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
Friday, December 19, 2014
Monday, December 8, 2014
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
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
Friday, November 14, 2014
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!
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. | ||||
 | ||||
Monday, November 10, 2014
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
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
Thursday, October 30, 2014
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
Saturday, October 25, 2014
New UNOS Allocation Policy
New Kidney Allocation Policy Goes into Effect Dec. 4
United Network for Organ Sharing (UNOS)—a nonprofit that runs the nation’s transplant system under contract with the federal government—is responsible for matching kidneys and other organs from deceased donors with patients on the waiting list. Many factors go into the matching process. They include blood type, body size, tissue typing match, distance from the donor hospital to the transplant candidate’s hospital, and the time a candidate has spent waiting.
Transplant and donation professionals, along with patient and donor family representatives, volunteer on committees and a board of directors to constantly look for ways to improve how we share organs and increase patient safety.
We have been matching kidneys with patients pretty much the same way since 1988. But the current system doesn’t take into account the biologic needs of people with immune system sensitivity very well. Nor does it maximize the use of kidneys.
An improved kidney matching system that addresses these issues will take effect on Dec. 4. It will help more people have longer function with their transplanted kidneys. It will also shorten the wait for some groups of people who often wait a very long time because they are hard to match with most kidneys.
Transplant candidates already on the waiting list will not lose credit for any time they already spent waiting, which is a major factor in kidney allocation. For those patients who began dialysis before they were listed for a kidney transplant, their waiting time will be backdated to the day they first had dialysis.
Each kidney transplant candidate will receive a score estimating how long he or she will need a kidney transplant relative to the others listed for a kidney transplant. Each kidney will also receive a score. It predicts how long the kidney is likely to function compared to other kidneys. The 20 percent of kidneys that have the longest expected function will be offered first to the 20 percent of candidates who will need a kidney for the longest time. This will reduce the need for patients to be relisted for a second or third kidney. The majority of kidneys—the other 80 percent—will be matched much as they are now.
Kidneys that may last a shorter time will be more readily available for people who have a hard time remaining on dialysis. The 15 percent of kidneys expected to function the shortest amount of time will be offered first to a wider area of the country than other kidneys in order to find a suitable patient as quickly as possible.
UNOS provides a series of patient brochures called “Talking about Transplantation.” You can find a brochure that explains the new kidney allocation process at http://www.unos.org/docs/Kidney_Brochure.pdf.
If you’ve been diagnosed with kidney disease, you should talk to your physician about your treatment options, including whether or not you should be evaluated for kidney transplantation. It is best if patients are evaluated for transplant before they reach the latest stages of kidney failure. Visit http://optn.transplant.hrsa.gov/members/search.asp for a list of transplant centers by state.
Your transplant team can discuss the best options for you based on your score and the types of kidneys that would best match your need.
Richard Formica, M.D. is the chair of the OPTN/UNOS Kidney Transplantation Committee. He is director of Transplant Nephrology at Yale-New Haven Hospital and an associate professor of medicine and surgery at Yale School of Medicine.
Wednesday, October 15, 2014
15 October 2014
As promised, here are this month's labs...
*Albumin (16 Sep): 4.20 g/dL (+0.40 g/dL from 19 Aug)
(A measure of Protein in the blood) NR (Normal Range) 4.0 g/dL or Higher
*Hemoglobin (07 Oct): 10.80 G/dL (-0.70 G/dL from 16 Sep)
(A Measure of Anemia)
*Ca Corrected (07 Oct): 9.60 mg/dL (+0.10 mg/dL from 02 Sep)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL
*Phosphorous (07 Oct): 4.30 mg/dL (-1.00 mg/dL from 02 Sep)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL
*PTH Intact (16 Sep): 229 pg/mL (-0.25 pg/mL from 26 Aug)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL
*K+ (07 Oct): 5.40 mEq/L (+0.20 mEq/L from 16 Sep)
(Proper potassium levels keep your nerves and muscles working well) NR 3.5 to 5.5 mEq/L
*spKdt/V Dialysis (07 Oct): 1.61 (+0.33 from 09 Sep)
(A measure of the effectiveness of dialysis and blood filtering.) NR 1.20 or Higher
My numbers are awesome! The PTH and Albumin have not yet been drawn for the month, but all the rest are current. The new fistula is making a big difference!
Speaking of the new fistula, I have had to drop my dry weight by a significant number because the R fistula is working so well.
On the October 7th Tx I had everything at dialysis set for my [then] dry weight of 99.0 Kg. (This was my second or third Tx using the new fistula). When I was done with my Tx, I weighed myself; then re-weighed myself thinking the number wasn't right; but it was! My weight had dropped to 96.6 Kg--an additional fluid loss of 2.40 Kg! That's equivalent of about an entire gallon of water!
The added fluids came from my legs, back and abdomen; as evidenced by smaller ankles and lower legs, less inches around my back, and easier breathing from the diaphragm.
With that much fluid loss you'd expect to hear that I had massive cramping, an out of control headache, etc...but there was NO detrimental effects from the added fluid removal. None!
Hidden fluids that I never knew were there...amazing!
So, my new dry weight is now 96.6 Kg.
My new fistula is going great. The only set back was a triple infiltration last Saturday (we're still using Sharp needles to establish button holes). The hematomas created by the infiltrations weren't bad, but the bruising is!
The bruising only just started coming up yesterday, so it should be looking even better a few days from now.
As long as I'm here, let's get updated on the weights...
07 Oct 14
Starting Weight: 100.7 Kg
Ending Weight: 96.6 Kg
Water Removed: 4.10 Kg
09 Oct 14
Starting Weight: 99.4 Kg
Ending Weight: 96.6 Kg
Water Removed: 2.80 Kg
11 Oct 14
Starting Weight: 98.8 Kg
Ending Weight: 96.3 Kg
Water Removed: 2.50 Kg
14 Oct 14
Starting Weight: 100.0 Kg
Ending Weight: 96.6 Kg
Water Removed: 3.40 Kg The nausea has been better, but not absent. I have days when it doesn't bother me at all, and other days that it just nails me. At least I know that C-Diff is no longer in play. (whew!)Last night I had nausea nit hard at about 0900p, and didn't let up until after 0630a this morning. Nothing helped it, so I just dosed with anti-emetics (Zofran, Tums) at regular intervals all night. Needless to say, but I was up all night. :o(
That's about all I have for today.
Still waiting on any word from my donor, or the Transplant Committee....
Good Health to All!
ScottW
--------------------------------------------------------------------------------------------------------------
*Update: 17 Oct 2014
At dialysis yesterday, the tech got the sticks on my R fistula, and they looked good. They even flowed properly. But about two minutes after the Tx began, I suddenly felt my arm get tighter, looked down and saw a hematoma expanding; becoming very painful with every passing second. Luckily the tech was still by me, so I called out, "Jared...Hematoma!" The flow was quickly cut off, but the damage was done.
The infiltration came from the top site...one of the three places infiltrated on Saturday; which is odd because that same site was fine this past Tuesday. Unfortunately, something blew, and now my arm will be even better looking. :o(
Instead of trying to re-canulate, I told the tech just to go for my L arm again. Now, the plan for Saturday's upcoming Tx will be to canulate the L arm, giving the R arm a chance to heal. On Tuesday, we'll try using button hole needles on the R arm. If it blows again, we'll likely need to let the arm rest for even longer.
At least the L fistula is still [somewhat] viable. Otherwise I'd have to get a catheter in my chest, which I do NOT want! Stay tuned...
*Albumin (16 Sep): 4.20 g/dL (+0.40 g/dL from 19 Aug)
(A measure of Protein in the blood) NR (Normal Range) 4.0 g/dL or Higher
*Hemoglobin (07 Oct): 10.80 G/dL (-0.70 G/dL from 16 Sep)
(A Measure of Anemia)
*Ca Corrected (07 Oct): 9.60 mg/dL (+0.10 mg/dL from 02 Sep)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL
*Phosphorous (07 Oct): 4.30 mg/dL (-1.00 mg/dL from 02 Sep)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL
*PTH Intact (16 Sep): 229 pg/mL (-0.25 pg/mL from 26 Aug)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL
*K+ (07 Oct): 5.40 mEq/L (+0.20 mEq/L from 16 Sep)
(Proper potassium levels keep your nerves and muscles working well) NR 3.5 to 5.5 mEq/L
*spKdt/V Dialysis (07 Oct): 1.61 (+0.33 from 09 Sep)
(A measure of the effectiveness of dialysis and blood filtering.) NR 1.20 or Higher
My numbers are awesome! The PTH and Albumin have not yet been drawn for the month, but all the rest are current. The new fistula is making a big difference!
Speaking of the new fistula, I have had to drop my dry weight by a significant number because the R fistula is working so well.
On the October 7th Tx I had everything at dialysis set for my [then] dry weight of 99.0 Kg. (This was my second or third Tx using the new fistula). When I was done with my Tx, I weighed myself; then re-weighed myself thinking the number wasn't right; but it was! My weight had dropped to 96.6 Kg--an additional fluid loss of 2.40 Kg! That's equivalent of about an entire gallon of water!
The added fluids came from my legs, back and abdomen; as evidenced by smaller ankles and lower legs, less inches around my back, and easier breathing from the diaphragm.
With that much fluid loss you'd expect to hear that I had massive cramping, an out of control headache, etc...but there was NO detrimental effects from the added fluid removal. None!
Hidden fluids that I never knew were there...amazing!
So, my new dry weight is now 96.6 Kg.
My new fistula is going great. The only set back was a triple infiltration last Saturday (we're still using Sharp needles to establish button holes). The hematomas created by the infiltrations weren't bad, but the bruising is!
The bruising only just started coming up yesterday, so it should be looking even better a few days from now.
As long as I'm here, let's get updated on the weights...
07 Oct 14
Starting Weight: 100.7 Kg
Ending Weight: 96.6 Kg
Water Removed: 4.10 Kg
09 Oct 14
Starting Weight: 99.4 Kg
Ending Weight: 96.6 Kg
Water Removed: 2.80 Kg
11 Oct 14
Starting Weight: 98.8 Kg
Ending Weight: 96.3 Kg
Water Removed: 2.50 Kg
14 Oct 14
Starting Weight: 100.0 Kg
Ending Weight: 96.6 Kg
Water Removed: 3.40 Kg The nausea has been better, but not absent. I have days when it doesn't bother me at all, and other days that it just nails me. At least I know that C-Diff is no longer in play. (whew!)Last night I had nausea nit hard at about 0900p, and didn't let up until after 0630a this morning. Nothing helped it, so I just dosed with anti-emetics (Zofran, Tums) at regular intervals all night. Needless to say, but I was up all night. :o(
That's about all I have for today.
Still waiting on any word from my donor, or the Transplant Committee....
Good Health to All!
ScottW
--------------------------------------------------------------------------------------------------------------
*Update: 17 Oct 2014
At dialysis yesterday, the tech got the sticks on my R fistula, and they looked good. They even flowed properly. But about two minutes after the Tx began, I suddenly felt my arm get tighter, looked down and saw a hematoma expanding; becoming very painful with every passing second. Luckily the tech was still by me, so I called out, "Jared...Hematoma!" The flow was quickly cut off, but the damage was done.
The infiltration came from the top site...one of the three places infiltrated on Saturday; which is odd because that same site was fine this past Tuesday. Unfortunately, something blew, and now my arm will be even better looking. :o(
Instead of trying to re-canulate, I told the tech just to go for my L arm again. Now, the plan for Saturday's upcoming Tx will be to canulate the L arm, giving the R arm a chance to heal. On Tuesday, we'll try using button hole needles on the R arm. If it blows again, we'll likely need to let the arm rest for even longer.
At least the L fistula is still [somewhat] viable. Otherwise I'd have to get a catheter in my chest, which I do NOT want! Stay tuned...
Monday, October 6, 2014
06 October 2014
Time to get you updated...
Dialysis Weights:
23 Sep 14
Starting Weight: 101.7 Kg
Ending Weight: 99.1 Kg
Water Removed: 2.60 Kg
25 Sep 14
Starting Weight: 100.2 Kg
Ending Weight: 99.3 Kg
Water Removed: 0.90 Kg
27 Sep 14
Starting Weight: 101.3 Kg
Ending Weight: 98.9 Kg
Water Removed: 2.40 Kg
30 Sep 14
Starting Weight: 101.2 Kg
Ending Weight: 98.7 Kg
Water Removed: 2.50 Kg
02 Oct 14
Starting Weight: 100.7 Kg
Ending Weight: 98.7 Kg
Water Removed: 2.00 Kg
04 Oct 14
Starting Weight: 101.4 Kg
Ending Weight: 96.7 Kg
Water Removed: 4.70 Kg
Notice that my weights have been dropping. I suspect there are two reasons for this...First my recent bout with C-diff, and subsequent poor average food intake.
Second, I began using my new R fistula on Thursday, 02 Oct. The new fistula is incredible strong, and is literally pushing additional fluids through the needles.
Now, as to the recent bout with C-diff, I think I lost a good amount of weight that remained in my body in the form of water. My ankles have been constantly swollen, and I have had that continuing issue with feeling like I am struggling to breathe, while my lungs are clear. The clinic head nurse thinks I've been storing water around my diaghram, which answers the breathing issue. Plus, the ankles being swollen despite dialysis, and you have hidden weight in added water throughout my body.
Saturday's dialysis showed me that these have been going on when I gave back over two additional Kg's of water, yet have had almost no cramping, my dialysis headache was almost non-existent, and I have been more comfortable in my breathing than I have in weeks. I had no idea.
So, when I go in to dialysis this coming Tuesday, I will aim for the same 96.7 Kg I left at on Saturday. If I fail to cramp badly, or have any other severe issues, I'll know for sure that that hidden water weight has come off, and I can take a huge drop in my dry weight(currently at 99.0 Kg).
When I began using the R fistula, I also began using my L arm for BP readings. And, according with using the arm, my BP has dropped significantly to more of a normal range. When I left my last Tx, my final BP was 153/98. While you may think this is high, it actually isn't. By using an abandoned fistula arm, the BP is going to be higher than normal due to the continued high pressure/high flow volume in the arm. Until the fistula dies altogether, the readings will reflect this higher pressure, while the numbers are NOT reflective of the actual BP.
My eating lately has been poor. Foods are just not appealing; and when I do eat, I am only eating about half of what I've [normally] been consuming at this point. My sense of smell is way off lately as I can hardly smell most foods at all; and when I do smell them, the odor is extremely off-putting. Between the two, it impacts my appetite significantly.
My energy has been slowing improving, and I have been able to drive more and more. However, once my energy is gone, I am pretty much useless the rest of the day. At least I'm seeing improvement in this area!
Overall, the nausea has been way down. I am taking maybe one dose of Zofran per day, on average. Some days I have taken none at all...A definite improvement!
My sleep has been poor, at best. I haven't had a solid night of sleep in several weeks. Usually, I sleep for four to five hours, then stay awake most of the day, with an occasional nap in the late afternoon/early evening, then stay awake for hours again, being exhausted the whole time. Dialysis days see the greatest volume of sleep over a twenty four hour period of between 12-15 hours. Other than that, there is no pattern to my sleep.
On my labs, the monthly labs won't be drawn until this coming Tuesday. I should have the results by the end of the week. In the meantime, I already know that my Phosphorous and Potassium numbers are outstanding; dropping to 5.3 and 4.9 respectively.
That's all I have for today. Like I said, the latest labs will be available later this week, and I'll post them as soon as I can.
Have a terrific week, folks!
Good Health to All!
ScottW
Dialysis Weights:
23 Sep 14
Starting Weight: 101.7 Kg
Ending Weight: 99.1 Kg
Water Removed: 2.60 Kg
25 Sep 14
Starting Weight: 100.2 Kg
Ending Weight: 99.3 Kg
Water Removed: 0.90 Kg
27 Sep 14
Starting Weight: 101.3 Kg
Ending Weight: 98.9 Kg
Water Removed: 2.40 Kg
30 Sep 14
Starting Weight: 101.2 Kg
Ending Weight: 98.7 Kg
Water Removed: 2.50 Kg
02 Oct 14
Starting Weight: 100.7 Kg
Ending Weight: 98.7 Kg
Water Removed: 2.00 Kg
04 Oct 14
Starting Weight: 101.4 Kg
Ending Weight: 96.7 Kg
Water Removed: 4.70 Kg
Notice that my weights have been dropping. I suspect there are two reasons for this...First my recent bout with C-diff, and subsequent poor average food intake.
Second, I began using my new R fistula on Thursday, 02 Oct. The new fistula is incredible strong, and is literally pushing additional fluids through the needles.
Now, as to the recent bout with C-diff, I think I lost a good amount of weight that remained in my body in the form of water. My ankles have been constantly swollen, and I have had that continuing issue with feeling like I am struggling to breathe, while my lungs are clear. The clinic head nurse thinks I've been storing water around my diaghram, which answers the breathing issue. Plus, the ankles being swollen despite dialysis, and you have hidden weight in added water throughout my body.
Saturday's dialysis showed me that these have been going on when I gave back over two additional Kg's of water, yet have had almost no cramping, my dialysis headache was almost non-existent, and I have been more comfortable in my breathing than I have in weeks. I had no idea.
So, when I go in to dialysis this coming Tuesday, I will aim for the same 96.7 Kg I left at on Saturday. If I fail to cramp badly, or have any other severe issues, I'll know for sure that that hidden water weight has come off, and I can take a huge drop in my dry weight(currently at 99.0 Kg).
When I began using the R fistula, I also began using my L arm for BP readings. And, according with using the arm, my BP has dropped significantly to more of a normal range. When I left my last Tx, my final BP was 153/98. While you may think this is high, it actually isn't. By using an abandoned fistula arm, the BP is going to be higher than normal due to the continued high pressure/high flow volume in the arm. Until the fistula dies altogether, the readings will reflect this higher pressure, while the numbers are NOT reflective of the actual BP.
My eating lately has been poor. Foods are just not appealing; and when I do eat, I am only eating about half of what I've [normally] been consuming at this point. My sense of smell is way off lately as I can hardly smell most foods at all; and when I do smell them, the odor is extremely off-putting. Between the two, it impacts my appetite significantly.
My energy has been slowing improving, and I have been able to drive more and more. However, once my energy is gone, I am pretty much useless the rest of the day. At least I'm seeing improvement in this area!
Overall, the nausea has been way down. I am taking maybe one dose of Zofran per day, on average. Some days I have taken none at all...A definite improvement!
My sleep has been poor, at best. I haven't had a solid night of sleep in several weeks. Usually, I sleep for four to five hours, then stay awake most of the day, with an occasional nap in the late afternoon/early evening, then stay awake for hours again, being exhausted the whole time. Dialysis days see the greatest volume of sleep over a twenty four hour period of between 12-15 hours. Other than that, there is no pattern to my sleep.
On my labs, the monthly labs won't be drawn until this coming Tuesday. I should have the results by the end of the week. In the meantime, I already know that my Phosphorous and Potassium numbers are outstanding; dropping to 5.3 and 4.9 respectively.
That's all I have for today. Like I said, the latest labs will be available later this week, and I'll post them as soon as I can.
Have a terrific week, folks!
Good Health to All!
ScottW
Sunday, September 21, 2014
21 September 2014
See? I didn't wait too long after my last entry...
Let's do numbers...
Dialysis weights:
11 Sep 14
Starting Weight: 101.0 Kg
Ending Weight: 99.4 Kg
Water Removed: 1.60 Kg
13 Sep 14
Starting Weight: 100.7 Kg
Ending Weight: 99.3 Kg
Water Removed: 1.40 Kg
16 Sep 14
Starting Weight: 102.6 Kg
Ending Weight: 98.8 Kg
Water Removed: 3.60 Kg
18 Sep 14
Starting Weight: 101.0 Kg
Ending Weight: 98.9 Kg
Water Removed: 2.20 Kg
20 Sep 14
Starting Weight: 101.5 Kg
Ending Weight: 99.0 kg
Water Removed: 2.50 Kg
My weights remain consistent. As you can see, I have reduced my dry weight; though not because I wanted to. Slowly, over the past week and a half, I have again had an increasingly difficult time breathing. Nothing major like what happened last February; but an impingement in my breathing nonetheless.
The Head Nurse at the dialysis clinic listened to my lungs, which were actually clear. He surmised that I am holding water under my diaphragm, and cannot fully expand my lungs. So, I again went on Oxygen during treatment, and we were aggressive on my dry weight--shooting for 99.0 Kg's each of the last three Tx's.
The lower weight helped, but has not yet fully removed the fluid. Another treatment or two should finish the job.
Surprisingly, going so far below my official dry weight (99.3 Kg's) has not yet resulted in massive cramping. There has been some minor cramping, along with residual muscle soreness and fatigue; but the lack of serious cramping has been a pleasant development.
As of this coming Monday I am at six weeks post-Fistula surgery. The vein is incredibly strong, and I can actually hear the bruit (sound) of the fistula when I hold it up to my ear. Also, the veins on my R hand and forearm are all distended. Yeah...this fistula is awesome! :o) Anyhow, we'll make a final determination on Tuesday as to whether or not we'll start using the new fistula. I'll keep you updated.
Latest Labs:
*Albumin (16 Sep): 4.20 g/dL (+0.40 g/dL from 19 Aug)
(A measure of Protein in the blood) NR (Normal Range) 4.0 g/dL or Higher
*Hemoglobin (16 Sep): 10.90 G/dL (+0.70 G/dL from 02 Sep)
(A Measure of Anemia)
*Ca Corrected (02 Sep): 9.50 mg/dL (-0.20 mg/dL from 03 Jun)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL
*Phosphorous (02 Sep): 5.30 mg/dL (-0.40 mg/dL from 03 Jun)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL
*PTH Intact (16 Sep): 229 pg/mL (-0.25 pg/mL from 26 Aug)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL
*K+ (16 Sep): 5.20 mEq/L (-0.50 mEq/L from 02 Sep)
(Proper potassium levels keep your nerves and muscles working well) NR 3.5 to 5.5 mEq/L
*spKdt/V Dialysis (09 Sep): 1.28 (+0.15 from 02 Sep)
(A measure of the effectiveness of dialysis and blood filtering.) NR 1.20 or HigherSee all that Green?
I have been working hard to get my numbers to improve, and my work is obviously paying off. Look at the labs I posted over the last few months, and you'll see for yourself all the Red that is no longer dominating the results. Plus, once I can use the new fistula, we should see a big rise in the effectiveness of the dialysis.
Ever since my C-Diff episode, I continue to have restless sleep; though, it has improved over the last week or two. Add in the newest issues with my breathing, and I am getting enough sleep every day, it just isn't very restful sleep. I know that with time, my brain will settle down and I will sleep better and better.
When I was leaving for dialysis this morning, I actually walked out without my cane! Yes, I realized it before going too many steps, and went back and retrieved it, then continued on to my Saturday treatment. What I want to point out is that I am no longer thinking of my cane as a necessity. I still have to use it for occasional dizziness, and when I walk too much and my whole body aches and tires quickly. However, forgetting my cane is a great thing. It is (to me) just another indication that the mental shift I had in August--after my yearly transplant review--has really taken hold, and I am now mentally gearing up for post-transplant life.
In addition to that, I also decided this week that I want to start taking care of my hair now. In other words, no more extra short haircuts once a month. I am growing out my hair for the first time in about three years. I am now feeling up to styling my hair after I shower (which is every other day, on a regular basis now!), and keeping it nice on the non-shower days (dialysis days). I know it doesn't seem like much, but reaching to this decision has been a long time coming, and clearly shows that I am ready for the changes that are just ahead of me.
My Blood Pressure during dialysis has been really high lately. I am not worried about this at all; nor are my doctors. We all agree that the high BP is because the reading is being taken off my leg (remember, two fistulas means no BP's on the arms). If you'll recall, my BP--prior to my latest fistula surgery--was awesome, averaging about 120/65 as it read off my R arm. Once I begin using the new fistula, we can start doing the BP on my L arm again, since that fistula is dying anyway. Once those readings start, we should see my BP drop to normal levels.
I don't know if I have previously mentioned this, but regarding the soon-to-be abandoned L fistula, I was informed by the Vascular Surgeon that once the R arm is being used, I can return to using my whole L arm once again. That means I can bang it around, grow the hair out again (!), wear a watch (yay!), and just resume normal activities with it.
IF there appears to be any vascular compromise of the L arm that develops from normal use, the Vascular Surgeon will correct anything that needs addressing...
...but that is a big IF. Like any procedure, there are always risks and complications. Resuming normal use of the arm [of a dead fistula] could lead to vascular compromise. The likelihood is small, but it is a real risk. I just have to keep any eye on my whole arm, and if I notice anything untowards happening, I am to contact the surgeon's office immediately.
I think that's about all for today. Things continue to move towards transplant...
...(How exciting!)
Good Health To All!
ScottW
Let's do numbers...
Dialysis weights:
11 Sep 14
Starting Weight: 101.0 Kg
Ending Weight: 99.4 Kg
Water Removed: 1.60 Kg
13 Sep 14
Starting Weight: 100.7 Kg
Ending Weight: 99.3 Kg
Water Removed: 1.40 Kg
16 Sep 14
Starting Weight: 102.6 Kg
Ending Weight: 98.8 Kg
Water Removed: 3.60 Kg
18 Sep 14
Starting Weight: 101.0 Kg
Ending Weight: 98.9 Kg
Water Removed: 2.20 Kg
20 Sep 14
Starting Weight: 101.5 Kg
Ending Weight: 99.0 kg
Water Removed: 2.50 Kg
My weights remain consistent. As you can see, I have reduced my dry weight; though not because I wanted to. Slowly, over the past week and a half, I have again had an increasingly difficult time breathing. Nothing major like what happened last February; but an impingement in my breathing nonetheless.
The Head Nurse at the dialysis clinic listened to my lungs, which were actually clear. He surmised that I am holding water under my diaphragm, and cannot fully expand my lungs. So, I again went on Oxygen during treatment, and we were aggressive on my dry weight--shooting for 99.0 Kg's each of the last three Tx's.
The lower weight helped, but has not yet fully removed the fluid. Another treatment or two should finish the job.
Surprisingly, going so far below my official dry weight (99.3 Kg's) has not yet resulted in massive cramping. There has been some minor cramping, along with residual muscle soreness and fatigue; but the lack of serious cramping has been a pleasant development.
As of this coming Monday I am at six weeks post-Fistula surgery. The vein is incredibly strong, and I can actually hear the bruit (sound) of the fistula when I hold it up to my ear. Also, the veins on my R hand and forearm are all distended. Yeah...this fistula is awesome! :o) Anyhow, we'll make a final determination on Tuesday as to whether or not we'll start using the new fistula. I'll keep you updated.
Latest Labs:
*Albumin (16 Sep): 4.20 g/dL (+0.40 g/dL from 19 Aug)
(A measure of Protein in the blood) NR (Normal Range) 4.0 g/dL or Higher
*Hemoglobin (16 Sep): 10.90 G/dL (+0.70 G/dL from 02 Sep)
(A Measure of Anemia)
*Ca Corrected (02 Sep): 9.50 mg/dL (-0.20 mg/dL from 03 Jun)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL
*Phosphorous (02 Sep): 5.30 mg/dL (-0.40 mg/dL from 03 Jun)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL
*PTH Intact (16 Sep): 229 pg/mL (-0.25 pg/mL from 26 Aug)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL
*K+ (16 Sep): 5.20 mEq/L (-0.50 mEq/L from 02 Sep)
(Proper potassium levels keep your nerves and muscles working well) NR 3.5 to 5.5 mEq/L
*spKdt/V Dialysis (09 Sep): 1.28 (+0.15 from 02 Sep)
(A measure of the effectiveness of dialysis and blood filtering.) NR 1.20 or HigherSee all that Green?
I have been working hard to get my numbers to improve, and my work is obviously paying off. Look at the labs I posted over the last few months, and you'll see for yourself all the Red that is no longer dominating the results. Plus, once I can use the new fistula, we should see a big rise in the effectiveness of the dialysis.
Ever since my C-Diff episode, I continue to have restless sleep; though, it has improved over the last week or two. Add in the newest issues with my breathing, and I am getting enough sleep every day, it just isn't very restful sleep. I know that with time, my brain will settle down and I will sleep better and better.
When I was leaving for dialysis this morning, I actually walked out without my cane! Yes, I realized it before going too many steps, and went back and retrieved it, then continued on to my Saturday treatment. What I want to point out is that I am no longer thinking of my cane as a necessity. I still have to use it for occasional dizziness, and when I walk too much and my whole body aches and tires quickly. However, forgetting my cane is a great thing. It is (to me) just another indication that the mental shift I had in August--after my yearly transplant review--has really taken hold, and I am now mentally gearing up for post-transplant life.
In addition to that, I also decided this week that I want to start taking care of my hair now. In other words, no more extra short haircuts once a month. I am growing out my hair for the first time in about three years. I am now feeling up to styling my hair after I shower (which is every other day, on a regular basis now!), and keeping it nice on the non-shower days (dialysis days). I know it doesn't seem like much, but reaching to this decision has been a long time coming, and clearly shows that I am ready for the changes that are just ahead of me.
My Blood Pressure during dialysis has been really high lately. I am not worried about this at all; nor are my doctors. We all agree that the high BP is because the reading is being taken off my leg (remember, two fistulas means no BP's on the arms). If you'll recall, my BP--prior to my latest fistula surgery--was awesome, averaging about 120/65 as it read off my R arm. Once I begin using the new fistula, we can start doing the BP on my L arm again, since that fistula is dying anyway. Once those readings start, we should see my BP drop to normal levels.
I don't know if I have previously mentioned this, but regarding the soon-to-be abandoned L fistula, I was informed by the Vascular Surgeon that once the R arm is being used, I can return to using my whole L arm once again. That means I can bang it around, grow the hair out again (!), wear a watch (yay!), and just resume normal activities with it.
IF there appears to be any vascular compromise of the L arm that develops from normal use, the Vascular Surgeon will correct anything that needs addressing...
...but that is a big IF. Like any procedure, there are always risks and complications. Resuming normal use of the arm [of a dead fistula] could lead to vascular compromise. The likelihood is small, but it is a real risk. I just have to keep any eye on my whole arm, and if I notice anything untowards happening, I am to contact the surgeon's office immediately.
I think that's about all for today. Things continue to move towards transplant...
...(How exciting!)
Good Health To All!
ScottW
Wednesday, September 10, 2014
10 September 2014
It's been a long while since my last written entry, so we've got a lot to cover...
We'll start with my most recent lab draws:
*Albumin (19 Aug): 3.40 g/dL (-0.60 g/dL from 20 May)
(A measure of Protein in the blood) NR (Normal Range) 4.0 g/dL or Higher
*Hemoglobin (02 Sep): 10.20 G/dL (+0.20 G/dL from 03 Jun)
(A Measure of Anemia)
*Ca Corrected (02 Sep): 9.50 mg/dL (-0.20 mg/dL from 03 Jun)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL
*Phosphorous (02 Sep): 5.30 mg/dL (-0.40 mg/dL from 03 Jun)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL
*PTH Intact (26 Aug): 254 pg/mL (-1.00 pg/mL from 20 May)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL
*K+ (02 Sep): 5.70 mEq/L (-0.70 mEq/L from 03 Jun)
(Proper potassium levels keep your nerves and muscles working well) NR 3.5 to 5.5 mEq/L
*spKdt/V Dialysis (02 Sep): 1.13 (-0.11 from 03 Jun)
(A measure of the effectiveness of dialysis and blood filtering.) NR 1.20 or Higher
Since my recent hospitalization, the Phosphorous and Potassium numbers have improved, as has the effectiveness of the dialysis. For the low Albumin, the clinic dietitian has put me on a regimen of 2 oz of Liquicel following treatment. Liquicel is a protein enhanced, vitamin rich liquid that will help dialysis patients keep their numbers in line. From what I understand, it is common for patients with no kidneys (like me!) to need this added supplement to keep their protein intake at it's minimal level. The Liquicel is thick, sugary and hits the stomach hard, but a swallow of water helps dilute it.
Dialysis Weights: (Just a few...)
19 Jul 14
Starting Weight: 101.6 Kg
Ending Weight: 99.6 Kg
Water Removed: 2.00 Kg
22 Jul 14
Starting Weight: 103.1 Kg
Ending Weight: 99.4 Kg
Water Removed: 3.70 Kg
24 Jul 14
Starting Weight: 101.1 Kg
Ending Weight: 99.3 Kg
Water Removed: 1.80 Kg
26 Jul 14
Starting Weight: 101.1 Kg
Ending Weight: 99.4 Kg
Water Removed: 1.70 Kg
28 Jul 14
Starting Weight: 101.7 Kg
Ending Weight: 99.2 Kg
Water Removed: 2.50 Kg
31 Jul 14
Starting Weight: 101.2 Kg
Ending Weight: 99.6 Kg
Water Removed: 1.60 Kg
02 Aug 14
Starting Weight: 102.1 Kg
Ending Weight: 99.2 Kg
Water Removed: 2.90 Kg
05 Aug 14
Starting Weight: 103.7 Kg
Ending Weight: 100.5 Kg
Water Removed: 3.20 Kg
07 Aug 14
Starting Weight: 101.2 Kg
Ending Weight: 99.2 Kg
Water Removed: 2.00 Kg
09 Aug 14
Starting Weight: 99.3 Kg
Ending Weight: 99.4 Kg
Water Removed: +0.10 Kg
11 Ag 14 thru 14 Aug 14
(In Hospital with C-Diff Infection.
Dialysis done in-house.
No numbers)
16 Aug 14
Starting Weight: 100.2 Kg
Ending Weight: 99.3 Kg
Water Removed: 0.90 Kg
19Aug 14
Starting Weight: 102.6 Kg
Ending Weight: 100.3 Kg
Water Removed: 2.30 Kg
21 Aug 14
Starting Weight: 102.6 Kg
Ending Weight: 99.3 Kg
Water Removed: 3.30 Kg
23 Aug 14
Starting Weight: 102.1 Kg
Ending Weight: 99.3 Kg
Water Removed: 2.80 Kg
26 Aug 14
Starting Weight: 103.6 Kg
Ending Weight: 100.3 Kg
Water Removed: 3.30 Kg
28 Aug 14
Starting Weight: 102.6 Kg
Ending Weight: 99.4 Kg
Water Removed: 3.20 Kg
30 Aug 14
Starting Weight: 101.2 Kg
Ending Weight: 99.5 Kg
Water Removed: 1.70 Kg
02 Sep 14
Starting Weight: 103.3 Kg
Ending Weight: 100.3 Kg
Water Removed: 3.00 Kg
04 Sep 14
Starting Weight: 102.7 Kg
Ending Weight: 99.8 Kg
Water Removed: 2.90 Kg
06 Sep 14
Starting Weight: 102.1 Kg
Ending Weight: 99.3 Kg
Water Removed: 2.80 Kg
09 Sep 14
Starting Weight: 101.8 Kg
Ending Weight: 99.5 Kg
Water Removed: 2.30 Kg
For the most part, my weights have remained steady. I had hoped to reduce my dry weight by now, but following my hospitalization, I have been experiencing a lot of cramps during treatment, and for the next day, as well. So, the dry weight reduction is holing until the cramps desist. Ultimately, I want to be at 99.00 Kg, which should be about as low as I can healthily be.
What else...It's been since my July entry that I've done a written blog, an aside from the video I posted (which was mostly about the C-Diff hospitalization), so I am trying to remember everything I need to write...
Following the hospital stay, I was physically drained far more than even I thought. I did very little moving around for about two weeks after getting back home. Add in the continued soft stools I was having due to the antibiotic Flagyl, plus my normal dialysis sessions, and my energy was kaput.
I continued to eat very poorly until sometime in early September. I just had no appetite, and food was pretty much tasteless. Since my appetite improved I am definitely eating more; though food is still tasteless, and is something I'm doing simply because I need to. Most foods are unappetizing, as well, so unfortunately, eating has become a bit of a chore. Most days I am skipping breakfast, or lunch...or both, and only reluctantly eat dinner. Even when I cook, I just don't eat much. I know this will change, so I am biding my time until food actually starts looking and tasting good once again.
Following the schedule of the Flagyl, I had a retest for the C-Diff--which was at the request of the Transplant Committee. I won't go into the test because it is rather...revolting; but let's just tell you that it came back as clear! The results were passed on to the Committee. So, the unofficial hold on my transplant status is now removed, and I am fully eligible to get a kidney once again.
Speaking of the transplant...
I had informed my potential donor that the C-Diff test came back negative, and she told me that she was still in the testing phase, and was glad to receive my news. She also reiterated that she is committed to going through with the donation, if she is cleared.
GREAT news!!
...I suddenly forgot what else I wanted to discuss, so I'll wrap this up.
I want to express my thanks once again for all of the support I've received this past month. Knowing that others care so much lifted my burden, and I was better able to handle everything I was going through.
I'll make my next entry sooner than later...promise!
Good Health to All!
ScottW
We'll start with my most recent lab draws:
*Albumin (19 Aug): 3.40 g/dL (-0.60 g/dL from 20 May)
(A measure of Protein in the blood) NR (Normal Range) 4.0 g/dL or Higher
*Hemoglobin (02 Sep): 10.20 G/dL (+0.20 G/dL from 03 Jun)
(A Measure of Anemia)
*Ca Corrected (02 Sep): 9.50 mg/dL (-0.20 mg/dL from 03 Jun)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL
*Phosphorous (02 Sep): 5.30 mg/dL (-0.40 mg/dL from 03 Jun)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL
*PTH Intact (26 Aug): 254 pg/mL (-1.00 pg/mL from 20 May)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL
*K+ (02 Sep): 5.70 mEq/L (-0.70 mEq/L from 03 Jun)
(Proper potassium levels keep your nerves and muscles working well) NR 3.5 to 5.5 mEq/L
*spKdt/V Dialysis (02 Sep): 1.13 (-0.11 from 03 Jun)
(A measure of the effectiveness of dialysis and blood filtering.) NR 1.20 or Higher
Since my recent hospitalization, the Phosphorous and Potassium numbers have improved, as has the effectiveness of the dialysis. For the low Albumin, the clinic dietitian has put me on a regimen of 2 oz of Liquicel following treatment. Liquicel is a protein enhanced, vitamin rich liquid that will help dialysis patients keep their numbers in line. From what I understand, it is common for patients with no kidneys (like me!) to need this added supplement to keep their protein intake at it's minimal level. The Liquicel is thick, sugary and hits the stomach hard, but a swallow of water helps dilute it.
Dialysis Weights: (Just a few...)
19 Jul 14
Starting Weight: 101.6 Kg
Ending Weight: 99.6 Kg
Water Removed: 2.00 Kg
22 Jul 14
Starting Weight: 103.1 Kg
Ending Weight: 99.4 Kg
Water Removed: 3.70 Kg
24 Jul 14
Starting Weight: 101.1 Kg
Ending Weight: 99.3 Kg
Water Removed: 1.80 Kg
26 Jul 14
Starting Weight: 101.1 Kg
Ending Weight: 99.4 Kg
Water Removed: 1.70 Kg
28 Jul 14
Starting Weight: 101.7 Kg
Ending Weight: 99.2 Kg
Water Removed: 2.50 Kg
31 Jul 14
Starting Weight: 101.2 Kg
Ending Weight: 99.6 Kg
Water Removed: 1.60 Kg
02 Aug 14
Starting Weight: 102.1 Kg
Ending Weight: 99.2 Kg
Water Removed: 2.90 Kg
05 Aug 14
Starting Weight: 103.7 Kg
Ending Weight: 100.5 Kg
Water Removed: 3.20 Kg
07 Aug 14
Starting Weight: 101.2 Kg
Ending Weight: 99.2 Kg
Water Removed: 2.00 Kg
09 Aug 14
Starting Weight: 99.3 Kg
Ending Weight: 99.4 Kg
Water Removed: +0.10 Kg
11 Ag 14 thru 14 Aug 14
(In Hospital with C-Diff Infection.
Dialysis done in-house.
No numbers)
16 Aug 14
Starting Weight: 100.2 Kg
Ending Weight: 99.3 Kg
Water Removed: 0.90 Kg
19Aug 14
Starting Weight: 102.6 Kg
Ending Weight: 100.3 Kg
Water Removed: 2.30 Kg
21 Aug 14
Starting Weight: 102.6 Kg
Ending Weight: 99.3 Kg
Water Removed: 3.30 Kg
23 Aug 14
Starting Weight: 102.1 Kg
Ending Weight: 99.3 Kg
Water Removed: 2.80 Kg
26 Aug 14
Starting Weight: 103.6 Kg
Ending Weight: 100.3 Kg
Water Removed: 3.30 Kg
28 Aug 14
Starting Weight: 102.6 Kg
Ending Weight: 99.4 Kg
Water Removed: 3.20 Kg
30 Aug 14
Starting Weight: 101.2 Kg
Ending Weight: 99.5 Kg
Water Removed: 1.70 Kg
02 Sep 14
Starting Weight: 103.3 Kg
Ending Weight: 100.3 Kg
Water Removed: 3.00 Kg
04 Sep 14
Starting Weight: 102.7 Kg
Ending Weight: 99.8 Kg
Water Removed: 2.90 Kg
06 Sep 14
Starting Weight: 102.1 Kg
Ending Weight: 99.3 Kg
Water Removed: 2.80 Kg
09 Sep 14
Starting Weight: 101.8 Kg
Ending Weight: 99.5 Kg
Water Removed: 2.30 Kg
For the most part, my weights have remained steady. I had hoped to reduce my dry weight by now, but following my hospitalization, I have been experiencing a lot of cramps during treatment, and for the next day, as well. So, the dry weight reduction is holing until the cramps desist. Ultimately, I want to be at 99.00 Kg, which should be about as low as I can healthily be.
What else...It's been since my July entry that I've done a written blog, an aside from the video I posted (which was mostly about the C-Diff hospitalization), so I am trying to remember everything I need to write...
Following the hospital stay, I was physically drained far more than even I thought. I did very little moving around for about two weeks after getting back home. Add in the continued soft stools I was having due to the antibiotic Flagyl, plus my normal dialysis sessions, and my energy was kaput.
I continued to eat very poorly until sometime in early September. I just had no appetite, and food was pretty much tasteless. Since my appetite improved I am definitely eating more; though food is still tasteless, and is something I'm doing simply because I need to. Most foods are unappetizing, as well, so unfortunately, eating has become a bit of a chore. Most days I am skipping breakfast, or lunch...or both, and only reluctantly eat dinner. Even when I cook, I just don't eat much. I know this will change, so I am biding my time until food actually starts looking and tasting good once again.
Following the schedule of the Flagyl, I had a retest for the C-Diff--which was at the request of the Transplant Committee. I won't go into the test because it is rather...revolting; but let's just tell you that it came back as clear! The results were passed on to the Committee. So, the unofficial hold on my transplant status is now removed, and I am fully eligible to get a kidney once again.
Speaking of the transplant...
I had informed my potential donor that the C-Diff test came back negative, and she told me that she was still in the testing phase, and was glad to receive my news. She also reiterated that she is committed to going through with the donation, if she is cleared.
GREAT news!!
...I suddenly forgot what else I wanted to discuss, so I'll wrap this up.
I want to express my thanks once again for all of the support I've received this past month. Knowing that others care so much lifted my burden, and I was better able to handle everything I was going through.
I'll make my next entry sooner than later...promise!
Good Health to All!
ScottW
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