Sunday, January 24, 2016

Colonoscopy Procedure and Results

January 7th, 2016 - The official day of my scheduled colonoscopy, with final answers and results.

As some of you know who've kept up with me via my web site, Facebook, Twitter and Instagram accounts, I've had a colonoscopy and endoscopy scheduled since finding out the results of a relative who was diagnosed with colon cancer. Since the discovery of the relative's diagnosis, I have been on a personal mission to get the procedure done myself, and finally have a baseline of where I stand. Being a hemophiliac living with HIV, compounded with over thirty years of Hepatitis C (now cured), I was in the high risk category for digestive disease.

I would honestly have to say the most difficult part of this procedure is definitely the procedure prep the day before. Drinking the Golytely solution and not having any solid food, on top of taking diarrhetic pills will make you weak for sure. I powered through January 6th, and kept on my regimen of HIV medications despite only drinking beef broth and Jello. If I can do it, so can you! Let's just say that day was one not to remember.

Click image for larger version of pathology report.
The procedure itself was fast. I checked in to the hospital, and within minutes was in the back, undressing, getting hooked up to IV's and talking with nurses and my anesthesiologist. No more than thirty minutes later, I was wheeled in the back where I met Dr. Baskar, who performed both procedures. My confidence in him grew even more as he asked yet again, "Did you take your factor VIII?" There was an entire hematology checklist I had to follow before, during and after the procedures.

Luckily, I am happy to report I have no colon or bowel disease of any kind. Not even a polyp. The upper endoscopy showed mild gastritis aka GERD, but nothing alarming.  I am totally relieved by the results, and can now take a huge sigh of relief in knowing the final results.

In closing, this journey was no where near as difficult to accomplish as I had initially thought it would be. I was able to get the referrals to the specialists, visit the specialist, schedule the procedures and then have them done all within a two month window. If I can do this, than there's just no excuse or reason why you can't either. Get check out, get a colonoscopy and get the results you need to know about, especially if you have a family history of digestive disease.

Next up for me, getting my joints repaired, starting with the ankles first. Before 2020, I hope to be the bionic man.

Wednesday, January 20, 2016

Florida Looks to Expand Hemophilia Companies to Treat Expensive Disease

Yours truly was featured yesterday morning, January 19th, 2016 on NPR's Orlando station WMFE 90.7 FM. The topic, Florida is seeking to expand companies that provide treatment to it's hemophiliac patients. [read full article here].
by  (WMFE)

Drugs like these can cost more than $130,000 per year for patients with hemophilia.

Hemophiliac patients on Medicaid could have more options for treatment in Florida this year.The Florida Agency for Health Care Administration is asking the federal government to allow three companies to provide care for patients with the rare blood-clotting disorder.

Florida officials are asking residents for input at meetings Tuesday and Thursday. Hemophilia is a rare disease where a patient’s blood doesn’t clot normally.

And while hemophilia is rare, treating it is expensive: an average of more than $130,000 per year for each patient. There are just 183 patients on Medicaid with hemophilia, but treatments for those 183 patients cost $24 million a year.

Florida wants the federal government to allow three vendors. That way, the state says it will be able to get the highest quality, lowest cost vendor.

Joseph Burke is a 36-year-old hemophiliac living in Clermont. He said companies often try to get him on new treatments.

“It’s crazy just how they try to woo you in and get you on their product,” Burke said. “Once they have you in, it’s kinda like they got the golden ticket.”
Burke said his drugs cost roughly $30,000 per month. See below for the time and place on the meetings:

Tuesday, January 19, 2016 from 2 p.m. to 4 p.m.
Location: Agency for Health Care Administration
2727 Mahan Drive Building 3, Conference Room, Tallahassee, FL 32308
Conference Line: 1-888-670-3525; Participant Code: 371 527 4100#
Thursday, January 21, 2016 from 1:00 p.m. – 2:30 p.m. 
Location: Agency for Health Care Administration
6800 North Dale Mabry Highway, Suite 220, Main Training Room, Tampa, FL 33614

Tuesday, January 19, 2016

'Iron Max': Marvel Features Boy With Hemophilia in Iron Man Comic Book

Taken from this morning.

When 3-year-old Max Levy needed to get a metal disk surgically inserted into his chest to allow easier treatments for his blood disorder, his father struggled with how to tell him the news.

Then dad got an idea.
"We had just seen the movie 'Iron Man' few days before," said Dan Levy. "I said to him, 'Do you remember the scene where Tony Stark takes the port, takes the arch reactor out of his chest and puts the new one in? ... you're going to get one of those."

"'I get to be Iron Man'" Max responded, according to his father.

And that's when "Iron Max" was born."