As I often do, I went back to last month’s page and added/tweaked some text and added a photo.
I think it was Lisa who reminded me that I did not have any medical insurance from 2002 until 2012. I sure lucked out with the timing.
Glen and Lisa headed east last month and rented this 42’ boat from Mid Lakes Navigation. The lady in the photo is Lisa. They spent five days cruising the Erie Canal. The boat had a 50 hp. diesel engine so top speed was 5.5 knots.
Glen sent me some text (I wish I could write as well):
Our boat was a steel hulled craft that was designed and built by Mid Lakes in their own shop. The design was modeled after English canal touring boats that are sometimes called long boats. It was pretty amazing to look around their boat building shop. It was quite an active operation. The company is in the process resorting 3 older boats that they have acquired. The latest one is the Harriet H. Wiles. Mid Lakes had actually built this boat back in the 80's and sold it to another tour company. Now they had reacquired it and had just finish a total rebuild. The craftsmanship on this vessel was amazing.
Before they handed us the keys to our boat a man from the shop took us on a shake down cruise down the canal to the first lock. Rather then just telling me what to do he was very good about just letting me get a "feel" for how the boat handled. Since we didn't crash through the lock gates or run aground our guide said we were good to go. As we took him back to the shop he told us how much he loved his job of building these boats. And it was obvious that there was a lot of pride as he showed us all the details on the boat.
The company we rented from offers 3, 5 and 7 day trips.
The Erie Canal was originally made in 1817. The early canal used very small boats pulled by mules. Around the turn of the century people stopped using the canal. Trains and roads were faster. The state of NY embarked on a major rebuild of the canal so that large tugboats pulling barges could use it. The canal was greatly widened at this time around 1914.
By the 1950's commercial traffic was again down to almost nothing. The canal was almost abandoned but at this time recreational traffic greatly increased. Lots of boaters began travel between the Great Lakes and the east coast via the canal. Today the widened canal is over 100 years old and so it's very over grown. Large trees line the waterway and so it's more like traveling down a small river then a man made canal.
With all the recreational traffic on the canal now hundreds of nice restaurants have sprung up along the way. Once old industrial areas are now quite up scale.
Lisa wanted me to be sure and tell you that every town had excellent ice cream stores.
It's a good thing these boat are steel hulled. They are totally crash proof and that's a good thing because it was pretty amazing the stupid things I saw people doing like crashing into sea walls head on. I almost have to look the other way when I would see people coming into the dock driving these behemoths.
Another boat; it all sounds SO cool.
Remember this camping spot from the August page? This is where it all started. If you are driving down this spur up on the Kaibab, turn around and go to another area. Do not keep driving down the spur if you are pulling a trailer because you will probably get stuck as you approach the bottom.
My discharge diagnosis from Kane County Hospital read: “Cellulitis; Dehydration; Shingles; Strep throat (strep A [gargle with salt water!]). Associated symptoms: tingling and he has had a cold for several days (that’s not true). Patient’s pain was difficult to control but fell asleep around 4 am. Pt continued to have change and worsening clinical status with blood pressure beginning to drop and mental status decline.” Still no diagnosis of necrotizing fasciitis! They sure seem to be liable for all the muscle that had to be cut out due to their misdiagnosis. Guano
Discharge Diagnosis from first stay @ Promise: “Hypernatremia; Hypertension; Severe Malnutrition; Severe debility.” Definitely not in my best heath.
Theresa gave me another chuckle. She said I’m doing more moving than when in the Nashsix moves since July 31.
My limit for staying in one hospital, from Medicare, was up so they moved me up to a hospital in Bountiful for six days (where they wouldn’t let me out of my room!). Then back to IHC on Sept. 20 for my skin graft. Stayed there four days, then sent back to Promise. As Theresa said, it is a good thing I’m traveling light. After Promise, I was moved to a skilled nursing facility, which should be my last place of residence before getting back to Meadow and Mesa.
A therapist brought me a few pages he downloaded from WebMD; he wanted to learn a bit about the bacteria. Some of this was new to me:
“About 1 out of 4 people who get this infection die from it. Many people who get necrotizing fasciitis are in good health before they get the infection." I would imagine the 1 in 4 did not get to a hospital in time, were in poor health, or the doctors couldn’t make an accurate diagnosis. This is just my take on it; could be wrong.
“Necrotizing fasciitis is caused by several kinds of bacteria. Some of these bacteria also cause infections such as strep throat and impetigo. Usually the infections caused by these bacteria are mild. But in rare cases they can cause a more dangerous infection.
“How is it diagnosed? The doctor will diagnose your infection based on how suddenly your symptoms started and how quickly the infection is spreading. The infected tissue may be tested for bacteria. You also may need X-rays, a CT scan, or an MRI to look for injury to your organs or to find out how much the infection has spread.” Sure wish the doctors down in Kane County Hospital had know this.
“How is it treated? Early treatment of necrotizing fasciitis is critical. The sooner treatment begins, the more likely you will recover from the infections and avoid serious complications, such as limb amputation or death. You may be treated in the intensive care unit at the hospital.” Sure wouldn’t want to be anywhere else.
“To help prevent any kind of infection, wash your hands often. And always keep cuts, scrapes, burns, sores, and bites clean.” Really, do this.
“You can also get it in a muscle strain or bruise, even if there is no break in the skin.” This, I do not understand.
A split-thickness skin graft is used to cover large, shallow wounds. Only the epidermis and a little of the underlying dermis is cut off with a dermatome. Check out the link below to a youtube.
Full-thickness skin grafts are used for more severe wounds. A patch of skin with underlying muscle and blood supply is transplanted to the area to be grafted. The graft is removed with a scalpel rather than a dermatome. After the surgeon has cut around the edges of the pattern used to determine the size of the graft, she lifts the skin with a special hook and trims off any fatty tissue. The graft is then placed on the wound and secured in place with absorbable sutures. Don’t think I want one of these.
The skin graft surgery took about 2 ½ hours. When I woke up in the recovery room, I felt fine and sat up in bed. I was immediately reprimanded. I kept sitting up from time to time and I guess the nurse just gave up. No pain from the skin graft, and, at that time, none from the harvest site. I wanted to get an idea of what I just went through so the next day I accessed youtube. I only looked at one video and thought they did a stellar job covering the process in a 4 ½ minute video.
It’s called, ‘Live Surgery Split Thickness Skin Graft.m4v’
definitely, check it out:
Live Surgery Split Thickness Skin Graft
What did you think of the electric cheese slicerthe dermatome? With me however, the surgeon spent more time using it. He took a 10” strip along my right thigh. As you saw, each strip of skin is then run through a hand crank meshing device, to enable the skin to expand. Once again, it gets worse, but of course. As the surgery went along, the doctor went back two more times to take parallel strips.
This photo was taken 6 days after the graft.
This is the last photo I have of the skin graft; 20 days after surgery
My harvest site ended up being 7” x 10”. I only have two photos of the harvest site. This was taken 36 days after the dermatome; almost healed.
The pain from that for the first week was intense. The week of the horrific nightmares was the worst week up to this point.
They cover the site with this thin mesh and staple it down. For the first 3 or 4 days, the wound seeps. And yes, my hospital gown and top bed sheet would get stuck to it and I had to pull it away. It’s truly hard to believe the amount of fun I am having. The first morning they had to change my bedding and gown due to all the blood. Come ONenough already! As the wound heals, the mesh around the edge loosens and the staples are pulled out. Each day a nurse trims lose edges. Unfortunately, a free edge did catch on something from time to time. In the previous photo, you can see how the mesh got trimmed down to this last piece.
It was good to get back to Promise. I like this place; they take good care of me here. A number of nurses and CNAs have voiced how far I’ve come since August 9. They said I was so loopy from the meds, in a lot of pain, and could barely move. I remember all the times I messed the bed and the bed baths. Oh, for joy. It’s good to be making progress.
The skin graft is smeared with an antiseptic goop (maybe bacitracin), areas of concern are then covered with something like a thin plastic patch. It’s all then wrapped and held in place with netting. Notice the ladies of wound care tied it up in cute little yellow bows instead of tape. And of course they did not tell me this. I first noticed it when a nurse pointed this out. The wound care ladies were long gone.
This is 10 days after surgery. Even now, over a month later, one can still see the mesh pattern in the skin. The skin feels like leather. Notice all the staples? When I looked at the staples, I thought of future pain. I planned to ask for a pain med prior to their removal. Can you guess it did not go according to plan?
One morning, a few days later, wound care was changing the dressing and noted it had been 14 days since the surgery. Staples are supposed to be removed after 10 days. I’m thinkin’, uh oh. Yep, they decided to pull them all out then. What!? Wait, wait, pain meds, pain meds, I want pain meds! The response was, Oh, it won’t be too bad. Uh huh. On the whole it was not all that bad. Then they got to one in the middle of my chest that was pretty much buried in the new skin. The staple did not come out with the first yank; it took two. Ouch!
From the video you can get an idea of how that large negative pressure dressing over my open wound was done. Cutting the black vacuum sponge to size, covering it with draping (plastic sheet), leaving a hole for the vacuum tube, and attaching the vacuum tube. What did you think when they turned on the vacuum pump? Mine didn’t sink below the skin like the wound in the video, but one sure knows when the vacuum is turned on. On my wound dressing, a diluted bleach solution was dripped into one side of the dressing and through a perforated tube running along to the other side where the vacuum tube was attached. For skin grafts, there is no irrigation. The negative pressure of the vacuum keeps the skin graft tight down against the tissue, pretty much assuring a good bond. It was on for five days and then switched to a more conventional dressing.
My plastic surgeon talked with the surgeons who did the first three surgeries back in the first week of August. They were surprised I was still alive, let alone still had my right arm. Good grief.
A few days in the first week of October were tough. What I’ve been going through the last couple months all seemed to hit me hard. Luckily I was able to pull myself out of the dumps. I was coping well (relatively) up to that week. I so much want to get off all these meds, and hopefully, start thinking clearly again. Then there’s getting off the nightly feed bag and getting back to my kind of meals.
Then I had a week or so when things all seemed to blend together. I was confused and woozy, but thankfully it too passed. And there had been no change in my meds that might have set if off. Hmm.
I was really hoping to get accepted into HealthSouth Rehabilitation Hospital for acute in-patient rehab on my R shoulder and arm. But I could do stairs, squat, raise my left arm, do well on balance tests, and many other things. They would not accept me merely for my R shoulder and arm. Then my case manager told me about a skilled nursing facility that could provide more therapy on my arm and shoulder. Sounded good and that is where I was sent.
When I got there, the director of therapy tested me for balance. I tested okay, and he then informed me that they will not provide any physical therapy for me. WHAT!? What about my calves, ankles, quads, inner thigh, hams, and glutes? PT takes care of the body below the waist. This is SO wrong. I groused to the resident advocate and the overall director. Some changes were made and my OT here could not be better. Both my OTs (the best) are working on range of motion for my R arm and shoulder. When I told my weekend OT, my goals, she went out and purchased a 5-gallon bucket. How thoughtful is that? Both OTs are working towards me being able to lift the nine 5-gallon buckets of water (40 lbs.) up onto the Ram’s tailgate. We probably have 40% of the goal nailed. Not bad.
They both come up with ideas. The OT here, came to get me one morning and I was still brushing my teeth. He said, What are you doing? I knew not to respond. He said, right hand. I kept silent, thinking I can’t reach my teeth using my R hand. He continued to just stare at me. I’m learning. That was his signal to assist with my L hand.
My OT sessions have been going well but in the first two weeks, NO OT session was provided on TWO of the days. I’m here for therapy!
A few therapists showed me movements I can do on my own this winter. That should help quite a bit with my continued recovery.
The second time I went back to IHC, I wasn’t allowed to have thin beverages. Have you ever been served a glass of water with a spoon in it? I had to stir up the thickener. For water!
The medical flight from Kanab, UT to SLC had a base rate of $17,250 and a mileage charge of $63,210 for a total bill of $80,460! Whoa. As I understand it, Medicare covers transportation costs if there is no other way for the patient to move from place to place. So far Medicare has been covering all transportation charges. That’s impressive.
When I got to my present (and, hopefully, last) place, the speech therapist (4th so far) tested my swallowing, once again, and found my swallowing and speaking muscles, to be too weak. So I have 7 exercises to do each day. Prior to this, I never heard of doing exercises to strengthen one’s tongue. For two of the exercises, I close the door; the sounds get pretty loud. Good grief.
Now that I’m approved to drink thin beverages, I was handed a paper on allowable beverages, one was, ‘alcoholic beverages.’ I asked about this and it was confirmed. I remember the first beer that a friend brought. It tasted SO good. First one since July. One is more than enough for me; back in the Nash, a 12 oz. bottle lasts me 3 or 4 nights. If a friend left me with a second beer, I have to hand it in at the nurse’s station so it can be locked up in the refrigerator. When I want it, I have to go and ask a nurse for it, hoping the nurse is not off on a break or counting out meds. Understandable, but still strange.
Pinball sent me an ad she came across in the “un-classified” section of a local paper. “RV/Trailer Parking Space on 40 acres fenced with cattle guard. 45 foot shade canopy with side patio awnings. $350 per month, includes water, electricity & sewer.”
This might be something to keep my eyes out for. Or as Theresa and Lynn suggested, I could post my own note. Theresa sent me this note.
At this point I don’t have any idea what I will be doing. Hopefully, it will be back off-the-grid.
I don’t know what kind of mindset I’ll be developing. The necrotizing fasciitis bacteria is all around so it makes no sense to stop what I’ve been doing for the last ten years. I might try, however, to stay within an hour of a hospital. And if it happens again, I can help the doctors with the diagnosis.
I’ve not been the best person, or close to one, for a good deal of my life. After the bone marrow transplant, I felt I was developing into a better person. My chance of surviving the BMT was only 29%. If I started to regress, I had a friend who merely said, ‘That’s not why you are here’. It was exactly what I needed; worked every time. After I get past this little setback, I have a feeling I’ll work towards developing into an even better person. Granted, it will be nowhere near perfect, but I know some areas where I can improve.
I know I could go through this again, but I feel I have made enough atonement for past mistakes. If I have a third major medical problem, chances are good I’d throw in the towel. So maybe I should start checking out national forests in states I’m not all that familiar with. Or get serious about looking for some acreage either north or south to spend half the year, or something like Lynn’s idea. If I had a lady, I’d see if she would be up for traveling through the western Canadian provinces. As you can see, I have not a clue what to do. So I wonder what next summer will bring. I think having a home-base for a few months might feel good. I could focus on getting my strength back and practice being a better person. We’ll see.
This is an old one so you might of heard it before.
The Old Farmer: A Department of Highways employee stopped at a farm and talked with the old farmer. He told the farmer, 'I need to inspect your farm for a possible new road.' The old farmer said, 'OK, but don't go in that field.' The Highways employee said, 'I have the authority of the State of Minnesota to go where I want. See this card? I am allowed to go wherever I wish on farm land.' So the old farmer went about his chores. Later, he heard loud screams and saw the Department of Highways employee running for the fence and close behind was the farmer's prize bull. The bull was madder than a nest full of hornets and the bull was gaining on the employee at every step. The old farmer called out, 'Show him your card, smartass!!'
RVwest article ‘Following a Free Spirit’
RVwest article ‘The Spaces Between the Places’
Good to hear you're on the mend. What a crazy medical system we have? No PT is just nuts.
Hope to see new posts from the outside soon.
Hope you're getting better these days.
Give us a short update when you can. We out here wondering how you're doing.
Ken, you got me to put something up for the November page, thanks.
Emily and Carol, yes, quite an experience and I’m working on getting as much back as I can.
Karen, good for you. Why do so few put enough effort into their recovery? Then they grouse about how much they lost.
Unknown, thanks for your words. I sure hope I start to come up with interesting things to write about as I get stronger. I need to feel I’ll be able to get back off-the-grid at some point.
I wonder if they sell dermatomes in the kitchen shoppe on Rodeo Rd in L.A.?