Friday, February 15, 2013

15 February 2013

Two weeks since my last entry, and with what's coming up in the next two, if I don't get this entry done now, then you wouldn't see another entry for a full month. Let's start with the weights....

02 Feb 13
Starting Weight:  106.6 Kg
Water Removed:  2.50 Kg
Ending Weight:  104.1 Kg

05 Feb 13
Starting Weight:  108.3 Kg
Water Removed:  4.10 Kg
Ending Weight:  104.2 Kg

07 Feb 13
Starting Weight:  106.2 Kg
Water Removed:  2.40 Kg
Ending Weight:  103.8 Kg

09 Feb 13
Starting Weight:  107.5 Kg
Water Removed:  3.70 Kg
Ending Weight:  103.8 Kg

12 Feb 13
Starting Weight:  107.9 Kg
Water Removed:  3.80 Kg
Ending Weight:  104.1 Kg

14 Feb 13
Starting Weight:  108.0 Kg
Water Removed:  3.90 Kg
Ending Weight:  104.2 Kg


My weights continue to be fairly consistent. I am obviously retaining more water than previously (*Note the several 108 Kg weigh-ins), and am urinating a bit less. I cannot account for the increase otherwise as my appetite remains consistent.

The monthly labs were drawn last week. Here are the results:

*Albumin (05 Feb):  4.50 g/dL (No Change from 08 Jan)

*Hemoglobin (05 Feb): 10.8 g/dL (-0.50 g/dL from 08 Jan)

*Ca Corrected (05 Feb): 9.70 mg/dL (+0.30 mg/dL from 08 Jan)

*Phosphorous (05 Feb):  4.80 mg/dL (+ 1.0 mg/dL from 08 Jan)

*PTH Intact (08 Jan): 118 pg/mL (No Change from 1 Dec)

*K+ (08 Jan): 4.40 mEq/L (No Change from 18 Dec)

*spKdt/V Dialysis (05 Feb): 1.55   (+0.08 from 08 Jan)

As you can see the URR value is no longer being used. It has been replaced by the spKdt/V Dialysis value. However, I have not been able to correlate the number with effectiveness of treatments. I will keep asking about it.
So, another month and my labs are still looking good. I don't like to one point jump in the Phosphorous level; but it is still well withing the target range. I have already started having greater awareness of the phosphorous-rich foods I sometimes eat and making sure I take a binder after the meal. (Not that I eat high phos foods in the first place. Overall, I have been extremely good at avoiding these.)

I had my two month follow-up with my Nephrologist this afternoon, and he stated that I am looking good, and everything seems to be progressing well. He likes my labs, and all my efforts to manage the disease [as best I can]. I told him that I am holding off for now on the renal removal as my kidneys are still producing a decent volume of urine, and the flank pain is still tolerable. Plus, I still have that dental work to do. My doctor was fine with my reasoning, and supported the decision.

My sleep continues to be all over the place. The number of hours I get has actually decreased, and I have been taking fewer naps. I estimate my total daily sleep is averaging about 9-10 hours per day; for now, at least.

The headache marches on unencumbered by pretty much anything. I'm still hoping that the nephrectomy will result in the headache disappearing.

My energy and exhaustion levels are both lousy. In other words, Almost zero energy, and extreme exhaustion. I get accomplished what I can from day to day, and just let go of expectations for myself. For me, that's a hard lesson. I am someone who goes at high speed from the moment I awaken until the moment I sleep again. To do very little from day to day is difficult. I try to concentrate on being satisfied with however much I can do; rather than lamenting what I cannot. Like I said, a hard lesson.

Lastly, the reason the rest of February is going to be so hectic...

Remember I was telling you that I am going on a cruise to the Bahamas? Well I leave for that next Wednesday. I'll be gone for one week--three days for the cruise itself. Yes, I have dialysis treatments all set up for the Friday and Monday (the day the ship sails, and the day it returns). I will be going to the Davita Center East in Orlando for both Tx's. Everything was arranged by the Coordinator at my Davita center here.

Also, I am moving at the end of the month, ahead of the upcoming surgeries. The new condo is a lot quieter, is far more restful, and best of all, has no stairs to climb (or descend). So, I am packing the apartment now, will finish up after I get back from the cruise, move, then get my computer set up again...Obviously, it could be a while before my next entry here.

So, that's the latest. I will try, after returning from Florida, to get a few photos from the cruise on here--but that might take a while with the move and all.

Have a great two or three weeks! I will see you all on the flip side of a new home!

Good Health to All!

Let's go have some fun!!!

ScottW


Saturday, February 2, 2013

01 February 2013

My wishes for a better week haven't really panned out as I had hoped.

Weights:

26 Jan 13

Starting Weight:  108.0 Kg
Water Removed:  4.30 Kg
Ending Weight:  103.7 Kg

29 Jan 13

Starting Weight:  107.3 Kg
Water Removed:  3.90 Kg
Ending Weight:  103.4 Kg

31 Jan 13

Starting Weight:  107.2 Kg
Water Removed:  4.10 Kg
Ending Weight:  103.1 Kg

My weight is still way up at the start of dialysis. I have been watching my fluid intake, so the added weight is all about my kidneys being less effective.
However, as you can see on my last three Tx's, my final weight is way below my dry weight target.
My body is simply giving back too much. The numbers are inputted to hit my dry weight, but my cells are giving more. None of the Center Techs can figure out why my body is doing this; it just is. I know that I have stopped trying to guess it because every time I do, I am also wrong and I end up either heavier than I should, or go lighter.

The last three dialysis Tx's have also been rough like I described on my previous post. No fun at all. However, we did figure out how to better minimize my headache that spikes during treatment.  First, we changed the water removal to a linear patter--meaning a constant, gradual water removal (rather than the step method of take some, stop removal...take some, stop...etc).
Secondly, we tried to adjust the way sodium is removed as well. We are using something called 'Step Method 3'--whatever that means. I just know that by using this, I am not having a huge spike in headache pain during dialysis. Yes, the headache still worsens by the time I'm done, it just doesn't happen with a WHAM!!! I'll take that!

My bilateral flank pain is just ridiculous all the time. The meds are barely covering it at this point. As the winter has drawn on, I am looking more and more to getting them out. However, two things are needing to happen. First, I have a Bahamas cruise to go on in 21 days from now. Just a change of routine will do my heart and mind tremendous good.
Secondly, in anticipation of the upcoming surgeries and recovery times, I am looking to move to a quieter home, with no stairs, and which is visually restful as well. I have applied to rent a very nice apartment in a mixed use building. These apartments are built to condo standards, so they are very quiet, there are no stairs to handle, and the apartment itself is very nice, very peaceful inside. Assuming I get it, I will be moving sometime in early March.
So, also assuming I get into this apartment, I am looking to mid-March to mid-April for the double Nephrectomy. At that time, if I am still producing a decent volume of urine, and if the pain is still tolerable, that may get pushed back even further.
However, all of this expectation is completely moot if my kidneys totally crash. Only time will tell.

My sleep continues to be very poor. This is still in large part to just being uncomfortable in bed. Generally, the best sleep I get is when I fall asleep in my big comfy chair, in a reclined position. However, I don't like sleeping in that chair a lot. I did my time sleeping for nearly two years in a chair (with ottoman) when I had my back injury in the late 90's. Even my post-dialysis naps have been poor. As a result, I continue to operate exhausted day after day.

As far as eating...there is no change there. No breakfast--which is actually normal for me; a very lite lunch--except on dialysis day; and a dinner that ranges from small to moderate only. As I reported last time, I never know how food will appeal to me. This past week has been rough in that department. So much that I would normally eat has just been a complete turn-off just thinking about, let alone making an actual decision.  :o(

And...

There was something else I wanted to say...
...(aargh) I can't remember.

Let's have a great week, Everyone!

Good Health to All!

ScottW

Friday, January 25, 2013

25 January 2013

With last week's tests and my feeling lousy since, I have not gotten caught up on my day to day entry. So, let's get to it...

Let's again start with the dialysis weights:

12 Jan 13

Starting Weight:  107.5 Kg
Water Removed:  3.10 Kg
Ending Weight:  104.4 Kg

15 Jan 13

Starting Weight:  108.3 Kg
Water Removed:  3.30 Kg
Ending Weight:  105.0 Kg

16 Jan 13
*(Yes, you read this correctly. Remember, I had adjusted my normal schedule to accommodate prepping for the colonoscopy.)

Starting Weight:  107.5 Kg
Water Removed:  3.80 Kg
Ending Weight:  103.7 Kg

19 Jan 13

Starting Weight:  105.7 Kg
Water Removed:  1.50 Kg
Ending Weight:  104.2 Kg

22 Jan 13

Starting Weight:  108.1 Kg
Water Removed:  4.20 Kg
Ending Weight:  103.9 Kg

24 Jan 13

Starting Weight:  108.0 Kg
Water Removed:  4.30 Kg
Ending Weight:  103.7 Kg

As you can see, my weight has increased. I don't know if this is due to actual weight gain, added water retention, decreasing kidney function, etc. At this point, I only know that I am heavier. What I cannot see is any increased edema anywhere. My ankles or feet aren't swollen, my lungs and heart remain clear; but, my bilateral flank pain has increased by a good amount. I am keeping an eye on the weight, and am being extra cautious about my fluid intake. Maybe observation will give me a little insight, too.

My sleep has been non-restful the last couple of weeks. This is in large part due to the increase of flank pain. I just cannot get comfortable in bed, and I toss and turn all night because of this. My dreams have been fine, so at least I am not struggling with things on the subconscious level...at least not right now. As a result of my poor nightly sleep, I am dozing off numerous times every day for 15 minutes to an hour. Right now, I estimate my daily sleep totals are at about 11.5-13 hours. Some days are less than that; but other days are more. Again, no pattern.

On top of the poor sleep, I am walking around quite exhausted probably 70% of the time.  I am getting very little housework done, as a result; and this includes my cooking every day. Even a simple meals loom over me like some gigantic task to overcome but my strength is just gone. Sometimes I can push through the exhaustion, other times not. Additionally, the appeal of foods is all over the place. I never know what will look, smell or taste good, let alone even thinking about any particular foods. All of this combines to continue making eating a challenge from day to day.

My headache has been consistent lately...that is, consistently bad (!). Increased headache level across the board for no apparent reason. There is no clear TMD involvement, so this increase in the pain level seems to be all about the kidneys. My T3 usage is yo-yo-ing as a result. Though I am still averaging about three tablets/day, I will take four or more one day, then only one or two the next, and so on.  And yes, about half the T3 dosing is for the flank pain.

My total urine flow seems to be decreasing. Some days I feel as if I've hardly urinated at all; while other days seems like I don't have any problem voiding my bladder. This inconsistency is telling what my kidneys are doing. And lately, it seems like they are telling me they are dying more and more every day.

My overall feeling is increasing sickness, more exhaustion, inconsistent BM's, inconsistent urine flows, appetite and food appeal that are both all over the spectrum, poor sleep, etc. On so it goes, day after day. About the only consistent pattern is the inconsistent nature of pretty much everything. This even applies to my dialysis treatment. Yesterday I had a terrible treatment. I went in feeling OK, but a half hour into the Tx I began feeling nauseated. I had to have an injection of Zofram to ease it up. Then, I had a bout of diarrhea hit me (I took Imodium for that); after which I became flushed, then cold, my flank pain was so bad I could not get comfortable even sitting straight up; and my headache went crazy and I was miserable. Plus, I had intense cramping in both feet and lower legs during my post-dialysis nap.  NOT a good session.  :o(

So, I suppose we'll see soon enough if this week is an anomaly, or a new normal--let's hope that's not the case--in any event, a bad week overall. Tomorrow's dialysis should help me see any pattern here.

That's all I have for today. Let's all hope and look for a better week ahead!

Good Health to All!

ScottW

Wednesday, January 23, 2013

Test Report: Colonoscopy


Last Friday, 18 Jan 2013, I had the long-awaited Colonoscopy at the IHC campus in Murray, UT.
(Remember...I had to turn 50 before my insurance would cover the procedure..)

The test prep really wasn't too bad. Going hungry was my biggest challenge because of the nausea I get whenever I go without food.  I followed the Dulcolax dosing schedule, and the instructions for the gatorade/miralx solution. The worst part of the prep was drinking the solution. The flavor wasn't too awful; but the thickness of the solution was extremely off-putting. Anyhow, I didn't really start feeling the effects of the stuff until about 0500 the day of the test.
By the time I left for the hospital, things had cleared out as expected. Using cleansing wipes really helped cut down on the irritation of having to use so much TP. Anyhow...

I arrived at 945, as scheduled; but the doc was running behind schedule, so I didn't get called to go back for the prep until about 1145a. There was all the usual questions, signatures, etc. Plus, because anesthesia would be used, I got an IV in my R arm. The BP cuff was placed on my L lower leg (just above the ankle) because my L arm could not be used at all due to the fistula for dialysis. In fact, the nurse put a tag on my L wrist stating the my arm could not be used (see the pic below).
I also had a 5-Lead ECG attached. Then, I only had to wait.


(Waiting in the prep room, 18 Jan. 2013)
 
When the time came I was walked to the procedure room and directed to lay on the exam gurney/table. The doctor came it, talked to me about my Hx, the procedure, etc. I was then repositioned on my L side, and given an injection of Propofol--a fast acting anesthetic that also leaves the body fairly quickly. The injection stung...a lot! Within seconds I could feel it working. I literally said, "There it is...Ok, see you later!" and I was gone.
 
I awoke about an hour later in the recovery area. Once awake, the nurse encouraged me to pass gas--which I freely obliged, of course ;o) ...you really can't help that part. Anyway...remember what I said about the anesthetic wearing off quickly? Well, by the time forty five minutes had passed since waking, I was fully awake, alert and cognizant. At that point I got dressed and awaited the doctor to talk with me.
 
When he arrived, the doctor had pics with him--I was hoping for that!--and explained that overall, everything looks good. I had four small, developing polyps which he immediately excised and sent for lab analysis. I was told they appeared completely benign, but would be receiving the lab report soon. The doc had no concerns about anything regarding the test, and was given the OK to leave. Now, I await the lab results.
 
The test images are below. The four polyps are circled on screenshots 4, 9, 11.
 
 


Wednesday, January 16, 2013

16 January 2013

Just a quick note today about my Dental Exam on Monday afternoon (the 14th).

I have a little work to get done before the clearance is given. There are six cavities to be filled, ranging from small to moderate size. I need to have a deep cleaning done. and, I have a partial root canal to do on one tooth. They may be able to save most of the tooth. Either way, I will end up with a buildup and cap.

That's it. Considering the dental problems that Renal Failure could cause, I will not complain about this relatively little amount of work that has to be done.

Elsewhere, I am doing dialysis again today (one day after my last TX) so that I can prep for the upcoming colonoscopy tomorrow without worrying about having to get up multiple times during TX.

And because of the test and dialysis adjustment, my week is neither fun, nor restful.
I had my dental exam on Monday, Dialysis on Tuesday, Dialysis again today, the test prep to do tomorrow, the test itself on Friday, and dialysis on Saturday. What fun!!!  ;o)

The test prep for the colonoscopy involves the following:






As always, I will let you know the results of this test. I am not worried about this one as there is zero family Hx (history) of colorectal cancer. But, I will tell you for sure--probably on Sunday, or Monday. I will be wiped out all day Friday from the anesthesia (because my kidneys won't be able to filter it out very well), and Saturday is dialysis, so not blogging that day goes without saying. So, Sunday or Monday, depending on when I can get to the blog update.

And that's all I have today. Just wanted everyone to be up to date.

Good Health to All!

ScottW

Friday, January 11, 2013

10 January 2013

Let's get to it...

Dialysis Weights:

01 Jan 13
Starting Weight:  107.2 Kg
Water Removed:  3.20 Kg
Ending Weight:  104.0 Kg

03 Jan 13
Starting Weight:  106.0 Kg
Water Removed:  2.20 Kg
Ending Weight:  103.8 Kg

05 Jan 13
Starting Weight:  107.0 Kg
Water Removed:  2.50 Kg
Ending Weight:  104.5 Kg

08 Jan 13
Starting Weight:  107.0 Kg
Water Removed:  2.70 Kg
Ending Weight:  104.3 Kg

10 Jan 13
Starting Weight:  106.5 Kg
Water Removed:  2.80 Kg
Ending Weight:  103.7 Kg

Again, my weights are holding steady. I am really trying to watch my fluid intake. Sometimes this leaves me really, really thirsty. Other times, I do poorly and drink far more than I should, and pay for it with extra water retention (and therefore, weight gain). I am drinking that Glaceau Smart Water (electrolyte enhanced water), and it really does help cut down on how much liquid I ingest. I just wish it were a lot less expensive. Oh well, it helps do what I need, so it is definitely worth the cost.

I had my monthly labs drawn this past Tuesday. Here are the latest numbers:

*Albumin (08 Jan):  4.50 g/dL     (No Change from 04 Dec)

*Hemoglobin (08 Jan):  11.30 g/dL     (-0.40 g/dL from 04 Dec)

*Ca Corrected (08 Jan):  9.40 mg/dL     (+0.10 mg/dL from 04 Dec)

*Phosphorous (08 Jan):  3.80 mg/dL     ( -0.90 mg/dL from 04 Dec)

*PTH Intact (08 Jan):  118 pg/mL     (+23 pg/mL from 19 Nov)

*K+ (08 Jan):  4.40 mEq/L     (+0.20 mEq/mL from 19 Nov)

*URR (08 Jan):  72%     (+3% from 04 Dec)

*spKdt/V Dialysis (08 Jan):  1.47     (+0.12 from 04 Dec)
**This is a new value that has something to do with the effectiveness of urea removal during dialysis. This number may or may not be associated with the URR--I just don't know yet. The sources I have read on this (so far) are extremely clinical in description and even I am having a difficult time interpreting the info. I will have to ask someone at the clinic about it so I can understand it.

So, aside from a slight drop in Hemoglobin, and a still depressed PTH level, my numbers actually look really good! My efforts to eat better and avoid the bad things are definitely paying off.

Alright...getting away from numbers...

I have my appointments for the Dental Clearance and Colonoscopy set. They are Monday (14 Jan) and Friday (18 Jan) respectively.
For the Dental Clearance I am going through the Utah College of Dental Hygiene. The exam will be done by actual dentists; but because this is a teaching environment, the exam (including x-rays) will be FREE of charge! Yeah, you read that right! FREE. I only found out about this place because a family friend went there and directed me to their office. Any work I may have to do will cost money, but also at a reduced rate than at a general practice.
The Dental Exam can be pricey, so be sure you call around and find the best deal you can. If a Dental College of some sort is in your area, be sure you look them up as well!

The Colonoscopy (yes, I am no 50 years old...half a century!) will be done at the IHC facility in Murray, UT--the same campus that my Transplant Team is based at. For that I won't be able to eat any solid foods for a full twenty four hours prior to the exam. Luckily, the exam is at 0945a, so I won't have to wait all day. Plus, on Thursday morning, I will be eating a big breakfast prior to my dialysis Tx. So, I will [hopefully] not be too hungry for the day.
And of course, I will tell you about the results of both exams.

The headache continues without a break. The pattern remains fairly consistent, as well; though, the last few weeks, my off days have seen a jump in the average intensity of the headache pain. No reason, it just is.

The flank pain continues 24/7. My sleep is now being affected by it. I am less and less comfortable in bed, so my sleep suffers. Since I am still producing a fair amount of urine, I am in no hurry to schedule the double nephrectomy.

My appetite is still about the same as the last month. Overall, I am still not eating a whole lot. Plus, even my standard foods are becoming less and less appealing. I am trying to mix things up so I don't create appetite fatigue; but with how my tastes are being affected, it may not make much difference.

My overall energy level is way down. I am taking longer than ever to recover from dialysis. My energy, such as it is, doesn't return until later in the evenings. My whole body aches and is weak for hours longer than I have been [to this point]. My off days find me doing fewer and fewer chores around the house simply because I don't have the energy mentally or physically. Cooking is a real challenge to even think about, let alone standing up for.
I take days to get to all of my chores--but I am still getting them all done...just getting about it very slowly. So between my head, flanks, poor sleep and my decreased energy, I am getting as much done as I can...but that isn't a lot by any stretch. I don't like feeling like this; but I literally can't do much of anything about it. This is just another sign of disease progression and the toll that dialysis takes on the body.

I still maintain that the challenge is to keep my mind in a good place. With the support I have, the friends around me, and my inherent drive to keep going, I am doing pretty well, all things considered. As far as I know, no one is concerned about my mental well-being. So, we'll all just keep plugging along, smiling, laughing, looking towards a creative, rewarding and fulfilling future.

That's about all I've got for today. Remember to ask me any questions you might have.

Good Health to All!

ScottW

Friday, January 4, 2013

Eye-Opening Photo

An Eye-Opening Photo!

My daughter found this photo today and I just had to share it with you so that you understand just why I am in the [bilateral flank] pain that I experience every day.
I saw this and just said, "WOW!"


A good approximation of how my kidneys [likely] appear:




(Like the title states...An Eye-opening photo!)

(**A normal kidney is about the size of your balled up fist.)