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
























 

12 April 2015

A day shy of one month since my last entry; read on to see why...

Dialysis Weights:

14 Mar 15
Starting Weight:  97.0 Kg
Ending Weight:  94.7 Kg
Water Removed:  2.30 Kg

17 Mar 15
Starting Weight:  98.6 Kg
Ending Weight:  94.8 Kg
Water Removed:  3.80 Kg

19 Mar 15
Starting Weight:  97.6 Kg
Ending Weight:  94.9 Kg
Water Removed:  2.70 Kg

21 Mar 15
Starting Weight:  97.4 kg
Ending Weight:  94.6 Kg
Water Removed:  2.80 Kg

24 Mar 15
Starting Weight:  98.3 Kg
Ending Weight:  95.1 Kg
Water Removed:  3.20 Kg

26 Mar 15
Starting Weight:  97.8 Kg
Ending Weight:  94.9 Kg
Water Removed:  2.90 Kg

28 Mar 15
Starting Weight:  97.7 Kg
Ending Weight:  94.7 Kg
Water Removed:  3.00 Kg

31 Mar 15
Starting Weight:  99.4 Kg
Ending Weight:  95.6 Kg
Water Removed:  3.80 Kg

02 Apr 15
Starting Weight:  98.0 Kg
Ending Weight:  94.9 Kg
Water Removed:  3.10 Kg

04 Apr 15
Starting Weight:  97.2 Kg
Ending Weight:  94.6 Kg
Water Removed:  2.60 Kg


 07 Apr 15
Starting Weight:  98.1 Kg
Ending Weight:  94.8 Kg
Water Removed:  3.30 Kg

09 Apr 15
Starting Weight:  97.9 Kg
Ending Weight:  94.7 Kg
Water Removed:  3.20 Kg

11 Apr 15
Starting Weight:  96.8 Kg
Ending Weight:  94.6 Kg
Water Removed:  2.20 Kg




April Lab Work:

*Albumin (17 Mar): 4.30 g/dL     (+0.30 g/dL from 17 Feb March)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (07 Apr): 10.80 G/dL    (+0.90 G/dL from 03 Mar)
  (A Measure of Anemia)

*Ca Corrected (07 Apr): 9.50 mg/dL     (-0.30 mg/dL from 03 Mar)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (07 Apr:  4.30 mg/dL    (+0.20 mg/dL from 03 Mar)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (17 Mar):  243 pg/mL     (-9 pg/mL from 17 Feb)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (07 Apr):  4.9 mEq/L    (-0.50 mEq/L from 10 Mar)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (07 Apr):  1.70     (+0.02 from 03 Mar)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

These latest labs are AWESOME!!     Hard work; sacrifice; determination...that's all it takes to achieve these lab results. It's never easy to get these results; but you'll be happy you did what was asked of you.


 Now, as to why I took a month to get another blog written...

That is quite simple to explain. The last three weeks I have felt downright lousy! Not nauseated, just lousy. Yes, nausea has been a consistent companion; but I'm just referring to feeling sick...all of the time. Feeling so sick leads to not eating right, not doing household chores, not having any energy to get out and do anything, etc. Even my wife has commented on how blah I've been the last few weeks. As far as I know, this increase of feeling so bad is NOT the result of anything I've been doing. My diet hasn't changed, my day to day hasn't changed, there have been no changes at dialysis, my meds are almost all the same...aside from my probiotic--it's a different brand than what I had been taking.

IF the probiotic is the culprit behind how I've been feeling, then the simple answer is to go back to the original brand I had been using; which I will do this coming week. If I end up feeling better after beginning the new med, then I know that was the issue. If not, then I will just figure that my body is going through...something, and will hope I begin to feel better shortly. Either way, I'll let you know.

Still no word from Transplant. I did have a routine follow-up visit with my Nephrologist this last week, and he was not surprised to learn that I hadn't heard from Transplant. He told me they have not only been very busy lately, but that with the new UNOS rules in place, the Transplant office in general has been scrambling to readjust their personnel, procedures, etc.  There was one comment he made that has me wondering about how soon I'll get the Call; which was that he asked me what I'll be doing after I get my Transplant--something he has NEVER asked me about at anytime during the last five years. He said, "You're going to want to know what you're doing once you heal up, because you are going to WANT to get back to life again."  Hmmm...

I may be reading into his question too much, but I may also be on the mark in wondering if the question is related to his knowing something I do not. Time will tell.

My appetite fatigue has grown worse than ever. This is likely attributed to how I've been feeling over the past month; but whatever the case, I am eating less (not good!), eating less often (not good at all!), and taking in less protein (a very bad thing!). It's not that I want to; I just can't bring myself to eating much of anything if I find it the least bit unappealing. I've even looked into a full fridge and freezer, and a full cupboard, and will just turn away and close the door behind me. About the only meal I've been eating consistently is my post-dialysis lunch. That one is always eating completely; though, my ability to decide on where I eat is becoming difficult, as well.
I don't that there is really any way to get b past this, except to just push through as best I can. If that means I eat simply for the sake of eating, then that is exactly what I do. Once I start feeling better I am hopeful my appetite will also improve.

The incidences of diarrhea have remained few and far between. I went through a bad episode yesterday morning before my Saturday dialysis. When I went in for my Tx, the nurses all took one look at me and told me how awful I looked. I ended up sleeping three hours at dialysis, and another seven at home.

Speaking of sleep, it has been all over the place. I'll go anywhere from four hours to nine or ten at a shot. This past week, I have averaged about eleven hours sleep per day, including naps. On dialysis day, I've totaled around 15 total hours before, during and after. That's a LOT of sleep!
I'll just continue what I'm doing. Assuming my sleep is tied in with my feeling lousy, this might also correct itself once I feel better.  One bad thing about sleeping long stretches is that my nausea will tick up while I sleep, ending with my awaking to extreme nausea, and taking Zofran, which of course, takes twenty plus minutes to kick in. TUMS help...a little; but I really just have to get through until the med starts eliminating the nausea.

My feet have been burning terribly the past three weeks, or so. I haven't been soaking them as much as I probably should have--which certainly doesn't help matters--but I just haven't had the energy. However, as I type, my feet are in a cold ice bath, cooling off and allowing the nerves to settle down. Extremely cold, but well worth it.

That's about all I can think of for today. Honestly, I will try to get my next entry done sooner. If how I've been feeling goes away, then I'll have the energy (and the inclination) to do so. Until then...my continued thanks for any prayers, thoughts or other efforts of support which you do for me. I continue to be blessed day after day with strength, mental fortitude and spiritual certainty which all combine to make this terrible trial a thing I am able to endure. Thank You all!

Good Health to each and every one of you!

ScottW

13 March 2015

I was looking at my blog today and saw that I haven't done a post in twenty days (!!). I can't believe that three weeks have flown by since that last post. So, I'd best be starting...

Dialysis Weights:

24 Feb 15
Starting Weight:  98.3 Kg
Ending Weight:  95.5 Kg
Water Removed:  2.80 Kg

26 Feb 15
Starting Weight:  97.5 Kg
Ending Weight:  95.3 Kg
Water Removed:  2.20 Kg

28 Feb 15
Starting Weight:  98.0 Kg
Ending Weight:  94.8 Kg
Water Removed:  3.20 Kg

03 Mar 15
Starting Weight:  99.6 Kg
Ending Weight:  96.0 Kg
Water Removed:  3.60 Kg

05 Mar 15
Starting Weight:  98.7 Kg
Ending Weight:  95.5 Kg
Water Removed:  3.20 Kg

07 Mar 15
Starting Weight:  97.6 Kg
Ending Weight:  95.4 Kg
Water Removed:  2.20 Kg

10 Mar 15
Starting Weight:  98.7 Kg
Ending Weight:  95.0 Kg
Water Removed:  3.70 Kg

12 Mar 15
Starting Weight:  96.9 Kg
Ending Weight:  95.0 Kg
Water Removed:  1.90 Kg

As you can see in the numbers above, my weight has been mostly consistent. I've had a few spikes that I cannot explain, but simply go about getting the weight down in a sensible manner (over two Tx's), rather than doing it all at once and causing myself massive cramping.
And on the subject of cramping, I am only just now getting from Tx to Tx without cramping in either foot, leg or hands. It has taken awhile to say that for my current dry weight (95.5 Kg), but I will finally deliberately try to get below 95.0 Kg, my new official dry weight.
By continuing to drop my dry weight, my Nephrologist is hoping I will stop having respiratory distress, and my BP will drop to normal levels.  I don't know how much further I can drop in the water weight, but I will keep trying to find that bottom level. Doing so only benefits my health and physical comfort between treatments (Tx's).

March Lab Work:

*Albumin (17 Feb): 4.30 g/dL     (+0.20 g/dL from 20 Jan)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (03 Mar): 9.90 G/dL    (-1.00 G/dL from 17 Feb)
  (A Measure of Anemia)

*Ca Corrected (03 Mar): 9.80 mg/dL     (+0.10 mg/dL from 03 Feb)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (03 Mar:  4.10 mg/dL    (+0.30 mg/dL from 03 Feb)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (17 Feb):  252 pg/mL     (+21 pg/mL from 20 Jan)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (10 Mar):  5.4 mEq/L    (-0.10 mEq/L from 17 Feb)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (03 Mar):  1.68     (+0.05 from 03 Feb)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  
 The Hemoglobin drop doesn't really necessitate red numbers, but I put it like that because the dialysis nurses are actually treating this drop by giving me IV Vitamin C. I can't really explain the action V-C has on the body, but I do know that it aids the absorption of Iron into the blood which helps facilitate creation of Red Blood Cells. Since the kidney's usually regulate RBC development--and I have no kidney's at all right now--this is just a wee bit important. So, I will likely continue to get Vitamin C injections for some time.

My K+ (Potassium) actually had taken a spike from the lab draw on 03 Mar to 6.0 (up from 5.5 mEq/L). The lab was redrawn this past Tuesday (10 Mar) and dropped to the level indicated above. Between the two draws, I did nothing diet-wise that I hadn't done over the past month, and the number went down anyway. Just one of those random spikes that will occur in the K+.

How I am feeling continues to be all over the map.  A good day lately constitutes minimal (or no) headache, no nausea, and some energy to get things done. A bad day usually involves an intense headache, lots of nausea, and feeling completely drained.
I'm hoping for sort of a middle of the road from day to day; a manageable headache, tolerable nausea, and a little energy.
The past few weeks I've had days that went from good to bad to middle of the road, or any combination of those three.
Assisting in these odd days is my ever-changing appetite. The fatigue continues, and it is getting tiring! I've made meals that looked and sounded good only to end up taking a few bites and then pushing my plate away. Or, I can't find anything to eat that even sounds good, so I don't eat at all.
Luckily, I have a few snacks that I can go to, so I am at least getting a little nutrition from day to day.

My sleep has also been all over the place. This past month I haven't had any consistent sleep from night to night. Even my dialysis naps are out of whack. Last night, I got over ten hours of sleep. Wednesday night, I couldn't sleep until after 1 AM, but had dialysis, so getting a lot of sleep was impossible. On average, I get about five hours per night, plus another two or three hours throughout the day in various naps. On dialysis day, my naps go anywhere from three hours to seven or eight. As a result, I am tired or exhausted most of the time, and no matter what I do, I haven't been able to get on any sort of sleep schedule. I'll just keep trying to get better, more consistent sleep.

My using a probiotic every day continues to have positive results. I haven't had any diarrhea in weeks, and when I do, it is usually corrected with a single dose of Immodium. If anything, my BM's are drier than normal, and can cause nausea when going through my GI tract. I can live with that. I've had my fill of diarrhea over the past five years. :o(

On the transplant front, there is nothing new to report. I haven't heard anything. When I get a call to be on backup, I'll know my turn is very close. Until then, I just get to keep waiting...

I must apologize for taking so long to get a new entry done. Time is just flying by, and before I know it, two or three weeks have zoomed by. I will try to be better about that.

That's all I have for today.

Good Health to All!

ScottW