Ken's Ordeal Part 13: Scans and more Scans

Ken has returned to the Milwaukee Veteran's Medical Center a couple of times for scans that are designed to reveal infection in the bones.  The good news is that the scans reveal no infection.  Why the knee replacement failed (it's been getting worse for over 10 years) remains unknown.  The chance of post operative infection is still a great concern. There is some confusion as to whether Ken can go out of the VA system (due to backlog of surgery scheduling) or not.  The "patient advocate" is trying to get that clarified for us and if Ken has to stay at the VA he is trying to get the surgery expedited.   Meanwhile, Ken can barely walk.  He uses a wheelchair when he has to go to the clinic.   

As for the rheumatology issues, prednisone is the treatment of choice for RS3PE, the disease Ken apparently has.  He had prednisone many months ago with no change.   As I mentioned last post, RS3PE is sometimes connected with tumors.

This series of posts started with a diagnosis of an adrenal tumor, a pheochromocytoma, which was removed last February.

When prednisone doesn't wok, a tumor is suspected.  The VA rheumatologist is scheduling a positron emission tomography (PET) scan, an imaging test that uses a radioactive substance called a tracer to look for disease in the body.  We assume the PET scan is checking for cancer, though no one has said this.  That is the primary reason for PET scans.

The scan is projected to last two hours and, like an MRI, is done in a large "tube."  Because of excruciating pain, Ken was unable to lie still for MRIs at Mayo that lasted for a much shorter time.  We informed the rheumatologist of this, and we are waiting to see what they suggest.

He also has an open wound on his big toe that has been there for a while.  He has been to the VA podiatrist twice, and yesterday finally saw an RN in the wound clinic.  I hadn't seen the wound for a few days, and I was shocked at what I saw when the dressing came off.  His toe looks horrible.  The RN says it is not infected, just not healing and she is trying out some high-powered cream  He goes back in two weeks.

Ken is deteriorating.  He is weaker, the weight loss continues, along with the severe pain, and he can hardly get out of his recliner.  He can only walk very short distances.  Yesterday, I am chagrined to say, as I tried to help share the urgency of the situation with the nice man who is the VA Patient Advocate, I started crying.  I don't cry in these kind of situations.  Not usually.  It isn't that I think crying is bad, especially given the nature of this whole process, it is that I am afraid that if the dam breaks, as it did yesterday, I won't stop.   

Ken has been on short-term disability which now should be switched to long-term disability retirement.   He received a simple form from the insurance company back in mid December (about the 5th or 6th one that has had to be filled out over the last year).  He sent the form to his primary care physician--the new one at the VA.  A few days ago he got a call from the insurance company asking about the whereabouts of the form.  Two calls to the doctor led to him saying that he did not know Ken well enough to fill out the form and that he should go back to his doctor at Aurora to get it filled out.  This from a physician who was quite frank about having not looked at any of the numerous records that Mayo had sent to him.

Ken relayed this to the insurance company.  They said the form had to be from his current doctor, not from one who has not seen him in months.  Of course. 

Ken called and asked for an appointment with his VA doc.  This was refused.

So yesterday we spoke to the patient advocate about this, as well as other issues.  He contacted the primary care doctor and later relayed the following to Ken.  Dr. __________ says, "I can fill out the form for Mr. George if he insists.  He won't like it, because he may lose benefits.  I do not think he is disabled."

We have asked for a different primary care physician, but do not know what will happen.