Much of our healthcare is due to crisis. When I first met Rhett in 2006, the regularly scheduled crisis was the venous insufficiency in his leg. It would cause a big open ulcer. That precipitated constant threats from docs that he might need amputation.
Several times the ulcer was infected with MRSA and at least once he had gangrene. Each time the docs would bandage him up and send him home. Florida Medicaid would not pay for a wound care clinic or other effective treatments. It wasn’t until we were traveling through New Mexico that Rhett finally got some real help.
We were camping in some lava beds out in the middle of nowhere when a tiny black spot popped out on Rhett’s leg. By the next day, it was quite large and his leg was swollen. I drove until we got to a city and took him to a hospital. Those folks were FANTASTIC! They kept him in the hospital for a week and did more to make his leg better than anyone in Florida ever had.
After that, I was much more forceful and savvy when it came to dealing with docs and hospitals in Florida. But…healthcare in that state for poor people is the worst I have ever seen 😦
Once I married Rhett and moved him to NY with me, he got much better healthcare. The TBI Center did an extensive work-up on the effect of his brain injury. That was eye-opening for me and explained a lot.
Now that we are in Utah, our life together here started out with an ER visit September 1st that located a blood clot in Rhett’s bad leg. He began warfarin and LOTS of blood testing. Each time we saw a doctor, it was an associate of the original doctor, but never the same person twice. I would bring up concerns that were never addressed.
Then came the next crisis. Rhett kept falling and hitting his head. He usually would not even remember it the next day. When he fell the evening of January 9th and woke up the morning of the 10th all swollen and incoherent, I took him right to the ER.
That was a maddening experience!!! After the CT scan the docs said he needed emergency brain surgery. Then another doc said naaa…it was probably an old injury and Rhett could go home.
Nothing they told us that day stayed true very long. We ended up being there more than 12 hours and Rhett had further extensive testing.
For follow up I asked for Rhett’s PCP of record. Once we got to her office, she apologized profusely for letting Rhett slip through the cracks. She did a bunch of tests and referrals. Now she calls here regularly. I think she is worried we will sue her or something.
Rhett is definitely diabetic. He needs to do blood glucose monitoring. The visiting nurses are now supposed to do both that and his INR tests. The doc said his a1c is 6.2. They are also going to counsel Rhett on his food choices. I heartily welcome the help! Rhett can be very, very resistant to change and self-help. I am tired of being “the bad guy”.
The sleep study doc called yesterday to say someone would be calling to arrange a CPAP mask fitting for Rhett and CPAP machine delivery.
At the end of this month, Rhett starts seeing a psychiatrist for being bipolar.
What a whirlwind! All of these things had been talked about with docs who never followed through. It took an ER visit and me saying HEY!!!!!! YOU HAVE TO DO SOMETHING!!!!!! Hopefully this begins a road to wellness for Rhett.
After the concussion, Rhett went through a phase of being combative. He was not a nice person to be around. The last couple of days he has been child-like.
This morning Rhett left the apartment to go wait for the bus. A full 5 minutes later he came back, frantically banging on the door. He was in a panic. He could not find his way out of the building 😦 I quick got dressed and went out. He was ineffectively jabbing his white cane at walls and furniture….totally off course. His panic had risen even more. I got him to the front entrance.
Well…I was panicked, too. I have never seen him so distraught. I pulled clothes over me and went out to the foyer without shoes or a walker. I was running on adrenaline. Once he was out the door, I was so weak I was scared spitless. I made it back to my favorite chair and collapsed.
I then started Googling everything I could find about hydrocephalus. It’s not good! Even if it is strictly from old injuries and not new ones, it’s a bad thing.
The neurosurgeon we saw last week wanted me to take videos of Rhett. Hah! He must think I am Superwoman! When Rhett tremors or walks funny or acts strange, the cellphone is not at the ready to record it…and I definitely don’t think fast enough. I am usually too busy staring and freaking out.
Now that I read about hydrocephalus this morning, I am freaking out even more. Much of what I said to the doc is listed…and other weird things I have observed are listed.
This whole thing is scary and frustrating….and that’s on top of all the scary and frustrating things happening to me!
The visiting nurse guy did intake paperwork on Rhett here, Tuesday night. As far as I am concerned, they can’t come back soon enough. Sigh…..