31 July 2016

Tired, tired, tired.

That pretty much sums up the past week.

My Tuesday pre and post dialysis sleep totaled twenty hours (!). On Thursday, it came up to seventeen. Yesterday (Saturday), another sixteen total hours of sleep. And between any times that I am asleep, I am feeling exhausted, sleepy, etc.

I know that a low Albumin count can contribute to excessive tiredness, but my Albumin is, although on the low end of the scale, is just fine. This may have more to do with my poor appetite lately than anything else.

The good news in this is that I am beginning to eat a bit more. While I am still only getting one good meal a day, I have actually been finishing my post-D lunches both Thursday and Saturday, and I am snacking more, as well. Hopefully, this will turn into a growing trend, because I definitely need to be eating more.

On an aside, I have been copying all of my blog posts and have been reading everything I've been going through the past nearly seven years--I can't believe it's been that long! Anyhow, after reading one particular years' worth of posts, I thought I'd mention/update a few things I haven't talked about in some time.

1) Yes, I am still using a cane anytime I am outside of the house. I continue to have issues with vertigo (minor), and still lose my balance at random times. Plus, whenever I grow tired, the cane keeps me on my feet. It has been an invaluable tool for me. When I'm again strong enough, not using the cane will be weird.

2) My eyes continue to fluctuate between good and poor vision. When it is poor, reading is difficult due to blurriness. At those times, my glasses really come in handy. Thank goodness I have those to help. I mentioned a few posts ago that I need to see the Ophthalmologist, which will be coming up.

3) Since abandoning the Minoxidil, it took about two plus years for the whole out of control hair growth to calm down. Not needing the extra hair really set my body on its ear! At least now I don't have hair growing all over the tops of my feet...or at random places in my ears...or on the knuckles of my hands...etc. And there are no more two or three inch hairs growing on my legs, or arms. (Thank Goodness!)  :o)

4) One of the stranger side effects from previous meds I am no longer having was random areas on my head that would see the skin dry out and flake off with just a slight rub, along with seeming uncontrolled dandruff. This would happen on my chin, my jaw line, my ears and sometimes behind the ears. The change away from this side effect is quite welcomed, and never missed.

.......

I had something happen at my dialysis clinic last week that made me remember just how important it is for any patient to be aware of, and take care of themselves and their healthcare. Ever since I had my kidneys removed nearly three years ago I have been using the anti-emetic Zofran on a regular basis. No other ant-emetic that I've tried does what Zofran does. Anyhow, at dialysis I usually get a dose when I start and stop treatment. All the usual nurses at the clinic know this by now.

About a week ago, a substitute nurse--who is terrible to begin with--was working the clinic. At the end of my session I asked for Zofran, and she came in and promptly stated, "I have your Benadryl." My immediate reply was, "That had better NOT be Benadryl! Because if it is, I'll sleep for hours, and my wife will be pretty mad!"  She replied, "No, I'm pretty sure it is." "Are you sure?" to which she replied, "Yeah, I think so."

My final reply was, "Alright...we'll see."

Luckily, it was Zofran.

I knowingly allowed her to proceed for two reasons...1) Aside from a very long sleep, the side effects would be minimal. 2) Part of me wanted to watch this terrible nurse screw up so that she would no longer work at the clinic if she was wrong.

My point is this...

That nurse should have checked the med to verify exactly what it was. She was completely irresponsible for not going back to the nurses station and checking for herself.

Your healthcare is entirely in YOUR hands! Educate yourself about every facet of everything you are going through...Meds, Treatments, Procedures, etc.

   -Ask questions about anything you don't fully understand.

   -Get online and research things you've discussed with your physicians.

   -Know the side effects of any meds you are prescribed.

   -If you are uncomfortable with anything, take control and ask questions, understand     procedures, ask surgeons to clarify anything you don't comprehend prior to surgeries.

   -Educate, Educate, Educate!

Only YOU can know what is best for you! If you have any concerns, fully discuss them with your doctors. Nervousness is one thing going into any procedure or treatment...Fear is quite another. Ask as many questions as you want.

The more you know, the easier everything becomes when dealing with long-term health issues.  (THAT is absolute truth!)

Anyhow, that's all I have for today. May each of you have a successful, wonderful week ahead! Continue to do and be your very best every single day!

Good Health to All!

ScottW

25 July 2016

Just a quick note today...

Due to the rather poor labs that were drawn earlier this month, the [dialysis]  clinic Dietitian had all my labs redrawn to verify the numbers. While I won't do the comparative illustration again, I will give the labs and a +/- number.

*Albumin 4.00 (-0.20)

*Hemoglobin 10.50 (-0.70)

*Calcium Corrected 10.3 (No Change)

*Phosphorous 4.00 (-1.80)

*PTH Intact 263 (+44)

*Potassium 5.30 (-0.50)

*spKdt/V 1.67 (No Change)

The only lab value that is now +/- accepted range continues to be the Calcium Corrected. However, that value is over the top end of the range by just 0.10, which is minimal. The dietitian has ordered a lessened Vitamin D injection during my dialysis Tx's. This should help lower that lab value.

Overall, I've been getting a break from my headaches since my last post. I've had a few days that found minimal or no headaches at all for most of the day. Even this past Tuesday--usually my worst headache day, due to the large post-weekend draw at dialysis--the worst of my headache was immediately following dialysis. After waking from my post-D sleep, the headache was greatly reduced...something I will never complain about!

My sleeping hours average and my daily food intake are unchanged from two weeks ago.  Going along with both, my energy level continues to be lower, as well.

I've been having an uptick in nausea again. However, with as poor as my appetite has been, this really comes as no surprise. The best I can do at this point is to try and manage the nausea through snacking/eating and using Zofran, Tums, etc as needed.

Those are the highlights of this update. Again, just a quick note today as I am not feeling well, at all. Noting specific; it's just one of those day that I just feel sick.

Until next time...

Good Health to All!

ScottW

11 July 2016

A new--and unexpected--development with my Artificial Graft. I'll get to that in a bit...

Dialysis Weights:

23 Jun 16

Starting Weight:  103.4 kg

Ending Weight:  99.9 Kg

Water Removed:  3.50 Kg

Start BP:  196/121   End BP:  138/83

25 Jun 16

Starting Weight:  102.8 Kg

Ending Weight:  99.3 Kg

Water Removed:  3.50 Kg

Start BP:  187/117   End BP:  122/84

28 Jun 16

Starting Weight:  104.2 Kg

Ending Weight:  100.3 Kg

Water Removed:  3.90 Kg

Start BP:  173/102   End BP:  136/89

30 Jun 16

Starting Weight:  103.0 Kg

Ending Weight:  99.6 Kg

Water Removed:  3.40 Kg

Start BP:  167/105   End BP:  102/70

02 Jul 16

Starting Weight:  102.2 Kg

Ending Weight:  99.2 Kg

Water Removed:  3.00 Kg

Start BP:  160/109   End BP:  123/86

05 Jul 16

Starting Weight:  103.5 Kg

Ending Weight:  100.1 Kg

Water Removed:  3.40 Kg

Start BP:  195/109   End BP:  143/82

07 Jul 16

Starting Weight:  102.0 Kg

Ending Weight:  99.2 Kg

Water Removed:  2.80 Kg

Start BP:  179/107   End BP:  122/75

09 Jul 16

Starting Weight:  101.8 Kg

Ending Weight:  99.7 Kg

Water Removed:  2.10 Kg

Start BP:  164/106   End BP:  110/84

For the most part, my BP's have looked pretty good. That spike of the elevated starting BP's was a mystery. I wasn't doing anything to precipitate the increase--i.e. extra fluid gain--so I have no idea why that jump happened. As it is unusual, I will note any further high starting BP's and discuss it with my Nephrologist.

I crashed once at the very end of treatment on Tuesday, 05 July. My weight loss was normal, as was my Tx. Why I crashed is a total mystery. I stood up to get my final post-D BP reading and began to almost instantly feel dizzy, nauseated, have cold, clammy skin and feel as if I would pass out--all classic S/S's of a crash.

I immediately laid down, called for a nurse and was infused with half a liter of NS (Normal Saline). This eradicated all the symptomology of the crash and within ten minutes I was up and moving around again. As it ended up, I was the 0.50 Kg over my goal (of 99.5 Kg), the same amount I was infused with following my little crash event.

The only factor different that might have contributed to the crash was the fact that I started using my new Artificial Graft that day. However, the treatment was normal and quiet; so just why I crashed is again, unknown.

July 2016 Labs: 

*Albumin (21 Jun): 4.20 g/dL     (+0.40 from 17 May)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (05 Jul): 11.2 G/dL    (+1.20 from 21 Jun)
  (A Measure of Anemia)

*Ca Corrected (05 Jul): 10.3 mg/dL     (+0.40mg/dL from 07 Jun)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (05 Jul):  5.80 mg/dL    (+1.40 mg/dL from 07 Jun)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (21 Jun):  219 pg/mL     (-03pg/mL 17 May)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (05 Jul):  5.8 mEq/L    (+0.10 mEq/L from 21 Jun)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (05 Jul):  1.67     (-0.12 from 07 Jun)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

As seen in the numbers above, my labs are not especially good this month. Since I am very good at doing what I should with my renal diet, I do not know why my labs look this bad. As always, I am especially careful with my potassium intake, and with taking my Renvela--the Phosphorous binder. As I've discussed many times previously, the K+ (potassium) will jump around no matter what I do; and, I am always cognizant of my phosphorous intake. Why that one is off is a unknown. The real mystery though is the Calcium Corrected. I have zero clue as to why that is elevated. Hopefully, July will see a reduction in my labs where needed.

Now, the news about my Artificial Graft. I already told you I have begun using the graft this past week (on 05 July). On Saturday, sometime during my dialysis session, I began to have leakage into my arm. I do not know if this was from the needle insertion or maybe a slight infiltration from when the graft was canulated at the start of treatment. However, I DO know that the leakage came from the venous return end of the graft. As a result, I have bruising in my arm that looks like I had a needle infiltration of my old fistula.

Here's a picture taken just now:

     (ScottW's arm contusions following graft leakage on 09 July 2016.) Taken 11 Jul 16.

The contusions (bruising) goes from the base of my thumb to about four inches above my elbow, covering about 2/3's of the arm in that area. Most of it isn't too bad as far as pain. The worst of it is that the arm is purple. Ah well, it's happened before, and will likely happen again.
Luckily, the chest catheter is still emplaced, so I will be using that once again until the arm heals enough.
You may be asking why I didn't know the leakage was happening. That is very simple to answer... I simply had no idea. There was no bump like with a fistula infiltration, no obvious signs at first, and not even any real signs until very late in treatment because I had fallen asleep about two and a half hours into the session, and when I awoke, I noticed my arm felt tight, was moderately painful to move, and only a little bruising was evident. As soon as I saw the bruising I informed my tech. Unfortunately, I awoke just minutes before the end of my dialysis. If I had awoken sooner, the impact of the leakage may have been less, but probably not by much.

Let's see, what else...

My appetite hasn't improved much since my last entry. I am barely eating one decent meal per day, and generally snacking only the rest of the day. Everything is just looking unappetizing. I don't know why; it just is. Even my post-D lunches are not being finished; which is a rarity.

Naturally following a poor appetite, my energy is also decreased--No mystery on this one! However, I will generally push through the lack of energy if I need to. And going hand in hand with these is an increase in sleep. The last couple of weeks I haven't been napping much, but my sleep has been increasing. Last Tuesday, my pre and post-D sleep totaled twenty hours...no kidding. I can't complain about the sleeping. After all, it was because of lots of sleeping that I received my disability judgment in the first place. I just look at it as earning my paycheck!  :o)

The headaches continue. LOTS of TMD involvement, too. How do I know? Because my R jaw is clunking... a lot. This is a major indicator of TMD induced headaches; and has been for going on 31 years.

I think that's about everything for today. If not, I will always add anything on the end of this entry.

...yep...that's it...for now. :o)

Good Health to All!

ScottW