Wednesday, April 28, 2010

Appointment update

Today I had a clinic appointment, more out of habit than necessity.  Last week I started with a tickle in my throat, then a sore throat, then nasal congestion (and loss of smell). Today I could smell (and taste) but I was very congested in my chest, so I'm glad I had the appointment pre-booked.  My PFTs were down a little, FEV1 down to 28% (function) and FVC at 42% (capacity).  Not time for antibiotics yet, but I'm going to keep an eye on it.

Also, the headaches have returned.  The last time they hung around, I had an MRI done and began the sinus rinses...I had an ABG (arterial blood gas) drawn today to check my CO2 levels.  If my body isn't getting rid of enough carbon dioxide, it will build up in my blood, which can be lethal. I'll hopefully hear something tomorrow.

That's about it for me tonight - I'm ready for bed.

Sunday, April 25, 2010

Don't Drink the Water

Someone brought to my attention today, a notice that Wichita Water Utilities customers received (beginning 3/25). I'll sum it up with some direct quotes:

Our water system recently violated a drinking water standard...We routinely monitor our water for turbidity (cloudiness).  This tells us whether we are effectively filtering the water supply...If you have a severely compromised immune system, have an infant, are pregnant, or are elderly you may be at increased risk and should seek advice form your health care provider about drinking this water... This is not an emergency... turbidity can interfere with disinfection and provide a medium for microbial growth. Turbidity may indicate the presence of disease causing organisms... Steps have been taken... Turbidity measurements have returned to normal and we expect to be in compliance in April.

Um. WHAT? You mean the water I have been using to brush my teeth, cook, clean my food and body isn't clean?

I don't know anything about water treatment or related legal guidelines, so this may be a normal, acceptable occurrence - but to me, as a customer and as someone who is at high risk for infections, I'm alarmed.  There are no other options - I can't shower with bottled water, nor can I avoid washing dishes, clothes, food, etc. in the water the city is supposed to be treating to meet certain health standards.

I don't know why they even bothered to tell us this happenED. Why would they alarm the public about something that we can't do anything about, and isn't an issue any longer, unless it were something very serious.  I know, some of you probably don't think it's a big deal.  After all, people years ago didn't have the luxury of chemically-treated, government-regulated city water, they drank the well water, organisms and all.  Some people may argue that it's good to get a little dirty water every now and then to boost the immune system... which is a load of crap. Bacteria is bacteria, and when you're infected with E. coli or C. diff, then tell me how healthy you feel.  

I'm probably over-reacting - but I definitely won't be drinking the water.

Now that Boston's water main break has happened and they were without clean water for a couple days, I feel like my freak-out is a little unwarranted.  *sheepish look*

Wednesday, April 21, 2010

Daily Reminders

Even on days when I'm feeling (relatively) well there are always little (and sometimes big) reminders of my illness.

For starters, I wake up and cough. And I don't mean clear my throat... I mean COUGH - braced and hunching over until I'm red in the face, gasping for breath cough.  This happens whenever I wake up, so if I stir in the night, it happens.  I'll be up for 5 or 10 minutes just coughing so I can be clear enough to lay back down.  Another 10 minutes to fall asleep, if I'm lucky.

When I get up in the morning, the first thing I do (after going to the bathroom and grabbing a soda) are my breathing treatments.  This consists of aerosolized medications and a vest treatment - the vest shakes my chest to help loosen the congestion so I can cough it up. This takes anywhere from an hour to two hours -  and can be exhausting if I'm really congested.

Then I can start my day.

Get food (Need those calories to maintain my weight - coughing burns a LOT of calories).  Did I mention I wear oxygen? I didn't.  Ok - I wear oxygen.  I don't notice it so much when I'm sitting in one place, but when I begin to move around the house, the tubing leash I have trailing me can get caught, stepped on or run out.  Making food in the kitchen is a hassle, because it reaches just to the refrigerator, but not the stove, cutting board, dishwasher or sink... convenient when I don't want to clear my dishes, but not so much when I'm alone.  Off comes the oxygen.

After eating, I pop pills and shoot up.  No, seriously.  I take about 15 different pills every day... many of them multiple times a day.  I won't list them all, so you'll have to just trust me on this.  I also have CF related Diabetes for which I take insulin shots whenever I eat.  These two things are probably the easiest part of my health maintenance, and I'm really looking forward to a day when that's ALL I'll have to do.

One difficult part about CF is that because I need so many calories, I'm often eating a large volume in one sitting, which makes it difficult to breathe.  With the stomach pressing against the diaphragm and lungs, I end up having to cough and clear after meals.  Which is okay if I plan to be near a trash can or toilet. Yeah, sometimes I cough until I barf.  Although that has happened a lot less since I had my gall bladder (which would swell after eating) removed.

Before I get myself ready to leave the house, I have to make sure I fill up my portable oxygen device an hour before I plan to need it.  It has to build up pressure to be able to function properly, and if I'm unable to use it, my blood oxygen saturation will drop and that causes the heart to work too hard (and the last thing I need is a heart transplant, too!).

When I leave the house, it's usually time to give another good cough.  I often purposely cough when I'm driving places so I won't have to when I get where I'm going.  One of the hardest things for me to deal with is coughing in public.  I hate to gross people out or worry them.  People think I'm choking and get really alarmed when I have a coughing fit.  I find myself giving the dorky thumbs-up just to get them to leave me alone until I catch my breath.  I hate having to justify it afterward, "Oh yeah, that's normal for me.  And it's not contagious."

When I'm home during the day, a lot of times I take a nap, which for me symbolizes starting my day over: I get up, cough, and do a breathing treatment.  The added exertion from coughing and struggling to oxygenate my blood often wears me out in just a few hours out of the house and I need naps!

Before bed, it's the same routine as the morning: breathing treatments, vest and bedtime snack (food).

I share this, hoping that more people will understand when someone says, "I have Cystic Fibrosis".  It's not just a label, it's a lifestyle.

Tuesday, April 20, 2010

Zoe has good taste in shoes

i love the interwebz

I'm so thankful that spring is here!  Life is just better when it's not cold outside.  The past few days I have felt amazingly well - my oxygen sats have even been better.  It seems to be transplant season, too!  Two of my good CF friends have gotten new lungs in the past 32 days.  Following other CFers' stories and pictures surrounding transplant, I feel like I'm practicing for my own transplant.  I'm becoming familiar with the process from getting the call to dry runs to recovery.  Thank god (or maybe Al Gore?) for the internet - it's become such an important tool in networking for CF patients.  Doctors tend to discourage contact among CFers because of the risk of exposure to new bacteria (which grow easily in the lungs, causing more infection and scarring), so through blogs and chat and facebook groups, I have been able to meet and share experiences with dozens of CFers whom I would have never had the chance to otherwise meet. (It helps that I'm already at the computer doing vest and aerosol treatments for several hours a day)