22 May 2015--Post and Great News!

Finally!
I am starting to feel better on a daily basis! That months long endurance run of constant nausea, minimal appetite, lethargy, occasional vomiting and diarrhea looks to be in its waning days. WHEW! (It's about time!...and all because of a probiotic...I'll get to that later, along with great news...)

Dialysis Weights (& Beginning and Ending BP's, too!):

14 Apr 15
Starting Weight: 98.5 Kg 
Ending Weight:  95.0 Kg
Water Removed:  3.50 KG

Start BP:  00/00  End BP:  00/00

16 Apr 15
Starting Weight: 98.4 Kg 
Ending Weight:  94.6 Kg
Water Removed:  3.80 Kg

Start BP:  00/00  End BP:  00/00

18 Apr 15
Starting Weight:  96.9 Kg
Ending Weight:  94.6 Kg
Water Removed:  2.30 Kg

Start BP:  00/00  End BP:  00/00

21 Apr 15
Starting Weight:  99.3 Kg
Ending Weight:  95.8 Kg
Water Removed:  3.50 Kg

Start BP:  00/00  End BP:  00/00

23 Apr 15
Starting Weight:  98.7 Kg
Ending Weight:  94.9 Kg
Water Removed:  3.80 Kg

Start BP:  00/00  End BP:  00/00

25 Apr 15
Starting Weight:  97.7 Kg
Ending Weight:  94.8 Kg
Water Removed:  2.90 Kg

Start BP:  00/00  End BP:  00/00

28 Apr 15
Starting Weight:  99.1 Kg
Ending Weight:  94.4 Kg
Water Removed:  4.30 Kg

Start BP:  00/00  End BP:  00/00

30 Apr 15
Starting Weight:  96.9 Kg
Ending Weight:  94.4 Kg
Water Removed:  2.50 Kg

Start BP:  170/98  End BP:  135/89

02 May 15
Starting Weight:  96.4 Kg
Ending Weight:  94.4 Kg
Water Removed:  2.00 Kg

Start BP:  166/115  End BP:  149/95

04 May 15
Starting Weight:  97.5 Kg
Ending Weight:  94.3 Kg
Water Removed:  3.20 Kg

Start BP:  186/121  End BP:  165/104

07 May 15
Starting Weight:  98.7 Kg
Ending Weight:  94.9 Kg
Water Removed:  3.80 Kg

Start BP:  190/113  End BP:  139/85

09 May 15
Starting Weight:  97.6 Kg
Ending Weight:  94.1 Kg
Water Removed:  3.50 Kg

Start BP:  186/118  End BP:  136/89

12 May 15
Starting Weight:  98.2 Kg
Ending Weight:  94.3 Kg
Water Removed:  3.90 Kg

Start BP:  184/119  End BP:  134/82

14 May 15
Starting Weight:  96.7 Kg
Ending Weight:  94.2 Kg
Water Removed:  2.50 Kg

Start BP:  190/117  End BP:  154/85

16 May 15
Starting Weight:  97.4 Kg
Ending Weight:  94.3 Kg
Water Removed:  3.10 Kg

Start BP:  192/115  End BP:  140/72

19 May 15
Starting Weight:  96.3 Kg
Ending Weight:  94.2 Kg
Water Removed:  2.10 Kg

Start BP:  182/108  End BP:  137/72

21 May 15
Starting Weight:  96.4 Kg
Ending Weight:  94.3 Kg
Water Removed:  2.10 Kg

Start BP:  182/110  End BP:  167/87

As you can see with these numbers, my weight is stabilizing...finally. Plus, I am dropping my dry weight once more; targeting 94.20 Kg's. So long as I have water weight to lose, I'll continue going down. And, so long as I have cramping, the downward progress will be slow and deliberate.
I also decided to include my pre and post Blood Pressures (BP's) simply because I want to illustrate how dialysis affects  patient BP's. My nephrologist isn't worried in the least where my pre-BP is; he just wants the post-BP reading to be less than 140/95. Until I have a kidney, my BP's won't be great, but we need to try to keep them down as much as possible. (Remember, the kidneys control BP, and since I have no kidneys, I have little real control over my BP, aside from dialysis and a BP med.)


May 2015 Lab Work:

 *Albumin (19 May): 4.50 g/dL     (+0.20 g/dL from 17 Mar)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (19 May): 11.40 G/dL    (+0.60 G/dL from 21 Apr)
  (A Measure of Anemia)

*Ca Corrected (04 May): 9.80 mg/dL     (+0.30 mg/dL from 07 Apr)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (04 May):  2.90 mg/dL    (-1.30 mg/dL from 07 Apr)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (19 May):  312 pg/mL     (+79 pg/mL from 17 Mar)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (19 May):  5.3 mEq/L    (+0.40 mEq/L from 07 Apr)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (04 May):  1.70     (No Change from 07 Apr)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

GREAT looking numbers!  Though, technically, my Phosphorous is actually too low, I'm sure it will be rebounding in short order. The large drop is likely due to my poor food intake last month. With my appetite slowly building up, there's just no way I can maintain a low phosphorous number...nor should I be as doing so could cause problems with the heart and bones--just as if the number was too high.
My PTH (Parathyroid Hormone) level is at the highest level it has ever been. This is a VERY good thing as this helps assure the health of bone and tissue through the absorption of Vitamin D.
So, outstanding numbers all around. At this stage of things, they are certainly worth celebrating!

The incidences of diarrhea have decrease once more. In the past month, I've had a total of two episodes. That is excellent news for me!

As far as my appetite, I have already alluded to the fact it is slowly improving. What I haven't mentioned is that my food staple right now is...ice cream. It's the only thing that has been sounding good, is fairly nutritious, and puts at least something into my body. My flavor of preference...Tin Roof. With my phosphorous number where it is, I'm in no danger of ramping that up too much. As far as the sugar and calories...again, at least I'm getting something into my body. Plus, the post-D meals continue to be normal; so between the two, my body is getting the proper nutrition.
I don't recommend an ice cream diet to anyone. I am merely relating what has been working for me.

The burning feet syndrome thing is going strong. So long as I don't let it get out of hand [by failing to soak my feet in an ice bath], it is tolerable on a day to day basis, and doesn't interrupt my sleep.

(Back to the whole appetite thing)
In my last entry I noted that I was going to switch back to the original probiotic I had taken previous to my going through that long, nasty period of feeling horrible. Well, after more than one month on the InSync brand of probiotic, I am having extremely positive signs of feeling far better. My nausea is almost gone, my bowels movements are near normal, and my use of anti-emetics has dropped to almost zero. (What a difference!)
As I stated at the beginning of this blog, everything is improving as it relates to my appetite, my strength, lethargy, etc. When I compare the different probiotics, the one I abandoned has only a single strain of probiotics, whereas the InSync has six strains, and for me, is vastly more effective. The only reason I started using another brand was because the InSync is harder to find. Now that I know I can buy it online, that will never be an issue again.

As my body has settled back to a normal rhythm, my sleep has also been getting better, with more quality hours, fewer naps and less overall resulting exhaustion. When I sleep at a stretch, I am getting eight or so hours. On dialysis day, my sleep is averaging about fourteen total hours (before, during and post). Also, in spite of sleeping so much, I am still getting sleepy late night, and am not staying up all night...a strange, but good thing.

Now, on to my GREAT news...

I had a meeting last Friday (15 May) with my Transplant Coordinator so, as I had stated last entry, I could get updated on the UNOS rules and regulations, and feel out the general feeling amongst transplant staff on how things are going now that it's been over six months since the enaction of the new guidelines.
Here is what I was unexpectedly told...

*I have (as of 15 May) 1035 days on the Active Transplant List. (This is now back-dated to my start on dialysis, which was Tuesday 10 July 2012.

*My current EPTS Score is 29 (up from 26--a reflection of my age and time on dialysis). Still an outstandingly low score for someone my age!

*There are two transplant lists that UNOS uses in Utah. One is the University of Utah, the other is Intermountain Medical Center (mine!). As of Friday of the previous week, I was #11 on one list (IMC), and #15 on the other (U of U).
I was told that, assuming the number of transplants per month remains consistent, I could have my transplant likely by the end of the summer...end of the year at the latest!
It's getting so close!!! (This news was quite unexpected, but VERY welcome!)

--additionally--

*I need to get another dental clearance, which I will do in June.

*When I get the call as a Back-up, I am to notify the nurse when my last dialysis session was, state any illness (cold, flu, etc), then await another call either telling me I am still waiting, or, the primary transplant patient was unavailable, not a match, etc, and to come in immediately.

*When I get my call for transplant, again, state last dialysis, any illness, the proceed ASAP to the IMC campus (in Murray, UT), and where to go from there. Once there, I am to immediately inform the staff that I am there for a transplant, and I will get in right away. Blood will be drawn, tests conducted, and then off to transplant.

*I also learned that post-transplant, any time I see a doctor other than my nephrologist, I must state to them that they will make absolutely no medical decisions without first speaking to my nephrologist...day or night. This especially pertains to new meds, as side effects and basic chemistry can counteract the immunosuppressants I will be on for the rest of my life.

So, there you go...my GREAT news I promised. As I was fully expecting to hear my wait time as being another two plus years, the news of my position on the list was quite surprising; but very welcomed. To think that all of this is nearing its end is absolutely wonderful!

What a terrific way to end this entry!

Good Health to All!

ScottW