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