December 5 update ~ so much has happened since my last update…
TL;DR: Back to driving, another infection; no hope for eradication; feeling hopeless.
DRIVING - I am once again an independent adult driving as needed. I put the seat all the way back to get in/out and then move it into driving position. I’ve driven to/from Roanoke (2 hrs) several times.
KNEE STATUS - my knee buckles two - four times a day. Fortunately, I’ve not fallen. I don’t use the knee immobilizer unless I’m going someplace new. I’m working on getting a locking knee brace. The orthotics place order a semi custom brace and I tested it out yesterday. It didn’t slip and I felt confident and supported. The OS needs to send his notes and ICD code and then insurance should cover it. Hopefully, it will be sorted before the end of the year.
INFECTION - I have two open wounds on the leg. One day in early October, the drainage was bright green which is a clear indication of a Pseudomonas infection. The PCP prescribes Cipro (the only non IV Drug listed to treat this infection.
I have to interrupt the update with another entry in the “Medical Adventures in Rural America.”
My PCP is five minutes from my house. The Wound Care clinic is 60 minutes from the house in another county. The drive is on a two lane road over Droop mountain (3600 ft). The road is very curvy and no fun to drive in bad weather. I get to the Wound Care clinic and the PA says I need to be admitted to the hospital for IV antibiotics.
This really throws a wrench into my plans as I was planning on having the wounds cleaned, then have lunch with a friend and then go home. I agree to go to lunch and be at the ER within two hours for admission. The hospital is 25 beds and very small.
I was in the hospital for 24 hours and received three doses. Once the blood level was stable, I was discharged for a five day regimen of IV antibiotics via a PICC line. The tiny hospital didn’t have the equipment (ultrasound) needed to insert the PICC so I had to drive 1.5 hours back to the hospital near me. The RN put in the PICC line and then everyday for five days, I had to drive the hour to the tiny hospital for the infusion. What fun!!
Now, back to the regularly scheduled update…
The wounds appear to be healing which is good. I change the bandages daily and put Medihoney on them. I see the Wound Care PA every two weeks. The deepest wound was 5 mm deep and is now 3 mm. Progress, right? Well maybe not. See next section…
OS VISIT ~ saw OS on Monday for 3 month check. Accoriding to the XRay, the implant looks good. I’ll see him again in August for a one year check. The OS was concerned about the infection and the still open wounds. In his opinion, I still have an infection in the metal of the knee and will have always infections. He doesn’t think the wounds will ever completely heal as a result. In his opinion, the only way to completely eradicate the infection is to remove the source (the metal in the knee) and the only way to do that is to do an above the knee amputation.
I asked him to put in another infectious disease consult. He will but also said he figures they deny it because there’s no way to medically ”fix” the infection. Oh well.
In Conclusion, I think I am as good as I am going to get. No one is talking about doing anything to improve the situation - just managing status quo.
I really think I need to get in with a good ID program and will investigate something in Charlottesville VA or maybe go back to HSS in New York. Thanks for sticking with me so far.
@Jamie, do you have any ID or OS recommendations at UVA?