26 July 2013

I'm finally feeling up to writing a blog entry. It's been a bit rough; but, on I go...

Dialysis Weights:

16 July 13
Starting Weight:  107.2 Kg
Ending Weight:  104.0 Kg
Water Removed:  3.20 Kg

18 Jul 13
Starting Weight:  106.3 kg
Ending Weight:  104.4 Kg
Water Removed:  1.90 Kg

20 Jul 13
Starting Weight:  106.0 Kg
Ending Weight:  104.4 Kg
Water Removed:  1.60 Kg

23 Jul 13
Starting Weight:  106.3 Kg
Ending Weight:  103.9 Kg
Water Removed:  2.40 Kg

25 Jul 13
Starting Weight:  105.3 Kg
Ending Weight:  104.2 Kg
Water Removed:  1.10 Kg

It looks like the consistency I had attained with my top and bottom weights is a thing of the past. I may get there again. More than likely, the inconsistency is just another indicator of decreasing renal function.

My latest labs:

*Albumin (16 Jul):  4.60 g/dL (+.10 g/dL from 18 Jun)
  (A measure of Protein in the blood)

*Hemoglobin (23 Jul):  11.4 g/dL  (-0.30 g/dL from 16 Jul)
  (A Measure of Anemia)

*Ca Corrected (02 Jul): 9.60 mg/dL (+0.20 mg/dL from 04 Jun)
  (A measure of Heart and Bone health)

*Phosphorous (02 Jul):  4.40 mg/dL (- 0.2 mg/dL from 04 Jun)
  (High Phosphorous affects the health of your Heart and Bones)

*PTH Intact (16 Jul):  116 pg/mL   (+10 pg/mL from 16 Jun)
  (A measure of Vitamin D absorption and bone and tissue health)

*K+ (16 Jul):  4.3 mEq/L (-0.20 mEq/L from 16 Jun)
  (Proper potassium levels keep your nerves and muscles working well)

*spKdt/V Dialysis (02 Jul): 1.42   (-0.09 from 04 Jun)

   (A measure of the effectiveness of dialysis cleaning the blood)


             = Good Numbers            = Bad Numbers




 
Most everything looks really good once again. My numbers are holding steady. I inquired with one of the Dialysis Center nurses about the declining effectiveness of the dialysis and what would be done if I hit the minimal percentage. Basically, one of three things could happen. One, I am sent to get a scan of my AV Fistula to see of any narrowing of the venous walls has occurred. If is has, then they will look at expanding the space once again.  Two, I am given a larger dialyzer (filter) to use.  Three, my overall dialyzing time is increased to provide additional filtration of my blood. Assuming I maintain my current spKdt/V percentage, all of that is moot. Time will tell.

As far as my fluid retention (see pre-D weights above), I have actually been drinking less fluids recently, which strengthens my assertion that my renal function has decreased. Though I am still producing a decent urine volume, I am obviously retaining more fluids. This may also be due to cystic growth on the kidneys--but this is only a guess on my part.

Speaking of my kidneys, I am having more pain over both flanks, and sleeping comfortably is a definite issue. Plus, I am now seeing visible tissue extension away from my back over both kidneys. My wife confirmed this, so I'm not simply imagining seeing it. Makes me wonder just how big my kidneys are right now. (hmmmm....)

I have been consulting with my Transplant Coordinator and it looks more and more likely that early to mid-October will be when my kidneys are yanked. I am reaching this conclusion in spite of continued urine production because of ever-increasing pain over and around both kidneys. I have to do another surgical consult first, and will keep you informed of everything.

I've been having a lot of nausea the last couple of weeks. It is still hitting at night, for the most part, but a lot has also been carrying over into the next day, as well. I don't like using the Promethazine (anti-emetic) because of how groggy it makes me feel, but it is better than the alternative of never-ending intense nausea or actual vomiting. Ick! During dialysis I've had to ask for IV Zofran every treatment over the last week. And yesterday, I had to have an injection twice!

My energy level remains very low. I find myself doing less around the house than what I have been getting done. And when I do work, what energy I have is quickly depleted. I still get everything done; it just takes me about twice as long as previously.

And that's about all for today.
I am looking forward to a good weekend, so enjoy yours, too!

Good Health to All!

ScottW

17 July 2013

Another week goes by and there isn't too much to report that is different.

My dialysis weights:

09 Jul 13
Starting Weight:  105.7 Kg
Ending Weight:  104.4 Kg
Water Removed:  1.30 Kg

11 Jul 13
Starting Weight:  106.4 Kg
Ending Weight:  104.0 Kg
Water Removed:  2.40 Kg

13 Jul 13
Starting Weight:  106.9 Kg
Ending Weight:  104.1 Kg
Water Removed:  2.80 Kg

My pre-D weight has stayed up even though I am drinking less. Since I'm still producing urine in a decent volume, I have no idea why I'm retaining so much fluid.

Still been feeling lousy this whole last week. In fact, today is the first day I've felt somewhat decent in a while. My off-day's this past week were anything but, as I was just dragging around the house feeling so bad. I accomplished very little as a result. I did get to a movie on Sunday (Pacific Rim--Awesome!!!), but did so in spite of what was going on in my body. This was not flu, nausea or anything else like it. I was just having one of those times when my kidneys dying just makes me feel like garbage.

At yesterday's dialysis I had what looked like full labs drawn again. I'll get the results posted later this week.
Also during my Tuesday Tx, I continue to have IV Iron injections to try to bolster my RBC production and reduce the Anemia. Unfortunately, the injections have little benefit aside from my numbers not dropping any lower than they already are.

My sleep has again increased. While I'm still getting 9 or so hours a night, I am napping between a little more, and waking with exhaustion. And my dialysis day sleep is totaling between 15-17 hours of sleep in a thirty hour period (that's pre-D, post-D and the nightly sleep).  I'm not fretting about this because I know that the worse my kidneys get, the more tired I'll become.

That's about all I can think of right now, so I'll be going.

Have an outstanding week!

Good Health to All!

ScottW

An Inquiry and My Subsequent Thoughts

Earlier this week I received an inquiry from one of my sisters that I thought I'd share with all of you.

These questions all revolve around how I am doing in my day to day life in my fight with Polycystic Kidney Disease. I believe that I have pretty much talked about all of the questions during the span of my blog, but it's good to get it all into one entry.
I am breaking the questions up into individual sections so I can better address each.
Let's get started...

Knowing that without dialysis you would cease to live..., can you address how dialysis has impacted your life?

Like any dialysis patient would [likely] tell you, I'd rather not be doing this treatment. There are lots of other things I would rather be doing right now. However, that's not the reality of things. 
As my disease progressed, I was feeling worse with every passing week. I had my daily routine at home, making it as productive as it could be, all things considered. Often though, I was nauseated nearly to the point of emesis (vomiting), and could stay like this for hours. I was sleeping 7-9 hours per night, napping 3-5 hours minimum every day, and my appetite was almost non-existent. By the time I started dialysis on 10 July 2012, I was doing very little from day to day, I spent most of my time laying in my recliner, or in bed, and didn't want to do anything. To say I was miserable would be a vast understatement.

In the year since beginning treatment, my body has adjusted to the schedule of the three times per week regimen. My appetite is much better now. I am eating foods that I am now enjoying--and tasting!--and instead of having zero good days every week, I now get between 1-4 good days, depending on how I am feeling on my off-days. And on those off-days, I am generally more productive around the house, I have more energy, and I at least enjoy most things, even if only a little.

I still can't drive (or be driven) much because of meds, but I get to a couple of movies a month, and try to get out to do some photography every few weeks or so. I still can't do much walking, either, as my energy is quickly drained, and I simply lack any physical stamina--due to nearly four years of feeling lousy--to do much outside of the house. 

Overall, I can say unequivocally, that without dialysis, I would still be a miserable heap in my chair or on the bed. No, the treatment isn't ideal by any stretch; but it is far more preferable to the alternative!


Has your quality of life improved, stay the same or worsened? 

My QOL has definitely improved! Just refer to my previous comment. Again, dialysis sucks. But, the time goes by quickly (four hours, for me), and I can usually wake up the next day and be productive around the house. I can also work on my photos, dip into my creative writing, and make plans for my long, successful future.


Were you expecting more benefits from dialysis than what has come to pass?

To be honest, I was quite scared to even start dialysis. I have only ever heard very negative first hand accounts about the treatment--including from my mother. I was incredibly nervous that first day. Luckily, I was given a fantastic dialysis tech that first day who explained everything they were doing. I was put completely at ease about everything. And you know what? My expectations of dialysis turned out to be blown way out of proportion. Again, the treatment sucks; and it makes me feel lousy for an entire day afterwards. But overall, it really is no big deal.

As far as any anticipated benefits, I really had none. Just feeling better was good enough for me.

I have addressed the need for anyone looking at dialysis to educate themselves as to the treatment, what to expect, etc. The more you know, the fewer surprises will happen, and you can have an easier time of things. My doctor often gives me a bad time about how much I research everything I'm going through. At the same time, he praises me for being prepared and taking care of myself mentally. The staff at the dialysis center all have commended me for knowing ahead of time what I should expect with treatments, outcomes, etc.  As a patient, it is within your rights to ask LOTS of questions, to understand everything that is happening no matter where you are in your treatment plan, and to be prepared for any changes along the way.

You are completely in charge of your treatment! All you have to do is follow the prescription regimen that your nephrologist recommends, follow the dietary recommendations from the dialysis dietitian, watch your fluid intake,  and keep your mind in a good place. It's really not hard to do!


Would you ever make the same choice that mom did?

My mom, after batting decades of Multiple Sclerosis, contending against the physical and mental effects of childhood abuse (physical, emotional, sexual), and years of renal failure, decided that with no hope of transplant--she was not a viable candidate due to he numerous health issues--she would remove herself from her dialysis regimen in early 2000, and then endure a slow death as her body shut down completely. She dies on Valentines Day, 2001.
*I didn't get to her funeral because I had had an L5/S1 Spinal Hardware Fusion in late November of 2000, and was forbidden to travel until at least May, or later. My mom understood this, but chose her actions in spite of this.

Anyhow, Would I make the same choice?

Absolutely not! Such a decision is not in my nature. I won't give up. For me, it's not a matter of 'would I,' because I simply don't think that way. It doesn't even enter my mind.
I just won't give up. And honestly, I don't think I would even know how to give up. It's just not me; who I am, or anything else. No. Not a chance.

We all have the inherent ability to rise above any trial that is placed before us. This ability is stronger in some than others, but everyone has it. The body and mind will fight long after we thought we could endure.
In me, this is particularly strong. I just can't give up. It simply won't happen.

And I know what I'm talking about. In my adult life I've had TMD headaches--migraine-like headaches that can last for months at a time--that went uncontrolled for fifteen years, followed by the back injury and subsequent surgery, followed by almost ten years of physical therapy, followed by this kidney disease. In all that time, I have never once thought about giving up. Never considered the alternative to fighting. Never. Again, I just can't give up.


So, there you are. I hope that I have sufficiently answered the questions. That only took me about two hours.  :-S

Good Health to All!

ScottW

08 July 2013

Another week has gone by and tomorrow's dialysis Tx (treatment) marks one year since I began this phase of the PCKD. Here are last weeks' weights:

02 Jul 13
Starting Weight:  106.0 Kg
Ending Weight:  103.8 Kg
Water Removed:  2.20 Kg

04 Jul 13
Starting Weight:  106.0 Kg
Ending Weight:  103.9 Kg
Water Removed:  2.10 Kg

06 Jul 13
Starting Weight:  106.3 Kg
Ending Weight:  104.2 Kg
Water Removed:  2.10 Kg

My weights are remaining consistent, though I don't like being over 106 kg. I am consciously working on drinking less fluids to see if I can better control this.

I had my monthly labs drawn last week, but forgot to post the numbers. So, here they are:

*Albumin (18 Jun):  4.50 g/dL (-0.10 from 21 May)
  (A measure of Protein in the blood)

*Hemoglobin (02 Jul):  12.0 g/dL  (-0.10 g/dL from 25 Jun)
  (A Measure of Anemia)

*Ca Corrected (02 Jul): 9.60 mg/dL (+0.20 mg/dL from 04 Jun)
  (A measure of Heart and Bone health)

*Phosphorous (02 Jul):  4.40 mg/dL (- 0.2 mg/dL from 04 Jun)
  (High Phosphorous affects the health of your Heart and Bones)

*PTH Intact (18 Jun):  106 pg/mL   (-14 pg/mL from 21 May)
  (A measure of Vitamin D absorption and bone and tissue health)

*K+ (18 Jun):  4.5 mEq/L (-0.40 mEq/L from 21 May)
  (Proper potassium levels keep your nerves and muscles working well)

*spKdt/V Dialysis (02 Jul): 1.42   (-0.09 from 04 Jun)
  (A measure of the effectiveness of dialysis cleaning the blood)

             = Good Numbers            = Bad Numbers





For the most part, my labs are outstanding!
The Hemoglobin is always a struggle simply because the kidneys regulate RBC production; and since my kidneys are garbage, well, you can understand this one.
My PTH or Parathyroid Hormone is always low. I am doing what I should be diet-wise, but my body just isn't producing much of this. So, there really isn't much I can do.
The Phosphorous came down again! Awesome news!
My Potassium came down again, which is great!
My big concern in the effectiveness of the dialysis. This is the third drop in a row. Right now, I am just 0.22% away from the low end of the range the dialysis center wants me to be at--1.20%. I don't know that there is anything I can do about this as I have no control over filtering during dialysis.

This last week has been a bad one. I have been feeling really lousy without a break. I had to have an IV injection of Zofran twice last week during treatments to control nausea. Plus, my sleep has suddenly increased again. On average, I am getting 9 hours of solid nightly sleep, plus naps during the days. I am feeling exhausted all the time; and I mean more than usual. In fact, last week I didn't get any housework done, nor did I go anywhere. Just a bad week.

I am now just four months shy of having this PCKD-associated headache for FOUR YEARS. By far, this beats out the longest TMD headache I had by some 38 months. As always, the intensity of the headache goes up and down.

The bilateral flank pain is still going strong. The worst of that pain remains at the lower end of the kidneys.

My appetite is still ok. I've been cheating on potatoes since the 4th of July. I made a delicious Potato Salad that simply had to be used up!  ;o)   I finished it today, so I'll be good once more.

The neuropathy in my feet continues to be lessened. The pain is still absent, and the numbness is reduced, but not gone. I'll not complain, though.

I don't know if it's a result of not feeling well lately, but I've been having an increase of Vertigo the last week or so. I haven't done anything to precipitate it; it just happens. Luckily, I always walk outside the house with my cane, so it has kept me from falling a few times. (A fall would not be good!)

That's all I can remember for today. Have a fantastic week, everyone!

Good Health to All!

ScottW

01 July 2013

A new month is already upon us.

The tenth of this month marks the one year anniversary of my starting dialysis. I can't believe that that much time has passed so quickly! Nearly 144 dialysis treatments done...and it only seems like 130!  ;o)

Speaking of dialysis, here are last weeks' weights:

25 Jun 13
Starting Weight:  105.4 Kg
Ending Weight:  103.9 Kg
Water Removed:  1.50 Kg

27 Jun 13
Starting Weight:  106.0 Kg
Ending Weight:  104.7 Kg
Water Removed:  1.30 Kg

29 Jun 13
Starting Weight:  106.2 Kg
Ending Weight:  103.8 Kg
Water Removed:  2.40 Kg

I don't like the higher weights I've had going into Tx, but with the hot weather we've been having, I shouldn't be surprised that I'm drinking more fluids.

I went to see my Chiropractor last Friday to see if he could solve the neuropathy in my feet and lower legs. Without diabetic complications, he could only postulate the constant swelling and decreased edema that results from the dialysis as an explanation. Nevertheless, he used pneumatics to adjust my lower spine and pelvis--remember, I have titanium on my lower spine so a traditional adjustment is out of the question-- and then again used pneumatics to adjust my C-spine after examining the length of both legs and seeing that my L leg was shorter than my R.
I immediately felt relief from the pain in my feet, and in the days since, the numbness has decreased, as well. Even though the numbness isn't gone, it IS better, and, like I said, the pain of the neuropathy is gone. I'll take those results any day!

The headache marches on...    (enough said about that!)

The bilateral flank pain continues. With the pain apparently coming from the bottom of the kidneys, sitting has become more difficult, as has walking. Once those cysts pop, I should find some relief there.

My appetite is consistent from day to day. Nothing else to say about it, really.

I've been having more nausea lately. Like before, it's mostly hitting me at night. So, I've been getting some really good, long sleep on my off-days [due to using the Promethazine].

I'll have my monthly labs drawn tomorrow morning, and will post the results later this week.

That's all for now.

Happy Independence Day, Everyone!!!

May your Fourth of July celebrations be safe, fun, and filled with Patriotism, and lots of good family or friends company.

Good Health to All!

ScottW