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Final Post on CF Fatboy

As One Door OpensThis is going to be the final post on CF Fatboy due to the increased government involvement between government agencies and the healthcare system. Too much of our lives are posted here as information that can be found regarding my meds, finance, insurance, hospital visits, foster care, etc.

God Save Our CountryAs we decide on a response to the healthcare changes that have been forced upon our family, this information must be as hard to find as possible.

I’ll be taking the site down on Monday and archiving it for a later date should these concerns be put to rest with new or repealed legislation. At such a time, I can easily bring it back to life. Yesterday was the end of the Facebook page – it has been scheduled for deletion. Thank you to the 400 fans there. Perhaps it will come back on the next great social network when the time is right.

It’s been fun. Thanks for reading and participating in our journey together.

Stay positive – the cure is on the horizon.

Clinic – Fall 2012

I just got back from clinic and had another great visit. Basically, my numbers are up, so if you’re a busy person and that is all you need to know, move along with your day. I wish I could, but the rest of you want details, right? Right?!

The big number: FEV1: 42% – yes, my favorite number. Those of you with better memories than me will know that’s also what I blew in March before we started doing foster care and after I’d started doing daily walks and runs. Then I blew a 38% in June after a full 7 weeks of fostering. I was wiped and had come off a cold. I’m still recovering from the life change of Grandpa’s funeral, the 2,000-mile drive, and lots of hours worked to afford to take that time off… and the cold Boy gave us again.


Other stats of note: my weight was a whopping 126.4lbs – up from 123 in June and several dips into the teens since then – and my gut was proudly rounding over my pants. My O2 was 96%, which is the minimum I’m satisfied with.

Three neat stats from my PFTs are:

  • My FEV1 volume is higher than in recorded history at 1.53L
  • My small airways (25%-75%) are higher than ever in percentage and volume: 0.69L, 17% (13% is my norm).
  • My PEFR (peak expiratory flow rate – or “how fast can you blow, like peak acceleration in a car”) is also higher than ever in both percentage and volume: 5.98L/s, 70%.

Before I got out of there, I got my requested flu shot, tetanus vaccine, and pneumonia vaccine. I expect to feel like crap any hour now, so I’m going to finish up a small project, get my pay “for the day,” and rest while Boy takes a nap.

An Update from Tallahassee

CartwheelsJust as I was finishing my nebs this morning, I got a call from an 850 area code – Tallahassee. I got so excited and dropped everything we were doing. The news is beyond good, but best digested in bullet points.

  • Aetna responded to them that I rec’d my booklet now (we have) and that I did request it on Jan 2 and mid-Feb (we did).
  • Aetna admitted that we did not get proper notice of the plan changing according to law.
  • Aetna admitted that we did not get a choice of new plans to choose from – but that was because it was supposed to just be a new ID card.
  • Aetna’s wording of the issue regarding my Rx costs made it sound like we were not the only ones in the system who were affected because it was an issue with a group number.
  • Tallahassee was going to get a reimbursement for us for any costs had we purchased Rxs at the improper rate (we didn’t).
  • They also said we can’t really get any compensation for our 20+ hours arguing with Aetna reps.
  • Tallahassee said they have been receiving numerous complaints similar to ours now, but ours was the most eloquent and cut to the chase, so ours led the way to the problem. They are auditing and attempting to contact everyone in the group who has these medications to assist them.

I feel like a champion for the little guys out there now. He thanked me for getting this info to them to help so many people. He said Aetna is a very responsive company when contacted and are more willing than most companies to respond well.

I told him that we confirmed that I had a grandfathered plan with a $5M lifetime max and asked him his professional opinion if it was smart to stay on that. “Absolutely,” was his confident reply. I asked him if I jumped to UnitedHealthcare if I’d be going from the pan into the fire and he said that if I did that, Tallahassee has no regulatory control over them because they are out-of-state insurers  – and it would actually be Golden Rule as the company. He said for the $640 we will be paying for my plan alone starting next month, I have an excellent plan that I should never consider ditching for another.

At the end of the call, I told him about my Twitter storm and the responses we got back. He said that is most likely the same department that Tallahassee deals with: the resolutions department. They are the ones who either give direct answers or solve problems efficiently.

David: 1 – Goliath: 0

Back Home from the Hospital

We got discharged at 3pm today! We’d simply had enough when infectious control came in to inform Beautiful that she needed to wear a gown, mask, and gloves at all times in the room with me for HER protection. I made a call to clinic, relayed that, and got the answer that it is indeed the policy.

I didn’t even have to ask (because Sue is the greatest nurse in the world and knows when I have reached my breaking point), discharge started, calls were made, texts were sent, papers were printed, and my street clothes went on. Somehow I was no longer considered a danger to Beautiful as we walked out of the hospital unmasked and got in the car together.

I’ll have several posts about my 5 days in the hospital – I started writing a post and stopped at 1200 words. It’s best digested in small servings, just like my food for the next week.

My stomach is VERY tender and does best with warm food and drink and my intestines are going to be their usual tender self for a week or more, but at least they didn’t have to operate!

Oh, hi, Kristen. You win the best nurse of the 8th floor award.