Friday, August 31, 2018

Two Steps Forward, One Step Back

Location: New Rockdale RV Park; Mansfield, Louisiana

This will be an update on Brandon so as to keep a record of his adventures after transplant. First, his kidney is doing great. It's GFR, which in simple terms is a rating of how well the kidney is performing, has topped out at over 100. The day of his transplant, it was an 8. It almost can't get any better. Amazing, in one day he went from being in kidney failure and surviving on daily dialysis to having absolutely no sign of kidney distress at all. The pancreas is still working great also and Brandon has not needed any insulin shots since the transplant which was almost a month ago. 

Of course to balance out the good news, there always seems to be some bad news. The bad news for Brandon was he had to go back in the hospital for a week due to "C-Diff" which is a bad infection in the intestines. It is highly contagious to people on antibiotics. It seems the antibiotics kills off the good antibodies at the same time it is killing the bad ones. Without the good antibodies, bad stuff like C-Diff can find an opening at do its dirty work. It is a serious infection for everyone, but especially for transplant patients because they are taking anti-rejection medication to prevent their body from attacking the new organs. 

We had not heard of C-diff before his diagnosis but were quickly educated afterwards. I won't go into it here but for all of my RV friends and readers, never forget to wear disposable gloves when emptying your waste tanks. Clorox is the most reliable thing to kill the spores which can live on most any surface, such as gloves, hoses, etc for days or even weeks. A spray bottle with diluted Clorox and Clorox wipes will forever be in my storage compartment.

Brandon is home again and needs to build his strength back up. He is weak and doesn't have much of an appetite. Some transplant recipients claim they take on some of the eating likes and dislikes from their donor. We will see how it goes as he begins eating again. Hopefully, the C-diff will be the only major set-back and he can continue to improve daily.

As always, our thoughts and prayers go out the donor who help make all of the good things happen in Brandon's life. I hope you know that he is taking care of your kidney and pancreas and is always thankful for your action to become an organ donor. Hopefully, he will be able to learn more about you in the future. I hope the family of the donor is comforted in knowing what their family member did for Brandon, a total stranger. May God bless them and show them mercy in their time of grief.  

I have a hard time making a post without a picture so I've chosen one of my favorites from about 4 years ago.
A "thinking bench" looking out over Lake Michigan
If all goes well, I'll be back on the road in a month or two. 

Ya'll take care of each other. I'll Cya down the road.

Sunday, August 12, 2018

Goodbye Diabetes and Dialysis

Location: New Rockdale RV Park; Mansfield, Louisiana

Well, what a difference a week makes in a persons life. Brandon received a kidney and pancreas transplant as well as getting his gallbladder removed 10 days ago on August 2, 2018. That month and day is significant because it was on that day, two years ago, that his cousin passed away. 

August is also the month in which my mother, her two sisters and their mother (my grandmother), all passed away. To me, August has always had a bad vib to it. I'm hoping that Brandon's transplant has reversed that feeling. It may also have focused all of those that have passed, to whisper in God's ear about Brandon needing a little help. After only 5 days in the hospital, Brandon was released to come home. He said the most painful part of the experience was the uncomfortable hospital bed. It made his back, ribs and shoulder blades sore.   

The pancreas is the organ Brandon was most excited to receive. He has been a Type 1 diabetic (insulin dependent) since he was 9 years old. That is 24 years. During that time he has given himself at least two shots a day and pricked his fingers about four times a day. That has been about 20,000 shots and 50,000 finger pricks. Pretty tough uh? 

Brandon was the only kid in his school with diabetes. Not only did his mother and I have to learn the in's and out's of diabetes, his teachers, school staff and classmates had to learn as well. He helped educate all of them simply by being diabetic. It got to be second nature and no big deal when Brandon would prick his finger for a blood sugar check during class. If needed, he would also draw up insulin and give himself a shot. At first, some of the school staff thought he should be banished to the bathroom to do finger pricks and insulin shots. They were educated pretty quickly as to the difference in sanitary conditions between the classroom and the bathrooms. Big credit must be given to his classroom teachers who stepped up and used it as an educational experience for his classmates. Diabetes didn't stop Brandon from playing sports. He played football and baseball all the way through High School. It was not unusual to see him pitch an inning of baseball then go into the dugout to check his blood, give himself a shot and again run out to the mound to pitch another inning. It became second nature to his teammates and the opposing teams as well. Nothing seemed to stop him, definitely not diabetes. 

One thing that was hard for him to take was being the only kid around the area with diabetes. There wasn't anyone his own age that he could relate to about it. That all changed a couple of years after he was diagnosed. A member of the local Lion's Club approached us to see if Brandon wanted to go to their summer camp. Wow, summer camp. We weren't sure about that at first. Yes, Brandon was checking his blood sugars, watching what he ate and giving himself insulin shots, but his mother or I were always near by in case he needed help. At camp, he would be away from us for a whole week. We then found out how special the Louisiana Lion Camp really was to children. You see, for two weeks every summer, the Lions put on a camp for diabetic children from around the state. All ages, come one, come all. Not only are the campers diabetic but also the counselors. Diabetics everywhere. The normal camping events, such as canoeing, archery, games, etc were all there for the campers to enjoy, but the main thing was the interaction of the kids to one another. Like Brandon, some were meeting other children with diabetes for the first time. And as with most things, the camp included educational events. Doctors, nurses, dietitians, social workers from around the state volunteered their time to stay at the camp with the kids. They were all specialists in the field of diabetes. Classes were held to teach the kids about diabetes and how to control it.  Brandon attended the camp for several years until he became too old to be included. He thought about becoming a councilor at the camp but other things got in the way and it never happened.  They not only have a couple of weeks for diabetics, but also weeks set aside for kids of other ailments. Their camp goes on for a couple of months each summer with a new batch of kids coming in each week. The Lion's have affected the lives of many kids in the state. Oh, did I happen to mention, it is all free of charge. The Louisiana Lions Club foots the entire bill. Pretty good uh? Why don't we hear of good things like that more often.

Since the day Brandon became diabetic, his kidneys began their journey to shutting down. It was always just a matter of time before we would be faced with dialysis and hopefully a transplant. His kidneys fought and fought to keep up but after 24 years, they finally needed some help. That help was in the form of At-home Peritoneal Dialysis which Brandon began in January of this year. Every night, he would hook himself up to a machine that would clean the toxins from his body. This was to be his life, tied to a machine every night. If he decided to quit then within a couple of weeks he would die an excruciatingly painful death. Remarkably, after only five weeks on the Active transplant list, he was chosen for a transplant. 

The donated kidney began working immediately after it was connected. Three days after the transplant, Brandon's nephrologist (kidney doctor) said his GFR was in the upper 60's and will continue to rise. In simple terms, the GFR is the percentage in which the kidney is working. To be eligible for transplant, your GFR has to be below 20. Brandon's was in single digits which was the reason why he started dialysis. The doctor expects it to top out in the 80's or higher. Odds are his GFR is better than mine. He now has three kidneys since they don't remove your old ones when they install the new one. They are too risky to remove since it just introduces the possibility of infection or other problems. The new one is also in the front and not in the back where the other two are located. The pancreas started working immediately also. Within hours it was controlling his blood sugars and producing insulin. Brandon has not had to give himself an insulin shot since the surgery and his blood sugars are in the normal range. It is amazing and really hard to believe. The doctors did a great job and their hands were surely guided by God. I'm sure God also had a hand in the choices made by the donor and their family. I pray they are being consoled about their great loss. We don't know anything about the donor although we have been told only young pancreas's are used in transplants. We don't know the age range of "young". That also means the kidney is from a young donor. This is very good news since the younger the organ, the longer it last. A lady received a kidney on the same day as Brandon. We don't know if it is the paired kidney from the one Brandon received. We met her at the first doctors visit and she said, she was told the organs came from Alabama. Hopefully, we will learn more about the donor in the future. 

Brandon is taking three anti-rejection pills and four anti-biotics. They will reduce his immune system to a point where his body will not try to fight the new organs. The anti-biotics will eventually be tapered off but the anti-rejection pills will be taken for the rest of his life. When the doctor asked about having to take the pills forever, Brandon reminded them that without the transplant, he would be on insulin and dialysis for the rest of this life. Pills are much better. He still has a long way to go and we are having blood drawn and doctor's appointments twice a week for 6 weeks, then once a week for another 6 weeks, then once every other week for 6 weeks, etc. But, the lab and doctor are in the big city of Shreveport, about 30 minutes away, which is a good excuse for lunch at different restaurants.
It's a new day in many ways.
Ya'll take care of each other. I'll Cya down the road.  

Thursday, August 2, 2018

Transplant Happened Today

Location: New Rockdale RV Park; Mansfield, Louisiana

This is going to be a super quick post. 

Brandon had the honor of receiving a kidney and pancreas from a deceased donor today. The doctor said the organs looked great and the kidney immediately started functioning with the pancreas working also. It is still a long road ahead to get things lined out but the main hurdle is over. Everyone at the transplant center was very surprised that Brandon was only on the "active" list for 5 weeks before getting the transplant. Many said that was "unheard of" an "astounding". It is one in a series of miracles that have happened over the last year or two. 

It's been a long day and I need to get to bed. I'll post more in the near future but wanted to let everyone know that has been following Brandon, that it looks like the transplant was a remarkable success. 

My thoughts and prayers go out to the donor and their family since they have suffered a great loss at the same time we have benefited from that loss. Organ transplants are the epitome of give and take in this life. 

Ya'll take care of each other. I'll Cya down the road.

Wednesday, August 1, 2018

Trip Wrap-up and Update

Location: New Rockdale RV Park; Mansfield, Louisiana

Trip route (6 weeks)

Well, I've been back for one week so I guess it's time for a wrap-up and update. The hard facts of the trip is it lasted 6 weeks and I traveled through 11 states and stayed in 11 campgrounds. I towed Liberty 3,190 miles and explored in Freedom for an additional 1,200 miles. The campground breakdown is Corp of Engineers (2), Indian Casinos (4), County/City (2), Privately owned (3). The average price for the campgrounds was $24.17 with the most expensive one being $34.00 while the cheapest was $11.00. The highest price for gasoline was $3.09 and the cheapest $2.55. I don't know what the average price was but would figure about $2.75. 

I had my first blow-out on Liberty during this trip. All in all, I was very lucky in that it didn't do any serious damage, I wasn't stranded very long and I was able to buy a set of tires from a nice Goodyear dealer located right on my route. The whole incident from blowout to pulling out of the Goodyear dealer was 3 to 4 hours. The sad thing is that while I was on the shoulder of the Indian Nation Turnpike, no one stopped to ask if I needed help. Oh well, I didn't need any help and maybe they knew that, so we won't hold it against them. 

The World War I museum in Kansas City is worth a stop. The city campground near KC, while the most expensive on this trip, was conveniently located. Iowa is just Iowa, travelers will understand that. Lake Superior is always nice, but Lake Huron is still my favorite. Before cutting my trip short, I planned to cross Michigan to camp near the shore of Lake Michigan in hopes of getting a nice sunset picture. It has been a while since I've had a decent sunset or sunrise. I need to work on that.    

I've added Duluth, MN / Superior, WI to my list of "good vib" places. Those are places where I get an immediate sense of peace and contentment when I arrive in the place and it lasts until I leave. I've traveled coast to coast and border to border and have only discovered a handful of such places. They are rare and always a nice surprise. Some places I expected to be a "good vib" places, but weren't. An example would be Sedona, AZ. I had heard it described as such by many people. But, I guess I was the odd man out because it just didn't do it for me. Maybe I didn't get on the right vortex. "Good vib" places are different for everyone since the "vibs" inside us must jive with the "vibs" of the place. We have to be in sync. This isn't some new wave or old hippie thing. It is real and I'm sure others who travel a lot have run into the same thing. If not, then I'll deny ever saying this so the guys in the white coats don't come after me. 

The number of RV'ers on the road has dramatically increased over the last couple of years. Use to be the campgrounds were mostly empty during the week and only filled up to about 80% during the weekends. This applied to most types of campgrounds. That has changed now. A lot of the campgrounds have no vacancies on the weekends, especially the state/federal campgrounds. It seems locals have started reserving weekend campsites in the state/federal campgrounds months in advance. I found the Indian Casino campgrounds and county campgrounds to have more vacancies than any other type. They were nice campgrounds too especially the casinos since they gave me free money in hopes of getting me to gamble with my own after losing theirs. I fooled them,,,, 

I shortened the time on my trip by a few weeks after Brandon got a call to be on "stand-by" for his Kidney/Pancreas transplant. Although that one didn't work out for Brandon he has been placed on "stand-by" two other times since then with the latest being just an hour ago. They will let him know around 6:00 in the morning whether or not he needs to go to the hospital. They didn't give any other details about the donor, but with a kidney/pancreas transplant, the donor has to be deceased. If Brandon is given the honor of receiving these organs, then we will be told more about the donor. And so the waiting game continues. 

For those of ya'll still out there on the road, be safe and always be thankful for the freedom of the road.

Ya'll take care of each other. I'll Cya down the road.