30 July 2012

Alright...

A few details are in order, so here you are...

-After nine dialysis treatments I am still not at my dry weight. My legs continue to cramp if too much water is removed at any one time. My last weigh-out on Saturday was 104.3kg's (229.5 lbs) after having had 1.2 kg's water weight removed.

-The after effects of dialysis are still hitting me pretty hard. Typically, my day goes like this:
   545a--Dialysis
   1015a--Leave Davita dialysis center, get some early lunch.
   1200p--Sleep
   400p--Awaken very groggy. Stay that way until about 930p, then begin to feel somewhat "normal." Remain sleepy until I go to bed around midnight.

Sounds like fun, doesn't it?

The next day--my "off" day--is usually a mix of feeling better, then slowly (or quickly) crashing sometime during the day. If I have things that I would like to do, I get to them earlier so that I actually get stuff accomplished.
By the evening my strength and energy are gone, and I spend the rest of the day feeling lousy.  Even more fun!

-As I stated in my last entry, my appetite is indeed up. However, that thought is tempered with a couple of things. First, I am snacking very little during the day. Second, I usually either eat two very small meals, or just one larger meal during the day. Though I do have hunger pangs, the total; food intake for a day is about three cups.
Additionally, my liquid intake has dropped significantly. Where before I was taking in between 40-60 oz of fluids per day, I am now ingesting about 25-35 oz's per day. I am almost never thirsty now, and find myself sipping more than actually drinking.  Like I've already stated, this is not unexpected. As my kidney function drops, so too will my total fluid intake and subsequent urine flow.

-I stopped taking the med my neurologist prescribed because I was continuously dizzy on it...and I hadn't yet even reached the therapeutic dosage! No way I am going to voluntarily put myself through 24 hour a day dizziness.

-I've had a total of two shots thus far at the dialysis center: Pneumonia and Hepatitis B. Plus, I've had a redundant TB (Tuberculosis) test, as well. I still have a number of inoculations to receive in order to get on the transplant list.

-I already told you that the dialysis center is trying to establish button holes in my fistula. Well, on Saturday, there was a problem. The distal site (nearest the hand) was canulated just fine. However, the proximal site (nearest the trunk) was not so luck. The tech administering the stick--the canulation--infiltrated the wall of the fistula into the surrounding tissue. An unknown amount of blood and heparin--used to flush the line--escaped into my arm. A nice hematoma developed where the infiltration occurred.
I immediately knew something was wrong when the tech began flushing the line. I had a painful pressure develop in my lower arm that was increased as fluid was moved in or out.
The tech got the supervisor.
The canulation site was sealed with direct pressure, and a second site distal to that one was canulated. This one had zero problems.
Lucky for me I knew something was wrong. I only had relatively minor compartmental intrusion. I will only have a nasty bruise around the site. Had I not discovered the infiltration, I could have had a really bad compartmental bleed; which would have been really, REALLY not good.
So, for anyone out there who feels as if something isn't right, speak up immediately! You might just be saving yourself from some very unpleasant things.

I think I wrote everything I was thinking of.

I will continue to try to be better about writing on my off days so this information is fresher on my mind.

Good Health to All!

ScottW


...and now...Pictures!

(Receiving a Lidocain injection at the distal canulation site. 28 July 2012

Notice the numerous canulation sites along the fistula.)

(Canulation of the fistula at the distal site using a 15 Gauge needle. 28 July 2012)

(Canulation of the proximal site. This is the one that missed! 28 July 2012) 

25 July 2012

Well...

I know it has been a while since my last entry, but with every other day being pretty much non-existant to me, time goes by faster than ever.

Today, I will make this brief because I have to be up in five hours to be getting to my next round of dialysis. So lets do this in generalities.

-My energy is up on my "off" days. Not a lot, but it is definitely improved.

-My weight is now down to 227 pounds (on average), and I am still not at my dry weight.

-I am still sleepy most of the time, but my off night rest is still longer at about 9.5 hours.

-My appetite seems to be up, but I have noticed that I am eating less throughout the day.

-My liquid intake has decreased significantly. I was actually expecting this.

-Along with that, my average urinary output has also decreased.

-I am enjoying the increased mental clarity I am seeing the day after treatment. Very Nice!

-The dialysis center has begun to establish "button holes" in my fistula. These are permanent access sites that will be used repeatedly for canulation.

-So far, my labs are looking good. Nothing alarming.

-We are still looking for my dry weight because my legs are still cramping during dialysis. Right now, I am having an average of about one kilogram --or 2.2 pounds, which equals just over a quart-- of water weight removed during dialysis.

That's all I can think of right now. Hopefully, I will remember to write a better entry on Friday, my next "off" day.

Good Health to All!

ScottW

16 July 2012

Today I will only be giving a few observations.

-On the days I am not doing dialysis, there is an all-encompassing underlying exhaustion. Yes, my energy level is up a fraction, but I am always sleepy tired now. This is definitely different from the exhaustion I felt before I started dialysis.

-In total, I lost 9 pounds of water weight last week. My initial weigh-in at the dialysis center was 239 pounds. My last weigh-out on Saturday was 230 pounds.

-My appetite has been up. Since starting dialysis, I have actually stated that I have been hungry...I know! A miracle!  ;o)

-My sleep has been longer and better (more restful). I am averaging nine full hours every night, plus about 3-4 hours during the day.

-My lower legs have continued to be sore and on the verge or cramping. I have used Icy-Hot on them several times. It helps in the interim, but not in the long run.

That's all I can think of.

Good Health to All.

ScottW

13 July 2012

A few quick notes today...

I had the cranial MRI this morning, and it came out clean of any abnormalities. So, the neurologist will now concentrate on neurochemicals. I picked up a Rx this morning for that, which I will start next week.

After my second dialysis yesterday, I was once again exhausted all day. I slept about five hours in the afternoon, then was asleep again by 100a this morning. My energy is up a fraction, but I am also nauseated more than usual today. So far, no real net gain in how I am feeling; but I am assured this will change as the junk is drawn out of my body.

Lastly, I just received word in the post (mail) that my application for transplant was accepted, and insurance approvals are now being run. This is great news!

Good Health to All!

ScottW

Pre-Transplant Work-up: Neurological Exam

Today I had my Pre-Transplant Neuro exam that focused on my headaches more than anything else.
The physician (neurologist) took a very thorough history (Hx), and asked about comparing this long headache to the TMD headaches. He did a brief neuro exam, then stated that he wants me to undergo a cranial MRI with vessel emphasis.

He stated that many times, renal pts (patients) have a neurochemical block that happens because the kidneys are no longer regulating certain chemicals and neurotransmitters are unable to function properly. The goal of his treatment will be to identify the neurochemicals being affected and then seek a phamacological solution until I get a transplant.

So, I am scheduled for the MRI happening this coming Friday morning at 900a. Plus, the doc prescribed a med (I don't remember what it is) that I will start to take next week. He also gave me a couple of samples of non-narcotic pain relievers that should more effectively reduce the headache. We'll see.
I am always wary of new meds because, if there are untoward side effects, I almost always have them. It is not a fun process discovering which meds my body will tolerate.

I have a followup appointment with the neurologist in a month.

That's all I've got. No obvious issues that might inhibit my candidacy for transplantation.  The MRI will show us more, but unless I hear back from the doc earlier than next month, I won't worry about this one at all.

Good Health to All!

ScottW

11 July 2012--First Dialysis

Well, my first day of dialysis is done. I cannot say that I was not apprehensive--because I most certainly was--but it went fairly well. Let's get started talking about it...

My dialyzing time is 545a (I know...eeewwww!).

The first thing I had to do was paperwork. LOTS of paperwork. You just have to sign your name to various agreements, understandings, etc in addition to normal things like insurance, medical Hx, etc.

After that, I am required to weigh myself upon entering the dialysis center. In this case, the center uses Kg's rather than pounds. My "Wet Weight" as they call it is 108.8kg's (239.36 lbs).

I print out my weight from the in-floor scale, then hand it to a nurse, and then go to my assigned chair/recliner--very comfy, by the way.

At the chairs my pulse and BP are taken both standing, then sitting.

The nurse then lays out supplies for a blood draw and cannulation of the fistula.

(My arm and supplies 6/10/12)

The nurse went on to educate me in great depth about everything that would be happening. The more you know the more relaxed you will be in the middle of all of this. Remember, if you don't understand something, ask the nurse! It is within your rights as a patient to have all the info you want about what you are going through!

My dialyzing time for the first treatment will be three hours. Subsequent treatment durations will increase until I reach my optimal dialyzing time period.

First thing...Cannulation of the fistula. I was poked with a 16 gauge needle on this day, but that will increase to a 15 or even a 14 gauge for the remainder of my treatments. Following cannulation of both needles (one for outtake, one for input), the sites are secured, and labs are drawn. (I'll have the results on Thursday).

(My arm post-cannulation 6/10/12)

(My arm post-cannulation ready for labs to be drawn 6/10/12)

Next, tubing is hooked into the dialyzing machine.

(My arm and blood going to and coming from the dialysis machine 6/10/12)

(Dialysis Machine  with my blood. The dialyzer--filter membrane--is the vertical tube to the R)

After I am on the machine, a nurse checks on me regularly. My BP is taken automatically every 30 minutes. Additionally, the nurse asks me several questions which you must answer honestly.

No being brave or stoic here!

These questions are along the line of 'How are you feeling? Do you have any questions or concerns? Are you having any leg cramps? Do you need anything?'

After all of this, you just sit/lay there.

(Me in my first dialysis treatment 6/10/12)

Remember what I was telling you about the pillow, blanket and slippers? Well, the room is so cool that you need to cover up and get comfy! (Yes, the lime green pillow was my idea...I knew it would clash loudly with my purple blanket!)

While dialyzing you must keep the cannulation sites visible to the nursing staff. That way they can easily see if there is an issue with the needles or tubing.

By the way, in dialysis, the cannulation needles stay in your arm, so it is vital that you avoid any unnecessary arm movements because one poke through the fistula wall will result in a nasty compartmental bleed...You don't want that to happen!

About an hour and a half into my treatment I began to have muscle cramps in both calves. The nurse happened by right then and I told her about the cramps. She stretched and compressed the calves on both legs trying to get them to relax. That didn't work, and the R calf became really painful. The nurse infused 400cc's of saline into the return tube, and put my feet down so I could press my feet into the floor. Between both, the calves settled down. They remained sore, but the cramping stopped.

I also noted a discoloration of the arm veins proximal to the cannulation sites and asked the nurse about it. She stated it was normal, and was a result of the fistula trying to compensate for the blood being removed from my body.

 There was nothing to worry about.

While I was dialyzing the clinic Charge Nurse came to talk to me about several things. Mostly more education about the whole process. I was also given a TB test (Tuberculosis), and was informed that I would be receiving inoculations for Influenza, Pneumonia and Hepatitis C. If I want a transplant, I must have these inoculations.

My Nephrologist also dropped by to see how I was doing. He told me I no longer have to take the diuretic--bye-bye Bumex!--because of the dialysis. No arguments from me.

When my time was up the nurse took my BP (standing and sitting) both while on the dialyzer, and then while off of it. She then removed the needles from mjy fistula.

The cannulation sites were tightly taped down to prevent leakage.

(My arm after cannulation needles were removed 6/10/12)

I was instructed that the bandages must stay in place at least four hours. If bleeding still occurs, re-tape the sites and check on them every couple of hours. If severe bleeding happens, occlude the sites with your hand and call 9-1-1. I had the proximal site bleed significantly when I removed the bandages, and I taped it secure once again.

Lastly, I was weighed once again (107.7kg's, or 236.94 lbs...a loss of about 2.33 pounds), given instructions for things to be aware of after my initial Tx, then sent on my way. The dialysis center recommends you use a wheelchair to get to the vehicle you are riding in just in case you have any dizziness...I walked. I felt OK.

As expected the dialysis left me quite exhausted. I spent the remainder of the day dozing on and off, and feeling as if I were in a hazy fog. Around 830p I finally became mostly lucid and was able to think clearly for the rest of the evening.

On the downside, I had a nasty headache. It was incredibly intense and took three t3's to get under control. I don't know if this is a one-time thing--let's hope it is! Just an awful headache. I haven't felt a headache like that since my TMD was out of control. On a scale of 1-10, that was a solid 15+. No kidding.

On waking today my energy was up a fraction, the headache was reduced and I felt sort of clear headed. My calves both ache painfully today, and walking only exacerbates the issue. I have nothing else to report about in regards to the dialysis.

So there you have it, folks! The first of many dialysis treatments to come. My schedule will continue to be every Tues-Thurs-Sat at 545a. If anything new comes up I will certainly pass it along.

Good Health to All!

ScottW

09 July 20012

Alright...

So that I don't have a bunch of catch-up to do on my next entry [that talks about starting dialysis], I decided to get that done now so that I can purely concentrate on the treatment next time.

Weight Gain/Loss: Over the last six days my average daily weight gain has been 3.50 pounds. My average daily weight loss has also been 3.50 pounds. That is pure water weight from day to day. I gain it through consumption of foods and liquids and lose it via urination, respiration and conduction.

I had two and a half days of uncontrolled diarrhea again. It has been since March or April that I last had this happen. Luckily this time it didn't last for four+ days.

My sleep continues to be unrestful. I am averaging about 8.5 hours per night, plus naps of between 20 minutes and four hours. Often, I am getting multiple naps of 30-45 minutes every day. On average, I estimate that I am getting between 11-13 hours of unproductive sleep every single day.
I say unproductive because no matter how much or how little sleep, my exhaustion 24/7 is total. What energy I do get from my sleep is used up within 10-15 minutes. That's it. After that I am pretty much useless.

The headache (now 32 months) is as strong and unrelenting as ever. It continues to average a solid 9.75.

My bilateral flank pain (over both kidneys) continues without a break as well. No relief, and sitting comfortably in most chairs is nearly impossible. Even my recliner is not as relaxing as it has been. It is now taking very little pressure on the kidneys to flare the pain level.

My appetite has actually increased for some reason. Maybe I am just tolerating food better. In any event, I have been averaging about 2 cups of food intake per day, plus liquids. I'll certainly take that!

That's all that my tied brain can think of.

Hopefully, I will write again tomorrow to tell you about my first dialysis treatment. I will be taking pictures, too. Then on Wednesday morning, I have an appointment with the Neurologist. I will write about that visit, too. Wish me luck...

Good Health to All!

ScottW

06 July 2012

Just a very quick note...

I found out today that my start time for my dialysis is at 545a on Tuesday (Eeewwww!)
I know it is early, but I can maybe sleep for most of the time. Plus, that schedule is easier on my wife as far as how it will impact her jobs.

So, I will get photos, descriptions, etc. I do not know when I will get those things on here because I have yet to discover how I will feel after the dialysis. As soon as I feel up to the task, I will get everything done.

Again, my dialysis schedule will be Tues, Thurs, Sat at 545a every week. The clinic manager estimates that I will take 4-5 hours to complete the treatments. Plus, I will have labs every day, get weighed twice a day, I will have to meet with a nutritionist...oy...so much changing, and so many things going on.

(Deep breath!)

So, on to hopefully enjoying my last dialysis free weekend until I get a transplant.

Good Health to All!

ScottW

05 July 2012

I hope that all you US citizens had an enjoyable Fourth of July, as we celebrated our Independence gained 236 years ago. I spent the day with friends who are more a part of my family, and we ate lots, had great conversation, and got to see a great fireworks show from their porch. For me, it was a great holiday, and a very enjoyable time out of the house.

Alright, let's start with news.
I will begin dialysis next Tuesday, 10 July. I do not yet know the time as the dialysis center is fitting me into an already fully booked schedule. Like I have already stated, I will do in-center dialyzing for a few weeks to see how my body reacts to it. If I find little relief from the Tx's (treatments), I will likely begin training to start home hemo. Only time will tell how that goes.

I took another brief tour of the dialysis center--in this case, Davita Dialysis, a national company that is affiliated with my Nephrologists office. I learned a few things that I want to pass on to you.
1) Take a small 'kit' with me every session. This kit should include a blanket, a small pillow, slippers, headphones (for watching TV), and books or magazines if I choose. The blanket is to help keep me warm as the room is kept at a cool 60 or so degrees.
2) I will be weighed pre and post treatment every session, plus have labs done each time as well so they can keep track of how much dialyzing I need to do from Tx to Tx.
3) I can bring something to eat if I choose. Right now I don't think this will be an issue as my appetite is so poor anyhow.
4) My life is forever changed once I start--until I get a transplant, at least.

So, it will finally start next Tuesday...yay...

I have continued to weigh myself twice daily. The first eight days my average weight gain and loss are as follows:  Daily Gain (+3.15 pounds);  Daily Loss (-3.05 pounds).  My body is definitely fluctuating!

Everything continues to be elevated. The headache is still more intense, my exhaustion is still overwhelming, the edema is taking nasty swings from mild to severe, and I am feeling so incredibly lousy all of the time! I can't think of how to better elaborate on these things, so I will just leave it as I stated above.

I know that I am forgetting something...but I just can't remember. Oh well.

Good Health to All!

ScottW