The Knee Journey & Other Complications

**This is long so grab a beverage before you slog your way through this epic tale. 8-)

I started having issues with my right knee in 2018.  X-rays showed the joint was bone on bone.  I began having steroid shots(some times in just the right knee and sometimes both).  I had a PCP who knew how to give them(he eventually moved on to the Philly area to specialize in geriatric patients).  I have a messed up right shoulder as well(had bursitis in it years ago)but the shots never helped there.

Anyway, when my PCP left in late 2021 I then had to go to the Orthopedist office in that medical organization for help.  They did more x-rays and guess what?  The joint was still bone on bone. lol  The ortho refused to do a TKR(aka total knee replacement)on me due to my weight/BMI and only offered to continue giving me shots.  He said I had to lose 40 lbs. before he'd even consider surgery.  Well, I had already lost 100 lbs. over the previous years, had cruises bought and paid for coming up and my son was getting married so I couldn't be out of commission for up to 1 year with a knee surgery at that time. Plus I have spinal stenosis which was taken 2 inches off my height which has made my BMI weight even worse.

The cruises came and went and the wedding took place in Feb. of 2022 and we started working on the house in order to sell it, then the packing to move happened.  We moved down here Fall of 2022(I got a shot before we left PA)and I figured I'd look into surgery and dropping more weight once we got settled.  Well, "settled" didn't happen once I had that 2022 Xmas eve leg wound at Sissie's house.  Then I was in Wound Care for almost 3 months trying to get that injury closed and healed up.  After finishing with the Wound Care folks I could barely walk since I had to spend most of that 3 months reclining in a chair, which had the muscles around my bad knee atrophying, which made my knee mobility even worse.  Went to my NP at the end of March(had to use a wheelchair to get me into the office as I was immobile at that point)and she gave me a knee shot.  It took 3 days for my knee to move again after that.  

In April I contacted what I thought was a good orthopedist down here.  He said if I lost some more weight he'd do the TKR surgery.  Then he looked at the healed up wound on my shin and declared, "I don't know.  You could lose your leg if I do this TKR and it gets infected."  Then he offered me a knee shot(knowing full well that I had to be 3 months out from any kind of steroid shot to have the surgery.)  I got the feeling that he didn't want to do the TKR on me, even if I lost more weight.

I went back a month later, after losing more weight, and he didn't see a problem with my shin wound now but trying to be upfront about all my medical stuff, I told him about my then recent initial Essential Tremor diagnosis and that the neurologist wanted me to have a brain MRI in July.  Suddenly, the surgeon said he had to see the MRI result before he's put me on the schedule for surgery.  Shutdown again.  He also didn't raise an issue with me being on a biologic drug that suppresses my immune system which raised a red flag with ME.  In addition I found out he uses one of the many robotic surgery aids, which means your incision is open longer than if the surgeon does it the old fashioned way with his own hands. Hmmm.
So again, he would not put me on the surgery schedule.  I swear(and Hubs agreed)that he had no intention of doing a TKR on me as at every visit there was a new roadblock(and multiple offers of giving me a steroid injection).

The neurologist in question did NOT get back to me for a full month after the MRI was done and this orthopedist did NOT reach out and follow up with me after this April appointment.  Again, he offered me a knee shot at this appointment.  If I had waited on the neurologist and this surgeon I would still be hobbling around in pain.

I had a telehealth appointment later that same day of my last visit with the local orthopedist ,with a TKR surgeon outside of Columbus OH.  We had the option through our health insurance to use one of their COE(Centers of Excellence), teams of elite joint replacement surgeons around the country(places like the Mayo Clinic, Johns Hopkins, Cleveland Clinic, etc.).  Top notch surgeons.  I had to apply and wait for one of these surgeons to accept my case.  Then they fly you there, put you up in a nearby hotel and pay for everything(from Uber rides to meals to DME needed to the price of the surgery). I had one of the Columbus OH surgeons accept me as a TKR patient.  So I had the phone appointment with him that same day.  Even with my other health issues which were all under control he didn't see a problem with doing my TKR.  I asked a lot of questions.  Among them whether he used a robotic aid in surgery.  He did not and as a person with a lot of common sense felt that surgeons used them because they were a new "toy" and surgeons like toys.  There is not empirical evidence yet that using a robotic arm in surgery gives the patient a better result he said.  He also brought up the immunity suppressing biologic drug I was taking and that I'd have to be off that for up to 4 weeks before surgery and 4 weeks after surgery.  I crossed my fingers that my HS would stay in remission for 2 months and agreed to stop taking that drug.  So this surgeon had no problem with taking me on for a TKR, even after I told him about my neurological issues, the brain MRI, etc.

The Ohio operation was top notch and on the ball.  We got all the forms and paperwork done and I attempted to get my then PCP to order labs and an EKG within a month of the scheduled date of the  surgery.

Had the labs and EKG and had them faxed to the Clinical Assistant for the surgeon in OH.  I got a phone call from the CA the next day.  My labs were great but the EKG was unacceptable.  I knew when the nurse was doing it in the office it was not going to be good enough.  The CA said we'll keep you on the surgery schedule but you have to resolve this EKG issue asap.  So I messaged the PCP office, slightly panicked, and demanded they refer me to a cardiologist for a new EKG.  The PCP KNEW going in this was a clearance for surgery so why didn't they send me to a Cardiologist to begin with?  I got in with a cardiologist and they ran me through 4 different heart tests(EKG, chemical Stress test, and 2 ultra sounds-one before the stress test and one after).  The Cardiologist called me early that same evening himself to tell me I was AOK for surgery and they faxed my results to OH.

I found out later that the Clinical Assistant called my then PCP after receiving the abnormal EKG and asked them since they had a patient with an abnormal EKG what they planned to do as a follow up.  She was told they had no plans to retest or address the issue further.  Nice, right?  That's what you get when a medical organization gives a 64 year old woman to a Pediatrician as a patient!

Now as far as I knew, in the state of Louisiana, in order to get an order for PT(after surgery)you had to have a LA doctor write the prescription.  At least that is what I was told by the PT office where I had been going in July/August for my lower back pain.  My then PCP had agreed to write the PT order and had given me an appointment for a wound check about 10 days after I returned from surgery in OH.

A week and a half before flying to OH I am out of refills for one of my prescriptions so Walmart(where I get my Rxs filled)contacted my PCPs office to get her to refill the drug.  I waited 3 days, called the pharmacy and still they hadn't heard from her, so I messaged her office on the patient portal requesting the drug be refilled.  Another 3 days with no response so I am in Walmart anyway so I go ask at the pharmacy if the dr. had gotten back to them.  She had not.  I tell them to send another request.  Call Walmart a few days later and still no response from the doctor.  So I send yet another message through the portal and ask if there is a problem here?  I've had the pharmacy send 2 requests and I've messaged twice with no response over the course of more than a week. Can I please get my drug refilled?

Then later that day I get a phone call, from someone identifying herself as "Shelby".  Now this is not the PCP or her nurse and I have never dealt with anyone at this facility by that name.  I don't know if she's a doctor, NP, PA, nurse, receptionist, janitor, someone in the waiting room they paid $10 to to make this call or a hitman.
"Shelby" proceeds to tell me my PCP is firing me and no longer wants to treat me because I am "unprofessional".

Seems to me a PCP who doesn't give a patient enough notice and in writing, especially a patient who was flying to OH for surgery in less than a week, is unethical, immoral and considered patient abandonment and this PCP is the unprofessional one.

My wound check appointment immediately disappeared on the portal and the PCP was not going to write me a PT order.  She just dropped me cold, knowing this would put my surgery in jeopardy.  Nice.

Hubs and I flew into panic mode as the surgeon needed PT arranged and the wound check before surgery.  Luckily we also had through our insurance a telehealth PT outfit.  Hubs called them and found out, a doctor in any state can write a PT order and have it filled in any other state by a licensed facility.  The PT facility I had dealt with for my lower back pain had a policy of only taking PT orders from LA doctors but that was very unusual come to find out.  So we found a PT facility closer to where we live and set up sessions for when I got back from OH.

I also had to find a new PCP and I went outside of the medical organization the ex-PCP was part of, as I have found it lacking in so many ways.  I found a doctor who wasn't primarily a Pediatrician by trade and set up an initial visit in October.
But I still needed someone to do a wound check as I didn't think it would be a good call to have a brand new PCP do it at my first visit.

First Hubs reached out to the orthopedist I had been seeing here, as I was his patient since April.  He explained the situation to the doc's nurse and asked if he'd do an incision check, that's all.  The nurse called back the next day and said the Doc would NOT do this one small thing.  She kept saying he "can't" do it.  After she reiterated this statement 4 times as he pleaded with her, Hubs got fed up and told her, "Stop saying he CAN'T do it, the fact is he could do it but he just WON'T do it!" and hung up.

At PT I found out that if one doctor does a surgery on you, around here, no other surgeon will do a follow-up or revision if something goes wrong.  Basically, the surgeon in OH now "owns" that knee.  If something ever happens to that knee and I need care for it, I would have to go back to OH and see him.

So I reached out to our old NP at that shit show clinic we left.  She is a lovely person, more than competent NP and she set me up with an appointment for a wound check and it was so nice to see her again.  As far as medical personnel I've dealt with in Louisiana, she is the only one I trust(the jury is still out on the new PCP).

Now that I am past all this crap and well on my way to TKR healing I am considering suing that old PCP(the Pediatrician who wants to do well baby checks and give vaccinations). At the least I'll be sending a scathing letter to the CEO of that medical organization.

And that's just what went on with the surgeon.  I've got more tales to tell about the worthless Dermatologist and the incompetent Neurologist I've had to deal with down here.

Some story, huh?

Sluggy