12 September 2016

I know it has been longer than I like between posts, but I wanted to get two appointments finished before I wrote. And a third is happening this afternoon; but with dialysis tomorrow, I really didn't want to wait at least two more days before posting this update. I'll just add on a report about my Transplant Committee Yearly Review (today's appointment) to the end of this one, so if you read this before I add on, please check back to read up on the latest with Transplant!
So, let's get started...

Dialysis Weights:

23 Aug 16

Starting Weight:  102.5 Kg

Ending Weight:  100.2 Kg

Water Removed:  2.30 Kg

Start BP:  185/89     End BP:  123/98

25 Aug 16

Starting Weight:  102.3 Kg

Ending Weight:  100.3 Kg

Water Removed:  2.00 Kg

Start BP:  144/91     End BP:  116/65

27 Aug 16

Starting Weight:  102.2 Kg

Ending Weight:  100.6 Kg

Water Removed:  1.60 Kg

Start BP:  127/84     End BP:  126/73

30 Aug 16

Starting Weight:  103.7 Kg

Ending Weight:  100.3 Kg

Water Removed:  3.40 Kg

Start BP:  164/104     End BP:  114/76

01 Sep 16

Starting Weight:  101.7 Kg

Ending Weight:  100.3 Kg

Water Removed:  1.40 Kg

Start BP:  129/83     End BP:  114/76

03 Sep 16

Starting Weight:  103.1 Kg

Ending Weight:  100.2 Kg

Water Removed:  2.90 Kg

Start BP:  155/101     End BP:  113/72

06 Sep 16

Starting Weight:  103.5 Kg

Ending Weight:  100.2 Kg

Water Removed:  3.30 Kg

Start BP:  164/101     End BP:  102/61

08 Sep 16

Starting Weight:  102.6 Kg

Ending Weight:  100.4 Kg

Water Removed:  2.20 Kg

Start BP:  153/115     End BP:  100/80

10 Sep 16

Starting Weight:  102.9 Kg

Ending Weight:  100.3 Kg

Water Removed:  2.60 Kg

Start BP:  178/102     End BP:  100/70

As you see, my ending BP's are starting to have a problem with being too low. Remember, my Vascular Surgeon needs the end BP to be greater than 110 systolic. This helps the artificial graft to stay open.

*A slightly hypertensive patient has a greater ability of keeping the flow going through an artificial graft.

So, as my ending BP goes down, I get to increase my dry weight which will now go to 100.5 Kg. This probably isn't the last time I will increase my dry weight to accommodate a lowering BP.

September 2016 Labs

*Albumin (16 Aug): 4.10 g/dL     (+0.10 g/dL from 19 Jul)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (09 Sep): 10.50 G/dL    (-0.30 g/dL from 02 Aug)
  (A Measure of Anemia)

*Ca Corrected (09 Sep): 10.0 mg/dL     (+0.20mg/dL from 02 Aug)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (09 Sep):  5.20 mg/dL    (+0.40 mg/dL from 02 Aug)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (16 Aug):  360 pg/mL     (+97 pg/mL 19 Jul)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (06 Sep):  5.4 mEq/L    (+0.20 mEq/L from 02 Aug)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (06 Sep):  1.71     (-0.07 from 02 Aug)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

GREAT September labs! All greens is the best way to go! All my efforts once again pay off with terrific lab results! See....I told you it wasn't that difficult to accomplish!  :o)

Now. my news...

I had my yearly Dental Clearance last Wednesday, and all my efforts in that area are paying off, as well. After another year, my teeth are in great shape with no cavities and zero infections! I also had my teeth cleaned the same day. I should be doing this every six months, but with everything that has happened since last Thanksgiving, I never got to it. At least I had a great reason, and it wasn't because I was just blowing the cleaning off.

Anyhow, I have the Dental Clearance form in-hand and will be taking to my Transplant Coordinator this afternoon.

Also, last Friday I had my latest Eye Exam. Not that I had to do it for transplant again, but just because it has been four years since my last exam (and the initial Transplant Clearance). So, after these four years, my eyesight is still 20/20, with no astigmatism or cataracts. The only thing I need to do for my eyes is update the Rx on my reading glasses for the Ocular Divergence that I have had for decades.

Remember, the Ocular Divergence has nothing at all to do with sight. It is merely the muscles around the eyes not being strong enough to keep the eyes centered. The glasses are slightly prismatic on the sides in order to keep the muscles in the proper position for reading.

*This condition must be diagnosed by an Opthamologist, as an Optometrist won't recognize this muscular issue.

OK, on with everything else...

As far as how I'm feeling since my last post, all I can say is, 'More of the same.' More exhaustion; more sleepiness; more poor appetite, etc. Again, this isn't anything I am or am not doing. This has everything to do with no kidneys, and only so/so dialysis treatments. So/so because of continuing to use the Central Line as the flow is not as good as using the artificial graft.

During Tx (treatment), on the Central Line, the maximum flow I can do is 400. On the graft, it is 450. As I explained before, the higher flow with the graft is able, over the course of a weeks' Tx's, to deliver the equivalent of one additional dialysis session in the same amount of time.

This additional flow means my blood is cleaner by far every week that passes on the graft.

Luckily for me, I began using the graft again 5 sessions ago.

So far, there has been no more leakage. My Vascular Surgeon, whom I saw on 31 August, said (after viewing the latest ultrasound mapping) that the graft has integrated with my arm quite nicely, the flow is fantastic at over 1700+ (the goal is at least 1000) and it seems to be working properly.

As for the leakage, he could not explain it. However, he instructed me to have the venous side venipunctures--the suspected side for the leakage--done more in the middle of the venous side of the graft rather than near the top of the loop distal to the elbow. And,

I have used the instructed venipuncture area for five treatments now, and there is no leakage whatsoever! I must have about one months' worth of successful dialysis sessions before the Vascular Surgeon will even consider removing the Central Line. I'm OK with that! So many problems with my R arm access have led me to being very cautious with anything regarding it. When, or if, it actually gets excised, I will let you know right away!

That's all I have for now. As I stated earlier, I have my Yearly Transplant Committee Review this afternoon. This years' review is the briefer one, which means no cardiac or other testing, and the review should only take about an hour. Also, I will add on the report about my review at the end of this blog.

Until then...

Good Health to All!

ScottW

14 Sept 2016

Some great news!

During my yearly transplant committee review on Monday afternoon, all the various committee members (Financial, Dietician, Nephrology, Social and Coordinator) were extremely pleased with how I am doing, and especially my 100% compliance on every area they look at. I have even offered my assistance to the committee as a guest speaker for the new patient orientations.

As with my initial visit, I would offer tips for meeting compliance, encourage the patients with helpful thoughts, answer questions, etc. I am offering this because the person I had to listen to was probably the worst possible patient you could want as he droned on endlessly about his sad life story and what got him to needing a transplant. There was no insight, no help; I just left with nothing gained and more questions.

So, I figure that after my experience and getting things right, that I could pass on the knowledge of what was helpful, how to move forward, how to think, etc.

Now, the news...

In meeting with me, my coordinator informed me that as of early June (of this year), I was at #11 for my blood type. That's a full 24 spots higher than April, which means I am likely in the mid single digits right now! If all goes as anticipated, I should have my transplant by the end of the year, or shortly thereafter! Woo-Hoo!  :o)

There are, of course, no guarantees on that timeline, but the committee does not foresee any further bumps downward on the list as the shakeout from the UNOS rules changes (in Dec. 2014) has finished, and wait times should now be more accurate.

About the only thing holding up any delay would be a lack of donor or cadaveric organs, and with the Holidays approaching, it is a grim reality that a large number of cadaveric organ donations will become available over the next three months.

While sad for those who lose a loved one, the gift of life gives happiness to many others who benefit the tragedy.

So, in any thoughts or prayers for me, please remember those whose life is lost so that I might regain mine. Also remember the families who are impacted and seek for their comfort, as well.