Some news, as well as a long overdue update...
News #1--I have heard from the person who would like to donate a kidney to me, and she has already contacted my Transplant Coordinator, and has received and filled out the preliminary questionnaire. The person also must have a weeks worth of daily BP readings, which she is doing, too.
News #2--The effectiveness of my dialysis Tx's took a dive and have remained poor over the last week+. As a result, I am going to see a vascular surgeon next week for a Fistulagram--a test that will show how well the upper fistula (above the button holes) is able to perfuse. Assuming the test shows reduced flow capability, I will likely have to have a balloon expansion of the vessels in my upper arm. As soon as I know what's happening, I will pass the info along.
Dialysis Weights:
26 Jun 14
Starting Weight: 102.5 Kg
Ending Weight: 99.2 Kg
Water Removed: 3.30 Kg
28 Jun 14
Starting Weight: 102.0 Kg
Ending Weight: 99.2 Kg
Water Removed: 2.80 Kg
01 Jul 14
Starting Weight: 102.6 Kg
Ending Weight: 99.3 Kg
Water Removed: 3.30 Kg
03 Jul 14
Starting Weight: 101.7 Kg
Ending Weight: 99.9 Kg
Water Removed: 1.80 Kg
05 Jul 14
Starting Weight: 102.2 Kg
Ending Weight: 99.6 Kg
Water Removed: 2.60 Kg
08 Jul 14
Starting Weight: 101.5 Kg
Ending Weight: 99.4 Kg
Water Removed: 2.10 Kg
10 Jul 14
Starting Weight: 100.8 Kg
Ending Weight: 99.3 Kg
Water Removed: 1.50 Kg
12 Jul 14
Starting Weight: 101.9 Kg
Ending Weight: 99.2 Kg
Water Removed: 2.70 Kg
15 Jul 14
Starting Weight: 102.4 Kg
Ending Weight: 99.4 Kg
Water Removed: 3.00 Kg
17 Jul 14
Starting Weight: 100.8 Kg
Ending Weight: 99.6 Kg
Water Removed: 1.20 Kg
Most of these entry numbers are showing low weight gains...which is good. However, the reason for the low weight gains is NOT--the aforementioned poor dialyzing effectiveness. Let me show you my latest lab numbers...
*Albumin (17 Jun): 4.10 g/dL (+0.10 g/dL from 20 May)
(A measure of Protein in the blood) NR (Normal Range) 4.0 g/dL or Higher
*Hemoglobin (08 Jul): 10.30 g/dL (+0.30 g/dL from 03 Jun)
(A Measure of Anemia)
*Ca Corrected (08 Jul): 9.40 mg/dL (-0.30 mg/dL from 03 Jun)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL
*Phosphorous (12 Jul): 7.80 mg/dL (+2.10mg/dL from 03 Jun)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL
*PTH Intact (17 Jun: 229 pg/mL (-26 pg/mL from 20 May)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL
*K+ (15 Jul): 6.30 mEq/L (+0.20 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 (08 Jul): 0.88 (-0.36 from 03 Jun)
(A measure of the effectiveness of dialysis and blood filtering.) NR 1.20 or Higher
On the spKdt/V, that drop in effectiveness (which is .32 below the minimum level) has caused an ongoing issue with intense, unremitting nausea. I am on Zofran, the hardcore anti-emetic, twenty four hours a day...and it is only about 50% effective at reducing this nausea. As a result my appetite is poor, my fluid intake is way down, and my weight gains minimal. I guess that's what happens when the gunk isn't getting properly filtered fro my body. Woo-Hoo... :o(
Because of this nausea, I am rarely getting a good bit of uninterrupted sleep. Most nights I awaken after a couple of hours and spend the next hour or so next to the toilet. Sometimes I throw up, other times not. In every case, I am miserable. That never changes with what's going on. Assuming I get that vessel expansion, we should see immediate improvement in my labs, and in how I feel from day to day.
I am growing a little stronger. Recently, my wife was given a trip to Florida to get away from my health for a week. I encouraged her to go because I can drive a little now, and can generally care for myself. She took that trip, and I drove myself to dialysis for the first time. I had no issues.
I am now able to drive because the vertigo I've had for the past few years has decreased significantly. Turning my head no longer triggers the dizziness, and my road awareness has increased, as well. I still can't drive any long distances, but around twenty miles, or 30 minutes my maximum. It's a definite improvement!
As of 10 July, I have been on dialysis exactly two years. (It doesn't seem like that much time has passed!) My time on the active waiting list is now going on twenty one months. We'll see which gets here first...THE call, or a donation.
That's all I've got for today. I will keep you updated with the news as soon as I get it myself. So be looking for brief updates!
Good Health to All!
ScottW
Friday, July 18, 2014
Monday, July 14, 2014
NEWS!
A rather sizeable piece of news to pass on...
This afternoon, out of the blue, I was on the receiving end of an offer for a LIVING Donor!
No, I do NOT know this person. She is a friend of a close friend who knows all about my situation and after they spoke about me, she offered to donate. No one asked her to; she just offered.
So, after I was contacted by my friend, I passed along the relevant info. The young lady who is offering will be contacting my Transplant Coordinator tomorrow.
I should know something this week...I hope!
As soon as I know anything, I will post it here...So be looking!
VERY EXCITING!!!
ScottW
This afternoon, out of the blue, I was on the receiving end of an offer for a LIVING Donor!
No, I do NOT know this person. She is a friend of a close friend who knows all about my situation and after they spoke about me, she offered to donate. No one asked her to; she just offered.
So, after I was contacted by my friend, I passed along the relevant info. The young lady who is offering will be contacting my Transplant Coordinator tomorrow.
I should know something this week...I hope!
As soon as I know anything, I will post it here...So be looking!
VERY EXCITING!!!
ScottW
Wednesday, June 25, 2014
25 June 2014
Too long--once again--between my posts. My apologies. Let's get to it...
Dialysis Weights:
07 Jun 14
Starting Weight: 102.6 Kg
Ending Weight: 99.4 Kg
Water Removed: 3.20 Kg
10 Jun 14
Starting Weight: 103.7 Kg
Ending Weight: 99.6 Kg
Water Removed: 3.10 Kg
12 Jun 14
Starting Weight: 102.6 Kg
Ending Weight: 100.5 kg
Water Removed: 2.10 Kg
15 Jun 14
Starting Weight: 102.9 Kg
Ending Weight: 99.4 Kg
Water Removed: 3.50 Kg
17 Jun 14
Starting Weight: 103.5 Kg
Ending Weight: 99.4 Kg
Water Removed: 4.10 Kg
19 Jun 14
Starting Weight: 101.9 Kg
Ending Weight: 99.6 Kg
Water Removed: 2.30 Kg
21 Jun 14
Starting Weight: 102.6 Kg
Ending Weight: 99.1 Kg
Water Removed: 3.50 kg
24 Jun 14
Starting Weight: 102.6 Kg
Ending Weight: 99.4 Kg
Water Removed: 3.20 Kg
Yet again, my weights are under control. The one day where I ended over my dry weight was due to an input error by the Tech, when they were setting up my daily draw for the dialysis machine.
The Head Nurse decided to start a new top button hole. The old one is just below the collapsed part of the fistula, and we've been waiting for the ancillary veins around that to grow and strengthen. So, for six months we've waited patiently; and now, it's time for a new top-site.
Anyhow, the Nurse got the new sharps stick (an actual sharp needle), and on the next Tx, the Tech who canulated saw good flashback, but the vein popped and I had a hematoma the size of a golf ball on my arm. The new site was abandoned, and the old button hole was used instead. That was two weeks ago. In yesterday's Tx, the same Nurse tried the sharps stick again, and got it. We'll [hopefully] do the same on Thursday. After eight or so Tx's, the sharps needle should no longer be needed, and we'll go to the blunt needle, instead. We'll see if I have any more problems with the new site pretty quickly.
I do have a nice yellow bruise on my arm from that hematoma. It never turned into something nasty looking, though; which was a bit of a disappointment...At least I could have a gnarly bruise from this, right? :o)
(I'll try to remember to take a picture of the new site while I'm on dialysis tomorrow!)
Because my K+ and Phosphorous have been high, I've had lots of lab draws to check on both. Since my last blog my K+ has dropped from 6.1 to 5.3, which is within the acceptable range. The Phosphorous continues bouncing all over the place going from 5.7 in early June to 6.6 today.
Both numbers are the result of mi increased time on the dialyzer. I am now going for 4.5 hours each Tx, and the results are improving. My spKdt/V is better, too; as is the Albumin.
My next labs will be coming up on the first Tuesday in July, so we'll have a total picture on the new dialysis times then.
In other news, my healing is coming along. I am starting to drive again---awesome! I can do this because the nausea is down, the vertigo is way down, and my mental acuity is greatly improved. In fact, my wife is out of town for a week, and I am driving myself to dialysis while she's gone! (Just a touch better, eh?)
Also, my sleep is getting better as far as quality. I am sleeping about eight solid hours, while taking a few naps each day. Plus, my dreams remain completely in my control. This is a sure sign that I am doing better, mentally.
The physical strength side of things is still really low, but it is definitely better. I have pretty much zero stamina, but I am walking better, faster, and don't lean on my cane nearly as much as just a few weeks ago.
I am still having a constant issue with nausea. While I'm not throwing up every day, I still get awoken with intense nausea, and have days when I can't get away from feeling terribly sick; but overall, the nausea is getting better and better. Any time I can get away from feeling so terrible, is a very good thing!
That's all I can think of today. With the Fourth of July coming up it may be sometime before I get my next entry done; so be patient...I'll get to it!
Good Health to All!
ScottW
Dialysis Weights:
07 Jun 14
Starting Weight: 102.6 Kg
Ending Weight: 99.4 Kg
Water Removed: 3.20 Kg
10 Jun 14
Starting Weight: 103.7 Kg
Ending Weight: 99.6 Kg
Water Removed: 3.10 Kg
12 Jun 14
Starting Weight: 102.6 Kg
Ending Weight: 100.5 kg
Water Removed: 2.10 Kg
15 Jun 14
Starting Weight: 102.9 Kg
Ending Weight: 99.4 Kg
Water Removed: 3.50 Kg
17 Jun 14
Starting Weight: 103.5 Kg
Ending Weight: 99.4 Kg
Water Removed: 4.10 Kg
19 Jun 14
Starting Weight: 101.9 Kg
Ending Weight: 99.6 Kg
Water Removed: 2.30 Kg
21 Jun 14
Starting Weight: 102.6 Kg
Ending Weight: 99.1 Kg
Water Removed: 3.50 kg
24 Jun 14
Starting Weight: 102.6 Kg
Ending Weight: 99.4 Kg
Water Removed: 3.20 Kg
Yet again, my weights are under control. The one day where I ended over my dry weight was due to an input error by the Tech, when they were setting up my daily draw for the dialysis machine.
The Head Nurse decided to start a new top button hole. The old one is just below the collapsed part of the fistula, and we've been waiting for the ancillary veins around that to grow and strengthen. So, for six months we've waited patiently; and now, it's time for a new top-site.
Anyhow, the Nurse got the new sharps stick (an actual sharp needle), and on the next Tx, the Tech who canulated saw good flashback, but the vein popped and I had a hematoma the size of a golf ball on my arm. The new site was abandoned, and the old button hole was used instead. That was two weeks ago. In yesterday's Tx, the same Nurse tried the sharps stick again, and got it. We'll [hopefully] do the same on Thursday. After eight or so Tx's, the sharps needle should no longer be needed, and we'll go to the blunt needle, instead. We'll see if I have any more problems with the new site pretty quickly.
I do have a nice yellow bruise on my arm from that hematoma. It never turned into something nasty looking, though; which was a bit of a disappointment...At least I could have a gnarly bruise from this, right? :o)
(I'll try to remember to take a picture of the new site while I'm on dialysis tomorrow!)
Because my K+ and Phosphorous have been high, I've had lots of lab draws to check on both. Since my last blog my K+ has dropped from 6.1 to 5.3, which is within the acceptable range. The Phosphorous continues bouncing all over the place going from 5.7 in early June to 6.6 today.
Both numbers are the result of mi increased time on the dialyzer. I am now going for 4.5 hours each Tx, and the results are improving. My spKdt/V is better, too; as is the Albumin.
My next labs will be coming up on the first Tuesday in July, so we'll have a total picture on the new dialysis times then.
In other news, my healing is coming along. I am starting to drive again---awesome! I can do this because the nausea is down, the vertigo is way down, and my mental acuity is greatly improved. In fact, my wife is out of town for a week, and I am driving myself to dialysis while she's gone! (Just a touch better, eh?)
Also, my sleep is getting better as far as quality. I am sleeping about eight solid hours, while taking a few naps each day. Plus, my dreams remain completely in my control. This is a sure sign that I am doing better, mentally.
The physical strength side of things is still really low, but it is definitely better. I have pretty much zero stamina, but I am walking better, faster, and don't lean on my cane nearly as much as just a few weeks ago.
I am still having a constant issue with nausea. While I'm not throwing up every day, I still get awoken with intense nausea, and have days when I can't get away from feeling terribly sick; but overall, the nausea is getting better and better. Any time I can get away from feeling so terrible, is a very good thing!
That's all I can think of today. With the Fourth of July coming up it may be sometime before I get my next entry done; so be patient...I'll get to it!
Good Health to All!
ScottW
Friday, June 6, 2014
06 June 2014
First off, Today is June 6th, and it is the 70th Anniversary of Operation Overlord; the day Allied forces breached Fortress Europe; the day the end of the European side of WWII began. Many brave men--on all sides-- lost their lives that day on the five beaches of Normandy.
It is our duty to remember these men from the Greatest Generation who so bravely, selflessly waded ashore under a terrifying storm of bullets and cannon fire in order to begin the liberation of France, Belgium and so many other nations. Many of our finest young men failed to return to their families; though their sacrifice will never be forgotten.
Every year I offer a prayer of thanks to these gallant men who paid the ultimate price for our freedom.
As always, my thanks are but few words and feeble; while your sacrifice was extraordinary.
Thank You.
--------------------------------------------------------------------------------------------------------------
Now, after that incredibly important note, let's get on with the latest blog...
Dialysis Weights:
29 May 14
Starting Weight: 102.1 Kg
Ending Weight: 99.4 Kg
Water Removed: 2.70 Kg
31 May 14
Starting Weight: 101.9 Kg
Ending Weight: 99.2 Kg
Water Removed: 2.70 Kg
03 Jun 14
Starting Weight: 103.9 Kg
Ending Weight: 99.4 Kg
Water Removed: 4.50 Kg
05 Jun 14
Starting Weight: 101.9 Kg
Ending Weight: 99.3 Kg
Water Removed: 2.60 Kg
Great weights going into, and great weights afterwards. I seem to have control of my water gains, and my body isn't giving back too much. This is good. It's looking like my body is finally recovered from my surgery back in November--(It's been THAT long ago?!)--as the wide swings in weight are gone, and I haven't had any fluid buildup in my lungs in several months.
Plus, my sleep is deeper, my energy is a little better, and I am feeling a little better every day. In fact, I haven't had any vomiting now in almost three weeks. The constant nausea is decreased, my headache is not as intense, and I've had several people remark to myself (or my wife) how much better I'm looking from the pre-surgery days. I'll take those comments any day of the week!
On the other hand, healing is slow, as is my overall progress. This frustrates me every so often; but I remind myself that I had major surgery, am still on dialysis three times a week, and have no kidneys. This is going to take time.
Good news...
After speaking with a Clinic doc yesterday, I am cutting my Atenolol in half once again. Why? Because, after more than three weeks since initially halving my daily dose--enough time to drop the therapeutic level to its current dose--my BP is better than great. I went into yesterday's dialysis with a 113/75 BP. My exit BP was 100/83.
So, the Atenolol, still at 1 dose/day, is down to 25 total mg. In a few weeks, if my BP continues to be stable and low, we may cut the Atenolol out all together.
Labs were drawn on Tuesday, and I have all the latest:
*Albumin (20 May): 4.00 g/dL (+0.20 g/dL from 22 Apr)
(A measure of Protein in the blood) NR (Normal Range) 4.0 g/dL or Higher
*Hemoglobin (03 Jun): 10.00 g/dL (-1.20 g/dL from 06 May)
(A Measure of Anemia)
*Ca Corrected (03 Jun): 9.70 mg/dL (-1.00 mg/dL from 06 May)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL
*Phosphorous (03 Jun): 5.70 mg/dL (-2.20 mg/dL from 06 May)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL
*PTH Intact (20 May): 255 pg/mL (+104 pg/mL from 22 Apr)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL
*K+ (03 Jun): 6.10 mEq/L (+0.50 mEq/L from 06 May)
(Proper potassium levels keep your nerves and muscles working well) NR 3.5 to 5.5 mEq/L
*spKdt/V Dialysis (03 Jun): 1.24 (-0.20 from 06 May)
(A measure of the effectiveness of dialysis and blood filtering.) NR 1.20 or Higher
The phosphorous drop is huge, so the Nutritionist has ordered another draw tomorrow to verify this number. If it holds up, the GREAT! I've been working on this, and my efforts paid off. If the number rebounds higher, then I still have lots more work to do.
The Potassium (K+) remains elevated in spite of my cutting out the obvious sources of potassium altogether. I will continue trying to find potassium in my foods and eliminate those, as well.
After I was finished with my dialysis yesterday, one of the buttonhole clots popped, and I was bleeding all over the place. Luckily I hadn't left the clinic, so I immediately clamped my hand over the buttonhole, and called for a nurse. They came over, cleaned me up and put fresh bandages on the sites; after which I held for another twenty minutes, then let it sit another ten beyond that before I headed out.
Any time a clot pops on you, immediately apply pressure to the site. If you leave it, you could, with the proper amount of time, Exsanguinate--bleed out. I don't care if you're squeamish around blood--you put one hand on that site, and THEN get a nurse. Stopping the blood is more important than anything!
Alright, that's all I've got for today.
Have a great week! May it be successful and filled with all that you need.
Good Health to All!
ScottW
It is our duty to remember these men from the Greatest Generation who so bravely, selflessly waded ashore under a terrifying storm of bullets and cannon fire in order to begin the liberation of France, Belgium and so many other nations. Many of our finest young men failed to return to their families; though their sacrifice will never be forgotten.
Every year I offer a prayer of thanks to these gallant men who paid the ultimate price for our freedom.
As always, my thanks are but few words and feeble; while your sacrifice was extraordinary.
Thank You.
--------------------------------------------------------------------------------------------------------------
Now, after that incredibly important note, let's get on with the latest blog...
Dialysis Weights:
29 May 14
Starting Weight: 102.1 Kg
Ending Weight: 99.4 Kg
Water Removed: 2.70 Kg
31 May 14
Starting Weight: 101.9 Kg
Ending Weight: 99.2 Kg
Water Removed: 2.70 Kg
03 Jun 14
Starting Weight: 103.9 Kg
Ending Weight: 99.4 Kg
Water Removed: 4.50 Kg
05 Jun 14
Starting Weight: 101.9 Kg
Ending Weight: 99.3 Kg
Water Removed: 2.60 Kg
Great weights going into, and great weights afterwards. I seem to have control of my water gains, and my body isn't giving back too much. This is good. It's looking like my body is finally recovered from my surgery back in November--(It's been THAT long ago?!)--as the wide swings in weight are gone, and I haven't had any fluid buildup in my lungs in several months.
Plus, my sleep is deeper, my energy is a little better, and I am feeling a little better every day. In fact, I haven't had any vomiting now in almost three weeks. The constant nausea is decreased, my headache is not as intense, and I've had several people remark to myself (or my wife) how much better I'm looking from the pre-surgery days. I'll take those comments any day of the week!
On the other hand, healing is slow, as is my overall progress. This frustrates me every so often; but I remind myself that I had major surgery, am still on dialysis three times a week, and have no kidneys. This is going to take time.
Good news...
After speaking with a Clinic doc yesterday, I am cutting my Atenolol in half once again. Why? Because, after more than three weeks since initially halving my daily dose--enough time to drop the therapeutic level to its current dose--my BP is better than great. I went into yesterday's dialysis with a 113/75 BP. My exit BP was 100/83.
So, the Atenolol, still at 1 dose/day, is down to 25 total mg. In a few weeks, if my BP continues to be stable and low, we may cut the Atenolol out all together.
Labs were drawn on Tuesday, and I have all the latest:
*Albumin (20 May): 4.00 g/dL (+0.20 g/dL from 22 Apr)
(A measure of Protein in the blood) NR (Normal Range) 4.0 g/dL or Higher
*Hemoglobin (03 Jun): 10.00 g/dL (-1.20 g/dL from 06 May)
(A Measure of Anemia)
*Ca Corrected (03 Jun): 9.70 mg/dL (-1.00 mg/dL from 06 May)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL
*Phosphorous (03 Jun): 5.70 mg/dL (-2.20 mg/dL from 06 May)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL
*PTH Intact (20 May): 255 pg/mL (+104 pg/mL from 22 Apr)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL
*K+ (03 Jun): 6.10 mEq/L (+0.50 mEq/L from 06 May)
(Proper potassium levels keep your nerves and muscles working well) NR 3.5 to 5.5 mEq/L
*spKdt/V Dialysis (03 Jun): 1.24 (-0.20 from 06 May)
(A measure of the effectiveness of dialysis and blood filtering.) NR 1.20 or Higher
The phosphorous drop is huge, so the Nutritionist has ordered another draw tomorrow to verify this number. If it holds up, the GREAT! I've been working on this, and my efforts paid off. If the number rebounds higher, then I still have lots more work to do.
The Potassium (K+) remains elevated in spite of my cutting out the obvious sources of potassium altogether. I will continue trying to find potassium in my foods and eliminate those, as well.
After I was finished with my dialysis yesterday, one of the buttonhole clots popped, and I was bleeding all over the place. Luckily I hadn't left the clinic, so I immediately clamped my hand over the buttonhole, and called for a nurse. They came over, cleaned me up and put fresh bandages on the sites; after which I held for another twenty minutes, then let it sit another ten beyond that before I headed out.
Any time a clot pops on you, immediately apply pressure to the site. If you leave it, you could, with the proper amount of time, Exsanguinate--bleed out. I don't care if you're squeamish around blood--you put one hand on that site, and THEN get a nurse. Stopping the blood is more important than anything!
Alright, that's all I've got for today.
Have a great week! May it be successful and filled with all that you need.
Good Health to All!
ScottW
Friday, May 30, 2014
UNOS News at Transplant Living
Here is the latest newsletter from Transplant Living--a division of UNOS (United Network of Organ Sharing). It has some great info in it, so please take some time to read through.
Thanks!
ScottW
Thanks!
ScottW
Transplant immunosuppressant drugs to remain a Medicare Part D benefit >
CMS announced that it would retain the existing “protected class” status for immunosuppressant medications available as a benefit under Medicare Part D coverage.
Average Daily Organ Placement On The Rise >
During April, staff of the UNOS Organ Center helped the transplant community place an average of 38.5 organs per day—an all-time monthly record..
OPTN/UNOS leadership briefs Congressional staff members on key policy issues >
On May 21, UNOS Chief Executive Officer Brian Shepard and chairs of three OPTN/UNOS committees briefed staff members of the Congress of the United States on policy issues under discussion or implementation.
Infections and immunity >
There are three general time frames during which infection can occur in the post-transplant period: first month, second through sixth month, and after the sixth month.
Urine test improves detection of alcohol use in liver transplant patients >
When used together, urinary ethyl glucuronide (uEtG) and the Alcohol Use Disorders Identification Test for alcohol consumption (AUDIT-c) improve the detection of alcohol consumption in liver transplant candidates and recipients, according to a recent study.
Transplant immunosuppressant sirolimus may reduce HIV persistence >
HIV persistence is reduced in association with immunosuppressants, especially sirolimus, used after kidney transplantation, according to results from the Solid Organ Transplantation in HIV: Multi-Site Study. |
Wednesday, May 28, 2014
28 May 2014
See? What did I tell you?
I said that time is just zooming by; and here it is a full twenty days since my last posting! Even though I didn't sleep last night, I can't let this go one more day...
Dialysis Weights:
10 May 14
Starting Weight: 103.5 Kg
Ending Weight: 99.6 Kg
Water Removed: 3.90 Kg
13 May 14
Starting Weight: 105.4 Kg
Ending Weight: 100.7 Kg
Water Removed: 4.70 Kg
15 May 14
Starting Weight: 103.5 Kg
Ending Weight: 98.8 Kg
Water Removed: 4.70 Kg
17 May 14
Starting Weight: 102.5 Kg
Ending Weight: 99.9 Kg
Water Removed: 2.60 Kg
20 May 14
Starting Weight: 103.0 Kg
Ending Weight: 99.4 Kg
Water Removed: 3.60 Kg
22 May 14
Starting Weight: 101.6 Kg
Ending Weight: 99.1 Kg
Water Removed: 2.50 Kg
24 May 14
Starting Weight: 102.0 Kg
Ending Weight: 98.8 Kg
Water Removed: 3.20 Kg
27 May 14
Starting Weight: 103.2 Kg
Ending Weight: 99.3 Kg
Water Removed: 3.90 Kg
Aside from the one post-weekend day, my entry weights have again remained consistent. At this stage of the game, 'consistency' is a very good thing! It means that I am controlling my fluids, controlling my food intake and getting at least a little exercise.
On the exit weights, I have obviously been giving back too much, at times. There isn't much of anything I can do about this as I have zero conscious control over how my body does during dialysis. Luckily, the cramping has been minimal. However, I have been dizzy on standing almost always; but this is also due to my low BP that is happening following each treatment (Tx).
And speaking of Blood Pressure...Last week, after meeting with my Nephrologist [during Tx], he took me off one half of my BP med--the Atenolol. So, at this point I am taking just 50 mg/day; even then my BP is still on the low side. It will take about three full weeks before the lower dosage can be properly gauged in its effectiveness as it takes that long for the higher dose to be eliminated from the body. In other words, the 'therapeutic level' must reduce to the current level of meds; and that simply takes time.
Right now, my avg BP entering dialysis is about 130/75. On exit it is 103/64. The top number is good; but the exit number is actually too low. That is why the med reduction happened. I need to have the exit number be a bit higher...somewhere in the 110/70-120/80 range. The dizziness I am having should stop once I achieve that.
Since my last update [on 09 May], I have run the gamut in how I have been feeling. There were a number of days in a row that saw me wake up and immediately go into the bathroom to throw up, then feel really lousy the rest of the day. I was keeping Zofran (anti-emetic) in my regularly for over a full week. Since then things have calmed down. I still get nauseated, but I haven't been vomiting in eight days now. As always, I will certainly take any small victories I can attain.
My sleep has been improving. I seem to be sleeping deeper, and all of my dreams are in my complete control. I'm still getting too much sleep; but I seem to be dragging less than just a couple of weeks ago.
My appetite has been awful. Most days I can barely taste food; and everything is just unappealing. I am often eating only because I need food in my body--which is discouraging because I need to eat lots of protein to remain as healthy as I can. Hopefully this is just part of the ebb and flow that my appetite has been going through. Time will tell.
That's all I have now. My lack of sleep is catching up to me, so I am going to go sleep in my recliner for a few hours.
Good Health to All!
ScottW
I said that time is just zooming by; and here it is a full twenty days since my last posting! Even though I didn't sleep last night, I can't let this go one more day...
Dialysis Weights:
10 May 14
Starting Weight: 103.5 Kg
Ending Weight: 99.6 Kg
Water Removed: 3.90 Kg
13 May 14
Starting Weight: 105.4 Kg
Ending Weight: 100.7 Kg
Water Removed: 4.70 Kg
15 May 14
Starting Weight: 103.5 Kg
Ending Weight: 98.8 Kg
Water Removed: 4.70 Kg
17 May 14
Starting Weight: 102.5 Kg
Ending Weight: 99.9 Kg
Water Removed: 2.60 Kg
20 May 14
Starting Weight: 103.0 Kg
Ending Weight: 99.4 Kg
Water Removed: 3.60 Kg
22 May 14
Starting Weight: 101.6 Kg
Ending Weight: 99.1 Kg
Water Removed: 2.50 Kg
24 May 14
Starting Weight: 102.0 Kg
Ending Weight: 98.8 Kg
Water Removed: 3.20 Kg
27 May 14
Starting Weight: 103.2 Kg
Ending Weight: 99.3 Kg
Water Removed: 3.90 Kg
Aside from the one post-weekend day, my entry weights have again remained consistent. At this stage of the game, 'consistency' is a very good thing! It means that I am controlling my fluids, controlling my food intake and getting at least a little exercise.
On the exit weights, I have obviously been giving back too much, at times. There isn't much of anything I can do about this as I have zero conscious control over how my body does during dialysis. Luckily, the cramping has been minimal. However, I have been dizzy on standing almost always; but this is also due to my low BP that is happening following each treatment (Tx).
And speaking of Blood Pressure...Last week, after meeting with my Nephrologist [during Tx], he took me off one half of my BP med--the Atenolol. So, at this point I am taking just 50 mg/day; even then my BP is still on the low side. It will take about three full weeks before the lower dosage can be properly gauged in its effectiveness as it takes that long for the higher dose to be eliminated from the body. In other words, the 'therapeutic level' must reduce to the current level of meds; and that simply takes time.
Right now, my avg BP entering dialysis is about 130/75. On exit it is 103/64. The top number is good; but the exit number is actually too low. That is why the med reduction happened. I need to have the exit number be a bit higher...somewhere in the 110/70-120/80 range. The dizziness I am having should stop once I achieve that.
Since my last update [on 09 May], I have run the gamut in how I have been feeling. There were a number of days in a row that saw me wake up and immediately go into the bathroom to throw up, then feel really lousy the rest of the day. I was keeping Zofran (anti-emetic) in my regularly for over a full week. Since then things have calmed down. I still get nauseated, but I haven't been vomiting in eight days now. As always, I will certainly take any small victories I can attain.
My sleep has been improving. I seem to be sleeping deeper, and all of my dreams are in my complete control. I'm still getting too much sleep; but I seem to be dragging less than just a couple of weeks ago.
My appetite has been awful. Most days I can barely taste food; and everything is just unappealing. I am often eating only because I need food in my body--which is discouraging because I need to eat lots of protein to remain as healthy as I can. Hopefully this is just part of the ebb and flow that my appetite has been going through. Time will tell.
That's all I have now. My lack of sleep is catching up to me, so I am going to go sleep in my recliner for a few hours.
Good Health to All!
ScottW
Friday, May 9, 2014
09 May 2014
It is amazing how fast time is passing between my posts. I think it's only been four or five days, when in reality, it's over ten. So let's get on with it...
Dialysis Weights:
26 Apr 14
Starting Weight: 103.9 Kg
Ending Weight: 100.0 Kg
Water Removed: 3.90 Kg
29 Apr 14
Starting Weight: 105.3 Kg
Ending Weight: 101.1 Kg
Water Removed: 4.20 Kg
01 May 14
Starting Weight: 105.3 Kg
Ending Weight: 100.5 Kg
Water Removed: 4.80 Kg
03 May 14
Starting Weight: 104.2 Kg
Ending Weight: 99.7 Kg
Water Removed: 4.50 Kg
06 May 14
Starting Weight: 103.6 Kg
Ending Weight: 99.9 Kg
Water Removed: 3.70 Kg
08 May 14
Starting Weight: 104.3 Kg
Ending Weight: 99.5 Kg
Water Removed: 4.80 Kg
As you can see, I began to lower my dry weight below 100 Kg. So far, the cramping has been minimal, but I have had frequent dizziness at home. As you lower your dry weight, your blood pressure naturally lowers, as well. Until your body compensates full-time, you will experience periods of dizziness when standing up. Most frequently these wobble-inducing drops in blood pressure happen upon standing from any sitting or supine position. Gravity, in this case, can be a serious issue; so if you experience dizziness on standing, lean against a wall, a chair or anything else that could help you stop yourself from falling to the ground. For me, the symptoms pass within five seconds, or so. If it goes on for what seems to be too long, tell your physician a/o clinic nurses. Getting your body past any serious drops in BP are vital, so be honest and forthright about anything you experience!
My latest labs are in. Some are good, others, not so much.
*Albumin (22 Apr): 3.80 g/dL (-0.60 g/dL from 17 Mar)
(A measure of Protein in the blood) NR (Normal Range) 4.0 g/dL or Higher
*Hemoglobin (06 May): 11.2 g/dL (+0.40 g/dL from 08 Apr)
(A Measure of Anemia)
*Ca Corrected (06 May): 9.80 mg/dL (+0.50 mg/dL from 08 Apr)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL
*Phosphorous (06 May): 7.90 mg/dL (+0.50 mg/dL from 08 Apr)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL
*PTH Intact (22 Apr): 151 pg/mL (-94 pg/mL from 17 Mar)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL
*K+ (06 May): 5.6 mEq/L (-0.20 mEq/L from 08 Apr)
(Proper potassium levels keep your nerves and muscles working well) NR 3.5 to 5.5 mEq/L
*spKdt/V Dialysis (06 May): 1.44 (-0.14 from 08 Apr)
(A measure of the effectiveness of dialysis and blood filtering.) NR 1.20 or Higher
There isn't much green on these labs! The Albumin drop is particularly concerning. This means that I am not getting sufficient protein in my body; which I need right now. With all the eggs and meats I am consuming, I will have to speak with my DaVita Nutritionist about getting that number up. If the low Albumin number continues, there will be effects in my muscles, heart, blood production, etc. I really don't want to find out what those effects are!
The Potassium (K+) has lowered to just above the top range. This is a definite improvement. I have accomplished this by cutting out the fruit juices, eliminating fresh fruits and tomatoes. (Sad face as more foods have to be left behind...)
However, the further rise in my Phosphorous is very troubling. I don't know how much more I can do to control this. I suppose there are always foods I can eliminate in order to achieve the desired range. I know that the Nutritionist will be speaking with me on Tuesday about this number. The number of Binders (Renvela) that I am taking has already increased; but it can always be upped again. I will keep you updated on this.
This past Sunday was a great day! I felt good when I awoke, and asked my wife if she wanted to go on a drive--which we did. We went to a nice park on the Provo River and enjoyed nature. It was the first time I felt up to a drive since before my Nephrectomy in November; so it had definitely been awhile. I greatly enjoyed the time out of the house, and I loved sitting and listening to the wind, the water and all the sounds of birds, puppies playing nearby, etc. It was extremely rejuvenating to my soul!
Then when Monday rolled around, it was the complete opposite. I awoke extremely nauseated, dry heaved for about twenty minutes, had numerous bouts of diarrhea, and, despite multiple doses of Zofran, was nauseated the entire day. It sucked! At least I had the memory of the previous day to help me through such a terrible day. Since then, I have been up and down. Mostly feeling lousy.
I saw my Nephrologist yesterday for my latest office visit. He really didn't have much to say because I am doing pretty well, overall. I follow physician orders, follow dialysis clinic guidelines, and actively work at home to ensure I am doing everything I can to be as healthy as I can possibly be. When you do all of that, you will not have too much to discuss with your doctor. And really, doing everything you can to ensure your best possible health--even under these circumstances--really isn't hard at all. You simply have to decide that this is what you'll do, and then you do it. Simple. Easy. Unfortunately, from what my Nephrologist tells me, my approach is definitely NOT the norm amongst his patients. They generally fight him on most aspects of their care, and their health suffers because of their adamant positions. Too bad; because it really IS easy to do what you have to! Being stubborn just isn't worth the consequences of not following instructions.
I had a friend offer her kidney this last week; but her blood type is incompatible with mine. She felt bad, but I assured her it was no big deal. Nothing has changed because she cannot donate. I really...REALLY appreciate the offer! It was a nice thought to know that someone was willing to do this for me.
And that's it. I am all done with this for today.
I am thinking of maybe doing some posts on video. Any thoughts? (Post them in the comments, if you do!)
Have a great week, everyone!
Good Health to All!
ScottW
Dialysis Weights:
26 Apr 14
Starting Weight: 103.9 Kg
Ending Weight: 100.0 Kg
Water Removed: 3.90 Kg
29 Apr 14
Starting Weight: 105.3 Kg
Ending Weight: 101.1 Kg
Water Removed: 4.20 Kg
01 May 14
Starting Weight: 105.3 Kg
Ending Weight: 100.5 Kg
Water Removed: 4.80 Kg
03 May 14
Starting Weight: 104.2 Kg
Ending Weight: 99.7 Kg
Water Removed: 4.50 Kg
06 May 14
Starting Weight: 103.6 Kg
Ending Weight: 99.9 Kg
Water Removed: 3.70 Kg
08 May 14
Starting Weight: 104.3 Kg
Ending Weight: 99.5 Kg
Water Removed: 4.80 Kg
As you can see, I began to lower my dry weight below 100 Kg. So far, the cramping has been minimal, but I have had frequent dizziness at home. As you lower your dry weight, your blood pressure naturally lowers, as well. Until your body compensates full-time, you will experience periods of dizziness when standing up. Most frequently these wobble-inducing drops in blood pressure happen upon standing from any sitting or supine position. Gravity, in this case, can be a serious issue; so if you experience dizziness on standing, lean against a wall, a chair or anything else that could help you stop yourself from falling to the ground. For me, the symptoms pass within five seconds, or so. If it goes on for what seems to be too long, tell your physician a/o clinic nurses. Getting your body past any serious drops in BP are vital, so be honest and forthright about anything you experience!
My latest labs are in. Some are good, others, not so much.
*Albumin (22 Apr): 3.80 g/dL (-0.60 g/dL from 17 Mar)
(A measure of Protein in the blood) NR (Normal Range) 4.0 g/dL or Higher
*Hemoglobin (06 May): 11.2 g/dL (+0.40 g/dL from 08 Apr)
(A Measure of Anemia)
*Ca Corrected (06 May): 9.80 mg/dL (+0.50 mg/dL from 08 Apr)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL
*Phosphorous (06 May): 7.90 mg/dL (+0.50 mg/dL from 08 Apr)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL
*PTH Intact (22 Apr): 151 pg/mL (-94 pg/mL from 17 Mar)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL
*K+ (06 May): 5.6 mEq/L (-0.20 mEq/L from 08 Apr)
(Proper potassium levels keep your nerves and muscles working well) NR 3.5 to 5.5 mEq/L
*spKdt/V Dialysis (06 May): 1.44 (-0.14 from 08 Apr)
(A measure of the effectiveness of dialysis and blood filtering.) NR 1.20 or Higher
There isn't much green on these labs! The Albumin drop is particularly concerning. This means that I am not getting sufficient protein in my body; which I need right now. With all the eggs and meats I am consuming, I will have to speak with my DaVita Nutritionist about getting that number up. If the low Albumin number continues, there will be effects in my muscles, heart, blood production, etc. I really don't want to find out what those effects are!
The Potassium (K+) has lowered to just above the top range. This is a definite improvement. I have accomplished this by cutting out the fruit juices, eliminating fresh fruits and tomatoes. (Sad face as more foods have to be left behind...)
However, the further rise in my Phosphorous is very troubling. I don't know how much more I can do to control this. I suppose there are always foods I can eliminate in order to achieve the desired range. I know that the Nutritionist will be speaking with me on Tuesday about this number. The number of Binders (Renvela) that I am taking has already increased; but it can always be upped again. I will keep you updated on this.
This past Sunday was a great day! I felt good when I awoke, and asked my wife if she wanted to go on a drive--which we did. We went to a nice park on the Provo River and enjoyed nature. It was the first time I felt up to a drive since before my Nephrectomy in November; so it had definitely been awhile. I greatly enjoyed the time out of the house, and I loved sitting and listening to the wind, the water and all the sounds of birds, puppies playing nearby, etc. It was extremely rejuvenating to my soul!
Then when Monday rolled around, it was the complete opposite. I awoke extremely nauseated, dry heaved for about twenty minutes, had numerous bouts of diarrhea, and, despite multiple doses of Zofran, was nauseated the entire day. It sucked! At least I had the memory of the previous day to help me through such a terrible day. Since then, I have been up and down. Mostly feeling lousy.
I saw my Nephrologist yesterday for my latest office visit. He really didn't have much to say because I am doing pretty well, overall. I follow physician orders, follow dialysis clinic guidelines, and actively work at home to ensure I am doing everything I can to be as healthy as I can possibly be. When you do all of that, you will not have too much to discuss with your doctor. And really, doing everything you can to ensure your best possible health--even under these circumstances--really isn't hard at all. You simply have to decide that this is what you'll do, and then you do it. Simple. Easy. Unfortunately, from what my Nephrologist tells me, my approach is definitely NOT the norm amongst his patients. They generally fight him on most aspects of their care, and their health suffers because of their adamant positions. Too bad; because it really IS easy to do what you have to! Being stubborn just isn't worth the consequences of not following instructions.
I had a friend offer her kidney this last week; but her blood type is incompatible with mine. She felt bad, but I assured her it was no big deal. Nothing has changed because she cannot donate. I really...REALLY appreciate the offer! It was a nice thought to know that someone was willing to do this for me.
And that's it. I am all done with this for today.
I am thinking of maybe doing some posts on video. Any thoughts? (Post them in the comments, if you do!)
Have a great week, everyone!
Good Health to All!
ScottW
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