update

[Robert]

wARNING:THIS MAY BE LONG!
oN THE 8TH OF FEB, i WAS DRIVEN IN EMERGENCY TO THE HOSP BY MY WIFE. I had phone contact with her early that morn,when the vomiting began.She urged me to check my B/P.I did and it was 230/165. Apparently she indicated she would call me right back but I was slipping badly at that point. She later told me she transported me to the hosp as I could not speak nor make sense.Upon arrival at the ER I was unresponsive. Once in the ER, I was found to have a temp of 103 and a 6 times normal level of streptococcus level. The infection was secondary to the previously mentioned pool chemical used at the V A. I had requested help from pool and program instructors,to no avail. It had become toxic to me and exploded into the strep infection. I was not concious till the next day and stayed in hosp for two weeks. Complicating this problem,, the crash of body enzymes  triggered the Hypokalemic Periodic Paralysis, leaving me paralyzed fro the first three days. R leg still turns black upon standing on it for 5 min. Was d/c'd from the hosp on Sat 2 weeks later, suspecting my friemdly HAE was yet to be heard from. Two days (Monday Morn) it exploded in my mouth,face, and area w/ partial impingement of airway. Went immediately to ICU awaiting arrival of Cinryze from Maryland.It did not arrive till Tues morning,leaving a pretty scary Mon nite and using my own cocktail (approved by the doc) to hold off full larngyl edema) It worked.
There is MUCH more to this episode than I can hammer out on my son's laptop here.Will fill this in later? But AFTER the d/c from ICU,theHAE hit full blast again late last week and continues on now. We are struggling w/ local V A and what they are supposed to do to provide Cinryze 2x per week here. It is in some level of process.Meanwhile, I am restricted to TOTAL bed rest as my infected right leg turns black when stood on foe more than 5 min. Needless to say, my total knee replacement recovery has come to complete absolute stop till the infectious disease is finished.
Since return home from the hospital last week, I have had three FULL episodes of Hae in hands,pelvis,feet and elsewhere. It has been constant. We are having a hassle w/ the V A over their now decreed desire to not keep it on hand @ the civilian hospital. Next step is to involve the Inspector General of the VA regarding the issues.

[Robert]

It becomes apparent the local V A is still choosig to see HAE as an anaphalactical entity rather than an immnunological one. Here in good ods Topeka, they aree floating the idea I should be sent to St Louis V A for a second opinion as to whether or not I would benefit from Cinryze. Lois tells me we have Berinert now local,but I'd prefer-after all that has transpired in the past 8 weeks, NOT to need crisis/rescue. Today promises to be rife w/ struggle w/ V A system to -again attempt to educate them as to how serious this HAE friend really is and what HAE folk have put together here.

[Kath]

I just had a peek and saw what you had been going through, terrible all I can say, just go ahead and educate them docs, we should all do that. Have no time to write more, hold on Bob. Keep us informed.Bye.

[Lisa Simmons]

That is just horrible to hear. I was just talking with family this week and commenting on how bad the VA can be to the patients. I don't even have words to describe how horrible that is to hear- i hope they approve you soon for the Cinryze or figure out something to help you since their are options out there.
Lisa

[Robert]

Tje crux/bottom line of the issues I find out is that the VA is trying to find a way OUT of paying for the Cinryze as it is sooo expensive...-Even though I am service connected for the HAE which=by law- means they must provide meds for it, they are shopping for a V A doc who will tell them what they want to hear... The crap most of you hear or are told about the V A being there to help ain't so true in sooo many cases!

[GA1477]

Dear Robert,

I am a new patient with AAE and am just now using this forum.  I am so sorry to hear about all your issues and just wanted to let you know I will keep you in my thoughts and prayers.  GA1477