Cystic Fibrosis Fatboy — Page 17 — The daily quest to gain weight

Pills, Meds, and Insurance

January 31, 2012

Some mornings, taking too many pills is enough of a reason to not be hungry. They’re almost a meal in and of themselves. Am I right? I’m right!

I’ve seen some handfulls of pills from CFers on Facebook recently and got the notion to head to the table and grab all of my pills throughout the day. When that wasn’t enough, I went to the closet and refrigerator and got all of my neb’d meds, too. Something was missing… oh, my colistin from the basket next to my treatment spot!

That about covers it. This is what I take every day. Day in and day out.

Ready for your mind to get blown? What is the street value of these every single day if I didn’t have insurance? Some of these are a guess based on what we’ve been told about them if insurance didn’t cover an item while some have switched to mail-order, which doesn’t let me brag about saving $3000 on a prescription. This is my best guess, so, drum roll, please!

$12,960/mo = $432 every single day. That’s $52/hr for an 8 hour day or $18/hr every hour around the clock. For those keeping score, that is $155,520/yr – a number that still eludes my money-generating powers so…

This is why I don’t moan and whine about how much insurance costs because I eek out everything possible. My insurance alone is approaching $700/mo but it’s because it covers all of these items with no questions asked. Beautiful’s plan is under 1/3rd my price, but she doesn’t use hers much, so we more or less pay for her meds and have insurance to keep us from being bankrupted with a hospital visit or an $18,000 spectrum of tests that no one ever expects.

Sure, I’d rather pay $240/mo for the both of us like we used to when someone was kicking in on the premiums, but my lifestyle is so much better than it was then, so to have to earn an extra $600 between the two plans is a small price to pay to be able to do what we do. My state of mind is better. My ability to take a day or part of a day off just about any time I want is priceless to me. Today was sort of a blah day with my stomach, so after my 1pm call, I went to the spare bedroom and took a 2 1/2 hour nap. My phone didn’t ring, no life-shattering e-mails went unattended, and I was able to feel better just by relaxing.

I love our life.

Preliminary Update on Post-Clinic Changes

January 30, 2012

It may be a bit early to tell how things are or are not better after some med changes after clinic, but we couldn’t be more optimistic thus far. To recap the clinic visit, we have changed (for 6 doses) Albuterol to a Duo-Neb Atrovent/Albuterol mixture, added a liver med (Urso), and an appetite stimulant (Remeron).

I started the Urso (ursodiol) on Friday night, taking it twice a day with meals. Not surprisingly, I have absolutely nothing to report about it, as it was intended to straighten out my liver enzymes. I should remember to mention to Sue, since I only think it odd at the moment and quickly forget to ask about it, my standing output (I’m a guy, think about it) has been what I’d call cloudy. I just figured it was all of the raw veggies that come across my placemat at different meals, but I really should ask. Hold on a sec, lemme write an e-mail.

Still with me? Good. E-mail sent. I’ll let you know what she says.

The Remeron (mertazapine) appears to have positive results in the side-effects department. Unfortunately I don’t seem to have a sunny disposition yet, but my appetite sure was up today AND I gained a whopping 1.5 pounds. Well, make that 2.5 pounds when you factor in that a donated a pint of blood this morning. After I donated, I ate a Rice Crispy Treat, munched on Combos, drank a Capri Sun and a Boost Plus, and then dove into a Double-Stuf Oreo Cakester after all of that. I was hungry for lunch and dinner and could still wander over to the pantry when I’m done with my treatments. We’ll see if it keeps up, but it does look might promising, especially given the state of my appetite for the last couple of months.

Now for the cool breathing news! The Atrovent/Albuterol mixture seems to be working out might fine. My baseline measure for how good a treatment is remains a solid test for our daily routine. After dinner, Beautiful really likes to sit and talk for what I consider “quite a while.” I may not think it is such a long time if I could breathe worth a dime after dinner. Most days our conversation ends with me literally gasping, taking my plate to the kitchen, and gathering up my meds to head to the couch. It hurts me to leave her hanging like that, but we both agree that air is more important than dialogue.

Last night, she noticed it immediately after dinner, but I was still skeptical because we ate a bit earlier than normal. I woke up to the typical “caked on” feeling in the front of my lungs [Read more…]

Annual Clinic Visit – 2011

January 27, 2012

My annual clinic appointment was today, a month late for my 2011 annual, but that’s where it belongs in the timeline. Overall it was good news, but we had some very good dialogue with the doctor about quality of life vs the PFT numbers and what the picture is now and what it looks like for the future. Prepare yourself for a long post because I really don’t want to break this one up over the week.

Good news first: I’m not dying. I’m also not expected to be on the transplant list any time soon. The rest is a big bag of mixed nuts that will take us a while to sort through. I really hope that you find this informative as an “aging CFer” to know what is ahead for those younger than me and also encouraging and transparent for those in the same inning as I am – that’s 33 for those new to the site.

For one, my PFTs are down 3% from 39% to 36%. They put me in the box for PFTs this year for the annual check-up, which measures 2 additional things: [Read more…]

2012 Annual Clinic Is Today

January 27, 2012

I go in for my 2012 annual clinic visit today. A day filled with extra people, extra blood, and doing the PFTs in “the box.” I just had x-rays done during my ER visit in November, so I don’t have to go to the main part of the hospital for that. I’m doing my happy dance already. Technically, this is my 2011 annual because this was scheduled for December until a family emergency with the doctors canceled clinic for everyone.

You’ll see in my sidebar that I’ve gone almost 23 months without IVs! That is a personal record for me and I’m quite happy with that. However, I do feel like my quality of life is decreasing as a result of not hitting the bugs 24/7 from the inside in so long. Recent cultures have shown that I’m no longer resistant to several meds, so we will discuss the possibility of really getting into shape. Beautiful gets concerned when I cough this much, but since I keep up and I’m not wasting away, the numbers haven’t indicated that I need an intervention.

Today we find out what is behind door #1.

Several times last year, I was feeling pretty bad, but my PFTs continually rose all year. I don’t think that will be the case, but I’ve been wrong many times before about PFT predictions. No one can blame working too hard this time, as I take entire weekends off now and I generally go to bed between 10 and 11pm, yet I still “wake up” exhausted between 6:30 and 8:00am. I’m fighting something, and I don’t want anything affecting my health once we have our first placement.

The way we see it, I’ve been resistant to these drugs for years, so we can see why the doctors are always hesitant to put me on the 2-3 that still work. If they don’t work the next time I have an infection that requires an intervention, I would go downhill – fast. Since more meds are on the table now, we don’t see why we can’t discuss putting them out into play.

Ah, well. Enough thinking about that until I get my PFT results back. Stay tuned on Facebook for the results mid-morning, Eastern time.

Pills, Meds, and Insurance

January 31, 2012

Some mornings, taking too many pills is enough of a reason to not be hungry. They're almost a meal in and of themselves. Am I right? I'm right! I've seen some handfulls of pills from CFers on Facebook recently and got the notion to head to the … [Read more]

Preliminary Update on Post-Clinic Changes

January 30, 2012

It may be a bit early to tell how things are or are not better after some med changes after clinic, but we couldn't be more optimistic thus far. To recap the clinic visit, we have changed (for 6 doses) Albuterol to a Duo-Neb Atrovent/Albuterol … [Read more]

Annual Clinic Visit – 2011

January 27, 2012

My annual clinic appointment was today, a month late for my 2011 annual, but that's where it belongs in the timeline. Overall it was good news, but we had some very good dialogue with the doctor about quality of life vs the PFT numbers and what the … [Read more]

2012 Annual Clinic Is Today

January 27, 2012

I go in for my 2012 annual clinic visit today. A day filled with extra people, extra blood, and doing the PFTs in "the box." I just had x-rays done during my ER visit in November, so I don't have to go to the main part of the hospital for that. I'm … [Read more]

Time Elapsed Since IVs