Friday, March 20, 2009

Wha??? Why??? Waaahhhhh!!

Yeah, not so good of a day after all. In fact, still trying to grasp the situation and keep my emotions in control.

Here's the scoop. Splenda's dad died back in 1996 or maybe 1995 quite suddenly. Got ill, and within a matter of days, ended up on life support which the family had to remove. Never quite clear what the issue was so an autopsy was performed. The diagnosis? Interstitial Pulmonary Fibrosis. A somewhat vague disease but basically, the lung cells harden and scar up thus diminishing lung capacity until completely gone. Sure, there are more accurate technical terms but from our research, this is the easiest way to describe it.

A couple of weeks ago, Splenda's brother sent an email to all his siblings telling them that he was having some shortness of breath, was working with a pulmonologist and investigating the diagnosis of IPF and the genetic familial ties. He provided some information and urged every sibling to get some baseline testing.

Working in the medical field as I do, I have access to know who the best doctors are here in the state and have connections to get myself or my family in when normally practices are closed or are limited. With that, we luckily got Splenda in with the chief of Pulmonolgy at our HUGE Mother Ship of a facility/hospital. They ran some standard tests such as a chest xray, breathing tests, blood tests, and lung capacity work ups. We then waited for the doctor to come in and explain it all to us.

I'm not gonna lie, I felt really calm. I really felt like Splenda has always inherited more of his Mom's side of the gene pool and that he wouldn't have any issues, that he was going to get the all clear.


Instead we were informed that there was a spot on the chest xray that indicated IPF. That his lung capacity showed that he was 25% under what he should be for a man of his age, weight, height and physical fitness. He ordered a CT scan for right then and then told us to come back after the scan. It didn't take long and we were back in his exam room. He laid out the diagnosis. Yes, Splenda you have IPF. You are in the early stages, the CT scan will give us more information, I won't have the final results for another week since I will be out of town. We will get back together then and discuss the next steps. We would like you to get involved in a study up at the U, where they are researching genetic familial IPF. It is consecutive generations, so now my sons are at risk.

Okay, wow. Um, where to start with the questions?

1. Anything we can do to stop this or cure it? Is there anything that will make it worse? Or better?
A. Nope. No cure. Exercise won't make it better, it won't make it worse, but it's good for you, so do it. There are treatments when you get to the advanced stages such as steroids, oxygen and chemo-like medications. On bad air days, you are now in the group of people who need to be indoors. Avoid dust or other chemicals that can get into your lungs that can make it advance quicker.

2. When should our boys be evaluated?
A. About age 30. Knowing any sooner isn't going to do help anything. Except advise them to avoid smoking and exposure to second hand smoke.

3. What are some options?
A. If your siblings all test positive, then yes everyone should be involved in the research to help find a treatment and/or cure. Maybe in your lifetime that will be achieved, certainly hope in your children's lifetime that will be a reality. If your siblings do not test positive, then we will do a lung biopsy on you to determine the exact kind of IPF we are dealing with.

4. What if the CT comes back negative?
A. Not likely, but that fact that you've lost 25% indicates something, we will still follow up with you. If it comes back the way I think it's gonna come back, we'll monitor you every six months. We have a new physician coming on board who is specifically dealing with this and will be heavily involved in research so we can keep you here rather than sending you to the U.

4.. So should I expect the same as my Dad? Age 66?
A. Mid 50's to mid 60's

OW - he just laid out a life expectancy. Splenda is 46, that means 10 -20 more years is all? OWWWWW! Heart is hurting. Chest pain coming on from anxiety and eyes welling with tears. Okay, choke it back. Remain professional, you are in a clinic with people who know you very well professionally.

Our doc, gave us some literature to read, his card and another appointment is really the best in the valley. I trust him implicitly.

I think I am in a dream. We stumble through lunch and come home. I should be working but instead find myself looking up everything I can get my hands on about this disease.

Splenda jokes that he has a 1 million dollar life insurance policy. I am not laughing. Reality hits that this will now be a pre-existing condition for the rest of his life, which will affect insurance coverage. Weird how stupid things like that enter your mind.

Splenda jokes that at least he doesn't have to worry about his cholesterol anymore. I am not laughing.

Splenda jokes that with his time left he's not gonna be a Splenda Daddy anymore. He's gonna be a full Sugar Dadday. I am not laughing.

All of a sudden 10 - 20 years seems like not very much at all. I realize things could be SO MUCH WORSE. And that there are other folks out there dealing with health issues much more dire than this, but not gonna lie, quite freaked out.

Looking forward to a nice run in the early morning where I can think, process and work this through for myself. And then rather than look at socks tossed on the floor, or hangers put on the rack backwards, or countertops not wiped down, instead I will look at my very best friend in the whole world and enjoy him. Laugh every chance we get and focus on doing what we can to help find a cure for future generation.

With that, I'm off to bed. Gotta an early wake up run calling my name......