Without doing too much explanation, and as clearly as I can, the following is the result of Monday's (28 Jul) Angioplasty of the L AV Fistula...
In short, the procedure was unsuccessful. When the surgeon got in the vein, he could not advance the balloon to the necessary location due to greater narrowing of the vein than evidenced by the ultrasound exam, and therefore, could not inflate the balloon, nor tamp the growth down to the vessel wall. As he did not anticipate such an outcome, the Vascular surgeon did not gain my consent prior to the procedure for additional steps, in the event of the inability to proceed, so he finished the attempt, sutured my arm, applied antibiotic cream, and the day was done.
I awoke feeling extremely groggy, but could not yet completely sleep as I had arranged for dialysis immediately afterwards to remove the contrast dye as quickly as possible to avoid any anaphylactic reactions that I could likely experience. Once there I quickly dozed off, slept for about three and a half of my four and a half hour session. Even after getting home I was dozing in and out all evening. I ate my one and only meal of the day, followed by about twelve more hours of in and out sleep.
Into yesterday I remained somewhat fuzzy until about 0400p. It was then I had to go back to the surgeon's office for more mapping of my Neck (IJ's and Carotids), Upper Chest (Subclavians), and both Arms.
Why?
Because, as the surgeon put it, (referring to my fistula) "You're on borrowed time." In other words, the fistula is quickly dying and becoming unusable.
So, here's what we are going to do...
We have to create a permanent fix. Yes, we can do a Central Line, but with the risk of infection that that carries, we'd really rather not do that, unless unavoidably necessary. Contrary to what I said in my last blog, the surgeon came up with a third option, which we are going to do.
Next Monday, 04 August, I am going back to the hospital for another surgery. This will be to create a brand new fistula on my R arm, again, just above the wrist and medial to the arm. This will take a minimum of six weeks to heal.
In the meantime, I will continue to use my L fistula until the R side heals, or the fistula dies altogether. If the latter happens too soon, the surgeon will attempt a quick and very minor patch of the L fistula. If that is unsuccessful, he will insert a central line in one of the subclavian arteries.
I think I got that correct. This is kind of confusing to ME, so explaining is difficult.
In either case, my standing on the Transplant List will NOT be affected, as I has previously stated. My surgeon was concerned about that, but after speaking with my Transplant Coordinator, a delay will not be in play...which is a huge relief!
Please, ask me any questions you might have. I'll answer them as best I can.
So, that's the latest. I will try to get another entry done before Monday.
And on we continue to go...
Good Health to All!
ScottW
Wednesday, July 30, 2014
Sunday, July 27, 2014
27 July 2014
My Angioplasty of the AV Fistula is scheduled for Monday morning (28 Jul). I have to arrive at the hospital at 0600a. The arrival time will accommodate my needing to take steroids and Benadryl an hour ahead of the procedure to offset any effects from the contrast dye, which I am allergic to.
The angioplasty should take about an hour from start to finish. It will be my choice to go with either a local anesthetic, or go into a general anesthesia, in which case I will be unconscious during the procedure. I haven't yet decided which I'll do.
After I'm done, I have to go to dialysis a day early in order to get the dye out of my body. Otherwise, I could have an anaphylactic reaction before I would go to my normal Tuesday treatment. Better to NOT go into anaphylaxis! ;0) In the mean time, I'll be taking more Benadryl to continue combating the dye. Between the meds and the early procedure, I'll likely sleep the whole time I'm hooked up to the dialyzer.
As a reminder, because of the surgery followed by dialysis, it may be a few days before I report on how this all goes. If you are so inclined, please throw out a few prayers for me so that I have no issues with any allergic reactions tomorrow.
Thanks for all of your thoughts and prayers.
Every effort you make on my behalf helps me immeasurably!
See you in the flip side!
ScottW
The angioplasty should take about an hour from start to finish. It will be my choice to go with either a local anesthetic, or go into a general anesthesia, in which case I will be unconscious during the procedure. I haven't yet decided which I'll do.
After I'm done, I have to go to dialysis a day early in order to get the dye out of my body. Otherwise, I could have an anaphylactic reaction before I would go to my normal Tuesday treatment. Better to NOT go into anaphylaxis! ;0) In the mean time, I'll be taking more Benadryl to continue combating the dye. Between the meds and the early procedure, I'll likely sleep the whole time I'm hooked up to the dialyzer.
As a reminder, because of the surgery followed by dialysis, it may be a few days before I report on how this all goes. If you are so inclined, please throw out a few prayers for me so that I have no issues with any allergic reactions tomorrow.
Thanks for all of your thoughts and prayers.
Every effort you make on my behalf helps me immeasurably!
See you in the flip side!
ScottW
Wednesday, July 23, 2014
23 July 2014
An update on my fistula...
I saw the Vascular surgeon this afternoon, and the bulk of my fistula is in great shape. There is, however, a growth that is forming just above the surgery site (where the fistula was connected) that is impeding blood flow. It's kind of a stalagmite-looking protrusion that crosses about half the width of the vein. It's an odd thing, but nothing the doc hasn't seen previously.
So, I will be going in for a day surgery next Monday--early--which should only last about an hour. The procedure will be an Angioplasty of the Fistula.
This adjunct will hopefully be adequate to get me through to the transplant. If not, there is really only one option...creation of another fistula. I do NOT want that to happen because it would push any transplant back at least six additional weeks (or more!). Plus, if I get a new fistula, I'll have to have a subclavian shunt installed as a temporary access for dialyzing...which I absolutely DO NOT WANT! Transplant would be stalled for months due to infection concerns. Let's keep our fingers crossed that my perfusion will increase as well as the effectiveness of dialysis.
I probably won't be able to type for a couple days afterwards, so it could be a bit before I get another entry done. So please, be patient while I recover and I will get the news to you as soon as I can.
As always, feel free to ask me any questions. I will always answer them!
Good Health to All!
ScottW
P.s I remembered that it was past time for me to remind everyone that this blog reflects my individual experience with Polycystic Kidney Disease (PCKD). My course of treatment, hospitalizations and surgeries are unique to me alone. Any other patients may experience something totally different. For the best medical advice, always talk to your physicians as to what is best for YOUR treatment. And please, please, PLEASE...Follow your treatment plan exactly as your care takers (Docs, Nurses, Clinics, etc) advise. The plan is there for a reason, and if you choose not to do everything as required, your treatment will not be as effective as it could otherwise be. This includes meds, diet, fluids, etc. Excuses only make things worse, so follow the plan!
I saw the Vascular surgeon this afternoon, and the bulk of my fistula is in great shape. There is, however, a growth that is forming just above the surgery site (where the fistula was connected) that is impeding blood flow. It's kind of a stalagmite-looking protrusion that crosses about half the width of the vein. It's an odd thing, but nothing the doc hasn't seen previously.
So, I will be going in for a day surgery next Monday--early--which should only last about an hour. The procedure will be an Angioplasty of the Fistula.
This adjunct will hopefully be adequate to get me through to the transplant. If not, there is really only one option...creation of another fistula. I do NOT want that to happen because it would push any transplant back at least six additional weeks (or more!). Plus, if I get a new fistula, I'll have to have a subclavian shunt installed as a temporary access for dialyzing...which I absolutely DO NOT WANT! Transplant would be stalled for months due to infection concerns. Let's keep our fingers crossed that my perfusion will increase as well as the effectiveness of dialysis.
I probably won't be able to type for a couple days afterwards, so it could be a bit before I get another entry done. So please, be patient while I recover and I will get the news to you as soon as I can.
As always, feel free to ask me any questions. I will always answer them!
Good Health to All!
ScottW
P.s I remembered that it was past time for me to remind everyone that this blog reflects my individual experience with Polycystic Kidney Disease (PCKD). My course of treatment, hospitalizations and surgeries are unique to me alone. Any other patients may experience something totally different. For the best medical advice, always talk to your physicians as to what is best for YOUR treatment. And please, please, PLEASE...Follow your treatment plan exactly as your care takers (Docs, Nurses, Clinics, etc) advise. The plan is there for a reason, and if you choose not to do everything as required, your treatment will not be as effective as it could otherwise be. This includes meds, diet, fluids, etc. Excuses only make things worse, so follow the plan!
Friday, July 18, 2014
18 July 2014
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
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
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
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