22 June 2016

I can't believe that nearly a month has passed since my last entry! Where, oh where does the time go?

To start off, last Friday my wife and I took an afternoon drive on the Alpine Loop. The loop itself isn't long, but the fact that I'm getting outside and deep into nature is what's important. It was unbelievably refreshing being amongst the mountains, trees, grand vistas, swiftly flowing water, a gentle summer breeze and the relaxing, beautiful sounds of birds, leaves rustling, insects buzzing and wonderful, absolute quiet. Next to the sound of rushing water, the complete absence of sound was so refreshing!

Plus, I took the opportunity to take some photos with my SLR, which I haven't done in months. Being creative with my camera is always something I enjoy.

Here are two photos from our day in the mountains; taken with a Nikon Coolpix digital camera:

And one more that my wife took of me taking photographs with my film SLR:

So, back to the reason for today's entry...

Let's begin with updating you about the progress my R arm is making. I met with my Vascular Surgeon in late May. My arm was mapped using ultrasound, and the flow looked awesome, while the graft was integrating nicely with my arm. I learned that the flow is +1700 (my old artificial graft flowed at +1400), which is exceptional. Aside from continued edema and bruising, I could begin using the graft at any time.

As of today I am still not using the new graft. Instead, I am simply allowing my arm to continue healing. This latest surgery really hit my R arm hard. At seven weeks post-surgery it (the arm) is still bruised and significantly swollen. I am not doing anything untoward in using the arm; it is just beaten up and needs to recover. I'll re-evaluate in one more week and may begin using the graft at that time.

Dialysis Weights:

26 May 16

Starting Weight:  101.7 Kg

Ending Weight:  99.7 Kg

Water Removed:  2.00 Kg

Start BP:  147/105     End BP:  135/98

28 May 16

Starting Weight:  102.6 Kg

Ending Weight:  100.0 Kg

Water Removed:  2.60 Kg

Start BP:  171/105     End BP:  108/88

31 May 16

Starting Weight:  103.1 Kg

Ending Weight:  99.8 Kg

Water Removed:  3.30 Kg

Start BP:  183/105     End BP:  107/78

02 Jun 16

Starting Weight:  101.8 Kg

Ending Weight:  99.8 Kg

Water Removed:  2.00 Kg

Start BP:  136/96     End BP:  107/86

04 Jun 16

Starting Weight:  102.2 Kg

Ending Weight:  99.6 Kg

Water Removed:  2.60 Kg

Start BP:  159/91     End BP:  108/79

07 Jun 16

Starting Weight:  103.0 Kg

Ending Weight:  99.6 Kg

Water Removed:  3.40 Kg

Start BP:  186/115     End BP:  109/71

09 Jun 16

Starting Weight:  102.9 Kg

Ending Weight:  100.2 Kg

Water Removed:  2.70 Kg

Start BP:  169/90     End BP:  126/99

11 Jun 16

Starting Weight:  102.8 Kg

Ending Weight:  99.7 Kg

Water Removed:  3.10 Kg

Start BP:  176/115     End BP:  126/88

14 Jun 16

Starting Weight:  103.0 Kg

Ending Weight:  100.1 Kg

Water Removed:  2.90 Kg

Start BP:  197/105     End BP:  152/93

16 Jun 16

Starting Weight:  102.2 Kg

Ending Weight:  99.9 Kg

Water Removed:  2.30 Kg

Start BP:  179/107     End BP:  128/80

18 Jun 16

Starting Weight:  102.6 Kg

Ending Weight:  99.7 Kg

Water Removed:  2.90 Kg

Start BP:  181/108     End BP:  120/91

21 Jun 16

Starting Weight:  104.0 Kg

Ending Weight:  100.7 Kg

Water Removed:  3.30 Kg

Start BP:  195/111     End BP:  140/103

As you can see, I am having a difficult time reaching my dry weight. On Tuesdays--the first Tx after my weekend--this is on purpose as I am not taking more than 4.00 Kg total (water plus rinse back fluid) in an effort to avoid any crashes on my part during dialysis which cause the BP to bottom out and the artificial graft to close off.

**It is now 26 June, and I am just now sitting down to finish this entry**

My latest round of monthly labs look great.
Here they are...

June 2016 Labs

*Albumin (21 Jun): 4.20 g/dL     (+0.40 from 17 May)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (21 Jun): 10.0 G/dL    (+0.10 from 17 May)
  (A Measure of Anemia)

*Ca Corrected (07 Jun): 9.90 mg/dL     (+0.10mg/dL from 03 May)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (07 Jun):  4.40 mg/dL    (+0.10 mg/dL from 07 May)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (21 Jun):  219 pg/mL     (-03pg/mL 17 May)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (21 Jun):  5.7 mEq/L    (+0.30 mEq/L from 17 May)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (07 Jun):  1.79     (+0.31 from 03 May)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

Aside from the normal (and frequent) Potassium rises into the bad territory, my labs are looking great! This in spite of the healing from my last surgeries. I will definitely take these numbers! These latest labs also come after a period in my healing when I was eating extremely poorly. If I can maintain good labs despite everything that has happened, then doing so when I am having "normal" months should be a piece of cake.  :o)

My headaches have been on again, off again...like normal. However, over the last three months--and again, in spite of the surgeries--I am seeing a noticeably longer time frame between refills of the pain meds that I use specifically for the headaches. My normal four week refill is lasting between 5 - 5 1/2 weeks. This is a significant extension which tells me that I am getting better control of the headaches. If I can continue doing this, I have hope that my headaches will be under complete control once again. It is only a matter of time before that happens. I do not expect this to come to fruition until sometime after I have my transplant...whenever that will be.

My appetite seems to be improving. I still only eat one good meal per day; but my other two are more frequent, though not very large. At least I'm eating more...and starting to snack again, which is great news! I had stopped snacking almost entirely for well over a month. I just didn't want to eat. So the fact I'm snacking again is really good news!

As far as energy level goes, it is still a challenge from day to day. I'd like to say it's getting better, but I just don't know if that would be accurate. I still tire easily, run out of energy entirely without a lot of effort, and don't get much done on a day to day basis. However...

I am driving the car a bit more, starting to cook more, and do other small things that says, "I'm finally recovering from the surgeries." But, I must also balance that with my day to day. And lately, I've been sleep far more than usual (between 11-15 hours each day), but napping far less (1-2 per day, and only for about an hour total). Some dialysis day sleep totals are nearing 18 hours. It's frustrating to me, but I also know that my body continues to heal from the surgeries, as well as adapt to the new dry weight which is 6.00 Kg's higher than previous to the new graft.

All in all, I have nothing to complain about in regards to my energy level. It is what it is, and it will absolutely improve once I have a kidney. Then, I'll have to be cautious to not over-extend myself...but THAT will be a happy inconvenience to adjust to!  :o)

Dialysis continues to be, well...dialysis. It's never fun sitting in one place for four and a half hours (my time...NOT an average patient time!), but with the right tools, the right attitude and allowing yourself to sleep during part of the treatment (Tx), the time always goes by quickly, and before you know it, I am eating lunch followed by a 5-7 hour post-D "nap." All in all, though certainly not my favorite activity, dialysis really isn't that bad. Well, aside from the body aches, the cramps and feeling like garbage afterwards!  :o/

The more I am on the renal diet, the more I learn about the foods I CAN eat from day to day. As many of you know, the renal diet is full of "Don'ts" as far as too much phosphorous, too much potassium, overly salty, etc. However, it is my experience that you can eat pretty much whatever you'd like, so long as everything you eat is done in moderation and awareness of what and how much you've had of phosphorous and potassium rich foods. and how those foods will impact your labs--and therefore, your health. Remember, ultimately, YOU are in charge of your own health; and knowing where your labs are and approximating how much phosphorous and potassium you can intake is absolutely VITAL to your health. It IS a balancing act that leads you to often have to say, "No" to some delicious foods.  But, when it comes to your personal health, YOU are in charge! And only YOU can determine what you can...or cannot...eat. So make the RIGHT choices when it comes to your renal diet.

That's about all I have for now. I should have another entry soon. I need to re-up my dental clearance, which will be happening in the next couple of weeks. Plus, it is past time for another eye exam, so there should be plenty to talk about in the next month or so. Until I write again...

Good Health to All!

ScottW

Also, it is time for my occasional disclaimer, so here we go...

Please remember that this blog is my singular experience with End Stage PCKD and Renal Transplant. How you do in your treatment is purely up to you and your willingness to follow your doctor's guidance. I strongly encourage you to do everything you can to be as healthy as possible as you go through your journey. If you read something here that you find might be helpful, always pass it by your nephrologist or other doctors before you try anything! Only they can determine if treatments, meds or other things will be beneficial or detrimental to your health. As always, I wish each and every renal patient the very best of luck on your journey! 

25 May 2016

Okay, now that I have the whole multiple surgeries thing all typed up, it's now time to get caught up with everything else.

As described in my last post, the previous month has been anything but normal. Fortunately, you already have the abnormal, so let's get to the routine...

Dialysis Weights:

31 Mar 16

Starting Weight:  101.1 Kg

Ending Weight:  96.5 Kg
Water Removed:  4.60 Kg
Start BP:  130/90     End BP:  118/88

02 Apr 16
Starting Weight:  99.8 Kg
Ending Weight:  96.9 Kg
Water Removed:  2.90 Kg
Start BP:  112/81     End BP:  119/68

05 Apr 16
Starting Weight:  101.3 Kg
Ending Weight:  97.9 Kg
Water Removed:  3.40 Kg
Start BP:  174/108     End BP:  124/87

07 Apr 16
Starting Weight:  100.6 Kg
Ending Weight:  96.7 Kg
Water Removed:  3.90 Kg
Start BP:  156/115     End BP:  100/68

09 Apr 16
Starting Weight:  100.4 Kg
Ending Weight:  96.9 Kg
Water Removed:  3.50 Kg
Start BP:  134/82     End BP:  111/90

12 Apr 16
Starting Weight:  100.3 Kg
Ending Weight:  96.9 Kg
Water Removed:  3.40 Kg
Start BP:  137/89     End BP:  149/122

14 Apr 16
Starting Weight:  100.0 Kg
Ending Weight:  96.7 Kg
Water Removed:  3.30 Kg
Start BP:  130/76     End BP:  109/75

16 Apr 16
Starting Weight:  99.6 Kg
Ending Weight:  96.7 Kg
Water Removed:  2.90 Kg
Start BP:  128/91     End BP:  138/99

19 Apr 16
Starting Weight:  101.4 Kg
Ending Weight:  96.7 Kg
Water Removed:  4.70 Kg
Start BP:  150/91     End BP:  110/80

21 Apr 16
Starting Weight:  99.7 Kg
Ending Weight:  96.5 Kg
Water Removed:  3.20 Kg
Start BP:  139/86     End BP:  115/88

23 Apr 16
Starting Weight:  99.7 Kg
Ending Weight:  96.3 Kg
Water Removed:  3.40 Kg
Start BP:  113/77     End BP:  139/100

26 Apr 16
Starting Weight:  101.5 Kg
Ending Weight:  97.2 Kg
Water Removed:  4.30 Kg
Start BP:  164/104     End BP:  104/64

*28 Apr 16*
Starting Weight:  100.2 Kg
Ending Weight:  98.2 Kg
Water Removed:  2.00 Kg
Start BP:  122/33     End BP:  106/85
*Start of latest surgery phase

30 Apr 16
Starting Weight:  103.1 Kg
Ending Weight:  99.4 Kg
Water Removed:  3.70 Kg
Start BP:  154/96     End BP:  143/64

*I did not record the two extra dialysis sessions this week;
only the normal T/Th/Sa sessions.
03 May 16
Starting Weight:  101.0 Kg
Ending Weight:  98.4 Kg
Water Removed:  2.70 Kg
Start BP:  141/99     End BP:  112/72

05 May 16
Starting Weight:  102.5 Kg
Ending Weight:  99.6 Kg
Water Removed:  2.90 Kg
Start BP:    136/83     End BP:  125/87

07 May 16
Starting Weight:  103.6 Kg
Ending Weight:  100.3 Kg
Water Removed:  3.30 Kg
Start BP:  173/107     End BP:  132/64

10 May 16
Starting Weight:  103.6 Kg
Ending Weight:  99.9 Kg
Water Removed:  3.70 Kg
Start BP:  150/87     End BP:  106/69

12 May 16
Starting Weight:  102.3 Kg
Ending Weight:  99.6 Kg
Water Removed:  2.70 Kg
Start BP:  163/91     End BP:  136/85

14 May 16
Starting Weight:  102.5 Kg
Ending Weight:  99.8 Kg
Water Removed:  2.70 Kg
Start BP:  161/98     End BP:  136/94

17 May 16
Starting Weight:  103.8 Kg
Ending Weight:  100.2 Kg
Water Removed:  3.60 Kg
Start BP:  155/109     End BP:  118/76

19 May 16
Starting Weight:  102.6 Kg
Ending Weight:  99.7 Kg
Water Removed:  2.50 Kg
Start BP:  161/101     End BP:  119/92

21 May 16
Starting Weight:  102.6 Kg
Ending Weight:  99.6 Kg
Water Removed:  3.00 Kg
Start BP:  158/97     End BP:  128/79

24 May 16
Starting Weight:  103.3 Kg
Ending Weight:  99.8 Kg
Water Removed:  3.50 Kg
Start BP:  163/100     End BP:  113/73

The new dry weight of 99.5 Kg is evident. However, the goal of keeping my post-D weight above 110 systoloic is happening every treatment (Tx). I am still waffling about about the dry weight, and may even decrease it by a half kilo just to see what happens. We'll see...


May 2016 Labs:
(Again, due to the April/early May surgeries, I am skipping the April 2016 Labs)

*Albumin (17 May): 3.80 g/dL     (-0.30 from 22 Mar)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (17 May): 9.9 G/dL    (-1.00 from 22 Mar)
  (A Measure of Anemia)

*Ca Corrected (03 May): 9.90 mg/dL     (+0.10mg/dL from 02 Mar)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (07 May):  4.30 mg/dL    (-0.20 mg/dL from 12 Mar)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (17 May):  222 pg/mL     (-171 pg/mL 22 Mar)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (17 May):  5.4 mEq/L    (-0.1 mEq/L from 22 Mar)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (03 May):  1.48     (-0.13 from 08 Mar)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

I don't know what else to catch up on because of everything I wrote about the multiple surgeries, extra dialysis sessions, etc. Let's see...

Because of the surgeries my sleep is all out of whack...again. I get anywhere from 2-11 hours at any given time, and will often nap off and on even when I've had lots of sleep over a twenty four hour period. Even my Post-D naps are furtive, at best. As times gets on past they surgeries, I'm confident the sleep will get turned around.

My appetite is also off...badly. However, the surgeries again will wreak havoc on anyone's appetite. This too will get turned around; though it might take a bit longer than normal.

My headaches have stayed consistent over the past two months, as has my use of T3's to combat them. I am so happy that I finally have an effective means to fight these nasty TMD headaches. I spent over 15 years dealing with those migraine-like headaches with no effective means to tamp them down. Talk about miserable...

My energy level has also been greatly reduced because of the surgeries. At three weeks post-surgery, I am finally seeing my energy uptick. In a few more weeks, I expect to be back to normal...well, as normal as my kidney-less, dialysis addled body can be!  :o)

Ever since the surgeries my feet have been ablaze with the neuropathy. I am burning through a twenty pound bag of ice every three days fighting to get the burning under control. Every time I think I've done it, the neuropathy ramps up again and I am thrusting both feet back into an ice water bath. It has gotten better, and I will keep up my efforts to get it under control again.

...Wow! those surgeries really screwed up a lot of things!

I think that's about it for today. If I think of anything else, I'll add it on to the end of this one.

The journey continues... Thanks for staying with me!

Good Health to All!

ScottW

23 May 2016: Surgery Update

As you all know, I had my chest tube excised on 13 April of this year. Exactly 15 days following that, I learned on 28 April that my Artificial Graft was closed. I was at dialysis--trying to be put on Tx-- when this little revelation was given by the staff nurse. They immediately sent me over to the hospital (literally across the street) to have Interventional Radiology attempt to unclog the graft.
On my way to Radiology I actually saw my Vascular Surgeon in the hallway. He later told me that when he saw me there he thought to himself, "Hmm. This can't be good." He also to me to call his office if needed.
Well, I was about to do the procedure when the Radiology physician learned that I was allergic top the contrast dye and immediately cancelled the attempt as they were not equipped to deal with this contingency.
By this time my wife was with me and took me over to the office of my Vascular Surgeon. I saw him, again, in short order, and he sent me back to Day Surgery so we could unclog the graft.
The whole check-in and pre-surgery thing was hectic as I was needing dialysis. The chaos around me reminded me of my paramedic days. The best way to describe the madness is "Organized Chaos." Just like a major trauma call, or an ER scene when a severe trauma case comes in and every is chaotically doing their jobs, talking over each other, instructions given, IV's inserted, blood drawn, patient prepped for surgery amidst everything...
So, within ten minutes of checking in, I was ready for surgery. Unfortunately (once again), the whole contrast dye allergy thing came up and forced my surgeon to only insert another chest catheter so I could get my dialysis treatment that day; which I did once released from the hospital. I was scheduled to do the graft thing on Monday, 02 May. In the meantime, I had my usual Saturday dialysis session, then ran a short course of Prednisone (a Parabolic steroid generally used as an anti-inflammatory) on Sunday night and early Monday.
Once Monday arrived my wife and I showed up at Day Surgery again ready to do the graft procedure. We were ready and waiting in the pre-surgery when I was told that my Potassium level was far to high. Apparently, I had a nasty spike in my K+ and was charted at 7.70--2.50 over the top end of the acceptable level. So, the surgery was off. Instead I was admitted to the hospital so I could do a session of in-house dialysis using the K1 solution (to draw out additional potassium).
In the middle of everything that day, the entire hospital was going through the pains of a new paperless system that was implemented that day...which we already knew was happening, so we were expecting things to be slow. Everyone, nurses, techs, doctors, etc were all bogged down trying to input orders on the new system. It took over two hours just to get admitted to the hospital! Anyhow, the dialysis commenced with zero issues. I then had to be released from the hospital, which took another hour plus.
The next day was my normal Tuesday dialysis--again using the K1 solution--and later that evening, another course of Prednisone ahead of the surgery.
On Wednesday, 04 May, I was again at Pre-Op ready to have the graft worked on. My potassium was taken, and it had fallen to a terrific 4.6.  Once I awoke from surgery, the Vascular Surgeon stated that things didn't go as planned. The Arterial side of the graft cleaned up nicely, but the venous side did not. He had to detach the venous side and replace it with a new tube that was also moved to just beside my elbow. This meant three new incisions on my arm instead of just one, and a longer healing time. Also, he had to use a small amount of contrast dye, so I had to do dialysis for the third day in a row to avoid any potential anaphylactic reactions from the contrast dye. That was fun.
Then on Thursday, I again had my regular dialysis treatment (Tx) making it four sessions in a row! Other than my ridiculously numerous dialysis sessions, I spent my time recovering from the surgery.
The following Wednesday,11 May, I met with my Vascular Surgeon for a post-op follow-up. Everything was great at that time. The bruit was excellent and the surgical sites looked healthy and free from any infections of irritations. Although still swollen (from the surgery) and still bruised, the arm is in great shape. 
In the days since that appointment, I continue to recover. My arm is much better, but I still cannot lift more that about 5 pounds, and only for short periods. Anything more or longer and my arm weakens, starts to ache, and then turns painful. A few more weeks should see my arm stronger, with no swelling and decreased bruising.
So, hopefully around mid-June I will begin using the Artificial Graft once again. A week or two later I will have the chest tube pulled...again. I did learn a terrific bit of info to help the graft, which is that a slightly hypertensive patient has an easier time keeping the artificial graft open. So, I immediately increased my dry weight (currently at 99.5 Kg's--an increase of 6.0 Kg's!)
My body hasn't really enjoyed the much higher weight, but so far, I have no fluid in my lungs, no obvious swelling in my legs, arms or torso. My BP has stayed above 110 Systolic following each dialysis session, which is the minimum I need to attain to keep the graft flowing.
And there you have it...the latest in the long saga that the Phoenix trip has devolved into. If this graft fails, I am seriously considering just staying with the Central Line until I have my transplant. Especially when considering that my transplant is very likely to happen between this Fall and the end of the year.

What fun this has all been!

I will catch up with my regular blog in a few days, so be looking for that as well.

Until then...

Good Health to All!

ScottW

06 May 2016

I have much to discuss, but cannot do much typing right now due to needing ANOTHER surgery on my arm this past Wednesday.
I will update the blog when I am able to type lots more without hurting my arm.

Until then, Good Health to All!

ScottW

29 March 2016 (+Update on 4/06/16)

Things are going well, so far.  Let's get you updated...

On 23 March I saw my Vascular Surgeon again. The Artificial Loop Graft was mapped and everything looks terrific! The flow is at 1400+ (a phenomenal rate!), the line is clear, and was ready to use. The surgeon gave the go ahead to start using the line at dialysis, which I did the very next day for my Thursday morning Tx.

On an aside,

My vasculature is a bit odd, which is one reason that Bovine Graft failed. Anyway, the Arterial and Venous sides of the graft are reversed from pretty much every other graft patient. My arterial is on the thumb side of the arm, and the venous is on the pinky side. Again, this is reverse from how it ends up on most every other patient. So, when I first used the graft, it was vital that I made this distinction with the dialysis techs so the correct needle was placed on the correct side of the loop. If not placed properly, the needles will simply clean the same small amount of blood potentially hundreds of times, but leave the vast majority of blood untouched. So, just a bit important...

Anyhow, my first use of the Artificial loop Graft at dialysis was a complete success. The venipuncture was quick, easy and, well, better as far as pain; but I won't say it was painless. After all, sharp needles will hurt no matter what. However, it isn't like those blunt needles getting shoved through your skin!

The treatment saw me run at 450--the fastest possible during Tx--the entire four and a half hours. The worst part of the session was not being able to move my arm. With the Central Line I had gotten used to using both arms for whatever. Now, everything must be done using one arm again. It'll take some getting used to...again. I did it for three and a half years before this whole Phoenix debacle; and I will get there once more.

As a result of the higher flow, my blood is being cleaned an extra 4-6 times each session, which results in cleaner blood. Since starting the graft I have slept better, my appetite is a little better, my labs are better, I don't feel quite so dragged out afterwards and the cramping has been reduced as well. This last part is also due to the fact that I have actually upped my Dry Weight to 96.5 Kg.

One month ago my Nephrologist took me off of the BP med Atenolol (a Beta Blocker) entirely--I was only on 25 mg 2x/day anyhow. It takes between 3-4 weeks for the effects of that med leave the body entirely. During the second to third week without the Atenolol, my BP and Pulse began to swing wildly. This is a normal side effect of losing that med. Plus, without the med it became clear that my Dry weight was too low, so I began gradually upping the weight until I hit 96.5 Kg (+2.5 Kg over my previous dry weight). At 96.5 I am not cramping, my BP is more stable, and my pulse has come down to an acceptable level. Right now, it is averaging about 85 BPM. As time goes on past the 4 week mark, it should continue to drop to its normal BPM of about 62-64.

So, I now have just three more treatments (Tx's) with no problems using the graft and I can then schedule the removal of the Central line! I can hardly wait!

March 2016 Labs:

*Albumin (22 Mar): 4.10 g/dL     (+0.20 from 19 Jan)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (22 Mar): 10.9 G/dL    (+1.20 from 08 Mar)
  (A Measure of Anemia)

*Ca Corrected (02 Mar): 9.80 mg/dL     (+0.30mg/dL from 05 Jan)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (12 Mar):  4.50 mg/dL    (-0.40 mg/dL from 02 Feb)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (22 Mar):  393 pg/mL     (+8.0 pg/mL 16 Feb)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (22 Mar):  5.6 mEq/L    (+0.50 mEq/L from 01 Mar)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (08 Mar):  1.61     (+0.20 from 02 Feb)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

This is the last lab report using the catheter. Next month's labs should look even better. I hope to be sharing that news next month.

As far as the weights, remember that I will show an upward trend to compensate for the lack of a beta blocker in my system.
(Sorry...I have a bit of Weights to catch up on...)

Dialysis Weights:

19 Jan 16

Starting Weight:  98.6 Kg

Ending Weight:  94.3 Kg

Water Removed:  4.30 Kg

Start BP:  156/115     End BP:  93/61

21 Jan 16

Starting Weight:  97.0 Kg

Ending Weight:  94.2 Kg

Water Removed:  2.80 Kg

Start BP:  143/100     End BP:  100/61

23 Jan 16

Starting Weight:  98.9 Kg

Ending Weight:  94.9 Kg

Water Removed:  4.00 Kg

Start BP:  142/96     End BP:  140/105

26 Jan 16

Starting Weight:  97.9 Kg

Ending Weight:  94.2 Kg

Water Removed:  3.70 Kg

Start BP:  156/95     End BP:  93/63

28 Jan 16

Starting Weight:  96.4 Kg

Ending Weight:  93.9 Kg

Water Removed:  2.50 Kg

Start BP:  143/87     End BP:  100/61

30 Jan 16

Starting Weight:  96.2 Kg

Ending Weight:  94.7 Kg

Water Removed:  1.50 Kg

Start BP:  152/91     End BP:  97/64

02 Feb 16

Starting Weight:  98.7 Kg

Ending Weight:  94.1 Kg

Water Removed:  4.60 Kg 

Start BP:  162/107     End BP:  127/96

04 Feb 16

Starting Weight:  96.8 Kg

Ending Weight:  94.0 Kg

Water Removed:  2.80 Kg

Start BP:  131/104     End BP:  110/78

06 Feb 16

Starting Weight:  96.4 Kg

Ending Weight:  94.1 Kg

Water Removed:  2.30 Kg

Start BP:  142/103     End BP:  118/102

09 Feb 16

Starting Weight:  97.7 Kg

Ending Weight:  93.9 Kg

Water Removed:  3.80 Kg

Start BP:  137/87     End BP:  107/70

11 Feb 16

Starting Weight:  96.4 Kg

Ending Weight:  94.0 Kg

Water Removed:  2.40 Kg

Start BP:  131/83     End BP:  99/59

13 Feb 16

Starting Weight:  96.9 Kg

Ending Weight:  94.2 Kg

Water Removed:  2.70 Kg

Start BP:  126/89     End BP:  177/129 (??)

16 Feb 16

Starting Weight:  97.4 Kg

Ending Weight:  94.2 Kg

Water Removed:  3.20 Kg

Start BP:  140/90     End BP:  120/68

18 Feb 16

Starting Weight:  97.3 Kg

Ending Weight:  94.0 Kg

Water Removed:  3.30 Kg

Start BP:  112/65     End BP:  119/96

20 Feb 16

Starting Weight:  97.4 Kg

Ending Weight:  95.5 Kg

Water Removed:  1.90 Kg

Start BP:  104/87     End BP:  96/74

23 Feb 16

Starting Weight:  98.9 Kg

Ending Weight:  96.0 Kg

Water Removed:  2.90 Kg

Start BP:  146/90     End BP:  110/65

25 Feb 16

Starting Weight:  98.8 Kg

Ending Weight:  95.3 Kg

Water Removed:  3.50 Kg

Start BP:  133/100     End BP:  144/81

**Start of NO ATENOLOL (beta blocker) on 26 Feb 16

27 Feb 16

Starting Weight:  99.4 Kg

Ending Weight:  95.7 Kg

Water Removed:  3.70 Kg

Start BP:  126/80     End BP:  94/64

01 Mar 16

Starting Weight:  98.7 Kg

Ending Weight:  94.8 Kg

Water Removed:  3.90 Kg

Start BP:  147/90     End BP:  94/67

03 Mar 16

Starting Weight:  97.3 Kg

Ending Weight:  95.1 Kg

Water Removed:  2.20 Kg

Start BP:  107/80     End BP:  120/81

05 Mar 16

Starting Weight:  97.5 Kg

Ending Weight:  94.9 Kg

Water Removed:  2.60 Kg

Start BP:  123/78     End BP:  100/71

08 Mar 16

Starting Weight:  98.5 Kg

Ending Weight:  95.1 Kg

Water Removed:  3.40 Kg

Start BP:  118/75     End BP:  157/71

10 Mar 16

Starting Weight:  98.2 Kg

Ending Weight:  95.6 Kg

Water Removed:  2.60 Kg

Start BP:  143/115     End BP:  103/65

12 Mar 16

Starting Weight:  98.1 Kg

Ending Weight:  95.7 Kg

Water Removed:  2.40 Kg

Start BP:  119/70     End BP:  96/58

15 Mar 16

Starting Weight:  98.6 Kg

Ending Weight:  95.4 Kg

Water Removed:  3.20 Kg

Start BP:  130/87     End BP:  124/52

17 Mar 16

Starting Weight:  97.2 Kg

Ending Weight:  95.5 Kg

Water Removed:  1.70 Kg

Start BP:  127/83     End BP:  96/81

19 Mar 16

Starting Weight:  99.0 Kg

Ending Weight:  95.6 Kg

Water Removed:  3.40 Kg

Start BP:  108/78     End BP:  121/88

22 Mar 16

Starting Weight:  99.1 Kg

Ending Weight:  96.3 Kg

Water Removed:  2.80 Kg

Start BP:  134/75     End BP:  102/75

24 Mar 16

Starting Weight:  99.2 Kg

Ending Weight:  96.3 Kg

Water Removed:  2.90 Kg

Start BP:  137/80     End BP:  99/72

26 Mar 16

Starting Weight:  99.5 Kg

Ending Weight:  96.2 Kg

Water Removed:  3.30 Kg

Start BP:  123/86     End BP:  114/84

**One month post-Atenolol (beta blocker)

28 Mar 16

Starting Weight:  99.5 Kg

Ending Weight:  96.6 Kg

Water Removed:  2.90 Kg

Start BP:  128/83     End BP:  106/74

As you look over the progression of the weights, you can clearly see the swings my BP took as time passed after dropping the Atenolol altogether. Only on the last few measurements do we see the starting BP to have any consistency. It took a while to achieve, but at least I found the right combination of Dry Weight and Blood Pressure in my post-Atenolol world.

Otherwise, I am doing well. My R arm feels good, and I can use it unrestricted. Next up...Removal of the Central line from my chest, which I will schedule early next week. With how well things have been going, what's after that...my transplant? (Let's hope so!)

That's all I have for now. My typing hand is exhausted and I'm beginning to make too many mistakes that must be corrected.

Have a terrific week, Everyone!

Good Health to All!

ScottW

**Update
I called my Vascular Surgeon's office yesterday to schedule the removal of the Central Line out of my chest. It will happen on Wednesday, 13 April. My dialysis clinic ordered special labs to support removal of the catheter, which I should have in a few days.
I will write up a report on the catheter removal a few days afterwards...hopefully with pictures!
SW

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