07 March 2016

Well, my typing up this update is later than I anticipated, but I am doing much better post-surgery than I thought I would.

I had the Artificial Loop Graft placed on 26 February as expected. The surgery actually went extremely well, and the Vascular Surgeon finished up about forty-five minutes ahead of schedule.

The first couple of days post-op I was in typical shape...lots of pain, sleeping tons, not eating a whole lot, etc.

After that, it was as if my healing accelerated exponentially. On Monday, just three days after, I was taking care of myself, eating better, moving better.

On Tuesday I had my usual dialysis, but was actually fairly comfortable during the session. I slept only a few hours following this; very unusual for me.

By Wednesday I was on no strong pain meds, made my own food and was starting to use my arm like normal--aside from not lifting anything yet.

Thursday was another dialysis session, after which I slept my normal length of time.

Friday--one week post-op--, I saw the surgeon who stated that my arm looked great, removed all bandages and lifting restrictions.

Since then I have begun a normal routine in all things. The arm, while still sore and restricted in some movement, is fully functional, and has zero problems. At this point, I cannot believe that I am just 10 days post-op, and am able to go about each day like normal. No complaints from me, for sure!

So, at this point, I will see the surgeon again in two weeks to map the graft via ultrasound and to verify the flow and overall success of the surgery. Assuming all is well, it will be between 1-3 weeks minimum before I can start using the graft for dialysis. Once I do that, it will be another week or two before the chest catheter will be pulled. This delay is to assure the efficacy of the graft during dialysis. Once verified, that is when the catheter will be pulled.

()Below, I have illustrated the Artificial Loop Graft to help you understand the procedure and placement, as well as the use of the graft during dialysis.)

(Image of an Artificial Loop Graft placement)

(Image of how dialysis will be performed using the Artificial Loop Graft)

(Below are a few pictures of my arm both pre and post surgery)

1) R arm pre-op 25 Feb 2016

2) R arm post-op 27 Feb

3) Arm comparison showing swelling post-op 27 Feb 2016

4) R arm showing the outline of the Artificial Loop Graft 27 Feb 2016

5) R arm and chest catheter placement 27 Feb 2016

Now, once I begin using the graft for dialysis, you might be asking, 'how exactly do they do this?'

(Refer to the second picture down from above)

That's an easy one to answer. The Loop Graft is placed so the dialysis technicians can use what is called The Ladder Method when placing the needles for the treatment. This allows for numerous sites to be used along the length of the graft so as to minimize scar tissue growth in the arm.

Using sharp needles only (no button hole needles anymore!), the techs will start by placing both needles as close to the distal end of the graft (lowest on the arm) and on opposite sides of the circle that forms the graft.

For the next treatment, the techs will place each needle slightly higher on the arm on each side of the graft.

This ladder method will continue until the proximal end of the graft (or, closest to the trunk of the body) is reached, and they will then go back to the distal end of the graft and start over as each subsequent session finds the needles placed higher and higher.

Hopefully, even this new method won't be used too long before I get my call for transplant. Again, even if I get my transplant soon, I will still need access for dialysis in the event either something goes wrong with the transplant, or years down the road, I need access should the transplant fail, and NOT get another Central Line; which is exactly why I've put myself through all of this.

Why? Because after any transplant, the body's immune system is minimal--or non-existent-- due to the anti-rejection meds a patient has been on for however long the transplant has lasted. Because of this, the body is at extreme risk of infection from any and all sources. A Central Line is inserted almost directly into the heart, and carries an inherently extreme risk of infection. A Central Line placed in an immuno-compromised patient is practically guaranteed to assure systemic infection from whatever source, thereby presenting extreme danger to the patient. Hence, my decision to place the Artificial Loop Graft. It will be a far, far better guard against possible infection, should the need for further Hemodialysis arise.

If anyone reading this has any questions, please ask me via the comment section of this blog. I will be happy to answer any questions!

Please, also remember that this blog reflects my personal experience with PCKD and its treatments, tests, surgeries and possible outcomes. If you find yourself going through anything similar, please follow the instructions of your doctors, transplant committee and other healthcare givers. How you do throughout your experience will be up to you and your compliance (or non-compliance) to all procedures, treatments and instructions you are given to address whatever condition you are having to fight.

Good Health to All!

ScottW

12 February 2016

Well, my last surgery wasn't...again.

on 22 January, I went in for either the Artificial Loop Graft, or a Basilic Vein Transposition. When speaking with the surgeon in pre-op, I mentioned two things:
1) The slow flow I was seeing in dialysis treatments of 200 of less (it should flow between 350-400). Right then my Vascular Surgeon decided to swap out the lumen for another one.
2) The area of the failed Bovine Vein graft was still swollen, deep purple in color and extremely sore. He said he'd also look at that before proceeding.
And that is how my surgery came to naught.

The lumen in my chest was swapped out, as planned. A good thing, too. My blood was clotting the lumen from the inside out. The surgeon stated that my clotting factor was naturally high, so this was not unexpected. Now, instead of my lumen being packed with Saline between dialysis sessions, it has Heparin, a blood thinner/anti-coagulant. And so far, since getting the new lumen, my flow is at 400 every time.

Upon examining the area of the last surgery, the surgeon found puss all over the site. He cleaned that up, the looked at the Bovine Vein itself and decided to remove the vein. After severing both ends, the vein slipped out without any real effort. This is because my body totally rejected the vein--for whatever reason--and had not integrated it at all.
So, because of the infection, the surgeon closed up mu arm, infused me with antibiotics, and concluded the surgery. Afterwards, I was put on a one week regimen of Ansef (antibiotic), then retested for infection about ten days later, which showed no infection. I really dodged a bullet on this one. The risk of systemic infection was extremely high, which could have jeopardized my standing on the Transplant List. As it was, because of the infection in my arm, I was placed on a soft hold on the Transplant List until cleared by my doctors--which has since happened. I had to do bloodwork verifying I was free of infection, supported by a letter from my surgeon, which was all faxed to my coordinator.

So, after all of this, I still must have another surgery. While looking at my arm, the Vascular Surgeon confirmed the next step, which will be done on 26 February. On that day, I will be receiving the Artificial Loop Graft in my lower R arm. While the Basilic Vein Transposition is still a viable option, my surgeon wants to save that in the event it is a needed access point down the road. In the meantime, the vasculature in my lower R arm can sustain the Artificial Loop Graft. There's something about the vasculature in my arm that is not normal, and inserting the loop graft will not compromise the blood flow to my hand which, of course, would be very bad; while also not compromising the vasculature needed for the Basilic Vein Transposition. It's an odd situation, and I'm not explaining it very well because I was still groggy from the surgery when it was explained to me.

Anyway, since 22 January, I've been recovering and growing stronger. Only today have I felt well enough, strong enough, to sit down and get this typed out for you.

I will do another entry before the next surgery; but this is all for today. We are getting the Phoenix debacle moving towards its end. It's taken a lot of time, and a lot of surgeries to come to its conclusion...but we're getting there.

Stay tuned...

Good Health to All!

ScottW

17 January 2015

Well, with as much time that has passed since my last full entry, I think I'll stick with a few facts and stats and leave it at that.

As I mentioned earlier, the dialysis clinic in Phoenix destroyed my great fistula. They were extremely rough inserting the needle, not assuring they were even in the proper tract. When I went in again the following Saturday they had no pulse in the fistula, and could not dialyze anything on either site.

As I alluded to before, the clinic offered no assistance to me in knowing what to do or where to go. They literally told me that they couldn't dialyze me and that I had to "find someplace to get my dialysis." No calls to a nephrologist, no advice about which hospitals to go to; nothing.

Luckily, my brother-in-law in a neurologist and he suggested Good Samaritan Hospital in Phoenix. It was an excellent recommendation. Also fortunate was that I had my KARDEX sheet that I got from my home clinic prior to my trip. It had all my meds listed, treatments, hospitalizations, etc. This saved me so much hassle and redundant explanation. The doctors who saw me looked at that sheet, asked a few questions, and zipped me on my way through the system. It was quite literally a life saver. Within a few hours I had a temporary Central line in my neck, and I did two consecutive rounds of dialysis in the hospital. In all, I was there for about twenty seven hours before being released.

I STRONGLY RECOMMEND ANY DIALYSIS PATIENT WHO IS TRAVELING TO GET A COPY OF THEIR KARDEX PRIOR TO DEPARTURE, AND CARRY IT WITH YOU AT ALL TIMES. IT COULD LITERALLY SAVE YOUR LIFE!

I flew home the next day, then was at my vascular surgeon's office the day after that. He immediately sent me to day surgery to place another central line, this time in my R upper chest, just below the clavicle and subclavian artery.

A week later I was back to get that graft surgery, which, as I stated in a previous post, failed within a week. It is because that failed that I must now have another surgery. Yes, I could just go with the central line until I get my transplant. That is a perfectly viable option for me. However, looking at this long-term, and assuming the transplant will fail down the road, I will need an access for dialysis that does not involve another central line. Because of this, I have opted to go ahead with the graft surgery. It will potentially be extremely painful, and I will have a nasty, long scar on my arm. I am willing to do this in preparation for a future free from another dangerous lumen in my chest, should the need arise.

Dialysis Weights

(I am only including the current month and nothing previous)

02 Jan 16

Starting Weight:  96.2 Kg

Ending Weight:  94.7 Kg

Water Removed:  2.50 Kg

Start BP:  131/92     End BP:  116/70

05 Jan 16

Starting Weight:  97.6 Kg

Ending Weight:  94.7 Kg

Water Removed:  1.90 Kg

Start BP:  164/109     End BP:  109/61

07 Jan 16

Starting Weight:  97.6 Kg

Ending Weight:  93.9 Kg

Water Removed:  3.70 Kg

Start BP:  162/98     End BP:  109/93

09 Jan 16

Starting Weight:  96.3 Kg

Ending Weight:  94.0 kg

Water Removed:  2.30 Kg

Start BP:  148/97     End BP:  107/93

12 Jan 16

Starting Weight:  98.0 Kg

Ending Weight:  94.0 Kg

Water Removed:  4.00 Kg

Start BP:  162/102     End BP:  148/93

14 Jan 16

Starting Weight:  95.9 Kg

Ending Weight:  94.2 Kg

Water Removed:  1.70 Kg

Start BP:  129/89     End BP:  96/68

16 Jan 16

Starting Weight:  97.0 Kg

Ending Weight:  94.1 Kg

Water Removed:  2.90 Kg

Start BP:  137/85     End BP:  119/63

My weights are finally evening out again. After my Thanksgiving trip, it took my weeks to get my weight under control again. I had numerous 4+ Kg removals throughout the Christmas season. I don't know what it is about traveling; but when you go, fully expect a massive weight gain, then weeks of getting it back on target once you get home.

January Labs Results

(Again, because of Phoenix, I am not listing the December labs, and am also comparing the current numbers to my November 2015 labs)

*Albumin (22 Dec): 4.00 g/dL     (No Change from 20 Oct)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (05 Jan): 10.1 G/dL    (+0.20 from 20 Oct)
  (A Measure of Anemia)

*Ca Corrected (05 Jan): 9.50 mg/dL     (-0.30mg/dL from 06 Oct)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (05 Jan):  4.10 mg/dL    (-0.60 mg/dL from 06 Oct)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (22 Dec):  385 pg/mL     (+118.0 pg/mL 20 Oct)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (12 Jan):  5.7 mEq/L    (+0.30 mEq/L from 20 Oct)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (05 Jan):  1.71     (-0.17 from 06 Oct)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

I really can't complain about my labs whatsoever. They were a bit wild once I returned from Phoenix, but I have gotten them under control as well, just as I have gotten my wild weight swings back in check. There is likely a direct correlation there, but I am not going to explore it right now.

As I use the lumen (the central line) in my chest, I have had to learn a whole new set of rules to go along with it. If you don't know what a central line is, just look it up on the internet. The biggest rule to follow is to keep it clean and free of contaminants. Why? Because the lumen is a direct line of infection to the heart. THAT is why a central line is so dangerous. As a Kidney patient, with a compromised immune system--and soon to be with no immune system whatsoever due to an impending transplant--any serious infection acquired via the lumen (the actual device placed into your descending aorta) could actually kill you! So KEEP IT CLEAN!

Next, your dialysis tech should always use a mask (you, too!) when they are hooking up the lumen and taking you off of dialysis. This is also to help prevent infectious transfer. Along with this, they should always wear gloves, use alcohol swabs when contacting any part of your central line.

Your lumen is "packed" post-dialysis with either Saline or Heparin. This prevents back-flow into the lumen, and helps keep the ports on the lumen clear of clots or other blockages. This past Thursday I had to have a nurse [pack my lumen with Activase, a Thrombolitic, because my flow was decreasing from 400 to 200, and my dialysis was far less effective as a result. So, the Activase was put into my lumen. When I went back yesterday, my flow was much better at 350. *In my clinic, only a nurse can pack the lumen with Activase; whereas a tech can pack it with Heparin or Saline.

Next, if your lumen flows properly, you should have Yellow Caps on your access sites. These should be changed once per week--Thursdays for me--to prevent infectious buildup on the access sites.

However, since I am having flow issues, I now receive Blue Caps that are changed out every single Tx. This reminds the techs to my lumen must be packed with Heparin after my dialysis session, which helps the flow the following session. It is also to prevent infectious transmission.

When you bath, You MUST keep your central line dry and free of soap or other contaminants! This is ABSOLUTELY VITAL to your well being!! To get around this so I can bathe, my wife washes my hair in the kitchen sink, then we cover the lumen and access sites (and bandage) with a thick plastic sheet, and then tape all around it against my chest. Then, I wash the lower part of my body in the shower, and my wife helps clean my arms and back, being sure to keep the water away as much as possible. I've done this now ten plus times and my lumen and bandaging has so far remained dry.

The only really good part about using a Central Line is that once I'm off the dialysis lines, I am done and can pack up and go home. No waiting around to hold my access sites so I clot properly; I just get to go...which is really nice!

Anyhow, I'm done for now. With my surgery fast approaching, this is likely my last entry for at least three weeks. Please check back occasionally as you never know when I could type up even a brief entry. Wish me luck, send a few good thoughts my way, and please, keep me in your prayers.

Good Health to All!

ScottW

**The upcoming surgery will be either an Artificial Loop Graft, or a Basilic Vein Transposition. Which one is done will depend entirely on my vasculature; which, the surgeon will know once he is in my arm. 

Look them up so you can understand what I am about to go through. Both are on WebMD and other sites, as well.

13 January 2016

My first entry of 2016 will again be brief.

I did NOT have that fourth procedure in late December after all. The evening before it was to happen found my wife feeling sick, and since she's the one taking care of me post-surgery, I decided to postpone the procedure. I am now scheduled to go under the knife on 22 January.

While my wife getting sick was bad timing, the extra time between surgeries has been only beneficial to my healing. My R arm is looking great, and the soreness is nearly gone. Plus, my energy has only just begun to return. I am sleeping less, feeling better more consistently, eating better, and am on far less meds than just a week ago. By the time the next surgery happens, it shouldn't wipe me out as badly as anticipated.

The chest tube has finally grown to be more comfortable; though caring for it is a pain. The poor excuse for a shower I am able to take is barely enough to get me clean, and I have to have my wife wash my hair in the kitchen sink to keep the lumen and insertion point dry and free of contaminants. Oh well. The things we must sometimes do to stay alive...

Anyhow, it's already late, and I must be awake in just five hours for my next round of dialysis. Again, I WILL write this all out...hopefully before the next surgery. But no guarantees!  ;o)

HAPPY NEW YEAR, Everyone!

Good Health to All!

ScottW

23 December 2015

Another brief entry today...

The graft I had placed two weeks ago has failed. The vascular surgeon was concerned this might happen based on what he saw during the surgery to place the graft.

So, next Monday (28 Dec), I will have a fourth procedure this month to place one of two things. 1) An Artificial Loop Graft in my R arm to replace the Central Line that is now in my chest. 2) A Basilic Vein Transposition in my R arm. This would be the first of two surgeries if this option is used.

Of course, I know you are wondering why there are two possible surgeries. That's because the vasculature in my R arm may no longer be able to sustain the Loop Graft. In that case, the surgeon will opt to do the Basilic Vein Transposition. Unfortunately, he just won't know which option is best for me until he gets into my arm and sees which will be the better option.

So, after the surgery, I get to look forward to another two to three weeks of recovery...again.

I promise that I'll get all of this written out; it's just going to have to wait until I heal from this next surgery. (What fun!)

Again, May each of you have a Very Merry Christmas! May your homes be filled with the Love and Joy this Holiday Season so warmly brings.

Good Health to All!

ScottW

News for December 2015

Since my last post, a whole lot has happened. For now, I will give you the short, short version. Once my body heals, I will write what happened in more detail.
While on vacation in Phoenix, the dialysis clinic there messed up my perfect fistula. As a result, they sent me away only with instructions to "find someplace to dialyze."
I ended up at Good Samaritan Hospital. While there I received a temporary Central line in my neck. I did two consecutive rounds of dialysis, had the line removed and came home.

The day after arriving home I had another Central Line placed, this time in my R upper chest. This one is also temporary.
Then this past Monday I was having surgery again (for the third time in just over a week!)
to place a graft that circumvents the blockage in my fistula. So now, I am dialyzing on my regular schedule, but through the Central Line. Once my arm heals, I will lose the line and start doing dialysis through the graft.
I am still obviously healing from everything, so my typing is extremely limited. It could be a few more weeks before I write another entry.
In the meantime, I wish each and every person reading this a VERY MERRY CHRISTMAS! Happy New Year, too!

Good Health to All!

ScottW

P.s  My standing on the transplant list is unaffected! (Yay!!)

06 November 2015--Report on My Cardiac Stress Test

I had my once every 18 months Cardiac Stress Test, as required by the Transplant Committee. The test took place this past Wednesday at the IMC campus just outside of Salt Lake City.
The first step was a pre screening set of scans done on a combo MRI machine and rotating x-ray scanner.  This was followed immediately by hooking me up to a 12-Lead ECG and putting me on a treadmill. Unfortunately for me, my heart rate wouldn't rise enough (to 120-150 bpm), so I was given an IV Vasodilator, which simulates my vessels post-exercise as they flood organs with blood and oxygen.
Unfortunately for me, my body reacted negatively to the sudden and artificially imposed vasodilation, causing extreme nausea and then vomiting. Since I had no food in my stomach--due to eight hours of fasting prior to the test--all I got up was bile...and lots of it!...so the experience was over soon enough. As the drug was fast-acting, after I threw up, the episode was over, and I returned to the x-ray scanner and MRI for comparison shots of my circulatory system and heart.
Once they finished that round of images I was sent to the cardiologist who told me that everything looks great, and that he has zero concerns for my impending transplant. Also, as a precaution only, he wants me to do a lipid test to look at placque buildup in my arteries. He said that the stress test cannot determine placque, which can easily be controlled by a single med, if warranted. So, I am planning on doing this on Monday. It's just a quick blood draw, and will be nothing compared to dialysis needles. Of course, I will let you know the results when I get them.
So, great news on the cardiac aspect of things. That's another obstacle overcome. Now, if I could only get that transplant...

Good Health to All!

ScottW

**Update (18 Nov 15):  I called the lab for my lipid test results, and the following are the results:

ALT: (NR 12-61)  Result--22

Lipid Profile:

     Cholesterol: (NR 158-199) Result--160

     Triglycerides: (NR 58-149) Result--202

     HDL Cholesterol: (NR 40-63) Result--31

     Non-HDL Cholesterol: (NR <130 result--="" u="">129

     VLDL (?): (NR 12-29) Result--40

     LDL: (NR <100 nbsp="" result--="" u="">89

A few of these results are high, but I have no idea what they are in the first place. I'll have to look them up. For the most part, my cardiac labs look great, so no worries there. I haven't heard any follow-up from the Cardiologist, and unless I do, I'll chalk another one up as a win.