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

Another Side of Chronic Illness

There is another side to this whole chronic illness thing that I don't believe I have addressed...how an illness such as this affects your spouse and family.

Yesterday, my wife had a meltdown day; something I quietly let her go through so that she keeps her sanity intact. Why? Because if I don't, her well-being comes into question. Remember, the spouse of any chronic patient no longer shares the duties and responsibilities of the household. The spouse is thrust into the role of caregiver, primary decision-maker, household income provider, and--depending on the type of illness or injury--full time caretaker of the house. Add on single parent, if children are present, as well.

As a chronic illness patient, it is our responsibility to help our spouse as much as we are physically able to do. If that means getting a little tired doing housework, taking care of kids, etc, then that's what we do. If they need to help pay bills, then discuss finances with your spouse, making a mutual decision on all expenditures, and then help with getting the bills paid. You must help your spouse whenever and however you are able.

This also includes patience when your wife or husband has a day or two when they are just worn out and need that rejuvenating mental break. They may get angry with you; they may curse at you; they may tell you that they have no hope that anything will ever change. When this happens, I suggest that you leave them alone--they'll likely demand this--and withhold any judgments or condemnations, allowing your spouse to vent and release that stress that has obviously built up. If you react negatively to this stress release, I guarantee that you will only make things worse.

Look at it this way...

If the roles were reversed and YOU needed to de-stress from all of the added responsibilities, how would you feel if your chronically ill spouse looked at you, shrugged their shoulders and told you to just suck it up. How would you react?

I know that everyone is built and programmed differently. But if we, as patients, ignore the well-being of our spouse, our lives will be negatively impacted in numerous ways. So on the good days, laugh, joke, enjoy each others' company, and share your thoughts and feelings as the opportunity arises. But on the bad days, give your spouse the space, the respect and the understanding they need so that they continue to be of service to you and your household. And if needed, get yourself and your spouse to group support meetings so that both of you can take advantage of any opportunities there, as well.

One thing I do for my wife is basically kick her out the door when she has chances to go do things with our [adult] kids or one of her friends. She needs to get away from the home--and taking care of me--as much as she can. She needs that time to do something normal without worrying about how I'm doing 24/7.

In these times she knows that I can always get a hold of her at any time. We both have cell phones with unlimited texting just in case I need to contact her when she's in a movie (for instance). Having this option helps my wife relax whenever she is away from the house for work, errands or when I kick her out to have some fun.

Lastly, I am of the opinion that while I can't get away from this illness, there is no reason why my wife can't get that much needed time away. Now, I realize that that is a redundant statement, but I am simply trying to hammer home the idea that your spouse needs the chance to have the mental break; so be sure they get it!

23 June 13

Time is flying by! It seems like only a few days ago since my last entry; but then I look at the date--June 12th--and realize I was wrong...

Dialysis Weights:

13 June 13
Starting Weight:  105.2 Kg
Ending Weight:  104.5 Kg
Water Removed:  0.70 Kg

15 June 13
Starting Weight:  105.9 Kg
Ending Weight:  104.2 Kg
Water Removed:  1.70 Kg

18 June 13
Starting Weight:  105.8 Kg
Ending Weight:  104.0 Kg
Water Removed:  1.80 Kg

20 June 13
Starting Weight: 106.0 Kg
Ending Weight:  104.1 Kg
Water Removed:  1.90 Kg

22 June 13
Starting Weight:  106.0 Kg
Ending Weight:  104.4 Kg
Water Removed:  1.60 Kg

My weight has risen nearly a kilogram on my off days, but I think this is due more to my cysts than anything else. My diet and fluid intake remains consistent; but both flanks have had a significant increase in pain again, which means that the cysts on my kidneys are once again enlarged and holding more fluid.

As a result of the flank pain increase, my T3 usage has also increased. Earlier in the month my average daily usage was at 3.1 tablets per day. Because of the increased flank pain, that jumped to 4.33/day. This weekend, the flank pain is worse than I remember it being up to this point. Sitting, standing, laying...it makes no difference. I am hurting pretty well even with the pain med.

One of the dialysis techs who regularly works with me is married to a renal transplant patient. In fact, it was because she had to learn to help him do home hemo that she became a dialysis tech! Anyhow, she is a fountain of information for me. This past Saturday she was telling me that post-transplant meds must be taken at exactly the same times every day, without fail. If for some reason you are sick and cannot keep your meds down, then get into the transplant team immediately so they can put you on IV meds until you feel better. It's those bits of info about my future that are incredibly valuable. Any such things I learn will always be passed on to you.
*Remember, educating yourself about everything that is coming up--no matter where you are in the process--will help you deal with decisions, absorbing incoming information, etc, so that you make the very best care decisions for you, and to help your loved ones understand what is happening with your care plan. The more you know, the easier this becomes from a mental/psychological standpoint! (Which, or course, affects your physical well-being, as well!)

My full labs were taken this past week...again...and everything is looking great! I won't go into the numbers because I save that for the top of the month labs. I just wanted to let you know that I am still as healthy as I can be.

That's all the news I can think of. Enjoy your upcoming week!

Good Health to All!

ScottW

12 June 2013

A few things to discuss today, so let's get going...

We'll start with numbers from dialysis:

04 Jun 13
Starting Weight:  106.2 Kg
Ending Weight:  104.2 Kg
Water Removed:  2.00 Kg

06 Jun 13
Starting Weight:  105.7 Kg
Ending Weight:  104.3 Kg
Water Removed:  1.40 Kg
08 Jun 13
Starting Weight:  105.3 Kg
Ending Weight:  104.1 Kg
Water Removed:  1.20 Kg

11 Jun 13
Starting Weight:  105.4 Kg
Ending Weight:  104.1 Kg
Water Removed:  1.30 Kg

Once again, my daily efforts at liquid consumption control are paying off. My weights are fairly even from treatment to treatment, and my off days are better because my body isn't being subjected to extreme fluid losses during dialysis...for me, a very good thing!

I had my monthly labs drawn last week; here are the results:

*Albumin (21 May):  4.60 g/dL (+0.10 from 16 Apr)
  (How well the body absorbs proteins)

*Hemoglobin (06 Jun): 11.5 g/dL (+0.10 g/dL from 28 May)
  (A Measure of Anemia)

*Ca Corrected (04 Jun): 9.40 mg/dL (-0.10 mg/dL from 07 May)
  (A measure of Heart and Bone health)

*Phosphorous (04 Jun):  4.60 mg/dL (- 0.4 mg/dL from 07 May)
  (High Phosphorous affects the health of your Heart and Bones)

*PTH Intact (21 May):  120 pg/mL   (-79 pg/mL from 16 Apr)
  (A measure of Vitamin D absorption and bone and tissue health)

*K+ (21 May):  4.9 mEq/L (+0.90 mEq/L from 16 Apr)
  (Proper potassium levels keep your nerves and muscles working well)

*spKdt/V Dialysis (04 Jun): 1.51   (-0.09 from 07 May)
  (A measure of the effectiveness of dialysis cleaning the blood)

             = Good Numbers            = Bad Numbers

In spite of all the red numbers, all of my results--aside from the Hemoglobin--are still within the range that is wanted by the dialysis center. In other words, my numbers are great! My hard work with my diet and liquids is paying off.
Anyone on dialysis can do this, too! Just because you may have additional health issues does not mean that you can't have the best possible lab results. Just stick to the diet your nutritionist recommends, drink the reduced fluids your dialysis personnel recommends, and take your meds in the prescribed doses at the prescribed times every day, without fail. Good labs are entirely within your ability to control; so do what you have to!
It really IS that easy!

I've been doing a lot of asking about how to relieve the constant itching around the button-hole canulations sites, and no one really has much of an answer. So, I'll just try to scratch less, and hopefully reduce the skin irritation. I'll keep asking, however.

The last couple of weeks I have been seeming to get tired faster than ever. My housework, though getting done, takes me longer, and I am usually putting things off for a couple of days just because I don't have the energy. Sometimes I can still push through; other times not. No giving up, though! Never!

The headache, not in its 43rd consecutive month, has been up and down in intensity--but mostly up. I have had a few times that had indications that TMD S/S's were involved, so I used my NTI devices and the headache was reduced the next morning; but other than that, it's all about this CKD-related headache. No fun there.

Sleep...When I do get a full night of sleep, I've been having bad dreams again, making my sleep restless at best. Of course, the dreams all revolve around losing control, having no choice, etc. So, once I realize this, I go to sleep the next few nights repeating the conscious phrase, "I control my dreams; they do NOT control me!" This always works, for me! Then, I usually go several weeks before the bad dreams stop cropping up again.

That's all for now. Have an outstanding week, everyone!

Good Health to All!

ScottW

07 June 2013

I had my latest follow-up doctor visit with my Nephrologist yesterday, and I am pleased to report that my lab numbers indicate that I am "the healthiest dialysis patient [they] have at the clinic." In perspective, this is great news. It means that I am nowhere close to feeling like I could be should I have other health issues occurring right now, as well.
So, I'll take that good news!

Not much else to report about the office visit.
My lungs are clear of fluids--Excellent!--
my heart is clear of fluids or arrhythmia's--Outstanding!--
and all in all, I am fairly healthy for someone in End Stage Renal Failure.
Fabulous news!!!

While I was at the doctor's office yesterday, I saw an advert for further patient education about chronic kidney disease. It is an online site called, KidneySchool.org. The info is presented by Fresenius Medical Care, and is offered free of charge. I copied the two-sided brochure for you:

 

 

I've taken a good look at the site and it has some great info. This is especially true for patients who are new to this whole chronic kidney disease routine. So go take a look, do the activities and learn about what you may be going through.
**This info will also be helpful to caregivers, family members, etc.

That's all I have for today. Enjoy your weekend, everyone!

Good Health to All!

ScottW