Changing the standard of thinking.

Pre-Sinus Surgery Endoscopic View (Semi-Graphic)

The Long Roll to the ORDue to my severe, debilitating headaches in the last couple of months, my CF doctors went down the road of investigating sleep apnea as the cause, as that’s a very common symptom of “older” CFers. Strange to say that at a day short of 32 years old, but it’s quite historically true. After the sleep study, I am mildly apneatic, but after they received my results from another CT scan that I requested, they saw a shocking report that said my sinuses showed worse sinus disease than my October pre-surgery CT scan!

Within the course of 7 weeks, my sinuses were worse off than before my surgery number 9. Unbelievable! Like any good doctors would, they suggested I get a second opinion, this time from a doctor on the TGH campus across the road from them so they would be able to visit me in recovery or if I spend the night for observation. Dr. Tabor had a cancellation that next week, so I saw him in a Tuesday. He just so happens to be about my height and quite tech-savvy by the array of equipment I saw in the room.

[Read more…]

Cystic Fibrosis and Bi-Lateral Lung Transplants as Therapy

Donate LifeI’m pretty sure I’ve written about my views on CFers and lung transplants as the ultimate therapy/treatment nearly to the point of it being ad nauseum, except it may be continually overlooked since it’s often in combination with a manifesto about taking control of your life and doing everything you can do keep going on your original equipment as long as you can. Some of my comments about my view on transplantation on Facebook have shaken up some dust, gotten people upset, and encouraged/strengthened others. Since it’s such a mixed bag and Facebook is hardly the place to write 1,400 words on the topic, here goes!

Here, I am fighting to Change the Standard of Thinking of patients, family, friends, and even the medical community in several areas, and this is one of my most passionate, though likely not the most far-reaching and definitely my most controversial. The way I see it, if everyone thought they would eventually need a transplant no matter what they did regarding treatments and compliance, why the flip should anyone do any at all? They’ll just get new lungs earlier and go about their lives with digestive, sinus, vitamin and mineral absorption issues. I am not against transplants as a therapy or the people who get them. What I am against is the mindset that everyone with CF will need a transplant someday to avoid death or else live on life support in a hospital until they die once they can’t sustain themselves.

Keyword: Everyone

Why Fatboy is Pro-transplant and Organ Donation

Notice the banner for Angel Cove Organ Donation Awareness in my sidebar. [Read more…]

True Story of Hospital Admissions That Scares Me

ยฉ2009-2010 ~jgwr

Today was a full day at the hospital complex for me. I had a 10:30 Dexa scan (bone density scan) in the main hospital and my 3:30 appointment for a second opinion on my sinus situation across the road at the USF Health building, still on the main TGH campus.

I got there early to head up to see Sue to get a print-out of my latest meds and the ENT’s new patient form since I’d neglected to print it before leaving the house. Her having those for me when I arrived made me feel even better that we got her a little something for Christmas to let her know how much she’s appreciated for all she does for me and mine ALL year long. Later in the day, just to prove I still had the skills, I got a charge removed from my account by calling my insurance all by my onesie. Gotta keep those skills sharp!

Down to admissions I went. Italics shall be the nameless person in admissions who goes by the name SHEILA according to her name tag. Brackets would be what I’d have liked to have said but didn’t have the cajones to do so.

Mr. Petersen! Number 6 on your left!

As I got to the station, no one was there, but I placed my driver’s license and insurance card on their edge of the counter since they need it every time I get a wristband. She arrives and sits down.

Hi, let’s see. Is your date of birth 5/5/1963?

No, that would make me 47 years old. I am 31. {Do I really look like I’m 47? I still get carded for crying out loud!}

Oh!! I’m so sorry!

You have the wrong patient. {Obviously.}

[Read more…]

First Night With an AutoPAP Machine for Apnea

Alien Face-suckerThe age of AutoPAP is here. They concluded from my sleep study at the hospital that I have a mild case of both obstructive and central apnea (7 and 4 episodes, respectively) and enough desaturation events to warrant an equipment therapy.

Enter the Philips Respironics System One AutoPAP machine: a heated, humidified, auto-adjusting variable pressure CPAP. CPAP is a misnomer, since nothing about it is constant outside of its pattern while I’m not in need of assistance. It has a range of 4-20 cm of water, but we have it set at 4 cm for inhalation and it steps down to 1 cm as I exhale so it’s more comfortable. The pressure adjusts when it senses an apnea event occurs, both the exhale and inhale pressures.

My initial impressions

I was taken aback at its size when the tech came to demo it. Many bread loaves are larger, and 1/2 of it can detach so you can leave the humidifier at home if traveling and can tolerate cold, dry air. [Read more…]

Pre-Sinus Surgery Endoscopic View (Semi-Graphic)

Due to my severe, debilitating headaches in the last couple of months, my CF doctors went down the road of investigating sleep apnea as the cause, as that's a very common symptom of "older" CFers. Strange to say that at a day short of 32 years old, … [Read more]

Cystic Fibrosis and Bi-Lateral Lung Transplants as Therapy

I'm pretty sure I've written about my views on CFers and lung transplants as the ultimate therapy/treatment nearly to the point of it being ad nauseum, except it may be continually overlooked since it's often in combination with a manifesto about … [Read more]

True Story of Hospital Admissions That Scares Me

Today was a full day at the hospital complex for me. I had a 10:30 Dexa scan (bone density scan) in the main hospital and my 3:30 appointment for a second opinion on my sinus situation across the road at the USF Health building, still on the main TGH … [Read more]

First Night With an AutoPAP Machine for Apnea

The age of AutoPAP is here. They concluded from my sleep study at the hospital that I have a mild case of both obstructive and central apnea (7 and 4 episodes, respectively) and enough desaturation events to warrant an equipment therapy. Enter the … [Read more]

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