New Astellas Website

My friends at Astellas Pharmaceuticals have redone their website.  You still must sign up to access all the transplant-relevant info, but there is so much great information here that I strongly encourage any potential transplant recipients (or existing ones, too!) to sign up for their services.

Their address:
     www.astellascares.com

Thanks!

Post Transplant Tests

The following comes from UNOS--United Network of Organ Sharing--the national body that oversees transplant allocation. Not all tests are for Renal transplant patients. It is vital that you educate yourself regarding your treatments as much as possible to ensure the long-term viability of your transplant. After all, the more you know, the greater your ability to be as healthy as possible!

Post Transplant Tests

Throughout the transplant process, even once you are home, you will undergo many tests to determine your health status and detect early signs of rejection or infection. It is very important to talk with your doctor about what tests to expect, as well as what results are normal for you.
In addition to physical examination, the following tests may be done during your follow-up visits:

• Blood tests help assess how well your organs are functioning.
• Ultrasounds use sound waves to show the size of organs and blood flow.
• X-rays check for early signs of infection.
• Biopsies are medical tests involving the removal of cells or tissues for examination for signs of damage or disease.
• AlloMap^TM molecular expression testing is a non-invasive blood test for heart recipients used to monitor the activity of specific genes in your white blood cells to determine the risk of acute cellular rejection.
• Electrocardiograms and echocardiograms help monitor heart function.
• Pulmonary function tests (PFTs) measure how well the lungs take in and exhale air and how efficiently they transfer oxygen into the blood.

You may also need to perform several tests on a regular basis at home. Although specific tests vary per organ, tests that are very important in helping to monitor the health of every transplant patient include temperature, weight, blood pressure and pulse. Talk to your transplant team about tests you will need to perform, as well as additional questions you have or instruction you need.

**For more information, please visit the UNOS website at www.transplantliving.org.

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!