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

12 September 2016

I know it has been longer than I like between posts, but I wanted to get two appointments finished before I wrote. And a third is happening this afternoon; but with dialysis tomorrow, I really didn't want to wait at least two more days before posting this update. I'll just add on a report about my Transplant Committee Yearly Review (today's appointment) to the end of this one, so if you read this before I add on, please check back to read up on the latest with Transplant!
So, let's get started...

Dialysis Weights:

23 Aug 16

Starting Weight:  102.5 Kg

Ending Weight:  100.2 Kg

Water Removed:  2.30 Kg

Start BP:  185/89     End BP:  123/98

25 Aug 16

Starting Weight:  102.3 Kg

Ending Weight:  100.3 Kg

Water Removed:  2.00 Kg

Start BP:  144/91     End BP:  116/65

27 Aug 16

Starting Weight:  102.2 Kg

Ending Weight:  100.6 Kg

Water Removed:  1.60 Kg

Start BP:  127/84     End BP:  126/73

30 Aug 16

Starting Weight:  103.7 Kg

Ending Weight:  100.3 Kg

Water Removed:  3.40 Kg

Start BP:  164/104     End BP:  114/76

01 Sep 16

Starting Weight:  101.7 Kg

Ending Weight:  100.3 Kg

Water Removed:  1.40 Kg

Start BP:  129/83     End BP:  114/76

03 Sep 16

Starting Weight:  103.1 Kg

Ending Weight:  100.2 Kg

Water Removed:  2.90 Kg

Start BP:  155/101     End BP:  113/72

06 Sep 16

Starting Weight:  103.5 Kg

Ending Weight:  100.2 Kg

Water Removed:  3.30 Kg

Start BP:  164/101     End BP:  102/61

08 Sep 16

Starting Weight:  102.6 Kg

Ending Weight:  100.4 Kg

Water Removed:  2.20 Kg

Start BP:  153/115     End BP:  100/80

10 Sep 16

Starting Weight:  102.9 Kg

Ending Weight:  100.3 Kg

Water Removed:  2.60 Kg

Start BP:  178/102     End BP:  100/70

As you see, my ending BP's are starting to have a problem with being too low. Remember, my Vascular Surgeon needs the end BP to be greater than 110 systolic. This helps the artificial graft to stay open.

*A slightly hypertensive patient has a greater ability of keeping the flow going through an artificial graft.

So, as my ending BP goes down, I get to increase my dry weight which will now go to 100.5 Kg. This probably isn't the last time I will increase my dry weight to accommodate a lowering BP.

September 2016 Labs

*Albumin (16 Aug): 4.10 g/dL     (+0.10 g/dL from 19 Jul)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (09 Sep): 10.50 G/dL    (-0.30 g/dL from 02 Aug)
  (A Measure of Anemia)

*Ca Corrected (09 Sep): 10.0 mg/dL     (+0.20mg/dL from 02 Aug)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (09 Sep):  5.20 mg/dL    (+0.40 mg/dL from 02 Aug)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (16 Aug):  360 pg/mL     (+97 pg/mL 19 Jul)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (06 Sep):  5.4 mEq/L    (+0.20 mEq/L from 02 Aug)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (06 Sep):  1.71     (-0.07 from 02 Aug)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

GREAT September labs! All greens is the best way to go! All my efforts once again pay off with terrific lab results! See....I told you it wasn't that difficult to accomplish!  :o)

Now. my news...

I had my yearly Dental Clearance last Wednesday, and all my efforts in that area are paying off, as well. After another year, my teeth are in great shape with no cavities and zero infections! I also had my teeth cleaned the same day. I should be doing this every six months, but with everything that has happened since last Thanksgiving, I never got to it. At least I had a great reason, and it wasn't because I was just blowing the cleaning off.

Anyhow, I have the Dental Clearance form in-hand and will be taking to my Transplant Coordinator this afternoon.

Also, last Friday I had my latest Eye Exam. Not that I had to do it for transplant again, but just because it has been four years since my last exam (and the initial Transplant Clearance). So, after these four years, my eyesight is still 20/20, with no astigmatism or cataracts. The only thing I need to do for my eyes is update the Rx on my reading glasses for the Ocular Divergence that I have had for decades.

Remember, the Ocular Divergence has nothing at all to do with sight. It is merely the muscles around the eyes not being strong enough to keep the eyes centered. The glasses are slightly prismatic on the sides in order to keep the muscles in the proper position for reading.

*This condition must be diagnosed by an Opthamologist, as an Optometrist won't recognize this muscular issue.

OK, on with everything else...

As far as how I'm feeling since my last post, all I can say is, 'More of the same.' More exhaustion; more sleepiness; more poor appetite, etc. Again, this isn't anything I am or am not doing. This has everything to do with no kidneys, and only so/so dialysis treatments. So/so because of continuing to use the Central Line as the flow is not as good as using the artificial graft.

During Tx (treatment), on the Central Line, the maximum flow I can do is 400. On the graft, it is 450. As I explained before, the higher flow with the graft is able, over the course of a weeks' Tx's, to deliver the equivalent of one additional dialysis session in the same amount of time.

This additional flow means my blood is cleaner by far every week that passes on the graft.

Luckily for me, I began using the graft again 5 sessions ago.

So far, there has been no more leakage. My Vascular Surgeon, whom I saw on 31 August, said (after viewing the latest ultrasound mapping) that the graft has integrated with my arm quite nicely, the flow is fantastic at over 1700+ (the goal is at least 1000) and it seems to be working properly.

As for the leakage, he could not explain it. However, he instructed me to have the venous side venipunctures--the suspected side for the leakage--done more in the middle of the venous side of the graft rather than near the top of the loop distal to the elbow. And,

I have used the instructed venipuncture area for five treatments now, and there is no leakage whatsoever! I must have about one months' worth of successful dialysis sessions before the Vascular Surgeon will even consider removing the Central Line. I'm OK with that! So many problems with my R arm access have led me to being very cautious with anything regarding it. When, or if, it actually gets excised, I will let you know right away!

That's all I have for now. As I stated earlier, I have my Yearly Transplant Committee Review this afternoon. This years' review is the briefer one, which means no cardiac or other testing, and the review should only take about an hour. Also, I will add on the report about my review at the end of this blog.

Until then...

Good Health to All!

ScottW

14 Sept 2016

Some great news!

During my yearly transplant committee review on Monday afternoon, all the various committee members (Financial, Dietician, Nephrology, Social and Coordinator) were extremely pleased with how I am doing, and especially my 100% compliance on every area they look at. I have even offered my assistance to the committee as a guest speaker for the new patient orientations.

As with my initial visit, I would offer tips for meeting compliance, encourage the patients with helpful thoughts, answer questions, etc. I am offering this because the person I had to listen to was probably the worst possible patient you could want as he droned on endlessly about his sad life story and what got him to needing a transplant. There was no insight, no help; I just left with nothing gained and more questions.

So, I figure that after my experience and getting things right, that I could pass on the knowledge of what was helpful, how to move forward, how to think, etc.

Now, the news...

In meeting with me, my coordinator informed me that as of early June (of this year), I was at #11 for my blood type. That's a full 24 spots higher than April, which means I am likely in the mid single digits right now! If all goes as anticipated, I should have my transplant by the end of the year, or shortly thereafter! Woo-Hoo!  :o)

There are, of course, no guarantees on that timeline, but the committee does not foresee any further bumps downward on the list as the shakeout from the UNOS rules changes (in Dec. 2014) has finished, and wait times should now be more accurate.

About the only thing holding up any delay would be a lack of donor or cadaveric organs, and with the Holidays approaching, it is a grim reality that a large number of cadaveric organ donations will become available over the next three months.

While sad for those who lose a loved one, the gift of life gives happiness to many others who benefit the tragedy.

So, in any thoughts or prayers for me, please remember those whose life is lost so that I might regain mine. Also remember the families who are impacted and seek for their comfort, as well.

A Quick Update

I have some good news...

...As of Friday afternoon, I am officially BACK on the Active Transplant List. I had called my coordinator on Thursday afternoon, and my return to Active status was confirmed about 24 hours later.
So...more carrying my phone 24/7.

I have my eye exam and dental clearance both coming up next week, followed by my yearly transplant committee review the week after.

Lots coming up...

21 August 2016

More than two weeks have gone by since my last entry, so lets get going...

Dialysis Weights:

06 Aug 16

Starting Weight:  101.6 Kg

Ending Weight:  66.7 Kg

Water Removed:  1.90 Kg

Start BP:  155/87     End BP:  126/108

09 Aug 16

Starting Weight:  102.1 Kg

Ending Weight:  100.0 Kg

Water Removed:  2.10 Kg

Start BP:  159/101     End BP:  161/109

11 Aug 16

Starting Weight:  102.3 Kg

Ending Weight:  100.0 Kg

Water Removed:  2.30 Kg

Start BP:  138/87     End BP:  156/104

13 Aug 16

Starting Weight:  102.9 Kg

Ending Weight:  100.2 Kg

Water Removed:  2.70 Kg

Start BP:  141/81     End BP:  124/103

16 Aug 16

Starting Weight:  102.9 Kg

Ending Weight:  100.3 Kg

Water Removed:  2.60 Kg

Start BP:  153/91     End BP:  100/71

18 Aug 16

Starting Weight:  102.1 Kg

Ending Weight:  100.1 Kg

Water Removed:  2.00 Kg

Start BP:  146/89     End BP:  114/83

20 Aug 16

Starting Weight:  103.1 Kg

Ending Weight:  99.8 Kg

Water Removed:  3.30 Kg

Start BP:  155/97     End BP:  113/86

While my weights have all been in line, the BP readings have been all over the place. The entry readings are OK, but the exit readings range from great to bad; especially looking at the Diastolic reading (the second of the two). Some are great, while others are not good at all. I don't really know what I can do to rectify this, aside from everything I am doing right now.

Just another ten days until I call my Transplant Coordinator and place myself back on the Active List. It's been odd not having to be on guard 24/7 with my phone this month. Relaxing, but odd. Soon enough I will have my phone with me 24/7 once again. Hopefully, I get my call soon. I am no longer hoping for any time frame. I've been disappointed too many times since the new UNOS rules went into effect. From now on my attitude about receiving my call is, 'I'll believe it when I get it.' This leads to much less anticipation and disappointment.

In the meantime, I will continue keeping my mind in a good place, challenging myself mentally with games of logic, strategy and timing (this keeps my brain sharp), and do everything I must in order to be as healthy as possible going into the transplant. Doing both will help to ensure as successful a post-transplant outcome as can be expected--aside from organ rejection from extraneous reasons completely out of my control.

I continue to sleep more than usual. Over the past week or more, my average sleep around each dialysis treatment (Tx) has ranged from 18-22 hours. That is up significantly from 13-17 hours. It is what it is, and I work hard to prevent frustration from creeping up on me due to the sheer number of hours I am now sleeping. After all, excessive sleep is why I received my disability judgement, so why be upset that I am doing a great job at earning my monthly payment?

Along with the sleeping increase, I am also napping more each day; anywhere from 15-45 minutes several times each day. Like I said, it is what it is. No frustrations.

My appetite continues to be poor. Even my once per day decent meal has become 'once per day so-so' meal. Finding palpable foods is becoming more difficult as even the slightest off-putting factor is increasingly making foods unappetizing. Oh, for the transplant and pretty much every food looking great once again! I'll get there...

I don't remember if I mentioned, but due to the latest leakage in my arm during dialysis [from the graft], during an appointment in which I was going to have the chest tube removed [at the end of the month], I am now going to have the graft mapped to assure it is working properly, and discuss with my vascular surgeon how to prevent leaks from the graft, and whether or not eliminating heparin from the dialysis Tx will lead to the graft clotting off due to my high blood clotting factor. I will definitely let you know on that. In the meantime, I will continue to use the chest catheter exclusively...again...

That's about all I have for today. I will wait until that appointment with my vascular surgeon until I make my next entry. That will be on the 31st of the month, so be looking for a new entry after that.

Until then...

Good Health to All!

ScottW

05 August 2016

My latest labs came back already, so let's get into them...

August 2016 Labs:

*Albumin (19 Jul): 4.00 g/dL     (-0.20 g/dL from 21 Jun)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (02 Aug): 10.80 G/dL    (-0.40 g/dL from 05 Jul)
  (A Measure of Anemia)

*Ca Corrected (02 Aug): 9.80 mg/dL     (-0.50mg/dL from 05 Jul)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (02 Aug):  4.80 mg/dL    (-1.00 mg/dL from 05 Jul)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (19 Jul):  263 pg/mL     (+42 pg/mL 21 Jun)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (02 Aug):  5.2 mEq/L    (+0.60 mEq/L from 05 Jul)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (02 Aug):  1.64     (-0.04 from 05 Jul)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

Albumin is the only number with a Red. That means I have been working on, and doing, everything I should be. Diet, fluids, etc.

Once again, following the guidance and recommendations of your physicians, nurses, techs, etc is NOT difficult to do! You simply have to choose to follow their instructions. Do that and you will be healthier, happier and everything will not seem like such a terrible burden. That's never to say that dialysis won't suck...it always will!...but you will be able to hold off complications that would otherwise pop up simply because you refuse to properly take care of yourself. Plus, your mind will be in a much better place, as well!

Remember also, that your Potassium (K+) numbers will go up and down, no matter how compliant you are to the renal diet. All you do is control the intake of K+ rich foods, and avoid becoming frustrated when the labs come back higher than the established range. When that happens--and it will!--just assure that you are avoiding tomatoes, potatoes, certain juices, etc. Having these once in a while is OK...but when you need to get your labs back in line, you already know what to do!

Dialysis Weights:

*For some reason I still don't understand, there is a two week gap in where I record my weights each dialysis session. So, don't be thrown by the gap...

12 Jul 16

Starting Weight: 104.7 Kg 

Ending Weight:  101.3 Kg

Water Removed:  3.40 Kg

Start BP:   210/94  End BP:  120/82

14 Jul 16

Starting Weight:  103.5 Kg

Ending Weight:  100.2 Kg

Water Removed:  3.20 Kg

Start BP:   187/112  End BP:  113/85

28 Jul 16

Starting Weight:  102.2 Kg

Ending Weight:  99.7 Kg

Water Removed:  2.50 Kg

Start BP:   176/94  End BP:  99/55

30 Jul 16

Starting Weight:  102.1 Kg

Ending Weight:  99.7 Kg

Water Removed:  2.40 Kg

Start BP:   159/99  End BP:  101/71

02 Aug 16

Starting Weight:  103.9 Kg

Ending Weight:  100.7 kg

Water Removed:  3.20 Kg

Start BP:   176/106  End BP:  123/61

04 Aug 16

Starting Weight:  102.7 Kg

Ending Weight:  99.9 Kg

Water Removed:  2.80 kg

Start BP:   159/96  End BP:  105/68

And that brings you up to speed. My weights have been good, and when a Tuesday weight is high, I take until Saturday to get it back to where it should be. This is on purpose so that I avoid excessive cramping, and a possible drop in BP that would leave my artificial graft closed and unusable. As it is, I may push my dry weight up half a kilogram because the longer I am at the 99.5 Kg weight, the more the ending BP is lower than I want (110+ systolic minimum).

As far as my sleep goes, I am getting LOTS! Yesterday, I had 5 hours pre-dialysis, slept one hour during treatment, went home and slept 9 hours, then fell asleep again during the night for 6 more; bringing the sleep to 21 total hours! That's a new record for me. Without my kidneys, it seems that the longer I go, the more sleep I'm getting. I have no idea if anyone else experiences this or not; I'm just talking about what I am going through.

And that is all I have for today. I am trying to be cognizant of the passage of time, and have been doing a good job with my recent posts. Let's hope this continues

Have a fantastic week, everyone!

Good Health to All!

ScottW

**Oh, By The Way: I placed myself on Voluntary Hold on the Transplant List for the month of August. I did this because August is one of three times every year that my wife is horridly busy at her work, and there is no one that could just step in and do her job in the event I get my transplant call. So, I did what had to be done so that she avoids that happening.
YES, I will still accumulate time on the list; I just won't be receiving a call at any time during August.
On September 1st I will call my coordinator and reinstate myself to the Active List.  sw