Wednesday, July 30, 2014

30 July 2014: Angioplasty Report

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

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

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!

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



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

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

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