23 December 2015

Another brief entry today...

The graft I had placed two weeks ago has failed. The vascular surgeon was concerned this might happen based on what he saw during the surgery to place the graft.

So, next Monday (28 Dec), I will have a fourth procedure this month to place one of two things. 1) An Artificial Loop Graft in my R arm to replace the Central Line that is now in my chest. 2) A Basilic Vein Transposition in my R arm. This would be the first of two surgeries if this option is used.

Of course, I know you are wondering why there are two possible surgeries. That's because the vasculature in my R arm may no longer be able to sustain the Loop Graft. In that case, the surgeon will opt to do the Basilic Vein Transposition. Unfortunately, he just won't know which option is best for me until he gets into my arm and sees which will be the better option.

So, after the surgery, I get to look forward to another two to three weeks of recovery...again.

I promise that I'll get all of this written out; it's just going to have to wait until I heal from this next surgery. (What fun!)

Again, May each of you have a Very Merry Christmas! May your homes be filled with the Love and Joy this Holiday Season so warmly brings.

Good Health to All!

ScottW

News for December 2015

Since my last post, a whole lot has happened. For now, I will give you the short, short version. Once my body heals, I will write what happened in more detail.
While on vacation in Phoenix, the dialysis clinic there messed up my perfect fistula. As a result, they sent me away only with instructions to "find someplace to dialyze."
I ended up at Good Samaritan Hospital. While there I received a temporary Central line in my neck. I did two consecutive rounds of dialysis, had the line removed and came home.

The day after arriving home I had another Central Line placed, this time in my R upper chest. This one is also temporary.
Then this past Monday I was having surgery again (for the third time in just over a week!)
to place a graft that circumvents the blockage in my fistula. So now, I am dialyzing on my regular schedule, but through the Central Line. Once my arm heals, I will lose the line and start doing dialysis through the graft.
I am still obviously healing from everything, so my typing is extremely limited. It could be a few more weeks before I write another entry.
In the meantime, I wish each and every person reading this a VERY MERRY CHRISTMAS! Happy New Year, too!

Good Health to All!

ScottW

P.s  My standing on the transplant list is unaffected! (Yay!!)

06 November 2015--Report on My Cardiac Stress Test

I had my once every 18 months Cardiac Stress Test, as required by the Transplant Committee. The test took place this past Wednesday at the IMC campus just outside of Salt Lake City.
The first step was a pre screening set of scans done on a combo MRI machine and rotating x-ray scanner.  This was followed immediately by hooking me up to a 12-Lead ECG and putting me on a treadmill. Unfortunately for me, my heart rate wouldn't rise enough (to 120-150 bpm), so I was given an IV Vasodilator, which simulates my vessels post-exercise as they flood organs with blood and oxygen.
Unfortunately for me, my body reacted negatively to the sudden and artificially imposed vasodilation, causing extreme nausea and then vomiting. Since I had no food in my stomach--due to eight hours of fasting prior to the test--all I got up was bile...and lots of it!...so the experience was over soon enough. As the drug was fast-acting, after I threw up, the episode was over, and I returned to the x-ray scanner and MRI for comparison shots of my circulatory system and heart.
Once they finished that round of images I was sent to the cardiologist who told me that everything looks great, and that he has zero concerns for my impending transplant. Also, as a precaution only, he wants me to do a lipid test to look at placque buildup in my arteries. He said that the stress test cannot determine placque, which can easily be controlled by a single med, if warranted. So, I am planning on doing this on Monday. It's just a quick blood draw, and will be nothing compared to dialysis needles. Of course, I will let you know the results when I get them.
So, great news on the cardiac aspect of things. That's another obstacle overcome. Now, if I could only get that transplant...

Good Health to All!

ScottW

**Update (18 Nov 15):  I called the lab for my lipid test results, and the following are the results:

ALT: (NR 12-61)  Result--22

Lipid Profile:

     Cholesterol: (NR 158-199) Result--160

     Triglycerides: (NR 58-149) Result--202

     HDL Cholesterol: (NR 40-63) Result--31

     Non-HDL Cholesterol: (NR <130 result--="" u="">129

     VLDL (?): (NR 12-29) Result--40

     LDL: (NR <100 nbsp="" result--="" u="">89

A few of these results are high, but I have no idea what they are in the first place. I'll have to look them up. For the most part, my cardiac labs look great, so no worries there. I haven't heard any follow-up from the Cardiologist, and unless I do, I'll chalk another one up as a win.
    

26 October 2015

I realize that more than a month has gone by since my last entry, and the only good--but true--reason is that I simply haven't had the energy to type up an entry. Unfortunately, writing my blog isn't the only thing that has gone unattended...

Dialysis Weights

12 Sep 15
Starting Weight:  96.7 Kg
Ending Weight:  93.5 Kg
Water Removed:  3.20 Kg
Start BP:  149/102     End BP:  100/62

15 Sep 15
Starting Weight:  96.7 Kg
Ending Weight:  93.6 Kg
Water Removed:  3.10 Kg
Start BP:  184/105     End BP:  99/66

17 Sep 15
Starting Weight:  96.1 Kg
Ending Weight:  93.5 Kg
Water Removed:  2.60 Kg
Start BP:  159/102     End BP:  117/71

19 Sep 15
Starting Weight:  97.0 Kg
Ending Weight:  94.3 Kg
Water Removed:  2.70 Kg
Start BP:  187/115     End BP:  117/76

22 Sep 15
Starting Weight:  98.0 Kg
Ending Weight:  94.0 Kg
Water Removed:  4.00 Kg
Start BP:  195/111     End BP:  101/61

24 Sep 15
Starting Weight:  96.1 Kg
Ending Weight:  93.5 Kg
Water Removed:  2.60 Kg
Start BP:  177/115     End BP:  116/78

26 Sept 15
Starting Weight:  96.5 Kg
Ending Weight:  93.4 Kg
Water Removed:  3.10 Kg
Start BP:  163/102     End BP:  97/64

29 Sep 15
Starting Weight:  97.4 Kg
Ending Weight:  93.5 Kg
Water Removed:  4.10 Kg
Start BP:  173/117     End BP:  104/71

01 Oct 15
Starting Weight: 96.4 Kg 
Ending Weight:  93.5 Kg
Water Removed:  2.90 Kg
Start BP:  176/107     End BP:  104/63

03 Oct 15
Starting Weight:  97.6 Kg
Ending Weight:  93.5 Kg
Water Removed:  4.10 Kg
Start BP:  156/107     End BP:  101/55

06 Oct 15
Starting Weight:  97.6 Kg
Ending Weight:  93.5 Kg
Water Removed:  4.10 Kg
Start BP:  192/118     End BP:  113/76

08 Oct 15
Starting Weight:  96.5 Kg
Ending Weight:  93.3 Kg
Water Removed:  3.20 Kg
Start BP:  152/98     End BP:  119/44

10 Oct 15
Starting Weight:  96.1 Kg
Ending Weight:  93.2 Kg
Water Removed:  2.90 Kg
Start BP:  173/107     End BP:  116/74

13 Oct 15
Starting Weight:  98.1 Kg
Ending Weight:  94.0 Kg
Water Removed:  3.90 Kg
Start BP:  179/113     End BP:  96/71

15 Oct 15
Starting Weight:  96.4 Kg
Ending Weight:  93.4 Kg
Water Removed:  3.00 Kg
Start BP:  145/103     End BP:  107/78

17 Oct 15
Starting Weight:  95.6 Kg
Ending Weight:  93.7 Kg
Water Removed:  1.90 Kg
Start BP:  147/99     End BP:  107/85

20 Oct 15
Starting Weight:  97.3 Kg
Ending Weight:  93.4 Kg
Water Removed:  3.90 Kg
Start BP:  176/120     End BP:  104/59

22 Oct 15
Starting Weight:  97.8 Kg
Ending Weight:  93.5 Kg
Water Removed:  4.30Kg
Start BP:  159/102     End BP:  97/34 (Umm...I don't believe that diastolic!)

24 Oct 15
Starting Weight:  96.3 Kg
Ending Weight:  93.5 Kg
Water Removed:  2.80 Kg
Start BP:  149/90     End BP:  106/73


(Whew! THAT took a while to transpose!)
Anyhooooo, my numbers are looking good. My pre and post weights are within reasonable gains and losses, and my dry weight--93.4 Kg--has been right on, or very close, most of the treatments.  Personally, I think I may have hit the bottom of my possible dry weight.
I have been at this level for four plus months now, and am still having cramping in both feet and legs following every session.


October 2015 Lab Work:

*Albumin (20 Oct): 4.00 g/dL     (-0.20 g/dL from 18 Aug)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (20 Oct): 9.90 G/dL    (-0.10 from 08 Sep)
  (A Measure of Anemia)

*Ca Corrected (06 Oct): 9.80 mg/dL     (-0.40mg/dL from 08 Sep)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (06 Oct):  4.70 mg/dL    (+0.70 mg/dL from 08 Sep)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (20 Oct):  267 pg/mL     (+48.0 pg/mL 18 Aug)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (20 Oct):  5.4 mEq/L    (-0.30 mEq/L from 06 Oct)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (06 Oct):  1.88     (+0.08 from 08 Sep)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

My Albumin continues to drop despite my efforts to eat enough protein. I don't doubt that, unless that rebounds, I'll be given another regimen of Liquicell at dialysis. I don't remember if I told you about Liquicell. It's a liquid form of protein that is given to dialysis patients specifically to raise their Albumin numbers. The Liquicell is a cough syrup-like liquid that is loaded with sugar, tastes a bit nasty (hence, the sugar), but delivers a whopping dose of protein for anyone needing it. I've had the regimen once before for about six doses. Some patients hate drinking the stuff, but it's really no big deal. You quickly down about two ounces after every dialysis session. That's it.

At the start of this blog I mentioned that I've been overly tired the past month. When I say overly tired, it's more like excessively tired. For some reason my energy has dropped to almost zero. I am sleeping more--on average about ten+ hours per day. I am also napping more once again, getting two or three hours each day. Plus, my appetite has plummeted, and appetite fatigue increasing. My mental energy is less, and I am unmotivated to get my blog entries done in any sort of a timely manner, along with pretty much anything else. My house chose have suffered, as have my obligations in other areas for those to whom I provide my time and service. I really don't like this development, and push myself whenever I can. My wife tells me to just let my body do what it needs in order to be as strong as possible for the transplant surgery and recovery. Sometimes, I wonder if I should be pushing myself harder, doing more, rather than sleeping and taking things easy.
I'm hoping this exhaustion will pass. We'll see...

Anyhow, I want to get this posted, so I will plan on doing another entry later this week to catch you up on the rest.

Until then, have a great week!

Good Health to All!

ScottW

 

11 September 2015

News on the transplant front that you'll want to know, plus my regular update...

I met with the Transplant Committee this past Wednesday for my yearly review. In short, they are extremely pleased with my progress on all fronts--dialysis, diet, labs, etc. 

However, due to the new UNOS rules, the U of U has added patients to their list from the State of Nevada, which has knocked my standing down significantly. Instead of being in the high single digits, I am now at #30. This is unwelcome news, to be sure. However, my name can still come up if a perfect match is found. So, the latest estimate is now another 4-6 months...at least.

Also, two new requirements have been added to the pre-transplant workup for the Shingles vaccination, and an updated MMR (Measles, Mumps, Rubella), if needed. I don't know if this is for all patients, or only those over a certain age--I didn't ask that.

Seeing that I had Chicken Pox three times when I was young, I am at a very high risk for shingles; a disease which can destroy a transplant. So doing this is a VERY good thing for me. Also, after the shingles inoculation, there is a one month soft hold on my List status due to the possible side effects of the vaccination.The MMR has the same soft hold period, so I will be getting both done at the same time--assuming both are needed--just so I don't double up the soft hold period.

During my appointment with the Committee, I also had a load of blood work done. Part of those results will tell me if I need the MMR. After I get those results I will be getting one or both shots. 

I also have to have a new Cardiac Stress test. This is done every eighteen months while on the transplant list to assure your heart is strong enough for the surgery and recovery. I will let you know how that goes.

So that's my Transplant Committee review news. Some good, some bad. All in all, I am in terrific shape heading into my transplant!

Dialysis Weights:

25 Aug 15

Starting Weight:  97.6 Kg

Ending Weight:  93.4 Kg

Water Removed:  3.20 Kg

Start BP:  194/118      End BP:  134/85

27 Aug 15

Starting Weight:  95.9 Kg

Ending Weight:  93.2 Kg

Water Removed:  2.70 Kg

Start BP:  170/115      End BP:  126/79

29 Aug 15

Starting Weight:  95.9 Kg

Ending Weight:  93.4 Kg

Water Removed:  2.50 Kg

Start BP:  175/113      End BP:  142/87

01 Sep 15

Starting Weight:  97.2 Kg

Ending Weight:  93.3 Kg

Water Removed:  3.90 Kg

Start BP:  189/104      End BP:  103/77

03 Sep 15

Starting Weight:  96.1 Kg

Ending Weight:  93.6 Kg

Water Removed:  2.50 Kg

Start BP:  185/113      End BP:  130/75

05 Sep 15

Starting Weight:  96.4 Kg

Ending Weight:  93.1 Kg

Water Removed:  3.30 Kg

Start BP:  172/106      End BP:  111/71

08 Sep 15

Starting Weight:  97.8 Kg

Ending Weight:  93.9 Kg

Water Removed:  3.90 Kg

Start BP:  184/106      End BP:  120/85

10 Sep 15

Starting Weight:  96.0 Kg

Ending Weight:  93.5 Kg

Water Removed:  2.50 Kg

Start BP:  185/112      End BP:  128/73

Pretty consistent weigh-ins, and I am hitting my dry weight most of the time. There's also a nice drop in my post-D BP readings. So on this front, my dialysis numbers are looking really good.

September 8, 2015 Lab Work:

*Albumin (18 Aug): 4.20 g/dL     (-0.20 g/dL from 21 Jul)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (08 Sep): 10.00 G/dL    (No Change from 18 Aug)
  (A Measure of Anemia)

*Ca Corrected (08 Sep): 10.2 mg/dL     (+0.10mg/dL from 04 Aug)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (08 Sep):  4.00 mg/dL    (-0.20 mg/dL from 04 Aug)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (18 Aug):  219 pg/mL     (+28.5 pg/mL from 21 Jul)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (08 Sep):  5.7 mEq/L    (+0.20 mEq/L from 18 Aug)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (08 Sept):  1.80     (+0.01 from 04 Aug)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

Well, the Potassium is doing its usual jumping around. A couple weeks ago it was at 5.4 mEq/L, and now it's in the high range. There isn't too much more I can be doing to stabilize this result. As I've stated before, the K+ will jump around no matter what I do.

All my other numbers are looking great. Even the Albumin, though at the low end of the range, is still in the green.

My headaches have taken a turn for the worse. Lately they have been a combined mixture of TMD related and dialysis headaches. The two factors make for some rather unpleasant days. Thank goodness I have the right meds to knock them down to manageable size!

Food-wise, I am doing about as well as I can. At least I've honed into the fact that only freshly prepared food is appetizing. This helps eliminate a lot of frustration when it comes to finding something to eat. Everything still has to be light--as in, not overly heavy in regards to fat/greasiness--but at least I finally know what to eat without off-putting my appetite.

My dreams remain completely in my control. Just last night I had another dream that I consciously altered so as to avoid anything frightening. Even though I have been doing this for over four decades, it never fails to amaze me that I can do this.

On that note, my sleep is still all over the place. Last week I had a day in which I slept for twelve hours, but then couldn't sleep for over a full day. This was followed by on and off sleep for the next two days. I still haven't had a full sleep (8-9 hours) on any given day (or night) in weeks. Even my post-D naps will range anywhere from four to seven hours of fitful sleep. All in all, I seem to be getting enough sleep to keep me functioning.

On the mental front, I am in a good place. Looking forward to everything upcoming is a challenge--especially after the latest transplant news--but the effort is well worth it. My day to day routine gets to be extremely boring; but I am keeping myself busy with a variety of activities that challenge my brain, or just keep it occupied.

I believe that is all I have for today. So, enjoy your week ahead, and keep smiling, despite your trials!

Good Health to All!

ScottW

23 August 2015

I was waiting for my latest (and updated) labs to come in before writing my next blog. They have, and are as follows:

August 18, 2015 Lab Work:

 *Albumin (18 Aug): 4.20 g/dL     (-0.20 g/dL from 21 Jul)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (18 Aug): 10.00 G/dL    (-0.90 G/dL from 21 Jul)
  (A Measure of Anemia)

*Ca Corrected (04 Aug): 10.1 mg/dL     (-0.10mg/dL from 07 Jul)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (04 Aug):  4.20 mg/dL    (+0.80 mg/dL from 07 Jul)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (18 Aug):  219 pg/mL     (+28.5 pg/mL from 21 Jul)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (18 Aug):  5.5 mEq/L    (+0.20 mEq/L from 28 Jul)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (04 Aug):  1.79     (-0.04 from 14 Jul)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

As indicated above, several of my latest numbers are hovering in or near the red. The Potassium, as you know, is expected to jump all over. The Hemoglobin and PTH will also move around. The big surprise is my Albumin. Will all the protein I ingest from day to day, I didn't expect this one to be so low. I already know what my doctor will say..."Eat more protein!" (long exhalation by me...)

Also, with my Hemoglobin on the edge of being too low, I anticipate having Iron injections starting up again at dialysis. I'll be surprised if these don't begin soon.

Dialysis Weights:

30 Jul 15

Starting Weight:  97.3 Kg

Ending Weight:  93.5 Kg

Water Removed:  3.80 Kg

Start BP: 187/114    End BP: 107/78

01 Aug 15

Starting Weight:  95.3 Kg

Ending Weight:  93.4 Kg

Water Removed:  1.90 Kg

Start BP: 150/88     End BP: 109/77

04 Aug 15

Starting Weight:  97.3 Kg

Ending Weight:  93.6 Kg

Water Removed:  3.70 Kg

Start BP: 212/117     End BP: 123/78

06 Aug 15

Starting Weight:  96.0 Kg

Ending Weight:  93.6 Kg

Water Removed:  2.40 Kg

Start BP: 191/115     End BP: 141/86

08 Aug 15

Starting Weight:  96.5 Kg

Ending Weight:  93.5 Kg

Water Removed:  3.00 Kg

Start BP: 180/105     End BP: 124/77

11 Aug 15

Starting Weight:  97.6 Kg

Ending Weight:  93.4 Kg

Water Removed:  4.20 Kg

Start BP: 179/111     End BP: 139/89

13 Aug 15

Starting Weight:  95.6 Kg

Ending Weight:  93.5 Kg

Water Removed:  2.10 Kg

Start BP: 199/112     End BP: 106/58

15 Aug 15

Starting Weight:  95.8 Kg

Ending Weight:  93.6 Kg

Water Removed:  2.20 Kg

Start BP: 176/111     End BP: 143/96

18 Aug 15

Starting Weight:  98.2 Kg

Ending Weight:  94.0 Kg

Water Removed:  4.20 Kg

Start BP: 189/120     End BP: 151/94

20 Aug 15

Starting Weight:  96.7 Kg

Ending Weight:  93.4 Kg

Water Removed:  3.30 Kg

Start BP: 198/119     End BP: 132/90

22 Aug 15

Starting Weight:  95.5 Kg

Ending Weight:  93.5 Kg

Water Removed:  2.00 Kg

Start BP: 161/98     End BP: 110/74

Well, excepting for a few spikes in weight, consistency is the name of the game of the weeks since my last entry. The spikes in my pre-weight are likely due to too much fluid intake, a/o excess weight in non-excreted waste. The fluid thing is an ongoing issue, and the waste thing has already been addressed. So maybe...just maybe I'll have some better, more consistent weights coming up...

I have been following my self-imposed plan on taking a stool softener each dialysis day. This has already led to better and more frequent BM's, and as a result, my starting weights have been lower overall. I will keep this going as it is obviously doing some good. If I start having diarrhea, that Tx (Treatment) will stop, of course.

Sleep has again been an issue. As indicated last entry, I am sleeping more again, and feeling excessively tired most of the time, as well. Along with that, I am sleeping a few hours a day more. I am getting 4-5 hours pre-D, and 7.5 hours post-D, then another 3-4 hours shortly after that. It's no fun being tired, but at least I can sleep whenever, and for as long as I need.

And on that subject, my dreams continue to be fully under my control. No nightmares recently; and the ones that start to go there are quickly changed by me on a conscious level. Having that control again is so comforting!

Appetite Fatigue has been a growing issue as of late. I am just sick of eggs, tired of eating such a regimented diet, and am done with foods turning my appetite off simply because they look, smell, or taste heavy (greasy), not fresh or simply unappetizing. I just want to eat...everything! Ah well...soon. Very soon...

On that line of thinking, I am getting fatigued with not drinking as much as I want. Even after all these years on dialysis I STILL want to chug every liquid I put to my lips! In a way, this is a very good thing. That means that the likelihood that I will drink enough post-transplant is very high. If I wasn't thirsty all the time, then I have been told that many dialysis patients actually dehydrate themselves because they are drinking too little while urinating with a healthy kidney again. So--frustratingly enough--thirst away!

I am completely ready--well, as completely as I can be--for my transplant. My "Go Bag" is stocked and packed, I have my list of items to grab, placed a list of my current meds and of people to contact [about the transplant] in my bag, we bought additional pillows for my home recovery time, I have hand sanitizer around the house and in the car, and we are getting maintenance and brakes done on the car over the next week. We already keep our car's gas tank between Full and Half because you never know when the call will come in, and you don't want to be stuck on the side of the road because, in your haste to get to the hospital, you forgot to fill up the tank!   Like I said, as ready as I can be.

My nausea over the last three weeks has been better overall. I have had several days that I haven't taken any Zofran, and a few times at dialysis that I didn't get any pre-Tx. Of course, there have been other days that I have taken Zofran every four hours all day long, and munching on my soft TUMS chews between. In all, there has been a definite difference with my nausea. Addressing the whole BM thing certainly helps this, as well.

Mentally, I am doing better. I had a few weeks that found me a touch glum, but I have since bounced back to my old self. When you're dealing with a chronic illness, there will be times that you feel tired of it all; but it is best to get out when you can, walk in places that lift your heart, do some laughing, smile a lot, and just have your burden lifted for a few hours. Doing these things does wonders for your mental state amidst your trials.

And that is all I have, for now.

Looking forward to the next chapter!

Good Health to All!

ScottW

29 July 2015

*(With the latest Windows 10 update, some of my type settings in various programs are very different...as you can clearly see below. Hopefully, that can be altered....in a week or two...or six...just kidding!) :o)

After my flippant previous entry, you'd think I'd get to the next entry within short order...
...ummm, that would be a firm, resounding, "NO!" I won't even try to make an excuse as to why it took me nearly a month and a half to get this entry written, so let's just get into it...

Dialysis Weights

18 Jun 15
Starting Weight: 96.8 Kg
Ending Weight: 94.0 Kg
Water Removed: 2.80 Kg
Start BP: 195/120 End BP: 123/84

20 Jun 15
Starting Weight: 97.3 Kg
Ending Weight: 93.8 Kg
Water Removed: 3.50 Kg
Start BP: 179/113 End BP: 123/81

23 Jun 15
Starting Weight: 97.3 Kg
Ending Weight: 94.0 Kg
Water Removed: 3.30 Kg
Start BP: 190/118 End BP: 139/86

25 Jun 15
Starting Weight: 96.6 Kg
Ending Weight: 93.8 Kg
Water Removed: 2.80 Kg
Start BP: 193/117 End BP: 122/98

27 Jun 15
Starting Weight: 96.8 Kg
Ending Weight: 93.8 Kg
Water Removed: 3.00 Kg
Start BP: 188/119 End BP: 134/94

30 Jun 15
Starting Weight: 97.2 Kg
Ending Weight: 94.1 Kg
Water Removed: 3.10 Kg
Start BP: 194/121 End BP: 161/103

02 Jul 15
Starting Weight: 97.0 Kg
Ending Weight: 93.9 Kg
Water Removed: 3.10 Kg
Start BP: 165/108 End BP: 108/78

04 Jul 15
Starting Weight: 96.7 Kg
Ending Weight: 93.8 Kg
Water Removed: 2.90 Kg
Start BP: 165/107 End BP: 160/106

07 Jul 15
Starting Weight: 97.4 Kg
Ending Weight: 94.0 Kg
Water Removed: 3.40 Kg
Start BP: 189/110 End BP: 121/78

09 Jul 15
Starting Weight: 96.7 Kg
Ending Weight: 93.6 Kg
Water Removed: 3.10 Kg
Start BP: 178/117 End BP: 114/86

11 Jul 15
Starting Weight: 96.3 Kg
Ending Weight: 93.5 Kg
Water Removed: 2.80 Kg
Start BP: 201/111 End BP: 135/88

14 Jul 15
Starting Weight: 97.2 Kg
Ending Weight: 94.0 Kg
Water Removed: 3.20 Kg
Start BP: 196/121 End BP: 146/84

16 Jul 15
Starting Weight: 96.4 Kg
Ending Weight: 93.4 Kg
Water Removed: 3.00 Kg
Start BP: 163/106 End BP: 156/88

18 Jul 15
Starting Weight: 96.2 Kg
Ending Weight: 93.6 Kg
Water Removed: 2.60 Kg
Start BP: 189/129 End BP: 139/87

21 Jul 15
Starting Weight: 97.9 Kg
Ending Weight: 94.2 Kg
Water Removed: 3.70 Kg
Start BP: 194/121 End BP: 129/81

23 Jul 15
Starting Weight: 96.6 Kg
Ending Weight: 93.3 Kg
Water Removed: 3.30 Kg
Start BP: 172/113 End BP: 110/48*
*This ending BP is NOT correct. If it was, I would not have been able to stand, and possibly be unconscious.

25 Jul 15
Starting Weight: 96.6 Kg
Ending Weight: 93.3 Kg
Water Removed: 3.30 Kg
Start BP: 182/114 End BP: 134/84

28 Jul 15
Starting Weight: 97.8 Kg
Ending Weight: 94.1 Kg
Water Removed: 3.70 Kg
Start BP: 200/130 End BP: 129/89

Apart from a few days, my weights and BP readings have stayed somewhat consistent. That one day when my diastolic end reading was 48, there was obviously an incorrect reading on the automatic BP. As I explained above, I wouldn’t have been able to walk out of there if the diastolic really was at 48.

Now, on to my July 2015 Lab results:

*Albumin (21 Jul): 4.40 g/dL (-0.10 g/dL from 16 Jun)
(A measure of Protein in the blood) NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (21 Jul): 10.80 G/dL (-0.10 G/dL from 07 Jun)
(A Measure of Anemia)

*Ca Corrected (07 Jul): 10.2 mg/dL (+0.70mg/dL from 02 Jun)
(A measure of Heart and Bone health) NR 8.40 to 10.20 mg/dL

*Phosphorous (07 Jul): 3.40 mg/dL (-1.50 mg/dL from 02 Jun)
(High Phosphorous affects the health of your Heart and Bones) NR 3.0 to 5.5 mg/dL

*PTH Intact (21 Jul): 190.5 pg/mL (-120.5 pg/mL from 19 May)
(A measure of Vitamin D absorption and bone and tissue health) NR 150 to 600 pg/mL

*K+ (21 Jul): 5.6 mEq/L (+0.30 MEq/L from 30 Jun)
(Proper potassium levels keep your nerves and muscles working well) NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (14 Jul): 1.75 (+0.10 from 02 Jun)
(A measure of the effectiveness of dialysis and blood filtering.) NR 1.20 or Higher

So, a few of the dreaded RED marks on my most recent labs. The Hemoglobin and the Ca Corrected are out of my control. As we have witnessed previously, these will swing around a bit. The Potassium (K+) is entirely another matter. Though just barely out of range, I have been downing a few tomato slices, as well as too much juice. A simple cut-back in both will correct that number.

As I insinuated in my last, brief entry, things have been fairly quiet. Sure, the nausea, headaches and dialysis are still kicking my butt; however, aside from those few things, I am actually getting on pretty well.

(Caution…sensitive subject matter ahead…)

One area of concern has been my BM’s. Without regular intervals of diarrhea, and with the probiotics doing their jobs, my BM’s have begun to exhibit traits far from normal for me. Lately, my BM’s have been dry (inexplicably, considering the absence of kidneys) to the point of being difficult to excrete. I am suspecting that these dry stools are leading to the increase of nausea I’ve been feeling as the compact materials try to move along the digestive tract. This is only a guess on my part, though a fairly educated guess at that. So, for the last two off days, I have taken an oral stool softener to try and clean myself out. I haven’t had any big voiding sessions with my good friend, the Porcelain Goddess; but I have been able to rid myself of a larger than normal amount of stool. Every extra bit I get out can only help.

(We are now clear of the sensitive subject matter…maybe…)

My sleep has been all over the place; though when I do get some good sleep, it is in intervals of seven to nine hours. Around dialysis day, I am averaging about 15 total hours. I’ll take that. Plus, my dreams have been completely in my control. Even when a dream begins to turn into a nightmare I am able to consciously alter the circumstances of the dream to be in my total control. Over the last two weeks I have done this at least several times each long sleep I get.

On that same subject, I am feeling mentally fatigued. Not sleepy, nor typically tired; just fatigued. I have not yet felt this fatigue until just recently. For me, the best way to keep that fatigue from turning to discouragement is to remember that I am getting VERY close to transplant. Soon, this will be behind me, and I can start getting back to life. It’s now going on six years since this journey began…a very long time…and I just need to remain strong for a little longer. Once I have that kidney, the road to improved memory, physical strength and stamina and feeling better ALL the time will all begin to come back to me. Foods will taste better and actually seem appetizing (!!), and my weeks will soon be filled with ‘wants’ instead of ‘have to’s’…or, ‘need to’s.’

Just a bit longer…

Thanks for hanging on with me!

Good Health to All!

ScottW

26 June 2015

See? I CAN do it!

It's only been nine days since my last update, and those nine days have been fairly uneventful; so, this entry will be short.

17 June 2015

I failed...again.  :o(

An entire month has gone by, and I failed to get an entry done sooner.
Let me explain...

A return to feeling lousy on a regular basis puts a huge stopper in plans to be more productive. After all these years, you'd think I'd have learned that one. (Always the optimist!)

Dialysis Weights

23 May 15
Starting Weight:  97.5 Kg
Ending Weight:  94.0 Kg
Water Removed:  3.50 Kg

Start BP: 167/105   End BP: 132/77

26 May 15
Starting Weight: 98.7 Kg 
Ending Weight:  94.7 Kg
Water Removed:  4.00 Kg

Start BP: 200/118   End BP: 136/82

28 May 15
Starting Weight:  97.3 Kg
Ending Weight:  94.0 Kg
Water Removed:  3.30 Kg

Start BP: 192/114   End BP: 143/86

30 May 15
Starting Weight:  96.2 Kg
Ending Weight:  93.7 Kg
Water Removed:  2.50 Kg

Start BP: 183/117   End BP: 125/92

02 Jun 15
Starting Weight:  97.5 Kg
Ending Weight:  93.9 Kg
Water Removed:  3.50 Kg

Start BP: 164/120   End BP: 127/88

04 Jun 15
Starting Weight:  98.2 Kg
Ending Weight:  94.6 Kg
Water Removed:  3.60 Kg

Start BP: 190/120   End BP: 152/89

06 Jun 15
Starting Weight:  98.7 Kg
Ending Weight:  94.9 Kg
Water Removed:  3.80 Kg

Start BP: 167/100   End BP: 121/83

09 Jun 15
Starting Weight:  98.0 Kg
Ending Weight:  94.0 Kg
Water Removed:  4.00 Kg

Start BP: 188/115   End BP: 120/80

11 Jun 15
Starting Weight:  96.5 Kg
Ending Weight:  93.4 Kg
Water Removed:  3.10 Kg

Start BP: 176/112   End BP: 130/88

13 Jun 15
Starting Weight:  97.5 Kg
Ending Weight:  93.9 Kg
Water Removed:  3.60 Kg

Start BP: 196/110   End BP: 136/85

16 Jun 15
Starting Weight:  97.0 Kg
Ending Weight:  94.1 Kg
Water Removed:  2.90 Kg

Start BP: 209/122  End BP: 151/82

Aside from a few swings upward, my weights remain consistent.  The BP readings are normal. Remember, the starting BP is irrelevant. It's the ending BP (140/95 or lower) that is important. Yes, a high BP is never good, but it's the fluid removal that helps most right now, so that's the number I need to have in line; and for the most part, I've succeeded.

June 2015 Lab Work:

 *Albumin (19 May): 4.50 g/dL     (+0.20 g/dL from 17 Mar)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (02 Jun): 10.90 G/dL    (-0.50 G/dL from 19 May)
  (A Measure of Anemia)

*Ca Corrected (02 Jun): 9.50 mg/dL     (-0.30mg/dL from 19 May)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (02 Jun):  4.90 mg/dL    (+2.00 mg/dL from 04 May)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (19 May):  312 pg/mL     (+79 pg/mL from 17 Mar)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (09 Jun):  5.3 mEq/L    (*No Change from 19 May)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (02 Jun):  1.65     (-0.50 from 04 May)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

I had a number of labs redrawn yesterday [for some reason I don't know], so I will probably re-list these numbers in a few days.
 Except for the drop in Hemoglobin (which I have no real control over), my numbers are outstanding once more. And once more, I'll relate that achieving wanted monthly labs is almost entirely in your control! Proper Diet; Proper Fluid Intake; Proper Med Regimen; Following Physician Instructions...it is ALL in your control! It's easy, too! Just do as your Nephrologist tells you! CHOOSE to do what you must every day. IT REALLY IS THAT EASY!

As I referred to at the very start of this entry, I have been feeling lousy...again. As far as I have observed, there isn't really any single thing that has triggered the latest wave of nausea, and generally feeling awful. My appetite has actually improved, I am sleeping better (overall), my dialysis is extremely effective, and I haven't been sick (cold, flu, etc).

In addition, my headaches have been horrible the past month. On a daily basis, my average headache is running at about a solid 8.5. On dialysis days, that ramps up to a 10+, depending on the fluid that is removed. Yes, I'm using my NTI devices, but when those don't help, the headaches go on unabated. When that happens, I am glad I now have meds to help it calm down, or at least mask it so I can relax enough for it to settle down.

So, between the nausea, the headaches and generally feeling lousy, it's been a long, challenging month. (No fun...)

I have my follow-up Dental appointment this afternoon. If anything significant comes up, I'll be sure to fill you in.

That's all I've got for now. I'm saving a couple of things for when I input the latest labs that were drawn again yesterday. So for now...

...Good Health to All!

ScottW

**19 June 15**

*I got the updated labs, and they aren't much different than what I listed above. So, I won't be changing anything because the few differences that exist really aren't worth mentioning. 
*Also, my appointment to update my Dental Clearance went great! No infections, no cavities. I have sent the clearance in already to my transplant coordinator.

22 May 2015--Post and Great News!

Finally!
I am starting to feel better on a daily basis! That months long endurance run of constant nausea, minimal appetite, lethargy, occasional vomiting and diarrhea looks to be in its waning days. WHEW! (It's about time!...and all because of a probiotic...I'll get to that later, along with great news...)

Dialysis Weights (& Beginning and Ending BP's, too!):

14 Apr 15
Starting Weight: 98.5 Kg 
Ending Weight:  95.0 Kg
Water Removed:  3.50 KG

Start BP:  00/00  End BP:  00/00

16 Apr 15
Starting Weight: 98.4 Kg 
Ending Weight:  94.6 Kg
Water Removed:  3.80 Kg

Start BP:  00/00  End BP:  00/00

18 Apr 15
Starting Weight:  96.9 Kg
Ending Weight:  94.6 Kg
Water Removed:  2.30 Kg

Start BP:  00/00  End BP:  00/00

21 Apr 15
Starting Weight:  99.3 Kg
Ending Weight:  95.8 Kg
Water Removed:  3.50 Kg

Start BP:  00/00  End BP:  00/00

23 Apr 15
Starting Weight:  98.7 Kg
Ending Weight:  94.9 Kg
Water Removed:  3.80 Kg

Start BP:  00/00  End BP:  00/00

25 Apr 15
Starting Weight:  97.7 Kg
Ending Weight:  94.8 Kg
Water Removed:  2.90 Kg

Start BP:  00/00  End BP:  00/00

28 Apr 15
Starting Weight:  99.1 Kg
Ending Weight:  94.4 Kg
Water Removed:  4.30 Kg

Start BP:  00/00  End BP:  00/00

30 Apr 15
Starting Weight:  96.9 Kg
Ending Weight:  94.4 Kg
Water Removed:  2.50 Kg

Start BP:  170/98  End BP:  135/89

02 May 15
Starting Weight:  96.4 Kg
Ending Weight:  94.4 Kg
Water Removed:  2.00 Kg

Start BP:  166/115  End BP:  149/95

04 May 15
Starting Weight:  97.5 Kg
Ending Weight:  94.3 Kg
Water Removed:  3.20 Kg

Start BP:  186/121  End BP:  165/104

07 May 15
Starting Weight:  98.7 Kg
Ending Weight:  94.9 Kg
Water Removed:  3.80 Kg

Start BP:  190/113  End BP:  139/85

09 May 15
Starting Weight:  97.6 Kg
Ending Weight:  94.1 Kg
Water Removed:  3.50 Kg

Start BP:  186/118  End BP:  136/89

12 May 15
Starting Weight:  98.2 Kg
Ending Weight:  94.3 Kg
Water Removed:  3.90 Kg

Start BP:  184/119  End BP:  134/82

14 May 15
Starting Weight:  96.7 Kg
Ending Weight:  94.2 Kg
Water Removed:  2.50 Kg

Start BP:  190/117  End BP:  154/85

16 May 15
Starting Weight:  97.4 Kg
Ending Weight:  94.3 Kg
Water Removed:  3.10 Kg

Start BP:  192/115  End BP:  140/72

19 May 15
Starting Weight:  96.3 Kg
Ending Weight:  94.2 Kg
Water Removed:  2.10 Kg

Start BP:  182/108  End BP:  137/72

21 May 15
Starting Weight:  96.4 Kg
Ending Weight:  94.3 Kg
Water Removed:  2.10 Kg

Start BP:  182/110  End BP:  167/87

As you can see with these numbers, my weight is stabilizing...finally. Plus, I am dropping my dry weight once more; targeting 94.20 Kg's. So long as I have water weight to lose, I'll continue going down. And, so long as I have cramping, the downward progress will be slow and deliberate.
I also decided to include my pre and post Blood Pressures (BP's) simply because I want to illustrate how dialysis affects  patient BP's. My nephrologist isn't worried in the least where my pre-BP is; he just wants the post-BP reading to be less than 140/95. Until I have a kidney, my BP's won't be great, but we need to try to keep them down as much as possible. (Remember, the kidneys control BP, and since I have no kidneys, I have little real control over my BP, aside from dialysis and a BP med.)


May 2015 Lab Work:

 *Albumin (19 May): 4.50 g/dL     (+0.20 g/dL from 17 Mar)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (19 May): 11.40 G/dL    (+0.60 G/dL from 21 Apr)
  (A Measure of Anemia)

*Ca Corrected (04 May): 9.80 mg/dL     (+0.30 mg/dL from 07 Apr)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (04 May):  2.90 mg/dL    (-1.30 mg/dL from 07 Apr)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (19 May):  312 pg/mL     (+79 pg/mL from 17 Mar)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (19 May):  5.3 mEq/L    (+0.40 mEq/L from 07 Apr)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (04 May):  1.70     (No Change from 07 Apr)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

GREAT looking numbers!  Though, technically, my Phosphorous is actually too low, I'm sure it will be rebounding in short order. The large drop is likely due to my poor food intake last month. With my appetite slowly building up, there's just no way I can maintain a low phosphorous number...nor should I be as doing so could cause problems with the heart and bones--just as if the number was too high.
My PTH (Parathyroid Hormone) level is at the highest level it has ever been. This is a VERY good thing as this helps assure the health of bone and tissue through the absorption of Vitamin D.
So, outstanding numbers all around. At this stage of things, they are certainly worth celebrating!

The incidences of diarrhea have decrease once more. In the past month, I've had a total of two episodes. That is excellent news for me!

As far as my appetite, I have already alluded to the fact it is slowly improving. What I haven't mentioned is that my food staple right now is...ice cream. It's the only thing that has been sounding good, is fairly nutritious, and puts at least something into my body. My flavor of preference...Tin Roof. With my phosphorous number where it is, I'm in no danger of ramping that up too much. As far as the sugar and calories...again, at least I'm getting something into my body. Plus, the post-D meals continue to be normal; so between the two, my body is getting the proper nutrition.
I don't recommend an ice cream diet to anyone. I am merely relating what has been working for me.

The burning feet syndrome thing is going strong. So long as I don't let it get out of hand [by failing to soak my feet in an ice bath], it is tolerable on a day to day basis, and doesn't interrupt my sleep.

(Back to the whole appetite thing)
In my last entry I noted that I was going to switch back to the original probiotic I had taken previous to my going through that long, nasty period of feeling horrible. Well, after more than one month on the InSync brand of probiotic, I am having extremely positive signs of feeling far better. My nausea is almost gone, my bowels movements are near normal, and my use of anti-emetics has dropped to almost zero. (What a difference!)
As I stated at the beginning of this blog, everything is improving as it relates to my appetite, my strength, lethargy, etc. When I compare the different probiotics, the one I abandoned has only a single strain of probiotics, whereas the InSync has six strains, and for me, is vastly more effective. The only reason I started using another brand was because the InSync is harder to find. Now that I know I can buy it online, that will never be an issue again.

As my body has settled back to a normal rhythm, my sleep has also been getting better, with more quality hours, fewer naps and less overall resulting exhaustion. When I sleep at a stretch, I am getting eight or so hours. On dialysis day, my sleep is averaging about fourteen total hours (before, during and post). Also, in spite of sleeping so much, I am still getting sleepy late night, and am not staying up all night...a strange, but good thing.

Now, on to my GREAT news...

I had a meeting last Friday (15 May) with my Transplant Coordinator so, as I had stated last entry, I could get updated on the UNOS rules and regulations, and feel out the general feeling amongst transplant staff on how things are going now that it's been over six months since the enaction of the new guidelines.
Here is what I was unexpectedly told...

*I have (as of 15 May) 1035 days on the Active Transplant List. (This is now back-dated to my start on dialysis, which was Tuesday 10 July 2012.

*My current EPTS Score is 29 (up from 26--a reflection of my age and time on dialysis). Still an outstandingly low score for someone my age!

*There are two transplant lists that UNOS uses in Utah. One is the University of Utah, the other is Intermountain Medical Center (mine!). As of Friday of the previous week, I was #11 on one list (IMC), and #15 on the other (U of U).
I was told that, assuming the number of transplants per month remains consistent, I could have my transplant likely by the end of the summer...end of the year at the latest!
It's getting so close!!! (This news was quite unexpected, but VERY welcome!)

--additionally--

*I need to get another dental clearance, which I will do in June.

*When I get the call as a Back-up, I am to notify the nurse when my last dialysis session was, state any illness (cold, flu, etc), then await another call either telling me I am still waiting, or, the primary transplant patient was unavailable, not a match, etc, and to come in immediately.

*When I get my call for transplant, again, state last dialysis, any illness, the proceed ASAP to the IMC campus (in Murray, UT), and where to go from there. Once there, I am to immediately inform the staff that I am there for a transplant, and I will get in right away. Blood will be drawn, tests conducted, and then off to transplant.

*I also learned that post-transplant, any time I see a doctor other than my nephrologist, I must state to them that they will make absolutely no medical decisions without first speaking to my nephrologist...day or night. This especially pertains to new meds, as side effects and basic chemistry can counteract the immunosuppressants I will be on for the rest of my life.

So, there you go...my GREAT news I promised. As I was fully expecting to hear my wait time as being another two plus years, the news of my position on the list was quite surprising; but very welcomed. To think that all of this is nearing its end is absolutely wonderful!

What a terrific way to end this entry!

Good Health to All!

ScottW