21 January 2015

Time for an update...

Dialysis Weights:

06 Jan 15
Starting Weight:  99.2 Kg
Ending Weight:  95.9 Kg
Water Removed:  3.40 Kg

08 Jan 15
Starting Weight:  97.8 Kg
Ending Weight:  95.5 Kg
Water Removed:  2.30 Kg

10 Jan 15
Starting Weight:  97.7 Kg
Ending Weight:  95.8 Kg
Water Removed:  1.90 Kg

13 Jan 15
Starting Weight:  99.0 Kg
Ending Weight:  95.7 Kg
Water Removed:  3.30 Kg

15 Jan 15
Starting Weight:  97.9 Kg
Ending Weight:  95.8 Kg
Water Removed:  2.10 Kg

17 Jan 15
Starting Weight:  97.5 Kg
Ending Weight:  95.9 Kg
Water Removed:  1.60 Kg

20 Jan 15
Starting Weight:  99.6 Kg
Ending Weight:  95.6 Kg
Water Removed:  4.10 Kg

Once more, consistency is the word of the day. For anyone wondering how this consistency happens, the answer is both simple, and [fairly] easy...Self-Discipline.
Don't get me wrong...adhering to the renal diet and fluid intake is really tough. Every day I personally struggle with extreme thirst. But, a long time ago I chose to do what I had to in order to get through this in the best possible shape. That means, sticking to the renal diet(--well...OK, a little cheating is involved every so often!), and consciously limiting my fluid intake to approximately 34-36 fluid ounces per day. It's not easy getting used to restricting foods and liquids; but, as long as you keep the proper mindset, the task becomes easier to bear.

My labs this month look great! Here they are:

(January 2015 Labs)

*Albumin (16 Dec): 4.30 g/dL     (-0.30 from 18 Nov)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (06 Jan): 11.20 G/dL    (+0.20 G/dL from 02 Dec)
  (A Measure of Anemia)

*Ca Corrected (06 Jan): 9.20 mg/dL     (-0.10 mg/dL from 02 Dec)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (06 Jan:  5.00 mg/dL    (+0.10 mg/dL from 02 Dec)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (16 Dec):  174 pg/mL     (-78 pg/mL from 18 Nov)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (13 Jan):  5.0 mEq/L    (-1.00 from 02 Dec)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (06 Jan):  1.69     (-0.04 from 02 Dec)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher 
Even the two reds I have are drops that are well within acceptable limits. In spite of Christmas and New Years (traditionally a very bad month for dialysis patients), my labs stayed right where they needed to be; and in the case of Potassium (K+), even dropped significantly! Yay!!  :o)

The URI I was combating in my last entry has pretty much resolved itself. As is usual with me, I continue hacking phlegm out of my lungs, and will do so for a few more weeks.

As you can see on my weights, I am dropping my dry weight again. For now, the goal is 95.8 Kg; but, my next target is 95.5 Kg. I've been having cramping in both feet; and until that resolves, I won't be trying to drop any further. At today's post_D weight, my cramping was significant, so it may be a couple more weeks before I deliberately try for 95.5 Kg.

Even though my weight has decreased significantly, I continue to have issues with water hiding under my diaphragm, leading to Respiritory Compromise. This doesn't always happen, but when it does, it nails me hard. Yesterday was a prime example. I started feeling the restricted breathing on Sunday evening, but decided to sleep in the bed anyway. Bad move on my part. When I awoke on Monday, the restriction has increased exponentially, and breathing was difficult in general. I only slept a few fitful hours on Monday night, struggling all night to breath comfortably.
No, I did NOT go to the ER because they would simply put me on O2, then watch me until it was time for me to go to dialysis; which I did at my usual Tuesday time (0600a!).
I used Oxygen (O2, at 4.00 L/Min) to help force better air into my body. Within half an hour I was comfortable and breathing normal.
This restrictive breathing is not an all the time thing. I went weeks between significant episodes. For me, the water sometimes just likes to collect under or near my diaphragm, instead of going to my legs, arms, back, etc. Plus, I haven't been having much diarrhea lately,which in and of itself is a very good thing, which would also aid in reducing my total water volume.

My sleep has been pretty good the last few weeks. I've been getting about seven hours on S/M/W/F, and about five hours on the nights just prior to dialysis. add in a few short naps each day, and my total sleep is pretty decent at about 8-9 hours each day. Plus, the quality of my sleep is better overall. Then, add in better control of my dreams, and I am seeing better and longer single nights' sleep than I've had in several years. I'll definitely take that improvement!


And that is about all I have for today. Everything else is either on auto pilot, or in a holding pattern as I await "the Call."

Good Health to All!

ScottW



 
My Latest Self Port...

05 January 2015

Well, Christmas and New Years are finally over and it's now time to get back to keeping you updated on my progress.

Let's start with dialysis weights:

09 Dec 14
Starting Weight:  99.7 Kg
Ending Weight:  96.3 Kg
Water Removed:  3.40 Kg

11 Dec 14
Starting Weight:  98.6 Kg
Ending Weight:  96.5 Kg
Water Removed:  2.10 Kg

13 Dec 14
Starting Weight:  99.7 Kg
Ending Weight:  96.3 Kg
Water Removed:  3.40 Kg

16 Dec 14
Starting Weight:  100.0 Kg
Ending Weight:  96.5 Kg
Water Removed:  3.50 Kg

18 Dec 14
Starting Weight:  98.9 Kg
Ending Weight:  96.0 Kg
Water Removed:  2.90 Kg

20 Dec 14
Starting Weight:  98.7 Kg
Ending Weight:  95.9 Kg
Water Removed:  2.80 Kg

22 Dec 14
Starting Weight:  97.9 Kg
Ending Weight:  96.0 Kg
Water Removed:  1.90 Kg

24 Dec 14
Starting Weight:  99.0 Kg
Ending Weight:  95.5 Kg
Water Removed:  3.50 Kg

27 Dec 14
Starting Weight:  99.3 Kg
Ending Weight:  95.9 Kg
Water Removed:  3.40 Kg

30 Dec 14
Starting Weight:  97.3 Kg
Ending Weight:  95.8 Kg
Water Removed:  1.50 Kg

01 Jan 15
Starting Weight:  96.6 Kg
Ending Weight:  96.1 Kg
Water Removed:  0.50 Kg

03 Jan 15
Starting Weight:  97.4 Kg
Ending Weight:  95.8 Kg
Water Removed:  1.60 Kg
 Aside from a few treatments, my weight has remained steady. Around Christmas I came down with an Upper Respiritory Infection (URI). For nearly a week I ate very little, drank very little and felt pretty miserable. I coughed up thick, viscous mucous for nearly five days. Zofran every three and a half hours was a must, accompanied by frequent Tums chasers. The most obvious sign of my being sick was my voice. Whenever I get a cold or a URI, my voice bottoms out to a deep, gravely noise that no one recognizes as me. It's awesome! :o)

News on my L Arm:
Remember the issues I was having with my L arm? Well, it turns out the fistula on that arm is completely closing off. There was a small flap still allowing fluid through, which was building fluid pressure above the fistula causing the painful edema and discoloration of the lower arm. The vascular doc told me the edema and pain would subside anywhere between two weeks and two months.
So, as of this writing, the swelling in the arm is gone; as are the pain and discoloration. There is zero neural compromise, so the fistula is now completely closed off. The only residual effect is the hardening of the fistula. That will likely never change.

I've been doing research on the new rules for cadaveric donations of kidneys (and other organ donations, too). Because of my age, general health, time on dialysis, antigen score and anticipated life expectancy, I should be at or near the top of the list. While the original timeframe for my receiving a kidney is nearing its end, the new rules will affect that, and it could be anywhere between now and another year before I get a transplant. However, when I do, it should be a very healthy organ that will give me years of viability--possibly the only transplant I will ever need; assuming I will take care of the kidney.
So...the waiting continues...
The info on the new UNOS rules is fairly scattered amongst numerous sites. Start at UNOS, then branch out from there. The more you read about the changes, the better your understanding of the plethora of issues involved.

Although the latest monthly labs won't be taken until tomorrow, I already know that both my K+ (Potassium) and Phosphorous numbers are in excellent shape. Both are down near the 4.6 mark the last time both were checked. The new labs should be available by Friday, so I'll get those posted later this week.

That's about all I have for now. I won't wait almost a month again before posting my next blog.

Good Health to All!

ScottW

19 December 2014

Just a quick update today...

A week ago I began having pain around the lower fistula on my L arm--the now abandoned fistula. Over the course of the next few days the pain increased and included the entire lower arm, as well as having edema showing up, causing additional pain.

At dialysis on Tuesday, my Nephrologist took a look at the arm and ordered blood serum tests for infection, and a three round course of IV antibiotics, as a 'just in case' thing regarding the test.

Since then, the swelling has decreased minimally, and the pain in the arm has increased. So, I called to schedule an appointment with the vascular surgeon this coming Monday.

It is clearly evident that I have a compartmental bleed in the arm, and it may need surgery to correct. I'll find that out on Monday.

The likelihood of serious damage is minimal, at this point. My neuros are good, , my skin tone in the hand is good, and the coloration in my arm, though red, is still OK. The pain is slowly increasing, but I do NOT feel like my arm is in immediate danger. I will keep you updated on the news.

Good Health to All!

ScottW

08 December 2014

I can't believe an entire month has gone by since my last blog entry; so, I guess I had best get to it...

Dialysis Weights:

11 Nov 14
Starting Weight:  100.1 Kg 
Ending Weight:   96.4 Kg
Water Removed:   3.70 Kg

13 Nov 14
Starting Weight:   99.3 Kg
Ending Weight:   96.2 Kg
Water Removed:   3.10 Kg
15 Nov 14
Starting Weight:   98.6 Kg
Ending Weight:   96.4 Kg
Water Removed:   2.20 Kg

18 Nov 14
Starting Weight:   99.6 Kg
Ending Weight:   95.9 Kg
Water Removed:   3.60 Kg

20 Nov 14
Starting Weight:   98.9 Kg
Ending Weight:   96.1 Kg
Water Removed:   2.80 Kg

22 Nov 14
Starting Weight:   98.8 Kg
Ending Weight:   96.2 Kg
Water Removed:   2.60 Kg

24 Nov 14
Starting Weight:   98.6 Kg
Ending Weight:   96.3 Kg
Water Removed:   2.30 Kg

26 Nov 14
Starting Weight:  98.7 Kg 
Ending Weight:   95.9 Kg
Water Removed:   2.80 Kg

29 Nov 14
Starting Weight:   99.9 Kg
Ending Weight:   96.1 Kg
Water Removed:   3.80 Kg

02 Dec 14
Starting Weight:   100.7 Kg
Ending Weight:   97.0 Kg
Water Removed:   3.70 Kg

04 Dec 14
Starting Weight:   100.0 Kg
Ending Weight:   96.4 Kg
Water Removed:   3.60 Kg

06 Dec 14
Starting Weight:   98.9 Kg
Ending Weight:   96.3 Kg
Water Removed:   2.60 Kg

Aside from the Thanksgiving treatment schedule, my weights remain consistent; thanks in large part to my dedication to my fluid intake awareness and decision to limit my intake to 1 Liter of fluid per day. It's definitely NOT easy to stick to the intake limits, but in the end, it's the healthiest thing I can do in order to stay as healthy as possible.

December Labs:

*Albumin (18 Nov): 4.60 g/dL     (+0.40 from 21 Oct)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (02 Dec): 11.00 G/dL    (+0.70 G/dL from 04 Nov)
  (A Measure of Anemia)

*Ca Corrected (02 Dec): 9.30 mg/dL     (-0.20 mg/dL from 04 Nov)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (02 Dec:  4.90 mg/dL    (-0.70 from 04 Nov)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (18 Nov):  252 pg/mL     (+0.67 pg/mL from 21 Oct)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (02 Dec):  6.0 mEq/L    (NO Change from 04 Nov)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (02 Dec):  1.73     (+0.12 from 04 Nov)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher 
My labs look awesome...except for the Potassium, of course. That just likes to jump and skip around going from bad to good to terrible--and back again...there just isn't any consistency with the K+, and I am doing everything I can to limit the intake of foods containing this mineral. I'll just keep doing what I'm doing. Maybe next month the lab will look good again.

I had my R arm remapped on the 1st [of Dec] to see what was happening with that pseudo-aneurysm (PS). The PS is completely healed, and I have already begun using the old site further up the arm. The site at the wrist is completely abandoned because not only was it unnecessary to use it, but the pain I had from the canulations was constant. Plus, the latest mapping show that it has also developed a pseudo-aneurysm; most likely the result of numerous nicks of the fistula wall due to its proximity to bone structures. So, oh darn...the wrist just isn't an option anymore. What a disappointment! :o{

I have the chart of the mapping, but I cannot scan it right now. As soon as I can do that, I'll get the chart posted on a new entry.

The reason I can't scan that mapping chart--and why it has taken me a month to write a new entry-- is because I have just moved. The building my condo was in had just been sold and the uncompleted project was about to undergo months of directly adjacent (in building) construction noise, plus a couple of years of construction on a new building right next to my condo, and with needing lots of rest due to dialysis AND everything else, staying just wasn't an option. Anyhow, I am not yet fully set up in my new home office, so my scanner is not yet set up--mostly because I need a longer firewire to connect the copier/scanner/printer to my desktop.

I have been having new issues with breathing...again. I had thought that with my dry weight dropping so much there would no longer be problems with water collecting under/near  my diaghram. Unfortunately, that is NOT the case. Even with watching my fluid intake, the water seems be collecting in areas that make breathing difficult, and laying down impossible. So, on the second and third nights after dialysis, I am again sleeping sitting up in my comfy chair. It's all no fun whatsoever, but at least I know how I can deal with the issue whenever it comes up.

The whole soaking my feet thing for the Burning Foot Syndrome continues to be effective whenever I need the relief. No more sleepless nights because of the pain in my feet! (Yay!)

My appetite continues to be all over the place, as does my propensity to be totally turned off by smells, textures, tastes, etc. It's hard to eat consistently from meal to meal when foods just suddenly become completely unappetizing for whatever reason. I know this will disappear I when have a kidney, so I just have to get past this as best I can from day to day.

My eyesight has been downright terrible the last few weeks. While my farsightedness is always good, its the nearsightedness that is terrible. I have been using my reading glasses (the ones I got for my Occular Divergence) every time I am on my desktop, tablet, have excessive smartphone use or just reading anything else. At least I can work around this symptom of my complete lack of kidneys.

The exhaustion level I feel from day to day is, as always, never to same from moment to moment. When I do have energy, it disappears quickly, so I try to maximize whatever I am doing at that time. I'm still walking around a lot clearly tired and visibly exhausted. However, I try to push through this so I continue to gain strength; however miniscule the strengthening is. I'll never get stronger if I never push myself; so even though it doesn't seem like it, every opportunity to push myself is getting me closer to being as healthy and strongest as possible. Like I said, it certainly doesn't seem like pushing myself does much good; but when you find yourself walking a tick faster, or lifting something a tad heavier, then you know for surety that your efforts are paying off.

That's all I have for today. Thanks for hanging in there with me day after day. This has been a very long journey, and I appreciate your continuous thoughts and prayers.

Good Health to All!

ScottW

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

 

Mapping My R Fistula

I had my R fistula arm mapped earlier this week. The purpose was to evaluate how well the fistula is developing. The result diagram is below...

 

All in all, the fistula is great. The flows are well above superb. The surgeon likes a flow pressure of 600. My flow pressure is at over 1000!

Vessel development is beyond expectations, and there are numerous branching vessels that are also increasing in both size and flow rates.

The only drawback--and this is directly due to the recent infiltrations--is that I have a pseudo-aneurysm beneath the Lower canulation site. Basically, this is a pocket that has blood coursing through it, going in a continuous circle. It could burst, causing severe vascular issues, but the doc thinks it will be OK so long as I abandon that site for dialysis, thereby reducing pressure on the aneurysm. No big deal. I have already established a new site further up the arm.

To help the pseudo-aneurysm heal, I need to apply gentle direct pressure on the site a few times a day for a couple of minutes each. (Real tough to do, right?) I will be going back on December 1st to have the arm remapped, and the aneurysm evaluated once more.

 

I will certainly update you once I know the results.

 

Good Health to All!

 

ScottW