pretty impressed as well.

Totally did a cleaning number tonight, whew! Got groceries - and instead of worrying about the cost of them, I worried about the nutrition of them. Spent a lot more money then usual, but I need to eat healthy for my cells!

Tomorrow in the morning I am going for an Arginine test - which measures the function of the cells I think. They told me that it does not take much time, so that is good.

Early to bed tonight I think, as I am pretty beat.

About this time 4 weeks ago I was lying on my side in the transplant ward, a little cranky at the every-15-minute-finger-poke.

4 glorious weeks later, I am doing great.

Clinic went well today - but was really long! I was there for a little over 3 hours, seeing the nurse, dietician, resident(s), doctor, and researcher. Whew. Good news is that everything is continuing on fine. Dr. Senior - one of the endocrinologists I have not seen yet - is really nice. We went over all my bloodwork, and he said to him everything looked really good. He, and both the residents took a good look at my eyes, as there was a wee bit of concern a couple of weeks ago, but he said they look great. And, to top it off, he told me that I could take a week off from coming to clinic. So that will be nice. That tells me that I am doing well I think.

Talked to Grace, the dietician today, as I was a little concerned about my appetite, and not taking in enough nutrients, and she identified a few little things that I can do to help myself, such as a bed time snack, and trying to up the protein a bit, but other then that she thinks I am on the right track.

Talked to Parastoo, the research coordinator, and they want me to have a biopsy of my liver done. This is completely up to me, and before today I was more in the 'no' camp, but now I am pretty undecided. Apparently the goal is to get a few little samples of my liver - and hopefully one of those samples will have some islets - so they can take a look at them, and see what they are doing. If I remember correctly, the idea is to gather data, so they can compare to other patients if (big if) something goes wrong with the islets. There is really no danger to me, or my islets, and really the whole thing is less invasive then the original transplant. It would be a day at the hospital though, but she told me that Dr. Shapiro has done many many of these in the past. I think that they would want to do this sometime in October/November, but I do have a month to decide.

What a great weekend. Sugars pretty good except for the 1 low, and I ate better then I expected.

Sarah came over last night, and we went for a walk in my neighborhood, and sat on a bench and watched the sun set. Such a simple activity, yet completely fun.

On Saturday night, we played card games with a few of her friends after coming home from visiting my sister.

Other then that though it was a pretty lazy day on Sunday filled with naps, and a bit of laundry.

Off to get some bloodwork and then off to the old grind. This week I only have a 4 day work week again, as I took the day off on Friday - just for fun.

Ah... the weekend, where you can relax, sleep in and take it easy!

Had my 1st real low today, 3.6, pretty much as I am writing this! (but I had some food and drink). Did not feel it coming, but once I saw the number I can feel it a bit more. I just need to become aware of the little signals again.

Sarah made me this great sandwich for dinner last night.

Raisin bread, Tomato, Avocado, Swiss, Onions, and Garlic. Made like a grilled cheese, it was freaking awesome! I suggest you try it now!

Today we are going to meet my sister and see little Nathan. Much fun will be had by all. I can't wait.

I am very frustrated by my lack of appetite for the most part. Usually I have always been able to eat what I needed to, but this week it is proving to be a real challenge. Take lunch for example. I went to A&W to get a burger and fries - thinking "Hey, I like burgers, I like fries. I will be able to finish this easy!" Well such was not the case. I finished most of the fries and about a third of the burger. Sigh.

Tonight for dinner I was totally not hungry, so I had a couple of bananas, and a piece of toast. Later my sugar was lowish, so I had an apple and a pudding, but pretty much had to force them down!

Hopefully tomorrow will be a bit better that way.

Well mine is spotty at best. At lunch, not much doing, and I didn't think I was that hungry again at supper. But as it turns out, Sarah and I cooked again, we had potatoes and beets, and chicken stuffed with peaches, and I seemed to have gained an appetite somewhere between finishing cooking and starting to eat!

The back on insulin thing is going pretty well. Sugars are pretty stable, and no lows, but I am also being cautious just because I do not have my normal appetite.

All in all, another great day in paradise!

Well today was clinic day today, as well as blood work and whatnot.

Dr Shapiro wants me back on a tiny bit of insulin for the next 3 weeks, so as not to overwork the new cells. No problem. I just need to be pretty careful that it does not cause lows.

Everything else looks really good. All my various levels are all fine - within the norms, except my creatine level is creeping up a bit. Tacrolimus is pretty hard on the old kidneys though, so I need to make sure I have plenty of fluids, and that will help.

After work today I decided to stop by and say hi to Sarah to give her a hug and a kiss, and stayed for dinner. It was pretty fun cooking together, and I had a well balanced meal. Good things all around. It was very good, and always fun seeing her.

I have now made it a week with no insulin. That is to say, without injected insulin. I have missed 35 injections that last month I had to take just to live. I still shake my head and feel that modern medicine is amazing.

I now know for sure that my nausea is tied to CellCept on an empty stomach. Last week they told me I could take it 2 or 3 times a day instead of 4, and after some playing around, I can do it, but not at bed time when I do not eat. I was totally ill when I went to bed last night, and it took some time to get to sleep. Ah well.. live and learn.

Today I feel great though. Woke around 7, and the sun was shining through my window, so I just kinda lay in the sun for a while. Got up at 8, had breakfast, and puttered around for a while. At about 930, it was so sunny and nice, I grabbed a book and went to the park that is only a block or so away, and just kinda vegged out in the sun. Came home an hour later, as it was starting to get a bit too hot. Finished laundry, and cleaning, and then I have just taken it easy today.

Tomorrow morning I have blood work early, and then meet with Dr. Shapiro at 8:45, then clinic at 9:30. I took the rest of the morning off, and I am going to meet Rachel for lunch, to discuss the support group getting going again for the fall.