Freedom and Liberty

Freedom and Liberty
I travel in Freedom but sleep in the security of Liberty (not only on the road, but in this amazing country of ours)

Monday, September 18, 2017

An Update

Location: New Rockdale RV Park; Mansfield, Louisiana

Well, well, it's been a month since I've posted to the blog.
This post will serve as an update of Brandon's condition. It will also used for future reference and documentation for Brandon to use in the years to come as a history of what he has gone through.

I'm camped at my usual campground in my hometown. There are a few choices of campgrounds but I like this one the best, but only if I can get my usual campsite. It is a level site on the top of the hill with tall pines to my western side which puts Liberty in the shade beginning around 3:00 in the afternoon. Those trees will also block a lot of the storms that enter this area from the west. Before I left last time, I asked the manager to save the site for me and that I would be returning in 4 to 6 weeks. He said he would do that and it wouldn't be a problem. When I returned, someone was in my spot. The manager was very apologetic and said it was a mistake. He started to tell me he would reduce my rent for the first month but I stopped him in mid-sentence and said "everything happens for a reason" and I would just pick another site until my usual site opened up. He said OK and I thought that ended the conversation. However, when I was paying the rent for the month, he ran my credit card through his cell phone app and reduced the amount by $25.00. I didn't catch it until the process was completed and he started laughing and telling me what he had done. He turned my words back at me and said "everything happens for a reason" and that I couldn't complain about what he had done. I thanked him and was reminded of another reason why I like the campground. My regular site opened up about 10 days ago and I'm camped in it now. 

Brandon is still waiting to be put on the kidney/pancreas transplant list. If all goes well, that process should begin around the first week of December. It may have been sooner but he had to have been quit smoking for 3 to 6 months before being put on the list. The reason being is they don't want to transplant an organ into someone unless they show they will take care of it. Brandon's smoking is a strange story. Brandon was smoking about a pack a day before his first stroke. Not a smart thing to do, but never the less he was doing it. After his first stroke, he didn't have any craving for a cigarette at all. It was as if the stroke had flipped the switch in his brain that controlled the craving. He never picked up another cigarette until after his second stroke. The second stroke apparently flipped that craving switch back to the on position. But when he found out he could get a pancreas, which would cure his diabetes, with the kidney transplant, that gave him the incentive to quit smoking even while having to fight the craving. He quit right before I left on my last trip. When I returned after being away a month, the changes were very noticeable to me. He was walking better and with more confidence. He looked healthier with better color in his face. Overall he looked stronger. These things were easy for me to see since I had been away for a month. He said he could feel the changes inside him. His words were that the cigarettes had been taking away something inside him and that he got some of them back after quitting. He is still hanging in there and says the cravings are mostly gone. Once he finishes proving to the transplant people that he is cigarette free, they will begin the final process of placing him on the official waiting list. 

Brandon's GFR (kidney function) is still hanging in at 14. Less than 20 is considered kidney failure. So far, he has not exhibited any symptoms of kidney failure, but we know they will be coming soon. With kidney failure, you have two ways to stay alive. One is dialysis and the other is a transplant. We are working towards the transplant but must also be ready for the dialysis in case the kidneys fail before an organ becomes available. In Brandon's case he will have to wait for a deceased donor since he will be getting a pancreas transplant at the same time he gets the kidney transplant. They won't take a pancreas from a living donor because that will make the living donor an insulin dependent diabetic. 

There are basically three means of dialysis. They vary by the location on the body and the type of treatment. One is to draw blood out of the body, clean it, add any nutrients and then put it back in the body. This is the type of treatment most people associate with dialysis. To do this type, you have to have a place on your body to connect to your blood system. This connection is called a fistula. It is minor surgery where the surgeon connects one of your arteries to one of your veins, usually in your arm. Remember, arteries carry blood from the heart to the rest of the body and veins carry the blood back to the heart. Creating the fistula is like building a crossover on a four lane highway. When a tube is connected to the fistula, you can drain blood out of the body, clean it and pump it back in. This type of dialysis is usually done at a dialysis center 3 days a week with each treatment lasting 4 to 5 hours. We met with the surgeon and his team who does the fistulas. Our first meeting was to find the size and location of the arteries and veins in Brandon's arms. We then met with the Doctor to discuss things. That discussion did not go well. Remember, Brandon has very, very little use of his right arm and hand. He does everything with his left arm. We asked if the fistula could be placed in his right arm and the doctor said No, the veins and arteries were too small in size. We asked what kind of restrictions would be placed on Brandon's left arm while the fistula healed. I specifically mentioned Brandon use of his cane for walking long distances. The doctor said he could not use his cane for several weeks. When we heard that, the three of us (Brandon, his mom and me) knew that would be a problem. We explained that he couldn't use his right arm due to the stroke and if he couldn't use his left arm even to use a cane, that meant he would essentially be a paraplegic. We asked how long for the fistula to heal and he said sometimes it would be a 2 to 3 months for it to "mature" to the point of being usable. Brandon decided against the fistula in his one and only good arm due to the possibility, however slight, that he could lose the use of it and become paraplegic. His mother and I agree 100%. It just wouldn't be worth the risk. 

The second type of dialysis is through the stomach. A catheter is placed in your stomach lining. It takes about 2 to 3 weeks for the catheter to heal before it becomes usable. After it heals, a certain amount of special fluid is allowed to fill an area around your stomach. The fluid stays in there for an hour or two during which time you can go on about your business. After the "dwell time", you reconnect to the catheter and drain the fluid which has attracted many of the bodily waste products that is usually filtered by the kidneys. This process doesn't involve blood at all. You do this about 4 times a day in your home, every day or every other day. You can also do this method while you sleep. You will be connected to a machine that will put in and take out the fluids while you sleep. This type of dialysis is called Perinatal Dialysis (PD).

The third type of dialysis is usually reserved for emergency or temporary and is located in the side of your neck. 

We will meet with the doctors soon to put a plan together. Brandon must choose which type of dialysis set-up he prefers. He's been through a lot, but is still hanging in there both emotionally, spiritually and physically. As he has said before,,,,, it is just another thing. 

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

11 comments:

  1. I wish you nice folks the best. You are traveling a rough road.

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  2. Our best to Brandon. What a challenge he has been put through. Good luck with the upcoming decisions.

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    1. Thanks Barbara,,,,I hope ya'll are enjoying the northeast

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  3. Thank you for the update..we've been wondering how you all are doing. Tough decisions for you all. Keep us updated, you all are in our thoughts and prayers.

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  4. Thanks K&S,,,,happy bologna day. :)

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  5. Thanks for the update on Brandon, Darrell. Personally, I'd go for the second option---PD. I could be sleeping while having the procedure and keeping my days free. YMMV.

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    1. Thanks Cat. He will probably go with that option. By the way, what does YMMV mean???

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  6. YMMV...Your Mileage May Vary... or you might want another option.

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