Breeze To Tornado! Wake Up Call Coming!!!!!!!!!

[WhataBreeze]

Healthier, Happy and Comforting Holiday To All:

For a list of reasons my postings were few and far between here at what I still will say was one of my own finest means of communication when first becoming an active member in several forums here at B/T. As I've continued my direction being the, "Only layman advocate in the world in regard to CENTRAL PONTINE MYELINOLYSIS," this last year truly has been very difficult on me. My personal health issues in question, all were direct symptoms from CPM. However, I have never posted a negative attitude involving my iatrogenic acquired disease of the central nevous system ever and I'm not going to start today. Most of you that are still here at B/T know that about a year and a half ago I relocated after thirty two years and moved back to my home to live with Mother who now at eighty six can run rings around me at times. As I'm typing very slowly now, (tremors that have been progressing limit my activity) it's not going to keep me down from my continuance to keep communicating to the world about "CPM Awareness."

OK, now for the reason this posting is going up which is strictly in regard to a call I recieved from a very caring wife of a man whose family truly believes their husband/father, etc. may very possibly have Central Pontine Myelinolysis. As I'm sadly still the only CPM victim both alive and available to assist as I do so many times, this call practically knocked me down and put me directly into one of my "Non-Epieptic Like Seizures." Of course those who remember me must also know my "Official Neuro-Service Canine Franky, Soon to Be four years old on January 9th. Franky is known to be able to communicate with me in our normal mode at all times with or without the element of a seizure. You must take in what I'm about to tell you now on a second hand basis.

This man in question is a fifty two year prior heart bypass victim who currently is a #2 diabetic, on SSDI and Medicare only.

In the latter part of September, he started with a case of a severe flu. He has not been home since October 7th. Each of these hospitals I now will mention that usually "Is Not My Style," to open with names but knowing what I have been told, "Someone MUST get their act together very quickly!

[LIST=1]
Enters Latrobe Hospital in Latrobe, Pa. After "FOUR DAYS," they check themselves out after being told it's a gallblader that needs surgery.

Enters Indiana Hospital in Indiana, Pa. After "FOUR DAYS," they say it's a kidney issue, start him on peritoneal dialysis and recommend him going to a hospital that is more equiped to test him.

Enters University of Pittsburgh Hospital. After "TWENTY DAYS" batteries of tests they also have nothing to tell the wife.

Enters Cleveland Clinic in Cleveland, Ohio. After "FORTY DAYS" of tests, they can report one serious event that was immediately communicated to the wife as her husband was experiencing a "Bleed Out," through his colon and was taken to surgery immediately as it was an issue with his liver. Bleeding area was cauderized. Again the wife gets NO information and it's time to go.

Enters U. of Pittsburgh in Pittburgh, Pa. (Round TWO) The wife truly had NO where to go. Currently the plan is while he is there she will find motel close so she can be with her husband.

All the way over the last seventy plus days he has been now having definite neurological complications that the symptoms are simular to Central Pontine Myelinolysis which is why I recieved this call. Please note he still has yet to be diagnosed with anything except for the fact that, "Plain common sense tells you that your either not getting the entire story OR can we have another IATROGENIC issue that nobody wants to say or admit to anything.

PS. Can you imagine what the cost to Medicare along with the fact that these people have no backup carrier so they are staring at twenty percent of the gross billing.

Care to join me with this one? G-d Bless...

Franky and Breeze

[WhataBreeze]

Early this morning I received a very cordial email from the family member who first contacted me in regard to assisting in the matter as disgussed above. At this point I had a little more information but even with it as stated previously, "I'm a layman advocate, not a doctor," but when it comes to certain demyelinating disorders especially those caused by Iatrogenic reasons, (Error in treatment) I can stay up with the best of them.

Late last night as the party in question has not been diagnosed, the wife was told that her husband is in a stage that he will pass in a matter of time. He will normally be discharged to either a nursing home or to their home with the assistance of Hospice. She was also notified that one of smaller local hospitals was willing to admit him again for what we can assume would be his final place of rest and better for the family.

Through all this that was opened and now going to be totally in God's hands, I wish you all are blessed to receive a memo as both I and a previous Central Pontine Myelinolysis victim of mine did (he originally referred the family to me) knowing a loved one is preparing to go during this holiday time. In lieu of the reality of what this is all about, my current thoughts will be brought up at a later period.

"There is a reason for everything." G-d Bless...

Franky and Breeze

[Susie_que]

hey Breeze ~ it's been a long time, hoping you & yours are doing good (considering the state of things.... )
Have you heard anymore from these folks ?
Just amazes me that many locations couldn't figure a dang thing out ~ or were they just keeping their mouths shut........ for fear of what......
God Bless you for trying to help others, tell Mom hello for me.
My own Mom will be 90 this next year. Give Frankie a special hug for me as well, I know how important he is to you.
~s

[WhataBreeze]

Hi my dear friend Que, Community Members and Internet Viewers:

Just a quick update in regard to this very sad scenario we are suppose to understand as the some of the finest healthcare available. Yes, its now 90 days (Three Months) as the same gentleman age 52 has been admitted as an inpatient starting with a case of the severe flu whose credentials state that he is a previous heart bypass patient with diabetes in addition. As of yesterday after talking with his devoted wife who has been with him everday since the start in early October tells me he is in ICU, can only move his head, (He is coherent) a few toes on one foot as well as a few fingers on one hand. He still has a feeding tube in place and so far, "THE WIFE HAS YET TO HEAR ANY DIAGNOSIS."

You may have asked, why am I involved in this? Many of this mans symtoms do parallel those of Central Pontine Myelinolysis which even as a layman means nothing until a definite diagnosis is given. As stated I was contacted by the wife, as the first cousin of the patient previously worked with one who does have CPM and it was he who referred them to me. I really will help anyone if I can. My availability is not only open to those with CPM.

With the wifes approval, I have contacted the team under Dr. John McDonald MD, PhD, at the International Center for Spinal Cord Injury at Keneddy Krieger Institute and Johns Hopkins University. I would think after lying in the beds of two top ranked healthcare institute/research hospitals for three months still with nothing in for diagnosis. Yes, thank God for Medicare but I do find it unique he is kept as long as he can be under insurance regulations then bounced on to the next. Love to know the amount of this bill as they are still responsible for about 20% but don't hold me to that.

How many more of these episodes are currently in action?

Franky and Breeze