Transplant Living Newsletter

I received the following newsletter from Transplant Living, a service provided by UNOS (United Network of Organ Sharing). There is lots of great information on the new UNOS allocation rules, as well as on the immunosuppressant drugs prescribed post-transplant. Please take the time to read through the links on this newsletter. The information really IS invaluable!

Thanks!

November 2014
	Questions and answers about kidney allocation > Read more about the new system and what it will mean for people needing a kidney transplant. Support UNOS and help us say thank to organ donors for their selfless gift of life > UNOS is America's organ transplant headquarters. Every day of the year, we match precious donated organs to patients who need them, so that life-saving transplants can occur across the country. Our work would not be possible without supporters like you. OPTN/UNOS Board approves policies on living donor evaluation and consent, donor disease risk assessment > The policies specifically address living donation for kidney transplantation as well as segmental liver, lung, intestine and/or pancreas transplantation. Post transplant medications > After transplants, the focus for paitnes transitions from waiting for a donor organ to learning how to manage medications and their side effects.		Liver Transplant Support Group Tampa, FL December 5, 2014 11:00 a.m.

09 November 2014

It's been far too long since my last entry, so let's get to it...

Lab Results:

*Albumin (21 Oct): 4.20 g/dL     (NO Change from 16 Sep)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (04 Nov): 10.30 G/dL    (-0.50 G/dL from 07 Oct)
  (A Measure of Anemia)

*Ca Corrected (04 Nov): 9.50 mg/dL     (-0.10 mg/dL from 07 Oct)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (04 Nov:  5.60 mg/dL    (+1.30 mg/dL from 07 Oct)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (21 Oct):  185 pg/mL     (-0.44 pg/mL from 16 Sept)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (04 Nov):  6.0 mEq/L    (+0.60 mEq/L from 07 Oct)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (04 Nov):  1.61     (NO Change from 07 Oct)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher
Unlike last month's glowing numbers, you can clearly see some rises in the important results like Phosphorous and Potassium. These jumps were not due to anything I have done. I have been really good about sticking to my diet restrictions. As to why these numbers jumped...I have no idea.

Dialysis Weights:

16 Oct 14
Starting Weight:   99.6 Kg
Ending Weight:   96.3 Kg
Water Removed:   3.30 Kg

18 Oct 14
Starting Weight:   98.7 Kg
Ending Weight:   96.5 Kg
Water Removed:   2.20 Kg

21 Oct 14
Starting Weight:   100.3 Kg
Ending Weight:   96.7 Kg
Water Removed:   3.60 Kg

23 Oct 14
Starting Weight:   99.5 Kg
Ending Weight:   96.0 Kg
Water Removed:   3.50 Kg

25 Oct 14
Starting Weight:   99.0 Kg
Ending Weight:   95.8 Kg
Water Removed:   3.20 Kg

28 Oct 14
Starting Weight:   100.7 Kg
Ending Weight:   97.2 Kg
Water Removed:   3.50 Kg

30 Oct 14
Starting Weight:   100.2 Kg
Ending Weight:   96.4 Kg
Water Removed:   3.80 Kg

01 NovStarting Weight:   99.2 Kg
Ending Weight:   96.2 Kg
Water Removed:   3.00 Kg

04 Nov 14
Starting Weight:   99.5 Kg
Ending Weight:   96.1 Kg
Water Removed:   3.40 Kg

06 Nov 14
Starting Weight:   98.7 Kg
Ending Weight:   96.3 Kg
Water Removed:   2.40 Kg

08 Nov 14
Starting Weight:   98.7 Kg
Ending Weight:   96.1 Kg
Water Removed:   2.60 Kg

Aside from 28 and 30 Oct when my weight inexplicably shot up an extra kilogram, my weigh-ins have been fairly consistent. The first jump in my weight (28 Oct) was a total surprise. I don't know how I gained any extra weight. So, instead of taking the added gain off on that Tx, I chose to leave some of that off, and then be more aggressive on the following session. I am STILL cramping in my lower legs and back at my current dry weight (96.3 Kg), so taking off a huge amount in a single Tx was just not a wise choice. Hence, the overage on my final weight following dialysis that day.
Obviously, since that day, my weight has returned to the target range.

My R fistula continues to heal, but I still continue to have canulation issues. The top established site works great. The button hole is secure, and no issues exist on that one. However, the sharps sites--no matter where we put them--are having problems maintaining the proper flow rates. As of now, I have two sites that we are alternating between; one up near the elbow, and the other near the wrist.

The site near the elbow was looking awesome; but last weekend the site blew and canulation was not possible. So, the wrist was used. I don't like this site for two reasons: 1) It is close to the surgery site, and that whole area is sensitive due to nerve inflammation.
2) The site is extremely close to bone, and having a needle in is painful, both during Tx, and the following day, as well.

Assuming the pseudo-aneurysm (in the fistula) heals itself, I should be able to go back to the original site in early December. Hopefully when I do, all these issues will just disappear.

On the advice of my Nephrologist, I began taking a Probiotic about a week ago. He wants to see if taking the med will reduce the ongoing nausea that I have been having. So, I asked one of the pharmacists I work with what he would recommend, and he gave me several options. After looking at the ingredients on various [recommended] brands, I chose to use inSync, a one dose per day  regimen that provides six different probiotics. So far, my nausea is reduced, and I am having less gas, as well. Plus, my stools are mostly normal...something I haven't seen in months. So far, the probiotic is working well.

Still no word or call of any sort from the Transplant office. No word on my donor, either. Oh well...it's all just a waiting game, anyhow. Either way, the time is getting close.

I have noticed over the last few weeks (and as the weather has begun cooling towards winter), that I am no longer as cold as I was even a few months ago. I don't know why it is, but I am happy not to feel frozen 24/7.

My wife was reading about topical Tx's for the Burning Foot thing, and we implemented one easy treatment (Tx), a cool foot bath with Epsom salts in the water. This by no means takes the pain away; but so far, it DOES give me some relief. And when I can't sleep because of the burning, a little relief is HUGE!

My sleep continues to be inconsistent in total hours and quality. I'll sleep anywhere from a few hours to eight or nine. Along those lines, I'll awaken anywhere from rested to exhausted. And when I'm exhausted, I may or may not be able to sleep again, so I end up walking around in a bit of a daze, taking 10-15 minute naps throughout the day. At least I have the freedom to sleep whenever I need, or to be in a daze if that's how I feel at any given moment. Not stressing about sleep is a huge relief.

Thanks again for all of your support, in the many and various ways you give it!

Good Health to All!

ScottW