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2012 Annual Clinic Is Today

Door #1I 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.

Atrovent Made My Best ENT Visit Ever

Atrovent - ipratropium bromideMy now bi-monthly ENT visit Friday was a pretty cool one due to Atrovent nasal spray. I just didn’t know it until now. Just a tiny back story for the new readers: I had my 9th sinus surgery in October 2010 and didn’t feel any relief, CT scan showed my sinuses worse off than September by mid-December, so I switched ENTs and had surgery #10 in January 2011. I’ve continually gotten better all year, most especially after May because I was still having massive sinus headaches up until then but have since decided it’s “just” migraines.

For about 3 months now, I’ve had a severe runny nose. But wait, it’s not just any runny nose. It’s just on my left side. It’s always clear as water and the consistency of hand sanitizer. That’s it! It’s like a hand sanitizer factory. Want some? I’m far from exaggerating to say that I went through more than a box of Kleenex per week – every week. I’d blow my nose in the bathroom in the morning, come downstairs to get my neb stuff, and immediately blow again when I sat down on the couch to start. Then I’d head upstairs and blow again. Every time I moved my head or coughed, I had a mess to consider stopping.

I mentioned it (obviously too passingly) in November because he wasn’t concerned because everything looked good. This time I marked on my sheet that it had to be resolved in a “we need to talk’ manner. [Read more…]

Raging Animal – Testosterone Update

You wouldn't like me when I'm angryNot getting into too much detail, I’ve been a raging animal for several months. Months. I’ve flipped out on a dime, popped blood vessels out of my forehead, and pissed off some clients a time or two (you know you’re raging when it comes across via e-mail). This is why I had my blood drawn for levels Friday at clinic.

The results are in.

A little background first

I began shots when I was barely over 100lbs and pre-diabetic, on the verge of going on diabetic pills. After doing that for a while, I gained weight and we changed our diet and I had been vitamin compliant for a few months. I started getting angrier and angrier. They reduced my dosage and switched me to doing it every 2 weeks to reduce the ups and downs. Eventually that concentration of testosterone cypionate wasn’t available, so when that got cut in half, we doubled the frequency to get the same amount.

Here’s my history:

Date Free Total
April 2010 74 402
August 2010 104 376
November 2010 167 516
September 2011 255 966

Legend

April 2010: post-compliant, pre-diet change, no change in dose: 300mg bi-weekly
August 2010: post-compliant, pre-diet change, gained weight, changed frequency, not amount: 150mg weekly
November 2010: post-compliant, post-diet change, maintained weight, same frequency: down to 100mg weekly
September 2011: post-compliant, post-diet change, maintained weight, changed frequency and dose: down to 50mg bi-weekly

I’m being cut back by 75% because my levels are anywhere between 2 and 4 times what they should be, depending on which number and who you believe about what levels are normal. I guess now would be a good time to apologize to anyone who’s had a “bad Jesse experience” in the last few months. Maybe you deserved it, but I probably still overreacted beyond my normal, even demeanor.

So… it would appear that the boys are working doing their job making juice. This is starting to explain a little bit why I was so small as a teen considering how underweight I was. I know CF probably had some to do with it, along with my parent’s height, but I was also darn thin and small-boned. I’ve just started to fill out like a man in the last year. We’ve been eating a lot of fresh veggies and fresh meats since Beautiful was diagnosed with several allergies, so I have relatively few processed foods compared to our first 3 years of marriage.

The more we watch shows on food-related health issues, the more we’re able to weed out the crap and get good stuff. I’m eating a ton of eggs, more salmon, taking fish oil caps, and actually taking my ADEK + zinc, all of which are supposed to increase natural levels anyway.

It’s starting to look like I won’t need any next time we do levels, which I’d be fine with, because it’s a pain in the butt.

While I’m on the Topic of Transplants

Let's talk about itClinic visits and figuring out details related to planning for future events always turns my mind towards transplants. I’m sorry if it depresses you, and I know I’ll be scared bowel-less in pre-op if that day ever comes (even though my doctor said “we’ve never lost anyone on the table”), but some people also need to be reminded that this as a reality of CF. Unless there is a cure before my bugs become resistant to every treatment available, it is inevitable sometime down the road.

What I have been thinking tonight, though is among the happier thoughts related to transplants. I’ve been down hard with the combination of recovering from a cold, my quarterly Boniva injection, and a triple flu shot on Friday. Until today at lunch, I’ve been blob-like, unmotivated, and going between hot and cold flashes faster than, well, moving on… I don’t think that much of my missed time from my client work will be directly related to my ability to do what I do. It takes very little physical effort to type and drag my finger around my trackpad. I do need to have a clear mind, though, and I have read that can be an issue with the meds and getting the right dosing and cocktail working.

Knowing myself, I think my biggest issue after an event like that will be motivation. I’m pretty sure I’d come back home and it would be similar to when I graduated from college: “now what?” My working so hard right now is very much motivated in planning for the future. When that future comes, what will I have on my horizon? I’ve had plenty to do this weekend, but I haven’t felt able to do anything until after lunch today.

Why? I have no idea why. I just know it’s been impossible to sit at my desk or on the couch with my laptop and do anything to the benefit of my clients or our checking account. Now that I had a good weekend of rest and got some work done today, I’m confident that I’ll be able to go out and kill it this week. We’ll just have to chalk this weekend up in the “getting rest so I don’t burn out or get sick” column.

Yes, I have a column called that for days like this weekend.

I’d be very interested to hear from those of you who’ve been through a txp or have also thought similar things as me. What kept you from working/do you imagine will keep you from working?