Friday, October 31, 2008

It Started Off Happy...

Ironically, I got some sleep last night but am more tired today than I've been all week.  So weird.  I guess I'm not all that talkative because of it, so this will probably be pretty short.
There are 15 CFers in right now, so things are a little hectic around here.  The PT people have to work out how to do all 15 CFer's CPT twice by 12:00pm.  Not an easy task.  Then they have to get us all in to exercise between 2:30pm and 4:00pm.  Again, not an easy task.  But they get it done and we are all the better for it.
I wrote the first paragraph and my endocrine fellow (a doctor who is in process of getting their specialty) came in and gave me some news.  They took a urine test the other day and there are proteins in my urine, which is called nephropathy.  This means that there is at least some kidney damage.  The good news is that it is early and is treatable.  I will now be taking a blood pressure medication in order to correct the problem.  This brings on more regular tests and concerns, but it is treatable, so that is good.  The bad news is that it is my fault.  For more than 12 years I did not take care of my diabetes.  It took a backseat to my CF and because of my stubbornness and lack of discipline I have now created a whole new issue.  I'm crying now because I feel so stupid for not taking care of myself.  There is/was this part of me, that despite having CF, has been in denial of the significance of the diabetes and the fact that I could develop other issues.  Maybe it's just too much for my brain to handle.  I joke a lot about how many health issues I have, but it's always, at least initially, a shock to hear that there is yet another problem.  I know that eventually I will add this to my list of complications and diseases and will move on with the taking care of myself.  Right now, though, I am still processing.  If you could pray that I process well and that the treatment will be successful without side effects, I would greatly appreciate it.
Until later...

Thursday, October 30, 2008


One of the CFers, Destiny, gave birth to her baby boy today.  They both are doing really well, but this stirred up a lot of emotions in me that I wasn't expecting.
You all probably know that before we got married Jake and I decided to not have children, and to further ensure this I had my tubes tied.  What you may not know are all the reasons why we made this decision.  CFers can have children and Dr. Hornick even called me before I had the surgery to make sure that I knew that this wasn't the only answer.  I assured him that I knew that, though I did appreciate the fact that he called to make sure I wasn't making a decision I didn't really want to make.  Here was(is) my thinking, though.  CF is hard on a body to begin with, and pregnancy is hard on a healthy woman's body, so put the two together and the results have a potential to be bad.  I couldn't stand the idea of having a child and knowing that there was a large possibility that that child would lose their mother at a young age.  I also couldn't stand the idea of leaving Jake to raise a child on his own.  Having it happen without the knowledge beforehand that it might is one thing, but to knowingly go into it with that knowledge...I just couldn't do it.
That surgery was hard on me, but I knew that going into it.  I knew that Jake could have had a vasectomy and it would have been much better for my health.  But there's further thinking into that too.  What if I did die soon into our marriage or after a few years?  I didn't want to take the option away from Jake to have children with the person he would fall in love with after I was gone.  I know they can be reversed, but that's not even a sure thing, so...I made the decision to take care of it myself.  If I had made any other decision about having children or how to prevent having children, they would have been selfish decisions and there is no way I could have done either one any other way.  Now, please don't get me wrong.  These were MY decisions and someone else making these decisions may make them a different way.  That doesn't make them wrong.  For me, though, any other decisions would have been wrong.
Even with all these very logical decisions, which were well thought out, the decisions and the surgery didn't take away a desire to have children.  I wish that they did.  It would certainly make things a lot easier.  There have been at least 2 times since we've been married that I thought I was pregnant despite the tubal.  I was thrilled and terrified both times...I'm sure very normal reactions.  Both times I would get so excited at the thought and then be crushed when it wasn't true.  I feel a little silly even telling people that, because, duh, right?...I had a tubal.  But there is always a small chance of getting pregnant after getting a tubal, and if you know anything about me, you know that I've pretty  much crushed every statistic and expectation my entire it wasn't such a crazy thought.
So, when I knew Destiny was going into surgery to have her baby, there was this flood of emotions.  Thinking of what I may have missed out on because of my decisions, how hard it must be to not have a lot of support when you have a baby and have CF.  And then, Amanda, told me a few things that brought even more.  Destiny told Amanda that she had written a note to Dr. Hornick that she wanted given to him if anything were to happen to her during the C-section.  Basically, telling him how grateful she was for his care and support and everything he'd done for her while in his care.  It made me cry, knowing that this wonderful moment in a woman's life would have to be filled with worry and wonder over what would happen, and even expecting that something might.  I hated knowing she was thinking about that...but what else can you think when you're in our position?  Every flu, cold, sinus infection...everything that comes up can be the beginning of the end.  I've seen it happen, and heard numerous stories of how the smallest thing started the ball rolling.  What must she have been thinking about leaving her baby behind?  To not be there when he starts to walk and talk, and go shool, and get married.  I think, she must have been peaceful in a lot of ways, because Amanda said Destiny was comforting HER.  Thankfully, nothing did happen.  And even more than that, there are some serious miracles going on.  They had planned on her having the c-section on the 17th, but she was feeling so good that she said she wanted to wait 2 more weeks to give him more time.  (But she did NOT want him to be born on Halloween :-P)  He was born at 29 weeks and was breathing fully on his own!  No one was expecting that.  Destiny is doing well and I hope to hear more about her recovery from surgery while I'm here.
The good thing for me today, was that with all my doubting of the decisions I've made in my life, I feel like I got confirmation today that this one was the right one.  The reasons I had for not having children are the same worries Destiny must have had.  I'm very thankful that I won't have to have those worries.  Granted, God can still make another miracle happen in my life.  He can bypass a tubal, and I know that...He is so much bigger than that.  But I also know that I will never have to wonder if I made a mistake by not having one.  And I know that if I do become pregnant that it is not by some mistake I made (which I guarantee you I would think, because I constantly worry about who I hurt) but because God really wanted this for Jake and me.  I find a lot of peace in that.
As a side note, Destiny named her baby boy Brandon Douglas.  Douglas is after Dr. Douglas Hornick.  If there is any doubt what we think of our doctor and how amazing he is, there is some proof for ya.

Wednesday, October 29, 2008

A Better Day

I had another bad night, BUT I've actually had a pretty good day!  I made it through both sets of CPT today (the last two days I either didn't do one or couldn't do all the different positions of them), and I exercised.  I usually have a really hard time the first few days I go, but it went surprisingly well this time!  My Sats (Oxygen saturations) were good the whole time and I went 25 minutes!   PLUS, I got my A1c results back was 7.2!!  That really cheered me up :)
My endocrine doc, Dr. Doelle (pronounced like Deli), came today too and even he had a smile on his face!  I don't think I've ever seen that from him...I've been a frustrating patient for quite sometime :-P  (He treats my diabetes and hypothyroidism)  He was happy that my numbers were better and also said my thyroid levels looked good.  I asked that the diabetes nurses and dietician come in so that I can get a refresher course on all things diabetic.  I'm finally at a place, mentally, where I'm receptive to the only took 13 years :-D
I haven't seen Dr. Hornick yet today, so no info there.  All in all, things are looking up.  Now, if I could only get a good nights sleep!

So, somebody (*cough cough* STACI *cough cough* ;-P) thought I needed more pictures on here and not JUST on Facebook, so I took some pictures with my iPhone today.  Maybe you can get a little better idea of what my favorite "vacation home" looks like.

This is my side of the room.  I'm in a double right now because there are so many of us right now. We have to be by ourselves because we don't want to catch anybody else's bugs, so this time I get a really big room with TWO windows :)  There are 13 CFers right now (8 adults, 3 peds, I think).  That is a HUGE number at one time.  I guess the weather isn't helping any of us this time.

What I see when I lay in my bed.  That's the white board where my goals are written and the fabulous (HAHA!) TV.  Peds have it so good with their flat screen TVs and DVD players bitterness here :-P

The other side of the room.  Notice the fabulous faux wood sink cabinet and stunning bed clothes...just so stylish.  The bed is mussed because Jake slept in it on Saturday.  It's nice to have an extra bed he can sleep in instead of the chair or a cot that he brings with him.

My bathroom.  Very oddly shaped.  The mirror on the sink cabinet-thingy allows me to see the top of my head.  Quite handy.  Hence the hand mirror underneath it.

The view from my window.  This is by far THE best view I've ever had.  Usually I'm looking at a brick wall, so this is really really nice.  Anybody who comes in the room comments on the view, so you know it's special :)  They also comment on how cold I have the room.  I love a nice cool room.  It's set at about 67 right now...pretty much perfect.  Really nice when the rest of the hospital is about 72 or so.  The CF dietician came in today and said she'd come hang out in my nice cool room and check out the view when she gets stressed.  Sounded good to me :)

That's all for now!

Tuesday, October 28, 2008

Day 3

I had another bad night.  The coughing wasn't quite as frequent as the other night, but it kept me up longer.  I would just start to nod off and I'd start coughing again.  Frustrating is the only word that comes to mind.  Exhausted is what I am now.
I did take a nap this morning for about 2 hours, but then people kept coming in the room, so it didn't last nearly as long as I wanted it to.  Hopefully, tonight will be better.
I still haven't exercised yet.  The exhaustion leaves me with no energy and the thought of exerting that much more just makes me want another nap, so I skipped it again today.  I really want to get going with that, because it does speed up recovery.  If I get a good night of sleep tonight I'll finally get back into the normal routine, I expect.
Overall, I do think I'm starting to get better.  Jake said my voice sounded better when he called me over lunch.  I haven't coughed as much today so I think that's a good sign.  Although, I have gone through yet another box of tissues, for a total of 3 in 3 days.  That's probably at least a little tree I've killed by now :-P
We have new IV pumps this time.  None of the nurses or CFers like them.  They're like Fort Knox...impossible to get in to.  Normally, we all mess with our pumps, changing the speed the drug is infused at, or correcting the volume of the med.  Not to mention adding more time to it when it starts to beep and annoys us.  But not on these babies.  Nope.  You have to have an ID badge in order to get in them and pharmacy decided what speed the med goes in.  Most CFers are in quite often, so we know the routine, and know what our bodies can and can't handle.  We all change stuff, and the nurses know we know what we're doing, so they're okay with it.  Usually I run my Tob over half an hour, but the new machines think that because I'm little my body can't possibly handle the drug going in over a half hour, so I get to sit for twice as long.  It's pretty annoying.  The nurses hate them because they don't have the freedom to use their did that for them.  They set how much time the nurses have to start the med after they scan the med or enter it by hand before it starts to beep.  Apparently, they think nurses are also tazmanian devils, so they gave them about 10 seconds to get it done.
Here's the genius of someone who has been in the hospital a lot though.  Te he he.  Apparently, one of the CFers who is in right now, discovered a little button on the back of the machine that allows you to change things without the ID badge.  Our favorite physical therapy aid, Amanda, is passing the word around :-D  I haven't tried it yet, but I'm sure I will the next time the pump decides to mess with me.
I found out some more about the move.  Several of the nurses from this floor and even some of the housekeeping people are requesting to move with us.  I'm very excited about this.  Moving to a new floor is always hard, because you get really attached to the people you see every time.  (Not to mention that breaking in new people is always a process :-P)  So, some of our favorites want to go with us.  That should make the move even better, if their transfers are approved.  We've had favorite nurses, who got frustrated with the way this floor is run, go to different positions in the hospital.  I'm hoping they'll come back to us when we move.
We are a very interesting breed of people, as I've mentioned before.  I mean, if you think about it, we really are freaks of nature to begin with.  CF is not a common disease.  Jake and I did the math on what percentage of the American population actually have CF and it came out to be less then 1/100 of a percent.  Is that crazy or what?  Throw on top of that, only 10% of the CF population develop diabetes from the much of a freak of nature am I now?!  (By the way, I take "freak of nature" as a good thing...who wants to be like everybody else? :-) )
I suddenly drew a blank on what else to talk about so I guess I'll stop for now.  I'm sure I'm forgetting important information of some kind, but if I get some sleep I'll probably remember it tomorrow :)
Thanks for reading my ramblings!

Monday, October 27, 2008

Full Day Deux

Things got straightened out last night.  Turns out my day nurse didn't see the orders Dr. Hornick put in my chart.  Thankfully, my night nurse found them after I was confuzzled by some things and asked her about them.  So at about 11:00pm last night all the new orders were actually put into the computer system and everything is as it should be.  Gotta love technology.
I am now on 3 antibiotics.  I did get put on the good one, so YEAH!!  It's called Aztreonam...I've been practicing saying it all day and it hasn't gotten any better.  This one isn't sticking in my head for some reason.  Oh well.  The other one is Cipro, which I'm on quite a bit too.  Usually, it's in pill form, but doc decided to do IV this time.  So, my current med schedule is: 8am: Aztreonam, 10am: Tob and Cipro, 4pm: Aztreonam, 10pm: Tob and Cipro, and 12am: Aztreonam.
We did levels today for Tob.  I am pretty sure this is the first time getting blood 3 times only took 3 sticks.  I don't know how that happened.  Although, my nurses did listen to me when I told them where to stick it (LOL! the needle that is...).  The 2 nurses who did them were really good, so I give them the credit. 
I really only have 3 veins that can actually be poked successfully with some consistency.  2 in my left hand and one on the back of my right arm.  That one is particularly awkward, but it works so, we do what we have to.  One of the veins on my left hand gets pretty sore after getting stuck.  It's right over the bone of my thumb below the knuckle...but again, it works, so we do what we have to do.  Those results I probably won't get unless they're high...kind of a no news is good news thing.  I also realized I made a mistake in my last blog.  The troughs I get twice a week after today.  Always on Mondays and Thursdays, unless Dr. Hornick gets a hunch.  And, he's always right when he gets his hunches :)  So, my veins get a break until Thursday.
As far as how I'm feeling...
Last night and this morning were particularly rough.  I tried going to sleep at about 11:30 and coughed until 2am.  When I woke up this morning it happened all over again.  From 8am until around 10:30 all I did was cough.  Coughing always has some pain with it.  You can't cough that much and not have pain.  I start getting headaches from the pressure and my abs start to burn.  More than anything, though, it just breaks me emotionally.  This feeling of "it's never going to end" start flooding my mind and I can't help but cry.  I know I'm an emotional person to begin with, but I hate this kind of crying.  It's tears of desperation.  I'm pleading with God to make it stop after about an hour.  Eventually, I remember (it has to be the praying that makes my brain work again) that cold water or ice works.  I start sucking on ice and sipping the water and things start to calm down.  Then I fall over from exhaustion and usually just go to sleep, if my body will let me.  I long for those periods to not come.  I do everything I can to avoid them.  Sometimes, that's just not possible.
I'm extremely congested both in my sinuses and my lungs.  A few people have commented that I sound particularly bad this time.  I'm coughing up a ton of mucus and have already gone through 2 boxes of tissues since I've been here.  By day 2 I'm usually feeling better and coughing less, so I'm having a rough time, mentally.  Sometimes it's too much to handle.  I just want to feel better, even a little bit.
Dr. Hornick wrote, on the white board in the room, what my goals are for this time.  Number 1 is decrease in cough/sinus congestion.  Number 2 is decrease in dyspnea.  This was a new word for me, so I had to look it up.  It just means difficult or labored respiration.  The white boards are a new thing, so actually seeing the goals are too.  I like it :)  Number 3 is "BS Control".  I laughed when he wrote that down.  I thought he was talking about something else, but he quickly told me that he meant blood sugar control.  The other way would work too, though. :)  Apparently, at least one of my meds is made with some sugar solution, so he changed that in my chart so they would make it with saline instead.  I had a spike in my blood sugars this morning which really confused me, so finding that out relieved that concern.  The rest of the day has been better as far as those go.  I forgot to ask about my A1c result, so I'm going to try to remember that for tomorrow.  The A1c is the test they use to find out what your average blood sugar has been for the last 3 months.  They like it below 7.0 and as close to 6.0 as possible.  Mine usually runs around 8.0.  It's gotten a lot better over the years as I've learned to take better care of my diabetes.  My goal for this one is at least 7.8.  My last one was 7.9 so I want to see improvement!
Moving on, number 4 is "smile daily".  I kinda liked that one.  I don't really think I have a problem with that, and he knows it.  I think that's why he put it up there.  There was also originally a number 5, which I find hilarious.  It was "Be Normal".  As in, Normal, IL.  He doesn't miss any opportunity to throw that around.  A couple of years ago, he realized what town I was from and hasn't stopped joking about it since.  I love that he has that dry sense of humor.  It reminds me of my dad, so it's kinda comforting :)  He quickly erased it after he wrote it.  I laughed, but maybe he didn't think others would get the joke.  Besides the fact that no matter what, I will never be "normal", so that is an impossible goal :-D
My voice hasn't really gotten any better.  All the coughing last night and this morning made it worse so there is almost no voice left.  That makes ordering my food fun :)
So now the good news.  I found out that the adult CFers will be moving to a new floor at the beginning of next year.  Dr. Hornick has been lobbying for a long time for us to get our own area.  Being around sick, contagious people is NOT good for us at all.  This will be at least the 3rd time we've been moved since they stopped putting us in peds.  I have high hopes for this.  They've been renovating the floor for awhile, so it will be brand spankin' new when we get there.  I know that Dr. Hornick wants us to have a lot, but I'm not sure what will actually happen.  The new area will be next to the IPCU (Intermediate Pulmonary Care Unit) which has really big I'm crossing my fingers for that.  Also, he's wanted us to have (and we've all wanted) what all the peds kids have.  Flat screen TVs, cordless phones, video games, DVD players, refrigerators...the works basically.  When you're in as much and as long as we are, these things are really awesome.  It makes being here not quite as horrible.  I'm not sure what the board will be willing to pay for and what will be donated.  When my friend, Lori, died last year her husband donated 7 dorm refrigerators and a Wii for use ONLY by CFers in her memory.  We have to eat so much to keep our weight on and everybody I know brings food with them, so those fridges are great.  I always have soda in mine.  Mmmmm...Mountain Dew. :)  These kind of luxuries are really special and I'm hoping that someone will see fit to get them for us.  Children's Miracle Network outfitted peds, so they may do it for us too.  We're a special breed of adult, so we may still qualify as children :-P
Alright, so I've written a whole heck of a lot, so I'm gonna quit now.  It's kinda nice getting this stuff out...should have started this a long time ago.  (No "told you so"'s from anybody, got it? ;-) )

Sunday, October 26, 2008

Back in Iowa

Jake brought me up to the hospital last night.  I have been sick for the last few days with a bad sinus infection that wasn't getting better, so here I am.  I had a bad cold for about 10 days at the beginning of September, and after Aunt Barb's death, there was a lot of stress.  The sinus thing popped up, and there ya go.  Sick, sick, sick.
I'm not feeling too well, as you can imagine.  I'm extremely tired and am still coughing quite a bit.  I've also been nauseous on and off since Friday night.  To add to everything else, I started that very special time of month, and the cramps are always enough to knock me down for 2 days without all the other stuff going on.  Being on the antibiotics means no ibuprofen, so Weeee!, even more fun.  I requested tylenol w/ codeine, so we'll see if my doc okays that.  The tylenol by itself does absolutely nothing for me.
Dr. Hornick had been out of town so I had another doc admit me.  Thankfully, Hornick was back this morning and I feel much more comfortable now.  He is THE best doctor.  I truly trust him with my life and that means a lot when you're in a position like the one I'm in.  He cares very deeply for every one of his patients and that is really obvious.  He knows his stuff, is incredibly humble, forceful when he needs to be, and has a great bedside manner...what else could a patient ask for?
So far I'm only on Tobramycin (Tob from here on in), which I'm on every time I'm here.  I think we must be waiting to get test results back or something because nothing else was prescribed, which is unusual.  I didn't get a lot of time to talk to Hornick when he came in this morning because I was getting CPT (Chest Physio Therapy) at the time.  I'm sure I'll be able to ask more questions tomorrow.  I'm not really worried about it though.
I guess for the time being I'm just resting, eating, and doing nebs.  Tomorrow will start all the fun stuff (completely sarcastic).  I'll get stuck for Tob levels tomorrow morning.  That checks the level of the drug in my blood 1, 2, and 3 hours after it is administered.  They do this after the 3rd dose the first time, and then I just get troughs once a week (or when Dr. Hornick gets a hunch :-P) after that.  The troughs are much nicer because I only have to get stuck once right before they infuse the drug.  They check that to protect my kidneys.  Too much drug and my kidneys can shut down, too little and I won't get the benefits.
I'll also, most likely, start exercise tomorrow (which I loathe).  I say most likely, because right now I don't feel up to it, but I may feel better after another nights sleep.  Also, depending on the second med chosen I may be nauseous by the time exercise time rolls around.  One of the drugs I'm still sensitive to is Meropenem.  Unfortunately, it makes things worse for the first few days...nausea, stuff.  I'm hoping for the drug we did 2 admissions ago.  They'd never used it on me and I didn't have ANY side effects and I didn't have to get stuck to be on it.  Beautiful!  At the time they said they'd do every other visit would be Meropenem and every other one would be the new one (can't remember the name at the moment).  We'll see what Hornick's decision on that is.  I don't usually fight him on stuff.  I trust him enough to not fight unless I absolutely can't handle something.  That doesn't happen too often.
My dinner got here about 5 minutes ago, so I'm gonna quit for now.  Maybe I'll have more info to share tomorrow.

Wednesday, October 15, 2008

Weary and Feeling Small

I've been feeling really down lately.  Yesterday was especially bad.  I had a low-grade fever and was really tired, so that may explain some of it, but still.  I've been very lonely lately.  Jake is working all the time and for the next couple of months it will get even worse.  I've just felt very alone.  I suddenly feel like I'm 10 again and think "I don't have any friends" and cry.  It's a horrible feeling.  I do have friends and they care about me, but I don't see them very much.  It seems that everybody has their thing(s) to do and I don't fit in to those plans.  It's kids, or work, or errands, or something...always gets in the way.  I spend the days and most of the evenings by myself.  I want to talk to people, to be with people, but something always seems to get in the way.  Either I'm not feeling up to going out or I don't feel that I should call people.  I always think I'll be interrupting them, or inconveniencing them.  I often feel like I'm a burden.

I try hard not to complain about things.  I feel like if I start I'll never stop so I try hard not to ever start.  But the truth is things are really difficult for me.  I have a hard time getting moving most days.  I want to do the laundry, clean the bathroom, clean up the family room...but I'm so tired and the thought of doing something I know will make me cough and exhaust me is just too much most days.  I need help but don't want to ask anyone for it.  Everyone else has the same tasks to do and usually a heck of a lot more.  They have small children to take care of, and jobs to do, and their own homes to tend to.  Nobody has time to take care of their families and mine too.  I need to do it, but just can't find the energy to.   So, things go undone until they absolutely have to be done.  Like when unexpected company is coming in half an hour and I have to fly to get everything cleaned up, all the time not breathing well, and coughing and then collapse when it's finished...usually then putting on the oxygen I should have had on the whole time.

I just feel very alone and don't know what to do about it.  I know the answer lies with Jesus, but I even feel distant from him.  My own doing, I know...he doesn't leave.  But that starts a whole different topic, so I won't get into that right now.  

Until later...