21 August 2016

More than two weeks have gone by since my last entry, so lets get going...

Dialysis Weights:

06 Aug 16

Starting Weight:  101.6 Kg

Ending Weight:  66.7 Kg

Water Removed:  1.90 Kg

Start BP:  155/87     End BP:  126/108

09 Aug 16

Starting Weight:  102.1 Kg

Ending Weight:  100.0 Kg

Water Removed:  2.10 Kg

Start BP:  159/101     End BP:  161/109

11 Aug 16

Starting Weight:  102.3 Kg

Ending Weight:  100.0 Kg

Water Removed:  2.30 Kg

Start BP:  138/87     End BP:  156/104

13 Aug 16

Starting Weight:  102.9 Kg

Ending Weight:  100.2 Kg

Water Removed:  2.70 Kg

Start BP:  141/81     End BP:  124/103

16 Aug 16

Starting Weight:  102.9 Kg

Ending Weight:  100.3 Kg

Water Removed:  2.60 Kg

Start BP:  153/91     End BP:  100/71

18 Aug 16

Starting Weight:  102.1 Kg

Ending Weight:  100.1 Kg

Water Removed:  2.00 Kg

Start BP:  146/89     End BP:  114/83

20 Aug 16

Starting Weight:  103.1 Kg

Ending Weight:  99.8 Kg

Water Removed:  3.30 Kg

Start BP:  155/97     End BP:  113/86

While my weights have all been in line, the BP readings have been all over the place. The entry readings are OK, but the exit readings range from great to bad; especially looking at the Diastolic reading (the second of the two). Some are great, while others are not good at all. I don't really know what I can do to rectify this, aside from everything I am doing right now.

Just another ten days until I call my Transplant Coordinator and place myself back on the Active List. It's been odd not having to be on guard 24/7 with my phone this month. Relaxing, but odd. Soon enough I will have my phone with me 24/7 once again. Hopefully, I get my call soon. I am no longer hoping for any time frame. I've been disappointed too many times since the new UNOS rules went into effect. From now on my attitude about receiving my call is, 'I'll believe it when I get it.' This leads to much less anticipation and disappointment.

In the meantime, I will continue keeping my mind in a good place, challenging myself mentally with games of logic, strategy and timing (this keeps my brain sharp), and do everything I must in order to be as healthy as possible going into the transplant. Doing both will help to ensure as successful a post-transplant outcome as can be expected--aside from organ rejection from extraneous reasons completely out of my control.

I continue to sleep more than usual. Over the past week or more, my average sleep around each dialysis treatment (Tx) has ranged from 18-22 hours. That is up significantly from 13-17 hours. It is what it is, and I work hard to prevent frustration from creeping up on me due to the sheer number of hours I am now sleeping. After all, excessive sleep is why I received my disability judgement, so why be upset that I am doing a great job at earning my monthly payment?

Along with the sleeping increase, I am also napping more each day; anywhere from 15-45 minutes several times each day. Like I said, it is what it is. No frustrations.

My appetite continues to be poor. Even my once per day decent meal has become 'once per day so-so' meal. Finding palpable foods is becoming more difficult as even the slightest off-putting factor is increasingly making foods unappetizing. Oh, for the transplant and pretty much every food looking great once again! I'll get there...

I don't remember if I mentioned, but due to the latest leakage in my arm during dialysis [from the graft], during an appointment in which I was going to have the chest tube removed [at the end of the month], I am now going to have the graft mapped to assure it is working properly, and discuss with my vascular surgeon how to prevent leaks from the graft, and whether or not eliminating heparin from the dialysis Tx will lead to the graft clotting off due to my high blood clotting factor. I will definitely let you know on that. In the meantime, I will continue to use the chest catheter exclusively...again...

That's about all I have for today. I will wait until that appointment with my vascular surgeon until I make my next entry. That will be on the 31st of the month, so be looking for a new entry after that.

Until then...

Good Health to All!

ScottW

05 August 2016

My latest labs came back already, so let's get into them...

August 2016 Labs:

*Albumin (19 Jul): 4.00 g/dL     (-0.20 g/dL from 21 Jun)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (02 Aug): 10.80 G/dL    (-0.40 g/dL from 05 Jul)
  (A Measure of Anemia)

*Ca Corrected (02 Aug): 9.80 mg/dL     (-0.50mg/dL from 05 Jul)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (02 Aug):  4.80 mg/dL    (-1.00 mg/dL from 05 Jul)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (19 Jul):  263 pg/mL     (+42 pg/mL 21 Jun)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (02 Aug):  5.2 mEq/L    (+0.60 mEq/L from 05 Jul)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (02 Aug):  1.64     (-0.04 from 05 Jul)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

Albumin is the only number with a Red. That means I have been working on, and doing, everything I should be. Diet, fluids, etc.

Once again, following the guidance and recommendations of your physicians, nurses, techs, etc is NOT difficult to do! You simply have to choose to follow their instructions. Do that and you will be healthier, happier and everything will not seem like such a terrible burden. That's never to say that dialysis won't suck...it always will!...but you will be able to hold off complications that would otherwise pop up simply because you refuse to properly take care of yourself. Plus, your mind will be in a much better place, as well!

Remember also, that your Potassium (K+) numbers will go up and down, no matter how compliant you are to the renal diet. All you do is control the intake of K+ rich foods, and avoid becoming frustrated when the labs come back higher than the established range. When that happens--and it will!--just assure that you are avoiding tomatoes, potatoes, certain juices, etc. Having these once in a while is OK...but when you need to get your labs back in line, you already know what to do!

Dialysis Weights:

*For some reason I still don't understand, there is a two week gap in where I record my weights each dialysis session. So, don't be thrown by the gap...

12 Jul 16

Starting Weight: 104.7 Kg 

Ending Weight:  101.3 Kg

Water Removed:  3.40 Kg

Start BP:   210/94  End BP:  120/82

14 Jul 16

Starting Weight:  103.5 Kg

Ending Weight:  100.2 Kg

Water Removed:  3.20 Kg

Start BP:   187/112  End BP:  113/85

28 Jul 16

Starting Weight:  102.2 Kg

Ending Weight:  99.7 Kg

Water Removed:  2.50 Kg

Start BP:   176/94  End BP:  99/55

30 Jul 16

Starting Weight:  102.1 Kg

Ending Weight:  99.7 Kg

Water Removed:  2.40 Kg

Start BP:   159/99  End BP:  101/71

02 Aug 16

Starting Weight:  103.9 Kg

Ending Weight:  100.7 kg

Water Removed:  3.20 Kg

Start BP:   176/106  End BP:  123/61

04 Aug 16

Starting Weight:  102.7 Kg

Ending Weight:  99.9 Kg

Water Removed:  2.80 kg

Start BP:   159/96  End BP:  105/68

And that brings you up to speed. My weights have been good, and when a Tuesday weight is high, I take until Saturday to get it back to where it should be. This is on purpose so that I avoid excessive cramping, and a possible drop in BP that would leave my artificial graft closed and unusable. As it is, I may push my dry weight up half a kilogram because the longer I am at the 99.5 Kg weight, the more the ending BP is lower than I want (110+ systolic minimum).

As far as my sleep goes, I am getting LOTS! Yesterday, I had 5 hours pre-dialysis, slept one hour during treatment, went home and slept 9 hours, then fell asleep again during the night for 6 more; bringing the sleep to 21 total hours! That's a new record for me. Without my kidneys, it seems that the longer I go, the more sleep I'm getting. I have no idea if anyone else experiences this or not; I'm just talking about what I am going through.

And that is all I have for today. I am trying to be cognizant of the passage of time, and have been doing a good job with my recent posts. Let's hope this continues

Have a fantastic week, everyone!

Good Health to All!

ScottW

**Oh, By The Way: I placed myself on Voluntary Hold on the Transplant List for the month of August. I did this because August is one of three times every year that my wife is horridly busy at her work, and there is no one that could just step in and do her job in the event I get my transplant call. So, I did what had to be done so that she avoids that happening.
YES, I will still accumulate time on the list; I just won't be receiving a call at any time during August.
On September 1st I will call my coordinator and reinstate myself to the Active List.  sw