23 Jun 2011, 3:07 pm
Callista wrote:
3 years is not a hard-and-fast limit; research in this area is progressing quickly and the median survival rate is increasing. That doesn't make it easier, but I just wanted to make sure you knew that the number your doctor's telling you is the statistic established in the past, not the one likely to be observed in the near future with the better modern medical treatment we have now.
Yeah. I'm trying to avoid the pitfall of looking at statistics as iron clad predictions. I'm actually looking at it as a range of possibilities. 50% mortality after 3 years is for secondary pulmonary hypertension. That also means 50% make it past that. I've run the best cast/worst case scenarios through my head. Best case is a wrong diagnosis. Next is a slow enough progression that research over the next decade develops some new treatments and something akin to a cure (it is currently considered incurable). In the middle is a Heart/lung transplant. This adds a median 10 years, but that isn't 10 good years. That's ten years of immunosuppressants and diminishing capacity so half of that might be high quality. Worst case is, well, really bad - a funeral in 12 months or less. Fortunately this last one is also an outlier.
See what I mean. In 24 hours I've already analyzed the crap out of this and still haven't even hit the academic journals. It's almost a form of avoidance. Keep crunching on the facts and I won't have to feel anything. But any way I crunch them, all things remaining the same, I outlive my daughter. This is what's going to cause me trouble. I can't hide these things. Once they come into my head it's like they want to burst out. My wife will want to know what i really think. I've got to come up with ways to say things nobody wants to hear.
Today has been a wasted day at work. I can't focus. I've got a headache and I've got to put on airs when I go home. I guess it's a good thing that I have one mood to all outward appearances.
_________________
When God made me He didn't use a mold. I'm FREEHAND baby!
The road to my hell is paved with your good intentions.
23 Jun 2011, 6:37 pm
wavefreak58 wrote:
Callista wrote:
3 years is not a hard-and-fast limit; research in this area is progressing quickly and the median survival rate is increasing. That doesn't make it easier, but I just wanted to make sure you knew that the number your doctor's telling you is the statistic established in the past, not the one likely to be observed in the near future with the better modern medical treatment we have now.
Yeah. I'm trying to avoid the pitfall of looking at statistics as iron clad predictions. I'm actually looking at it as a range of possibilities. 50% mortality after 3 years is for secondary pulmonary hypertension. That also means 50% make it past that. I've run the best cast/worst case scenarios through my head. Best case is a wrong diagnosis. Next is a slow enough progression that research over the next decade develops some new treatments and something akin to a cure (it is currently considered incurable). In the middle is a Heart/lung transplant. This adds a median 10 years, but that isn't 10 good years. That's ten years of immunosuppressants and diminishing capacity so half of that might be high quality. Worst case is, well, really bad - a funeral in 12 months or less. Fortunately this last one is also an outlier.
See what I mean. In 24 hours I've already analyzed the crap out of this and still haven't even hit the academic journals. It's almost a form of avoidance. Keep crunching on the facts and I won't have to feel anything. But any way I crunch them, all things remaining the same, I outlive my daughter. This is what's going to cause me trouble. I can't hide these things. Once they come into my head it's like they want to burst out. My wife will want to know what i really think. I've got to come up with ways to say things nobody wants to hear.
Today has been a wasted day at work. I can't focus. I've got a headache and I've got to put on airs when I go home. I guess it's a good thing that I have one mood to all outward appearances.
Does your wife know that your daughter is ill?
23 Jun 2011, 7:01 pm
Chronos wrote:
Does your wife know that your daughter is ill?
Yes. Sort of. My daughter told her the doctor said she had pulmonary hypertension but she hasn't obsessively researched the diagnosis like I have. My daughter has played it down. She might even be in a bit of denial.
I'm letting their knowledge of it evolve slowly. If the diagnosis is correct there are some unavoidable consequences. But no point in crushing hopes with ill placed pedantry. People seem to need to assimilate these things in ways decidedly different than me. I can't force my process on others.
_________________
When God made me He didn't use a mold. I'm FREEHAND baby!
The road to my hell is paved with your good intentions.
24 Jun 2011, 8:11 am
I want to thank everyone for their support. In a way I'm using you all to help process this. I can be 'full aspie' here without being judged for my hyper-analytical approach. Once I get over that maybe I'll be ready to be more "human".
That current facts suggest the the doctors are not wrong. The diagnosis explains too many of her persistent and evolving symptoms over the last 12 months. We need to wait for further testing to determine the severity and treatment. I'm not good at waiting. And I suppose there is still a chance that this is not her issue.
In a very aspie observation, it's almost like I've gone through the entire cycle of denial, anger, acceptance in a very short time. There was virtually no denial on my part. My curse of concreteness seems to avoid this. Anger? Hmmm ... too complex a set of emotions right now to describe anything. Acceptance? My thinking is already moving on to what do we do next. Fate is inscrutable. I cannot spend time second guessing and running endless what if scenarios through my head. It is what it is.
_________________
When God made me He didn't use a mold. I'm FREEHAND baby!
The road to my hell is paved with your good intentions.
YellowBanana
Veteran
Joined: 14 Feb 2011
Age: 51
Gender: Female
Posts: 1,032
Location: mostly, in my head.
24 Jun 2011, 8:38 am
wavefreak58 wrote:
I want to thank everyone for their support. In a way I'm using you all to help process this. I can be 'full aspie' here without being judged for my hyper-analytical approach. Once I get over that maybe I'll be ready to be more "human".
That current facts suggest the the doctors are not wrong. The diagnosis explains too many of her persistent and evolving symptoms over the last 12 months. We need to wait for further testing to determine the severity and treatment. I'm not good at waiting. And I suppose there is still a chance that this is not her issue.
In a very aspie observation, it's almost like I've gone through the entire cycle of denial, anger, acceptance in a very short time. There was virtually no denial on my part. My curse of concreteness seems to avoid this. Anger? Hmmm ... too complex a set of emotions right now to describe anything. Acceptance? My thinking is already moving on to what do we do next. Fate is inscrutable. I cannot spend time second guessing and running endless what if scenarios through my head. It is what it is.
That current facts suggest the the doctors are not wrong. The diagnosis explains too many of her persistent and evolving symptoms over the last 12 months. We need to wait for further testing to determine the severity and treatment. I'm not good at waiting. And I suppose there is still a chance that this is not her issue.
In a very aspie observation, it's almost like I've gone through the entire cycle of denial, anger, acceptance in a very short time. There was virtually no denial on my part. My curse of concreteness seems to avoid this. Anger? Hmmm ... too complex a set of emotions right now to describe anything. Acceptance? My thinking is already moving on to what do we do next. Fate is inscrutable. I cannot spend time second guessing and running endless what if scenarios through my head. It is what it is.
Hi Wavefreak,
I've been avoiding responding to this because as ever I don't quite know what to say - but I am sorry you have to go through all this.
Personally, I think your reaction is entirely normal and I can't understand why your wife and daughter are NOT obsessively researching!
That you have moved on to the practicalities of "what we do next" seems like progress. Getting going with the practicalities will help with the mind warp.
Take care.
YB.
_________________
Female. Dx ASD in 2011 @ Age 38. Also Dx BPD
