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.

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)

Great news

After what seemed like Forever, I got my cepacia test results back and they were NEGATIVE! I have never been more relieved in my life.  I was re-activated on the transplant list also, today!  Now I need to get my back re-packed and back into my car so that I'm ready when I get my call!

inactive, again

I'm inactive on the transplant list until they know more about which cepacia bacteria I cultured. I will post again when I hear more news.

At the doctor's office I had to wear a lovely mask, and everyone who had contact with me wore mask, gown and gloves. I felt like I had the plague or something. We discussed what action they were taking. Since it's so rare, my doctor has been and will be consulting with other CF centers to learn how they handle their patients with cepacia and what the protocol is for treatment. They took another sputum culture and will send both that one and the one from a week earlier to a special lab in Michigan that deals exclusively with cepacias so they can identify which strain it is. The wait could be a short as one week but as long as 8 weeks! He told me not to worry, though, because there are different strains of cepacia and there is a chance that it isn't the aggressive B. Cepacia. And if that's the case, they may be able to treat it and I'd still be eligible for transplant. So until I know, keep me in your prayers. I need all the help I can get!!

bad day

I got my PICC line put in, with absolutely NO complications, which is a first. Later on in the day on Thursday I get a call from the nurse at the CF clinic. She said that my doctor wanted to see me Friday. After some questioning about why on earth he wanted to see me, because he had just seen me the day before, I knew in my gut that something was wrong. I emailed my doctor and he asked if he could call me. Right away, I asked, "Did I culture cepacia?" and he told me I did. Needless to say the next 24 hours I was an emotional wreck.

back to basics

I went to the doctor here in Wichita to get PFT (pulmonary function tests) done.  My lung function was down a bit to 27%, capacity to 39%.  Also, I asked my doctor flat out "Did I culture cepacia?" and he said NO! Which was a HUGE relief!  I decided to go on IV antibiotics and we got it set up to start tomorrow.  Hopefully the PICC placement will go smoothly, since they don't sedate here.

absence of pain

Yesterday was my first day without a headache! But my chest congestion is still pretty bad. My O2 sats have been low without oxygen so I've had to put on my "big girl panties" and wear it in public. :( I know I really do need it.

another appointment

I went to the clinic to give a sputum sample (aka, spit in a cup. yeah, i know, real attractive) so they can determine which organisms (viruses, bacteria, fungi) I have in my lungs. The main two reasons I wanted to have one done were a) because I wasn't getting over this cold I had been fighting and b) I wanted to make sure that I tested negative for a certain strain of bacteria (Burkholderia cepacia) which would make me ineligible for transplant.  And that would be BAD NEWS.