15 March 2013

Seeing that I am behind in my entries, let's get right to it.

The March blood draw results:

*Albumin (12 Mar):  4.60 g/dL (+0.10 from 19 Feb)

*Hemoglobin (12 Mar): 11.1 g/dL (+.60 g/dL from 05 Feb)

*Ca Corrected (05 Mar): 9.30 mg/dL (-0.40 mg/dL from 05 Feb)

*Phosphorous (05 Mar):  5.70 mg/dL (+ 0.8 mg/dL from 05 Feb)

*PTH Intact (19 Feb):  97 pg/mL (-21 pg/mL from 08 Jan)

*K+ (19 Feb): 4.00 mEq/L (-0.40 from 08 Jan)

*spKdt/V Dialysis (05 Mar): 1.46   (-0.90 from 05 Feb)

I really don't like the big jump in phosphorous. That's now two months in a row that my phosphorous has jumped. I don't know why. I'm taking my binders as I need, I am [mostly] avoiding the foods that will raise the number. Even when I was on the cruise I was actually really good about the foods I ate. So, looks like more work ahead of me this month to get that back in line.  :o(

My last two weights from dialysis:

12 March 2013
Starting Weight:  107.7 Kg
Ending Weight:  103.1 Kg
Water Removed:  4.60 Kg

14 March 2013
Starting Weight:  106.9 Kg
Ending Weight:  103.5 Kg
Water Removed:  3.40 Kg

The pattern of my body giving back too much continues. That's now happened on every Tx since I returned from vacation. During yesterday's dialysis setup, the Tech even aimed for 104.6 Kg in anticipation of my giving back extra water; only to be 1.1 Kg under that. I asked one of the doctors about it on Tuesday and he stated that my numbers look good, so there is not a good reason other than, that's what my body is doing. So, unless the extra losses become alarming in their total volume each dialysis, I'll just keep doing what I'm doing, and hope that these wild swings come to an end.

I am thinking about a date to get my kidneys out. They have been getting more and more painful. During dialysis--and even with sitting up--by the end of the session I need to take pain meds as much for my back as for my [usually] raging headache. Not fun. Even now as I sit here typing the pain in both flanks is so bad I can hardly stand it.

I've also started a renewed effort to cut back on my daily liquids (again, in anticipation of the nephrectomy) so that I struggle less when my liquids intake is reduced to about 32 oz's per day. That is going to be a tough one for me. I thrive on water, juices, milk, etc. Cutting back to a quart in a 24 hour period will not be easy. Better to get started now than be forced into it when the kidneys are gone.
I will absolutely keep you updated on the decision about getting the nephrectomy done.

And lastly, I'll leave you on a light-hearted note. The picture below is of one of the Tech's at Davita today dressing up as Dialysis Man! He walked around like this all shift. It was awesome!

Good Health to All!

ScottW

10 March 2013

(Continuing from Last Entry on 08 March 2013)

As beautiful as Nassau was, the cruise had one more stop to make the next day. The destination: Coco Cay, the RCL's privately owned island in the Bahamas.
The island really isn't much, as far as size and amenities. Basically, it is a beach, some support buildings (mostly open-sided) and a few docks. However, it is gorgeous there!

(Leaving the ship for Coco Cay, Bahamas. 24 Feb 2013 SW)

(The docks at Coco Cay, Bahamas. 24 Feb 2013 SW)

(A Beach on Coco Cay, Bahamas. 24 Feb 2013 SW)

(A postcard view of the ship from Coco Cay, Bahamas. 24 Feb 2013 SW)

 

(Thatch Umbrella on Coco Cay, Bahamas. 24 Feb 2013 SW)

(Coconut trees and blue waters at Coco Cay, Bahamas. 24 Feb 2013 SW)

 

Like I stated, Gorgeous!

I took the launch to the Cay and enjoyed the warm waters, the cool shade of the coconut trees, and, of course, the free lunch. The ship stayed at the Cay until 430p when we set sail for the home port of Port Canaveral; arriving there the next morning. The three day cruise went by all too fast; but it was sure memorable. For me, the best thing about this cruise was the brief respite from the mental burden of this disease. Though I still had physical constraints by which I conducted my days, it was the mental vacation of sorts that I cherish most. I was doing something most unsick-like, I was enjoying myself immensely, and I had a few days that this disease wasn't at the forefront of my time. It was a nice, and very welcomed break.

The afternoon of getting back to Florida, I was again at DaVita Orlando East. My Tech this time was Leanna, and she was fantastic! The entire crew was eager to hear of my adventures on the cruise; but Leanna was especially inquisitive and she seemed genuinely interested in me and my time on the cruise. Plus, she showed me something that I have taken back with me to my DaVita clinic here in Provo--a technique of needle removal that is less painful.

Essentially, the canulating needle [on removal following Tx] is rolled back and forth all the way out of the arm. For the first time I had zero pain on removal, so I asked what she did, and Leanna graciously explained the easy--but often overlooked--technique. It leaves a little blood on the arm, but that is a very miniscule price to pay for improved comfort during needle removal. My first treatment here at home I explained it, the Tech did it as described, and...no pain. I am having all my Tech's do this from now on.

This second treatment (Tx) in Orlando went well. Aside from being at 109.6 Kg's, I felt just fine; though my energy was pretty much gone. I targeted my weight a little heavy, leaving the clinic at 104.6 Kg's. As there would be only two days until my next Tx, I felt that leaving a little heavy would be just fine.
Since my return from the trip, my weights have been way off on both ends of Tx. Here are my weights since the 28th (Feb):

28 Feb 13
Starting Weight:  106.9 Kg
Water Removed:  3.70 Kg
Ending Weight:  103.2 Kg (That's a .90 Kg give-back)

02 March 13
Starting Weight:  106.8 Kg
Water Removed:  3.70 Kg
Ending Weight:  103.1 Kg (A 1.0 Kg give-back)

05 March 13
Starting Weight:  107.1 Kg
Water Removed:  3.80 Kg
Ending Weight:  103.3 Kg (A .80 Kg give-back)

07 March 13
Starting Weight:  107.5 Kg
Water Removed:  4.40 Kg
Ending Weight:  103.1 Kg (A 1.0 Kg give-back)

09 March 13
Starting Weight:  108.0 Kg
Water Removed:  5.60 Kg
Ending Weight:  102.4 Kg (A 1.7 Kg give-back)

By give-back, I am referring to the amount of water my body is giving back to dialysis above and beyond the target goal of 104.1 Kg. We are not planning this extra water removal; it is simply my body ridding itself of this water. Yesterday's was the worst yet. During Tx I was nauseated, had cramping in my feet, legs, shoulders, neck and up and down my spine. My sleep was terrible because of this, and I have been dragging all day. The only reason I can think of for this sudden change [in my total water removal] is my vacation. Perhaps being at seas level triggered something my my body. Maybe it was the warmth and humidity, or a combination of everything. I don't know for certain...just positing ideas.
I just hope that things settle down. My body is having a rough time of things with going lite Tx after Tx. Today's extra loss was in spite of the tech going a Kg heavy in anticipation of giving that extra Kg back; only to give 1.7 Kg too much.

Also, as I stated prior to the cruise, I moved last week. So, instead of resting on my off-days, I have been working on unpacking. (yay for me.) Thing are finally settling down, and my routines will gradually settle back to normal.

I had the monthly blood work drawn last week, but will save those numbers for my next entry.

For now, I'm through with typing.

Have a great few days! See you soon!

Good Health to All!

ScottW

08 March 2013

24 Feb. 2013

(Love the purposefully horrendous outfit!)

 

That's me! I'm standing in the waters off Coco Cay, Bahamas.  It's hard to believe that I got back from the trip over a week and a half ago. 

Lots to talk about, so let's start with the cruise...

Royal Caribbean Intl is an outstanding company! They treated me with only the greatest respect, and assisted me readily any time I asked. The ship, The Monarch of the Seas, was beautiful, the food was delicious, and the entire trip was nothing but memorable.

I arrived in Florida on Wednesday, 20 February. The first day was spent with family, which was thoroughly enjoyable. I got the chance to run their dogs ragged by throwing their ball constantly for about two hours. They were so tired that night that they almost didn't eat! On the morning of the cruise I had my first of the trips' two dialysis Tx's. Being that it was at my normal dialyzing time, this was no big deal.

The employees at Davita Orlando East were exceptional in their duties.

Johnathan, my Tech for the first Tx was ready for me as all my info was waiting. The Tx went well, and seeing the different protocols (as established by the State) was interesting. In fact, the entire staff seemed genuinely happy to see me, and they were excited that I was going on a cruise. I weighed in at a hefty 109.0 Kg's, and, true to form, gave back too much, leaving at a slim 103.6. Nearly five and a half Kg's. Needless to say, but I was wiped out. That's a LOT of weight to drop in four hours. After getting on the ship, setting off and getting some food, I went to my cabin and slept most of the rest of the day and night.

The cruise itself, which we drove to right after Tx,was phenomenal. Like I stated, everything was beyond fantastic. I was sure to watch the sodium intake on all foods, and conserved my strength as best I could for the second stop, Coco Cay--the RCL's privately owned island north of Nassau, in the Bahamas.
So, on our stop in Nassau, I stayed aboard and wandered the ship, taking lots of pics with my HTC phone, my Samsung tablet and a small Nikon. Here are a few of Nassau Harbour...

 

(Atlantis Resort rises above Nassau Harbour. 23 Feb 2013 SW)

The entrance to Nassau Harbour, Bahamas. 23 Feb 2013 SW)

(Entering Nassau Harbour, Bahamas. 23 Feb 2013 SW)

(Looking out over Nassau, Bahamas from the deck of The Monarch of the Seas.

23 Feb 2013 SW)

I'm glad I stayed aboard in Nassau because I heard from numerous people that everything was a long walk from the ship, and I just couldn't have done that.

So, I think I'll stop this entry here...a good place to do so. It's late, I'm tired, and it just gives everyone something more to look forward to. I will try to get this finished up in a day or so.

Good Health to All!

ScottW