The AV Fistula Exercises

This first pic shows the "equipment" that is needed for the exercises I am now doing to grow and strengthen my AV Fistula. Without the exercises, the fistula would not mature and I would have no clear venous access for dialysis.






This second image is the position of the rubber band and the ball.

The exercise is simple. You occlude venous flow with the rubber band, then squeeze the ball repeatedly for three minutes.

The exercise is done a total of three times each day. I will continue this routine until my next vascular surgeon follow-up on 08 June. I may or may not have to continue the exercises after that. We'll see.

So that's all there is to the exercises. Seems simple enough, doesn't it. In reality, repeatedly squeezing a ball for three minutes is difficult. The hand grows tired quickly, and the arm hurts because of its continued healing from the surgery.

For some reason I began counting the number of squeezes in each three minute period. My first time I only got in 60. After almost top full days of exercises, I am now averaging 85. It will be interesting to see how many I am able to do at the end of two months.

If you have any questions about this, please ask.

Good Health to All!

ScottW

(*Did you see the box of Altoids in the background of the second pic? I've constantly got 'em nearby!)

21 April 2011

The last few days have been up and down.

My appetite has improved slightly. While my overall snacking is still very poor, my once a day meal has increased from .75 cups to about 1.75 cups. It ain't a huge increase...but I'll take it!

The edema in my legs has been bad. On Monday I craved water. I drank nearly an entire gallon of water on Monday alone. I openly wondered what would happen as a result. Well, Tuesday morning I began feeling a lot of itching and swelling in my ankles. By the end of the day the edema had doubled the size of my ankles making them unrecognizable. The edema extended up my legs to above both knees. As of this AM, the edema has decreased; but only by about 20%.

Along with that, I have been colder than usual. I am bundled up in a 70 degree house. Not fun.

The pain over my mid-back continues to come and go. I haven't identified any triggers that increase the pain; it just happens.

My headache is constantly severe. Tuesday I felt TMD S/S's on top of it as well, making my headache even worse. However, I used my TMD-relieving occlusive devices on Tuesday night, and when I awoke Wednesday, the TMD symptoms were gone. As of this morning, the TMD S/S's are nowhere to be found leaving only the headache associated with the PCKD.
(*Remember, I dealt with TMD headaches for 15 years before finding relief, so I know quite intimately what they feel and taste like. The normal (and constant) headache associated with the PCKD is totally unlike the TMD headaches, and should not be assumed to be the TMD induced headaches.)

As you might guess based on my recent posts, the constant exhaustion I feel has been unrelieved. The daily naps continue to range from 30 minutes to several hours in total, and I still sleep every night a minimum of six hours. I have yet to find anything that gives me more energy.

Speaking of sleep--my dreams (at least, what I can remember of them) have been a mix of things that clearly illustrate my current physical condition. An inability to control my dreams illustrates the helplessness of my current physical condition. However, I do NOT feel that way in my conscious mind. I remain strong (mentally), positive, and looking towards a healthy, productive post-transplant life. As long as I continue to consciously think this way, I'll leave it to my subconscious to sort the rest out.

The past 5 days or so I have been feeling (in general) really yucky. Besides to obvious lack of energy, I've felt as if I have a constant stomach ache; like having the flu; that I also feel over the rest of my body. I don't know how else to describe this. It's a very subjective thing.

I've got my next nephrology appointment on Monday, 25 April. I'm going to do my labs this afternoon. So, I'll update you with the latest numbers early next week.

My L arm continues to heal up nicely from the AV Fistula surgery. I'm still not using it a lot; just allowing everything to heal properly. With every passing day I do a little more with the arm; but strictly avoid overuse when the arm begins to hurt. I'll start doing exercises tomorrow that will help the fistula to grow and strengthen.

That's all I can think of today.

Good Health to All!

ScottW

**The labs I had drawn today are CBC, Renal Panel and PTH. This is the second month in a row I have not done a urinalysis or liver panel.

17 April 2011

As I do every so often, I want to remind my readers that everything I am writing about in connection with the PCKD is MY Singular Experience in dealing with this disease. Other patients of comparable age and overall health might find their experience wholly unlike what I am going through.

So please, if you are dealing with Polycystic Kidney Disease consult with your nephrologist about the S/S's (signs & symptoms) you are experiencing. Only your physician can best determine the appropriate course and treatment for you.

Also, I encourage you to educate yourselves about the disease through your physician, and through websites such as those listed on the top Left of this blog. The more you understand what you are dealing with, the better.

Thank you all for your continued readership and support. If you have any questions, please ask. If I cannot answer them, I will try to guide you to the best information available.

Good Health to All!

ScottW

16 April 2011

I'm not going to go into any depth on todays blog simply because I'm tired, feel lousy, and my head has been killing me all day.

The S/S's continue unabated in every area. Though the peripheral edema has lessened, it remains starkly visible. This past week I have had lots of pain when walking anywhere with my shoes on. I'm trying to solve this with wearing a pair of Tiva sandals which I just got today. The problem here is that unless the weather is hot, my feet will feel frozen. C'est La Vie.

My L arm has been really sore distal to the surgery site of the AV Fistula. When I say sore, I actually mean painful; like I've got some kind of injury in the arm, between the incision and the wrist. It may be from sleeping on it wrong; or from overuse as I continue recovery from the surgery.

My appetite has been horrible...again. In the last four days I've eaten just two "meals." The rest of what I've eaten has only been lite snacks. This is due to either nausea, or simply not being hungry. I'd guess that my total food intake over the last four days has averaged about .75 cups total per day, plus liquids.

The exhaustion continues without letup. Sleep, naps and doing little are of no avail in helping to relieve the exhaustion. I'll keep plugging along.

That's it, I think. I'll hopefully have a better report next time.

Good Health to All!

ScottW

AV Fistula Images

I thought I'd show everyone a couple of images of my AV Fistula surgery site.

The first is a long shot to show where on my arm the surgery was performed.
*You can still see bruising from the surgery under the incision site.









The second is a close-in of the surgery site itself. The incision is approx 1.5 inches long; though the end result will be evident along nearly the length of my forearm.


I plan on photographing the fistula once it has matured so you can see the intended outcome of the whole procedure. I'll start specific exercises in just over a week to help strengthen and mature the super vein. If I remember, I'll take photos as the maturation process occurs, creating a photographic timeline of the process.

If you have any questions, please ask.

Good Health to All!

ScottW

09 April 2011

The AV Fistula is healing nicely.

I had a follow-up appointment with the vascular surgeon yesterday, and everything is looking good. No infections, no vascular obstructions, not untoward effects from the surgery, and the surgery site itself looks good, too.

I was surprised to see that there are no stitches on the skin. The surgeon stitched under the skin with dissolvable sutures, and then simply assured proper alignment of the incision when bandaging post surgery. Also, the surgery site is about a half inch longer than normal [for this procedure] because of where the incision was made.

Anyway, I am to rest the arm for another two weeks, then have to start doing a "rubber band and ball" exercise for two months after that. This involves placing a constricting band on my arm at the elbow. Then, I'll squeeze a rubber ball for three minutes. Then band is then removed. I'll repeat this a for a total of three exercise sessions per day. Doing this will help the AV Fistula, or super-vein, to grow and strengthen.

In mid June I'll go back to the vascular surgeon to have another ultrasound of the L arm to see how the Fistula is maturing. At that time, we'll know if it is growing on schedule for the anticipated start of my life of dialysis.

In other news, my appetite has returned to its pre-surgery status--meaning, not much, but more than it was over the last week + following surgery. Also, all of the S/S's are at the fore once again. At least these were the least of my worries for a little while.

I have been going through lots of nausea the past four days or so. The minor hunger pangs are almost unnoticeable these days and if I miss them (which is nearly always lately), the nausea seems to slam me pretty hard and even with the Promethazine I am quite miserable for a long while after onset.

The other usual S/S's are going strong. No letup in these. Especially so, the edema in my legs is just ugly. Both legs swelled up really nicely about a week ago and have yet to decrease in size. At my feet the color test is +4, and the rebound is +20 (+). I can barely tie my shoes my feet are so swollen. When I walk down any stairs my feet and lower legs hurt; presumably from the edemic pressure. This is NOT fun.

My urine output remains good. The color is consistent, but the odor and foaminess remain unusually bad. Pain in my mid-back has backed off a bit and now comes and goes from time to time. Any break in this area is greatly welcomed!

The ammonia smell remains, as always. I rarely smell anything these days. The ammonia either cancels out any smells, or overwhelms it. Along those lines, my sense of taste is worse in that all I taste these days is bad breath. Immediately after brushing, all I can taste is foulness. Even the cinnamon Altoids are becoming ineffective in combating this ever present nastiness. (Blech!)

My headache remains. 'nuf said about that!

That's about all I can think of today.

Keep Smiling, Everyone; and remember to always carry a good thought or memory.

Good Health to All!

ScottW

AV FIstula Surgery

In brief, here's my report of my recent AV Fistula surgery...

I was scheduled to enter surgery at 1030a [last Wednesday], but didn't get into Pre-Op until 130p. I made sure the anesthesiologist knew about my med allergies, talked with my surgeon, then was wheeled into the OR.

I awoke about two hours later in Post-Op, and remained quite groggy for another hour. When I arrived in recovery I was told that the surgery was successful, in spite of the surgeon having to go to a site higher on the arm than planned because the vein he was grafting the artery to was too narrow at the wrist. So, the surgery area ended up about two inches proximal from the L wrist on the medial side of the Radial bone.

Because of how deeply I was put under [for the surgery], I had to wait over two hours in recovery before being able to go home.

I spent the rest of Wednesday and all of Thursday going in and out of consciousness because of my kidney function, and their inability to filter out the anesthesia. Because I cannot lay on that arm for a while, I slept in my recliner and was able to keep my arm stationary and out of harm's way.

Friday was better, but I still slept most of the day, waking for only brief periods. On Saturday I was mostly lucid. I was also able to notice the new "Thrill" in my L arm from the procedure. It's really tough to describe; but it both feels and sounds exactly the same. The fistula is really weird to feel, though. I am still very aware of it, and likely will be for some time.

My hand had some residual numbness, but this has since gone away. My fingers are cold, and are ashen or gray in color. (This is normal due to decreased blood flow top the hand.) Over the next few weeks I'll come to understand what will be normal in my L hand from now on.

Sunday was a bad day in my recovery. I awoke with intense nausea, and had my first emisis episode of this whole kidney disease. Luckily, once was enough, and my body settled down after that. However, because of a full dose of Promethazine, I was asleep most of the day once again. I think my body needed the sleep in order to advance the healing.

Today is much better. I still awoke with nausea, but a sliver of the anti-emetic was able to hold off anything more. For the first time since my surgery I feel mostly clear-headed...at least, enough to write in my blog! :o)

That's it for now.

Thanks to everyone for your thoughts and prayers!

Good Health to All!

ScottW