Worried and Lazy Too:
Probably, Lazy isn't the word I should use. But, I've noticed lately I've slowed at posting on my blog and haven't been posting as much via twitter. Oops. Sorry. I guess I didn't notice, but instead of announcing all my news on my blog, I've just been posting in on my blog's (CF Awareness) Facebook page instead.
So I apologize for not keeping you all up-to-date. Once a week blog posts, that's not normal for me. I used to post a few times a week, so I need to keep more on top of it. I promise, I will try. Let me tell ya about the few things that did occur this week and my big worry/scare!
As you may have read in previous posts I did the screening for a new clinical trial with Doc on Wednesday. It's pretty neat and I hope I make the criteria with all my numbers. Only 144 participants nationwide are doing this one and it's relatively new, so very few (I think only double digits) have done it in the past.
However, Wednesday has some bumps for me. First, my weight is really down. I knew it would be on this diet. It's just really hard to find food I can eat. We are working on it though. I'm hoovering between 99-100 lbs right now. I was 108 last fall and dropped 3-5 lbs in the last 3-4 weeks.
Doc sent me home with a 24 pack of chocolate ensure. Gotta love Doc. We know it's not a permanent solution ( as I will get sick of drinking 2-3 ensures per day, along with eating my boring diet). So I did discuss putting a tube down my nose at night to do stomach feeding... (ugh). BUT, here is how I look at it, I'm not quite at that point yet AND even if I do have to do that, it's still better than my leaky stomach tube (which was a mess in the last year, here is the post about that surgery/mess). So we will cross that bridge when we come to it.
I went home with a low 50% lung function, but overall feeling okay about it (considering problems I have had getting more than 1 medication from the pharmacy, due to insurance problems).
So overall, I was feeling okay with my appointment considering. Doc wants me to come in again in two weeks for an actual clinic visit (which is when we will re-evaluate my weight, lungs, etc). But, that feeling of content left on Friday. I got a call from Doc's office saying "Your Potassium level is really high, in the 'alert category' (which is apparently not high enough to hospitalize me, but still scary), so we need you to re-do the blood test at the local hospital" I was like "okay... " Doc said he thinks it not a real reading & was a false high level, which can happen if my red blood cells rupture while being drawn ( the cells release the potassium)... So he thinks that's all it was, but of course I wonder if it is actually high.
Pic to Left: Me chilling at the local hospital waiting to re-do my test. I was bored, until I saw the Food Network was playing on the TV in the corner!
I started to think maybe it was connected to the fact my pancreas doesn't work (basically) anymore and if that it is all part of a different problem entirely? Of course I googled it.. could mean kidney problems or can be related to diabetes... So I decided I really hope it is a fluke, because it just seems weird...
I mean in the last 6 months my liver enzymes have been high and haven't returned to normal. I don't drink, or do anything to make it mad either :-( Then I find out I can't digest food anymore even with the help of my enzymes, so my pancreas is pretty much shot (Pancreas post here)... Now my potassium is high...So needless to say I was a worry wart most of the weekend. Andrew is right though, until they call me Monday with the results I won't know... And if it's a false reading, then I've just had some really bad luck and weird coincidences in the last few months. If it is high, then we will deal with it. No reason to fret.
But, Life with CF, especially being older and having so many secondary problems, makes me worry a bit more than the average person. I mean 40% of CF adults develop diabetes, any organ can have problems & eventually shut down due to overworking or from disease taking over it. Liver disease, kidney problems, these things can happen. So I tend to try to watch out for anything, so I can tackle it head on, right at the beginning.
I will be posting about the Potassium tomorrow on Facebook & Twitter.
Andrew & I have most of the wedding stuff finalized, my sister has been Kick-A** MOH, and I had an amazing day hanging out with a best friend yesterday! The CF Walk is really coming together, got some sponsor checks in the mail, and collecting lots of awesome raffle prizes!!! Even though I have so much non-CF stuff going on, the CF stuff always takes priority, so it's been what's mostly on my mind.
Andrew gets off work early today, so he rented a movie & I hope to have a pig-out day!
Probably, Lazy isn't the word I should use. But, I've noticed lately I've slowed at posting on my blog and haven't been posting as much via twitter. Oops. Sorry. I guess I didn't notice, but instead of announcing all my news on my blog, I've just been posting in on my blog's (CF Awareness) Facebook page instead.
So I apologize for not keeping you all up-to-date. Once a week blog posts, that's not normal for me. I used to post a few times a week, so I need to keep more on top of it. I promise, I will try. Let me tell ya about the few things that did occur this week and my big worry/scare!
As you may have read in previous posts I did the screening for a new clinical trial with Doc on Wednesday. It's pretty neat and I hope I make the criteria with all my numbers. Only 144 participants nationwide are doing this one and it's relatively new, so very few (I think only double digits) have done it in the past.
However, Wednesday has some bumps for me. First, my weight is really down. I knew it would be on this diet. It's just really hard to find food I can eat. We are working on it though. I'm hoovering between 99-100 lbs right now. I was 108 last fall and dropped 3-5 lbs in the last 3-4 weeks.
Doc sent me home with a 24 pack of chocolate ensure. Gotta love Doc. We know it's not a permanent solution ( as I will get sick of drinking 2-3 ensures per day, along with eating my boring diet). So I did discuss putting a tube down my nose at night to do stomach feeding... (ugh). BUT, here is how I look at it, I'm not quite at that point yet AND even if I do have to do that, it's still better than my leaky stomach tube (which was a mess in the last year, here is the post about that surgery/mess). So we will cross that bridge when we come to it.
I went home with a low 50% lung function, but overall feeling okay about it (considering problems I have had getting more than 1 medication from the pharmacy, due to insurance problems).
Long story, but I don't have my primary insurance anymore, just Medicaid. But, Medicaid won't pay the full amounts, until it's updated in the system that my primary is gone. I gave them the paperwork proving it, they sent it to Springfield, IL and now I just have to wait while they update it in the system (which is slow as molasses... been 2 weeks already).
So overall, I was feeling okay with my appointment considering. Doc wants me to come in again in two weeks for an actual clinic visit (which is when we will re-evaluate my weight, lungs, etc). But, that feeling of content left on Friday. I got a call from Doc's office saying "Your Potassium level is really high, in the 'alert category' (which is apparently not high enough to hospitalize me, but still scary), so we need you to re-do the blood test at the local hospital" I was like "okay... " Doc said he thinks it not a real reading & was a false high level, which can happen if my red blood cells rupture while being drawn ( the cells release the potassium)... So he thinks that's all it was, but of course I wonder if it is actually high.
Pic to Left: Me chilling at the local hospital waiting to re-do my test. I was bored, until I saw the Food Network was playing on the TV in the corner!
I started to think maybe it was connected to the fact my pancreas doesn't work (basically) anymore and if that it is all part of a different problem entirely? Of course I googled it.. could mean kidney problems or can be related to diabetes... So I decided I really hope it is a fluke, because it just seems weird...
I mean in the last 6 months my liver enzymes have been high and haven't returned to normal. I don't drink, or do anything to make it mad either :-( Then I find out I can't digest food anymore even with the help of my enzymes, so my pancreas is pretty much shot (Pancreas post here)... Now my potassium is high...So needless to say I was a worry wart most of the weekend. Andrew is right though, until they call me Monday with the results I won't know... And if it's a false reading, then I've just had some really bad luck and weird coincidences in the last few months. If it is high, then we will deal with it. No reason to fret.
But, Life with CF, especially being older and having so many secondary problems, makes me worry a bit more than the average person. I mean 40% of CF adults develop diabetes, any organ can have problems & eventually shut down due to overworking or from disease taking over it. Liver disease, kidney problems, these things can happen. So I tend to try to watch out for anything, so I can tackle it head on, right at the beginning.
I will be posting about the Potassium tomorrow on Facebook & Twitter.
Andrew & I have most of the wedding stuff finalized, my sister has been Kick-A** MOH, and I had an amazing day hanging out with a best friend yesterday! The CF Walk is really coming together, got some sponsor checks in the mail, and collecting lots of awesome raffle prizes!!! Even though I have so much non-CF stuff going on, the CF stuff always takes priority, so it's been what's mostly on my mind.
Andrew gets off work early today, so he rented a movie & I hope to have a pig-out day!
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