Tuesday, January 14, 2014

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.


Anonymous said...

I am just shaking my head in wonder/disbelief and blinking back tears. In addition to the prayers for healing and mercy and grace for Ken and for you, I think I need to ask for justice as well. That doctor should have his licence to practice revoked. In addition to not doing his job, he has no compassion at all. I don't know that I would be able to restrain myself from.......I'm not sure what but I'm sure it wouldn't be good. ((((Ken&Dorcas)))) Maureen

Shirley Boeckers said...

Unbelievable, absolutely unbelievable, we will continue to lift Ken up in prayer.

Mary Beth said...

"I do not think he is disabled." What a punch to the gut!!! I am praying for another doctor...you certainly need a second opinion on that.

I know you didn't want to cry, but I am certain it got the attention of the patient advocate in a way that nothing else would.

I have a relatively brief experience of watching my spouse on a downward course and wondering if he was going to ever turn the corner. It is devastating to be the advocate and not be heard.

Praying, praying.

Dorcas (aka SingingOwl) said...

Shirley, I hope they will allow us to switch, since there are 2 docs at the clinic and you recommend the second one. I was disappointed in the first place, but he seemed...well...okay. This was unbelievable.

Maureen, I know I must find it in my heart to forgive him, but yesterday and at 2 AM I just wanted to go see him and scream in his face--or worse. It is completely inexpicable.

It is true, his lab work is normal.

But...I just keep thinking, "Did he LOOK at him? Did he watch him struggle to rise from a chair? Did he not hear how difficult it was for Ken to gather his thoughts? Did he not see his swollen hand joints, nor hear his weak voice? Does he not think it serious that the man is on the narcotics he is taking and is still in severe pain? Did he not notice that Ken's handwriting is completely illegible? Does he not wonder how someone who is unable to tolerate even light physical activigy has lost 130 bls? How is this even POSSBILEe? And where is God?"

Mary Beth, it was exactly like a punch in the gut. After all that has happened in the last year, visits with what seems at this point like a hunderd physicians--it was very much like a physical blow. It is not as though we think he is right. Ken can hardly get out of bed. But--it hurt. It did something very bad to Ken.

Robin said...

"I do not think he is disabled."


Clearly the doctor is disabled.

Anonymous said...

My heart breaks here. Praying for clarity and for a breakthrough!!! And for God to bring you comfort. If I were nearby, you'd be getting a hug!!

Ruth said...

((((( hugs ))))) I keep praying but I'm afraid I'm making suggestions of things God can do to that "doctor" to help him wake up to reality. They aren't pleasant things either. Sometimes I don't mind being such a bad Christian.

LoieJ said...

I see that the comment I posted never showed up. My husband hates those disability forms. The questions aren't realistic about how much work a person can actually do. And he won't fill them out unless he has actually seen the person recently, which sometimes can create a problem. For example, my good friend's husband was extremely ill, but he hadn't gone to see my husband in a couple of years, so my husband declined to fill out the form, even though we are all friends. However, this case seems a bit different, like OPEN YOUR EYES, DOC. I hope you can see the other doc in that clinic, but what about the doctors in Milwaukee. Surely they have seen him more recently. Or the Mayo docs. There has to be an alternative.

Dorcas (aka SingingOwl) said...

LOL @ Ruth...and I have similar thoughts...shame on us. Thanks for the grin.

LoieJ, the form is really quite simple. This doctor did see Ken, since he is a new patient at the clinic. He saw him in the fall, and he made the referrals to Milwaukee. Ken suggested he come in for a second appointment so the doctor could ask specific questions or look at specific records from Mayo. Dr. declined and just repeated that he should go back to his previous doctor. The form is designed to be filled out by the PCP...

The rheumatologist at Milwaukee is filling it out for him, however.

This is more than the form issue. We figured we could get someone to do it. THis is more an attitude issue and the fact that he wouldn't see Ken the second time.


stinuksuk said...

Prayers continue to flow for you & Ken. Thank goodness for you Advocate. You really have to wonder some time about certain docs. Honestly.
God's peace be with you in the midst of all this insaneness, and in seeing all the changes in Ken.
God enfold you close to his heart and may you find strength and comfort.