24 October 2016 (+ New Update!)

Alright, I have flat out put off this update because I am always feeling tired, hoping for a day that I wasn't. So, after a month and twelve days, it's time to get this done...

Dialysis Weights:

13 Sep 16

Starting Weight:  103.1 Kg

Ending Weight:  100.7 Kg

Water Removed:  2.40 Kg

Start BP:  171/102     End BP:  153/65

15 Sep 16

Starting Weight:  102.8 Kg

Ending Weight:  100.9 Kg

Water Removed:  1.90 Kg

Start BP:  174/112     End BP:  124/86

17 Sep 16

Starting Weight:  103.4 Kg

Ending Weight:  100.6 Kg

Water Removed:  2.80 Kg

Start BP:  166/106     End BP:  121/79

20 Sep 16

Starting Weight:  104.2 Kg

Ending Weight:  100.5 kg

Water Removed:  3.70 Kg

Start BP:  177/110     End BP:  143/101

22 Sep 16

Starting Weight:  103.2 Kg

Ending Weight:  100.7 Kg

Water Removed:  2.50 Kg

Start BP:  177/106     End BP:  144/70

24 Sep 16

Starting Weight:  102.7 Kg

Ending Weight:  101.1 Kg

Water Removed:  1.60 Kg

Start BP:  167/108     End BP:  148/86

27 Sep 16

Starting Weight:  103.5 Kg

Ending Weight:  101.0 kg

Water Removed:  2.50 Kg

Start BP:  159/97     End BP:  145/87

29 Sep 16

Starting Weight:  102.9 Kg

Ending Weight:  100.8 Kg

Water Removed:  2.10 Kg

Start BP:  150/95     End BP:  109/68

01 Oct 16

Starting Weight:  101.3 Kg

Ending Weight:  101.3 Kg (No Kidding!)

Water Removed:  00.00!

Start BP:  178/100     End BP:  140/93

04 Oct 16

Starting Weight:  103.7 Kg

Ending Weight:  100.9 Kg

Water Removed:  2.80 Kg

Start BP:  188/121     End BP:  156/99

06 Oct 16

Starting Weight:  102.8 Kg

Ending Weight:  100.7 Kg

Water Removed:  2.10 Kg

Start BP:  158/105     End BP:  163/58

08 Oct 16

Starting Weight:  101.7 Kg

Ending Weight:  100.7 Kg

Water Removed:  1.00 Kg

Start BP:  145/90     End BP:  148/88

11 Oct 16

Starting Weight:  103.7 Kg

Ending Weight:  100.7 Kg

Water Removed:  3.00 Kg

Start BP:  189/112     End BP:  152/93

13 Oct 16

Starting Weight:  102.6 Kg

Ending Weight:  100.7 Kg

Water Removed:  1.90 Kg

Start BP:  171/110     End BP:  161/92

15 Oct 16

Starting Weight:  102.4 Kg

Ending Weight:  100.7 Kg

Water Removed:  1.70 Kg

Start BP:  196/107     End BP:  140/89

18 Oct 16

Starting Weight:  104.2 Kg

Ending Weight:  100.3 Kg

Water Removed:  3.90 Kg

Start BP:  165/126     End BP:  141/87

20 Oct 16

Starting Weight:  103.1 Kg

Ending Weight:  100.7 Kg

Water Removed:  2.40 Kg

Start BP:  148/92     End BP:  169/97

22 Oct 16

Starting Weight:  102.7 Kg

Ending Weight:  100.9Kg

Water Removed:  1.80 Kg

Start BP:  160/99     End BP:  138/105

Stability is the word of the day with the weights and BP. With only a few exceptions, I am maintaining these things properly. And that 01 Oct 'No Weight Net Loss' is just weird. Even the tech and a nurse had never seen that one before. The BP was lower, which is the only indicator that I had been on dialysis at all! VERY odd!

October Labs:

*Albumin (18 Oct): 4.10 g/dL     (No Change from 16 Aug)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (18 Oct): 9.90 G/dL    (-0.60 g/dL from 09 Sep)
  (A Measure of Anemia)

*Ca Corrected (04 Oct): 10.2 mg/dL     (+0.20mg/dL from 09 Sep)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (04 Oct):  4.60 mg/dL    (-0.60 mg/dL from 09 Sep)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (18 Oct):  222 pg/mL     (-138 pg/mL 16 Aug)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (18 Oct):  5.2 mEq/L    (-0.20 mEq/L from 06 Sep)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (04 Oct):  1.67     (-0.04 from 06 Sep)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

Just the one Red number in this month's labs; and the one is something I cannot do much about, aside from taking my Dialyvite (dialysis vitamin) and my regular daily vitamin. If this goes too low, I will receive vitamin D injections while on dialysis until this stabilizes once again.

As I mentioned at the beginning of this post, I have been extremely tired. My average sleep around dialysis is now averaging about 20 hours. But even with all that sleep, I am still dragging myself around, getting little accomplished from day to day. I am hoping this is temporary, but with everything else going on, it may not be.

My appetite is terrible...shocker there! My one decent meal per day is becoming less and less as foods are just not appetizing. Even my snacking is down way too much. Things are tasting way too heavy (fatty/greasy) that normally wouldn't, lessening my ability to even think about many snacks, let alone eating them. As a result, I am experiencing more nausea (due to lack of food), have decreased energy--hence the extra tiredness--and am sleeping more as my body tries to compensate for everything that is happening.

Fun!

I don't remember if I told you that I had my now yearly flu shot in September, with zero evident side effects. A pneumonia shot this year is still pending.

I go for an Echocardiogram this afternoon in preparation for transplant. In my Yearly Transplant Review the Team Nephrologist ordered the test and stated that "this is a test that precedes transplant." For purposes of transplant--at least for me--there are no special preparations. I just have to show up.

So what exactly is an Echocardiogram?

From MedicineNet.com: "An  echocardiogram (echo=sound + card=heart + gram=drawing) is an ultrasound test that can evaluate the structures of the heart, as well as the direction of blood flow within it. Technicians specially trained in echocardiography produce the images and videos, often using a special probe or transducer that is placed in various places on the chest wall, to view the heart from different directions. Cardiologists, or heart specialists, are trained to evaluate these images to assess heart function and provide a report of the results. The echocardiogram is just one of the many tests that can be done to evaluate heart anatomy and function."

In short, this is one last cardiological test to determine whether or not my heart is healthy enough to endure the transplant procedure. I am not the least bit worried about the outcome as I already know from several previous heart tests that my heart is as fit as a twenty year olds'. This is just a formality ahead of my transplant.

As far as dialysis goes, my artificial graft has been holding up well with just a single leaking incident since early September. In spite of this, I am, still considering leaving the chest catheter in place until I get my transplant. This would just mean I have an established backup for dialysis should the graft have any serious problems. That way, I could avoid having another surgery to re-place the catheter, should to need arise. I really need to talk with my vascular surgeon about this before taking that step.

I was looking through the post-Transplant handbook I was given by the Transplant Team (ahead of time, I might add, because I'm so awesome!)  :o)   

In it I read about the values I must record every single day. These are:

-Weight

-Blood Pressure

-Temperature

-Labs (Whenever they are drawn)

To this end I have already created a daily record so that each are recorded properly. The Transplant Team requires your knowing exactly where each of these values are at as these are the best early indicators of a possible organ rejection. If the values are off, the Team will adjust meds to compensate. Doing this adjusting is vital to the health of your transplanted organ. So, dedicate yourself to recording these values every day; preferably at the same time so that doing so becomes a habit in your daily routine.

The labs will eventually reduce to once per month, so understanding the results is another vital thing to do for any transplant patient. I will be sure to ask lots of questions--once I've had my transplant--and do research so that I have a full understanding of the labs.

Again, doing all of this and educating yourself is only in your best interest!  So, if you are a transplant recipient, there are no excuses good enough for you to fail to gain the understanding of what your labs mean, and what they potentially indicate! it's YOUR health after all, and if you don't care, who will? (Besides your Transplant Team, of course.)

Once I have my transplant, I will start giving the info in the post-Transplant book as the information it contains is absolutely essential to the survival of any and all transplant patients, and their caretakers.

That's all I have for now.

I will do my best to avoid having 42 days pass before my next entry.

Good Health to All!

ScottW

My Echocardiogram went extremely well! Normally the test takes about 25 minutes. During my test, new equipment was being used, and the techs asked if I'd mind things going slower so teaching could occur; to which I assented.
The new machine is a 3-D capable sensor that gives a really cool picture of both the inside and outside of the heart, and can rotate in any direction giving physicians and technicians unprecedented visualization of a patients' heart.
I got to see every inch of my heart, saw my catheter sitting in the aorta, my blood vessels of all sorts clear and free of any obstructions or limitations.
In all, my test took over an hour.
In the meantime, I got to ask lots of questions, was given tons of information--which I absolutely loved!--and just really enjoyed this non-invasive ultrasound procedure. All I had to do was remove my shirt, lay on first my L side, then on my back, take a few deep breaths and that was all. Really easy!

The results were as expected...

...My heart is healthy and fit as a fiddle going into my transplant. There were ZERO issues or concerns.

So, that last major test is out of the way.

I emailed my Transplant Coordinator the news, and for the first time, she wrote back to tell me that she would bring the test info to the attention of the Transplant Committee [the next week], then get back to me--something she has never done before!
Sure, she has updated my standing, but to actually present the latest findings to the committee for possibly moving me up for actual transplant consideration, THAT was something entirely new, and very unexpected.

WOW!

My transplant really IS getting close!

Scary...and Exciting!

ScottW

Transplant Position News

Yesterday I received an email from my transplant coordinator updating me on my place on the Transplant Recipient list. The following is the email I received from my coordinator:

..."Scott’s place on the list:  Disclaimer …. this is not a guaranteed, set in stone number. It changes daily and only takes IMC’s active patients into consideration, not the University of Utah who shares the list in Utah. With that being said – I told you #11 when you were here based on one report from early June of this year. Per the UNOS list, he is 14. {If you} subtract the high PRA patients from that list, Scott is 9.

You requested Scott’s KDPI score.  KDPI = Kidney Donor Profile Index – this number is assigned to the donor.

Scott is a recipient, so we look at his EPTS score.  EPTS = Estimated Post Transplant Survival score – this number is assigned to the recipient.

Scott’s EPTS = 34%.  This means Scott will receive offers from donors with a KDPI between 21-34%, preferably. But, he will also receive offers from donors with KDPI scores up to 85%.

Great News! I am about where I thought I'd be in my previous blog. With the Holidays approaching, my standing will only get higher over a relatively short period of time.

So, you are probably asking, 'What are those numbers, and what do they mean?'

Here's a brief explanation for each one:

PRA  (from CIDPUSA.com)

                                           "What's IS PRA?

Panel Reactive Antibody (PRA) – Measures  Immune system activity. Higher PRA means more antibodies are being made.  The less activity here, the better chance the body will not reject the transplanted kidney. Immune system activity test. The calmer your immune system is, the easier it will be to get a kidney.  A higher immune system activity means your body fights foreign objects (like a transplanted kidney) more vigorously. Blood transfusions, pregnancy, previous transplant(s) or a current infection can cause your immune system to be more aggressive.

PRA is a blood test that measures the level of antibodies in your blood. The more antibodies that are seen, the more difficult it will be to find a compatible donor. A normal person’s PRA can be anywhere from 0% to 99%. The PRA should be low; the lower it is the better your chances of having a transplant accepted by your body. If the PRA is [high] in the 90’s, you are a poor candidate for a transplant as your antibodies will reject the new kidney.

You can develop a high PRA from blood transfusions, an earlier transplant or from being pregnant."

KDPI (from US Dept of Health and Human Services)

"The Kidney Donor Risk Index (KDRI) combines a variety of donor factors to summarize the risk of graft failure after kidney transplant into a single number. The KDRI expresses the relative risk of kidney graft failure for a given donor compared to the median kidney donor from last year; values exceeding 1 have higher expected risk than the median donor, and vice versa.
The KDPI is a remapping of the KDRI onto a cumulative percentage scale, such that a donor with a KDPI of 80% has higher expected risk of graft failure than 80% of all kidney donors recovered last year and can be used to compute KDPI and KDRI for a hypothetical or actual donor. The calculations and assumptions mirror those used for computing KDPI and KDRI in DonorNet^®."

EPTS Score (from  US Dept of Health and Human Services)

"An Estimated Post Transplant Survival (EPTS) score is assigned to all adult candidates on the kidney waiting list and is based on four factors:

1. Candidate time on dialysis
2. Current diagnosis of diabetes
3. Prior solid organ transplants
4. Candidate age

A candidate's EPTS score can range from 0% to 100%. The candidates with EPTS scores of 20% or less will receive offers for kidneys from donors with KDPI scores of 20% or less before other candidates at the local, regional, and national levels of distribution. The EPTS score is not used in allocation of kidneys from donors with KDPI scores greater than 20%.

To calculate an EPTS score for a hypothetical or actual candidate, please enter data for each required variable below.
-DOB
-Age

-Has the candidate had regularly administered dialysis for ESRD? Yes No
-Current Diabetes Staus (Y/N, Type)
-Number of previous Solid Organ Transplants

..........................................................................................................................................
Now, after all those explanations, you might still have questions. That's OK, because I am STILL getting all of this down myself.
Briefly...

My PRA (antibody score) is 0. That is THE best score anyone can have. A zero "0" PRA means that you have no antibodies, and are able to take any compatible organ.

At 34, my EPTS score is well below average for a man of my age. Most men at 53 would hav a score in the high 50's to low 60's. I attribute the low score to a lifetime of exercise and 100% compliance to everything expected of me by my physicians, dialysis team and transplant team.
In short, because of my very low EPTS score, I will be offered a low KDPI organ, which will give me the greatest chance that my transplant will last me the rest of my life.

(Remember, the KDPI score is given to the donor, which is then matched with a similarly scored EPTS patient.)

Got it?

Yeah. Me neither...but I'm getting there! :o)

If you have questions about any of this, please ask me. If I don't know the answer, I'll go find it. Doing so only helps me to solidify my knowledge, so I really don't mind searching for the information.

Anyhow, after all of that, I am at #9 on the transplant list! That is AWESOME news!

Good Health to All!

ScottW