J.C. "DaWizard" fight against an unknown illness
How do you fight back when you don’t know what you’re fighting against? That’s what we’ve been asking ourselves and the doctors since this began.
I’m not a clever writer. I don’t know how to “grab a reader’s attention”. So, I’m just going to do a recap of what’s been going on with my dad (aka: J.C., or “DaWizard”), and hope that he can get some help to cover what the insurance isn’t covering.
In September 2021, J.C. started complaining of constipation issues. He took regular OTC medications which provided very little to no relief. In October of 2021, he had me take him to the ER because he could no longer urinate. The examination included X-rays which showed that he had a rather large mass of fecal matter in his colon. This mass was putting pressure on his prostate and urethra, which was not allowing urine to pass. The doctors gave him laxatives and had to manually assist with the removal of the waste. They got out as much as they could, inserted a catheter and sent him home to wait for the laxatives to fully kick in and help remove the rest. Once the pressure was off his prostate and urethra, I took him to the urologist to have the catheter removed. Everything was good for about 4 months. In February, we repeated the same process. This scenario would happen 9 more times with only days in between ER visits.
In Late August, while still dealing with the above issue, we couldn’t help but notice the weight loss. J.C. assured us that he hadn’t changed his eating habits or begun any exercise but after consulting with his old doctor, we were assured that there was nothing to worry about.
J.C. is retired and for extra money, he would work on vintage Fords. He has a knack for knowing how to deal with these old cars. We’ve had some pretty cool cars here as people would bring them here for him to work on. If he wasn’t working on a customer’s/friend’s car, he was tinkering with his own 1928 Model A Sedan (his daily driver!) or, at least it was until he got sick. In late March or early April, the tremors in his hands got so bad, he was no longer able to work on the cars himself. Luckily, he met an outstanding group of men that would come assist him with the cars. The doctor finally seemed to be concerned and ordered a CT scan which turned out to be unremarkable.
By August 2022, J.C. had lost about 65 lbs. and was getting weaker. He sat a lot and developed a pressure sore on his rear. I took him to the doctor and the doctor FINALLY took notice but still, no blood work was ordered! He just decided that J.C. needed wound care and that started our world of at-home nurse care to address the wounds.
With the amount of weight J.C. had already lost, we got concerned when he started having issues swallowing food and drinks. Even water was an issue as it would try to come back up through his nose. In September 2022, I took him for a Barium Swallow Test. This test resulted in a diagnosis of moderate Pharyngeal Dysphagia.
After asking around, we finally got a new doctor. This doctor seemed to take an interest in what was going on. Before leaving Dr. Mike’s office, we had an approved referral to a Neurologist! The neurologist did a bunch of strength and coordination tests in the office. My family and I were under the impression that this was Parkinson’s Disease. It was bittersweet to hear the neurologist say that “although some things seem to mimic Parkinson’s, there are some things that are just off”. So, between the two doctors, an MRI, DAT Scan and bloodwork were ordered, including blood that was sent to the Mayo Clinic. Everything except the DAT Scan has been completed and so far, all tests have come back normal/negative.
By late November 2022, J.C. has lost about 85 pounds! He’s very weak and has fallen down the back stairs. The nurses keep saying his wounds look better, but he’s in a lot of pain. Physical Therapy, Occupational Therapy, wound care, and a case manager is the norm, now.
On December 23, 2022, the wound care nurse shows up. Our family is concerned because J.C. is in a LOT of pain. There is a very strong, unpleasant odor and drainage coming from his wounds. The nurse goes into the room with J.C. and when he comes out, he says “Well, everything looks good”. That’s when I stood up and said “looks good? How can it look good? It’s draining and you can smell that it’s infected”! The nurse proceeds to stumble over his words and eventually, we get him to agree that going to the E.R. is the best solution.
I tell J.C. that I’m going to take him but he confesses that he doesn’t think he can ride in the car. So, we call 911. It takes 2 men to get him out to the stretcher and on his way.
J.C. was admitted to the hospital and later that night he had his first surgical debridement for Necrotizing Fasciitis, more commonly known as Flesh Eating Disease. December 26th would be his 2nd surgery for the same thing.
As of today, J.C. is in a convalescent hospital. He has a list of issues including Cachexia, Physical Debility, Sepsis, Fournier’s Gangrene, Ataxia, Cellulitis, Dysphagia (Pharyngeal phase), Constipation by delayed colonic transit and is now, on a feeding tube.
We’re no closer to knowing what’s causing all of this. The hospital mention sending him home. J.C. doesn’t feel ready and honestly, we don’t think he’s ready either. But J.C. was starting to gain some weight back and his wounds seemed to be healing but, as of yesterday, his weight is starting to come off again and he’s lost another 8 pounds in the last 2 weeks.
J.C. is a great man. He can be a bit “gruff” at times, but his heart is always in the right place. He came into our lives about 31 years ago and he’s been an amazing husband to my mom, a great father to my brother and me and an excellent grandfather to my daughter. He loves his Model A family and friends and just enjoys life without being mad at anyone.
At the end of all of this, we all just want to know what’s going on with his health and if there will be a light at the end of this tunnel. If all that happens out of this is that I’m able to tell you what an amazing man he’s been to all of us, well, that’s worth it to me. J.C., this is for you!
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