Reply To: CIDP again?

April 27, 2015 at 8:13 pm

I reckon GH put into words along the lines of what I was thinking, but did not speak out, when he said it seems to him that you are not getting very good support.

This Foundation lists locations of 23 so-called Centers of Excellence. Maybe you can get to one. Mayo Clinic (Rochester, Minn) is one of them and it is a great place. If you are still being seen there you are lucky.

The Clinical Trial for Stem Cell Transplant (SCT) is still recruiting with a list of inclusion and exclusion criteria. Age greater than 65 and a Prior history of malignancy are two exclusions. However, there have been case-by-case exceptions.

A doctor at Mayo Clinic Rochester commented to me that he felt the Stem Cell transplant was rather like using a nuclear bomb on an ant hill. Yet, he doesn’t have to live with and deal with the chronic (never ending and inexorable) decline some unlucky CIDP patients experience. There used to be those on this forum stating unequivocally that the STC helped them. Seems like they were laughed off the forum. Too bad.

My own experience with home based IVIG infusions was a nightmare. First of all, Medicare has specific disability (homebound) criteria that must be met. Those criteria include “If a patient has an illness or injury and a normal inability to leave the home or it is a taxing effort to leave their home, they may qualify. A patient is considered homebound if it is a taxing effort to leave their home and they have any of the following (omitted) and In addition, there must be a medical necessity for the services provided, and the services must be given under a physician’s Plan of Care.”

Perhaps you meet those criteria.

Secondly and Far Worse is the lack of suitably trained IVIG infusion certified nurses to come to your home. You cannot have a just out of needle sticking school someone who knows nothing about IV line size and drip rates, yet alone what to do if you get an infiltrated IV. Or, if you start to have a medical reaction. Or how expensive the liquid is. I once had every available ‘sticker’ from the home care company fail to get a good stick after an infiltration. Their answer? “Oh, you have to throw the rest of this away.” Yeah, right, not my $8,000 worth.

And then, add IVIG shipping and refrigeration problems on top of that.

If your doctor were really familiar with infusing IVIG, picking a company would not be a concern. It would be part and parcel of his written prescription.

You stated “they seem to want to do it at home.” Who is they? Well, it’s irrelevant if the doctor sends you to an infusion center.

Return to you are not getting very good support.