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
Sunday, September 21, 2014
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
Wednesday, September 3, 2014
UNOS Newletter
I received the following newsletter from UNOS (United Network of Organ Sharing), the governing body for transplant lists and organization:
| August 2014 | ||||
 | ||||
 | ||||
Liver public forum agenda and webinar registration now available >
The OPTN/UNOS Liver and Intestinal Organ Transplantation Committee is sponsoring a forum to discuss concepts intended to increase equity in access to liver transplantation.
UNOS Researchers Present Studies at World Transplant Congress >
United Network for Organ Sharing (UNOS) staff members authored and will present several studies at the World Transplant Congress (WTC), held July 26-31 at the Moscone West Convention Center.
100th living donor kidney transplant arranged through OPTN/UNOS Kidney Paired Donation Pilot Program >
A series of three living donor kidney transplants performed July 7, 2014, marked the 98th, 99th and 100th that were arranged through the OPTN/UNOS Kidney Paired Donation Pilot Program (KPDPP).
People you should know >
It's important that you know about each member of your transplant team and how they can help you. | ||||
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