31 July 2016

Tired, tired, tired.

That pretty much sums up the past week.

My Tuesday pre and post dialysis sleep totaled twenty hours (!). On Thursday, it came up to seventeen. Yesterday (Saturday), another sixteen total hours of sleep. And between any times that I am asleep, I am feeling exhausted, sleepy, etc.

I know that a low Albumin count can contribute to excessive tiredness, but my Albumin is, although on the low end of the scale, is just fine. This may have more to do with my poor appetite lately than anything else.

The good news in this is that I am beginning to eat a bit more. While I am still only getting one good meal a day, I have actually been finishing my post-D lunches both Thursday and Saturday, and I am snacking more, as well. Hopefully, this will turn into a growing trend, because I definitely need to be eating more.

On an aside, I have been copying all of my blog posts and have been reading everything I've been going through the past nearly seven years--I can't believe it's been that long! Anyhow, after reading one particular years' worth of posts, I thought I'd mention/update a few things I haven't talked about in some time.

1) Yes, I am still using a cane anytime I am outside of the house. I continue to have issues with vertigo (minor), and still lose my balance at random times. Plus, whenever I grow tired, the cane keeps me on my feet. It has been an invaluable tool for me. When I'm again strong enough, not using the cane will be weird.

2) My eyes continue to fluctuate between good and poor vision. When it is poor, reading is difficult due to blurriness. At those times, my glasses really come in handy. Thank goodness I have those to help. I mentioned a few posts ago that I need to see the Ophthalmologist, which will be coming up.

3) Since abandoning the Minoxidil, it took about two plus years for the whole out of control hair growth to calm down. Not needing the extra hair really set my body on its ear! At least now I don't have hair growing all over the tops of my feet...or at random places in my ears...or on the knuckles of my hands...etc. And there are no more two or three inch hairs growing on my legs, or arms. (Thank Goodness!)  :o)

4) One of the stranger side effects from previous meds I am no longer having was random areas on my head that would see the skin dry out and flake off with just a slight rub, along with seeming uncontrolled dandruff. This would happen on my chin, my jaw line, my ears and sometimes behind the ears. The change away from this side effect is quite welcomed, and never missed.

.......

I had something happen at my dialysis clinic last week that made me remember just how important it is for any patient to be aware of, and take care of themselves and their healthcare. Ever since I had my kidneys removed nearly three years ago I have been using the anti-emetic Zofran on a regular basis. No other ant-emetic that I've tried does what Zofran does. Anyhow, at dialysis I usually get a dose when I start and stop treatment. All the usual nurses at the clinic know this by now.

About a week ago, a substitute nurse--who is terrible to begin with--was working the clinic. At the end of my session I asked for Zofran, and she came in and promptly stated, "I have your Benadryl." My immediate reply was, "That had better NOT be Benadryl! Because if it is, I'll sleep for hours, and my wife will be pretty mad!"  She replied, "No, I'm pretty sure it is." "Are you sure?" to which she replied, "Yeah, I think so."

My final reply was, "Alright...we'll see."

Luckily, it was Zofran.

I knowingly allowed her to proceed for two reasons...1) Aside from a very long sleep, the side effects would be minimal. 2) Part of me wanted to watch this terrible nurse screw up so that she would no longer work at the clinic if she was wrong.

My point is this...

That nurse should have checked the med to verify exactly what it was. She was completely irresponsible for not going back to the nurses station and checking for herself.

Your healthcare is entirely in YOUR hands! Educate yourself about every facet of everything you are going through...Meds, Treatments, Procedures, etc.

   -Ask questions about anything you don't fully understand.

   -Get online and research things you've discussed with your physicians.

   -Know the side effects of any meds you are prescribed.

   -If you are uncomfortable with anything, take control and ask questions, understand     procedures, ask surgeons to clarify anything you don't comprehend prior to surgeries.

   -Educate, Educate, Educate!

Only YOU can know what is best for you! If you have any concerns, fully discuss them with your doctors. Nervousness is one thing going into any procedure or treatment...Fear is quite another. Ask as many questions as you want.

The more you know, the easier everything becomes when dealing with long-term health issues.  (THAT is absolute truth!)

Anyhow, that's all I have for today. May each of you have a successful, wonderful week ahead! Continue to do and be your very best every single day!

Good Health to All!

ScottW

25 July 2016

Just a quick note today...

Due to the rather poor labs that were drawn earlier this month, the [dialysis]  clinic Dietitian had all my labs redrawn to verify the numbers. While I won't do the comparative illustration again, I will give the labs and a +/- number.

*Albumin 4.00 (-0.20)

*Hemoglobin 10.50 (-0.70)

*Calcium Corrected 10.3 (No Change)

*Phosphorous 4.00 (-1.80)

*PTH Intact 263 (+44)

*Potassium 5.30 (-0.50)

*spKdt/V 1.67 (No Change)

The only lab value that is now +/- accepted range continues to be the Calcium Corrected. However, that value is over the top end of the range by just 0.10, which is minimal. The dietitian has ordered a lessened Vitamin D injection during my dialysis Tx's. This should help lower that lab value.

Overall, I've been getting a break from my headaches since my last post. I've had a few days that found minimal or no headaches at all for most of the day. Even this past Tuesday--usually my worst headache day, due to the large post-weekend draw at dialysis--the worst of my headache was immediately following dialysis. After waking from my post-D sleep, the headache was greatly reduced...something I will never complain about!

My sleeping hours average and my daily food intake are unchanged from two weeks ago.  Going along with both, my energy level continues to be lower, as well.

I've been having an uptick in nausea again. However, with as poor as my appetite has been, this really comes as no surprise. The best I can do at this point is to try and manage the nausea through snacking/eating and using Zofran, Tums, etc as needed.

Those are the highlights of this update. Again, just a quick note today as I am not feeling well, at all. Noting specific; it's just one of those day that I just feel sick.

Until next time...

Good Health to All!

ScottW

11 July 2016

A new--and unexpected--development with my Artificial Graft. I'll get to that in a bit...

Dialysis Weights:

23 Jun 16

Starting Weight:  103.4 kg

Ending Weight:  99.9 Kg

Water Removed:  3.50 Kg

Start BP:  196/121   End BP:  138/83

25 Jun 16

Starting Weight:  102.8 Kg

Ending Weight:  99.3 Kg

Water Removed:  3.50 Kg

Start BP:  187/117   End BP:  122/84

28 Jun 16

Starting Weight:  104.2 Kg

Ending Weight:  100.3 Kg

Water Removed:  3.90 Kg

Start BP:  173/102   End BP:  136/89

30 Jun 16

Starting Weight:  103.0 Kg

Ending Weight:  99.6 Kg

Water Removed:  3.40 Kg

Start BP:  167/105   End BP:  102/70

02 Jul 16

Starting Weight:  102.2 Kg

Ending Weight:  99.2 Kg

Water Removed:  3.00 Kg

Start BP:  160/109   End BP:  123/86

05 Jul 16

Starting Weight:  103.5 Kg

Ending Weight:  100.1 Kg

Water Removed:  3.40 Kg

Start BP:  195/109   End BP:  143/82

07 Jul 16

Starting Weight:  102.0 Kg

Ending Weight:  99.2 Kg

Water Removed:  2.80 Kg

Start BP:  179/107   End BP:  122/75

09 Jul 16

Starting Weight:  101.8 Kg

Ending Weight:  99.7 Kg

Water Removed:  2.10 Kg

Start BP:  164/106   End BP:  110/84

For the most part, my BP's have looked pretty good. That spike of the elevated starting BP's was a mystery. I wasn't doing anything to precipitate the increase--i.e. extra fluid gain--so I have no idea why that jump happened. As it is unusual, I will note any further high starting BP's and discuss it with my Nephrologist.

I crashed once at the very end of treatment on Tuesday, 05 July. My weight loss was normal, as was my Tx. Why I crashed is a total mystery. I stood up to get my final post-D BP reading and began to almost instantly feel dizzy, nauseated, have cold, clammy skin and feel as if I would pass out--all classic S/S's of a crash.

I immediately laid down, called for a nurse and was infused with half a liter of NS (Normal Saline). This eradicated all the symptomology of the crash and within ten minutes I was up and moving around again. As it ended up, I was the 0.50 Kg over my goal (of 99.5 Kg), the same amount I was infused with following my little crash event.

The only factor different that might have contributed to the crash was the fact that I started using my new Artificial Graft that day. However, the treatment was normal and quiet; so just why I crashed is again, unknown.

July 2016 Labs: 

*Albumin (21 Jun): 4.20 g/dL     (+0.40 from 17 May)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (05 Jul): 11.2 G/dL    (+1.20 from 21 Jun)
  (A Measure of Anemia)

*Ca Corrected (05 Jul): 10.3 mg/dL     (+0.40mg/dL from 07 Jun)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (05 Jul):  5.80 mg/dL    (+1.40 mg/dL from 07 Jun)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (21 Jun):  219 pg/mL     (-03pg/mL 17 May)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (05 Jul):  5.8 mEq/L    (+0.10 mEq/L from 21 Jun)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (05 Jul):  1.67     (-0.12 from 07 Jun)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

As seen in the numbers above, my labs are not especially good this month. Since I am very good at doing what I should with my renal diet, I do not know why my labs look this bad. As always, I am especially careful with my potassium intake, and with taking my Renvela--the Phosphorous binder. As I've discussed many times previously, the K+ (potassium) will jump around no matter what I do; and, I am always cognizant of my phosphorous intake. Why that one is off is a unknown. The real mystery though is the Calcium Corrected. I have zero clue as to why that is elevated. Hopefully, July will see a reduction in my labs where needed.

Now, the news about my Artificial Graft. I already told you I have begun using the graft this past week (on 05 July). On Saturday, sometime during my dialysis session, I began to have leakage into my arm. I do not know if this was from the needle insertion or maybe a slight infiltration from when the graft was canulated at the start of treatment. However, I DO know that the leakage came from the venous return end of the graft. As a result, I have bruising in my arm that looks like I had a needle infiltration of my old fistula.

Here's a picture taken just now:

     (ScottW's arm contusions following graft leakage on 09 July 2016.) Taken 11 Jul 16.

The contusions (bruising) goes from the base of my thumb to about four inches above my elbow, covering about 2/3's of the arm in that area. Most of it isn't too bad as far as pain. The worst of it is that the arm is purple. Ah well, it's happened before, and will likely happen again.
Luckily, the chest catheter is still emplaced, so I will be using that once again until the arm heals enough.
You may be asking why I didn't know the leakage was happening. That is very simple to answer... I simply had no idea. There was no bump like with a fistula infiltration, no obvious signs at first, and not even any real signs until very late in treatment because I had fallen asleep about two and a half hours into the session, and when I awoke, I noticed my arm felt tight, was moderately painful to move, and only a little bruising was evident. As soon as I saw the bruising I informed my tech. Unfortunately, I awoke just minutes before the end of my dialysis. If I had awoken sooner, the impact of the leakage may have been less, but probably not by much.

Let's see, what else...

My appetite hasn't improved much since my last entry. I am barely eating one decent meal per day, and generally snacking only the rest of the day. Everything is just looking unappetizing. I don't know why; it just is. Even my post-D lunches are not being finished; which is a rarity.

Naturally following a poor appetite, my energy is also decreased--No mystery on this one! However, I will generally push through the lack of energy if I need to. And going hand in hand with these is an increase in sleep. The last couple of weeks I haven't been napping much, but my sleep has been increasing. Last Tuesday, my pre and post-D sleep totaled twenty hours...no kidding. I can't complain about the sleeping. After all, it was because of lots of sleeping that I received my disability judgment in the first place. I just look at it as earning my paycheck!  :o)

The headaches continue. LOTS of TMD involvement, too. How do I know? Because my R jaw is clunking... a lot. This is a major indicator of TMD induced headaches; and has been for going on 31 years.

I think that's about everything for today. If not, I will always add anything on the end of this entry.

...yep...that's it...for now. :o)

Good Health to All!

ScottW

New Astellas Website

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

Their address:
     www.astellascares.com

Thanks!

Post Transplant Tests

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

Post Transplant Tests

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

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

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

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

22 June 2016

I can't believe that nearly a month has passed since my last entry! Where, oh where does the time go?

To start off, last Friday my wife and I took an afternoon drive on the Alpine Loop. The loop itself isn't long, but the fact that I'm getting outside and deep into nature is what's important. It was unbelievably refreshing being amongst the mountains, trees, grand vistas, swiftly flowing water, a gentle summer breeze and the relaxing, beautiful sounds of birds, leaves rustling, insects buzzing and wonderful, absolute quiet. Next to the sound of rushing water, the complete absence of sound was so refreshing!

Plus, I took the opportunity to take some photos with my SLR, which I haven't done in months. Being creative with my camera is always something I enjoy.

Here are two photos from our day in the mountains; taken with a Nikon Coolpix digital camera:

And one more that my wife took of me taking photographs with my film SLR:

So, back to the reason for today's entry...

Let's begin with updating you about the progress my R arm is making. I met with my Vascular Surgeon in late May. My arm was mapped using ultrasound, and the flow looked awesome, while the graft was integrating nicely with my arm. I learned that the flow is +1700 (my old artificial graft flowed at +1400), which is exceptional. Aside from continued edema and bruising, I could begin using the graft at any time.

As of today I am still not using the new graft. Instead, I am simply allowing my arm to continue healing. This latest surgery really hit my R arm hard. At seven weeks post-surgery it (the arm) is still bruised and significantly swollen. I am not doing anything untoward in using the arm; it is just beaten up and needs to recover. I'll re-evaluate in one more week and may begin using the graft at that time.

Dialysis Weights:

26 May 16

Starting Weight:  101.7 Kg

Ending Weight:  99.7 Kg

Water Removed:  2.00 Kg

Start BP:  147/105     End BP:  135/98

28 May 16

Starting Weight:  102.6 Kg

Ending Weight:  100.0 Kg

Water Removed:  2.60 Kg

Start BP:  171/105     End BP:  108/88

31 May 16

Starting Weight:  103.1 Kg

Ending Weight:  99.8 Kg

Water Removed:  3.30 Kg

Start BP:  183/105     End BP:  107/78

02 Jun 16

Starting Weight:  101.8 Kg

Ending Weight:  99.8 Kg

Water Removed:  2.00 Kg

Start BP:  136/96     End BP:  107/86

04 Jun 16

Starting Weight:  102.2 Kg

Ending Weight:  99.6 Kg

Water Removed:  2.60 Kg

Start BP:  159/91     End BP:  108/79

07 Jun 16

Starting Weight:  103.0 Kg

Ending Weight:  99.6 Kg

Water Removed:  3.40 Kg

Start BP:  186/115     End BP:  109/71

09 Jun 16

Starting Weight:  102.9 Kg

Ending Weight:  100.2 Kg

Water Removed:  2.70 Kg

Start BP:  169/90     End BP:  126/99

11 Jun 16

Starting Weight:  102.8 Kg

Ending Weight:  99.7 Kg

Water Removed:  3.10 Kg

Start BP:  176/115     End BP:  126/88

14 Jun 16

Starting Weight:  103.0 Kg

Ending Weight:  100.1 Kg

Water Removed:  2.90 Kg

Start BP:  197/105     End BP:  152/93

16 Jun 16

Starting Weight:  102.2 Kg

Ending Weight:  99.9 Kg

Water Removed:  2.30 Kg

Start BP:  179/107     End BP:  128/80

18 Jun 16

Starting Weight:  102.6 Kg

Ending Weight:  99.7 Kg

Water Removed:  2.90 Kg

Start BP:  181/108     End BP:  120/91

21 Jun 16

Starting Weight:  104.0 Kg

Ending Weight:  100.7 Kg

Water Removed:  3.30 Kg

Start BP:  195/111     End BP:  140/103

As you can see, I am having a difficult time reaching my dry weight. On Tuesdays--the first Tx after my weekend--this is on purpose as I am not taking more than 4.00 Kg total (water plus rinse back fluid) in an effort to avoid any crashes on my part during dialysis which cause the BP to bottom out and the artificial graft to close off.

**It is now 26 June, and I am just now sitting down to finish this entry**

My latest round of monthly labs look great.
Here they are...

June 2016 Labs

*Albumin (21 Jun): 4.20 g/dL     (+0.40 from 17 May)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (21 Jun): 10.0 G/dL    (+0.10 from 17 May)
  (A Measure of Anemia)

*Ca Corrected (07 Jun): 9.90 mg/dL     (+0.10mg/dL from 03 May)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (07 Jun):  4.40 mg/dL    (+0.10 mg/dL from 07 May)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (21 Jun):  219 pg/mL     (-03pg/mL 17 May)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (21 Jun):  5.7 mEq/L    (+0.30 mEq/L from 17 May)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (07 Jun):  1.79     (+0.31 from 03 May)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

Aside from the normal (and frequent) Potassium rises into the bad territory, my labs are looking great! This in spite of the healing from my last surgeries. I will definitely take these numbers! These latest labs also come after a period in my healing when I was eating extremely poorly. If I can maintain good labs despite everything that has happened, then doing so when I am having "normal" months should be a piece of cake.  :o)

My headaches have been on again, off again...like normal. However, over the last three months--and again, in spite of the surgeries--I am seeing a noticeably longer time frame between refills of the pain meds that I use specifically for the headaches. My normal four week refill is lasting between 5 - 5 1/2 weeks. This is a significant extension which tells me that I am getting better control of the headaches. If I can continue doing this, I have hope that my headaches will be under complete control once again. It is only a matter of time before that happens. I do not expect this to come to fruition until sometime after I have my transplant...whenever that will be.

My appetite seems to be improving. I still only eat one good meal per day; but my other two are more frequent, though not very large. At least I'm eating more...and starting to snack again, which is great news! I had stopped snacking almost entirely for well over a month. I just didn't want to eat. So the fact I'm snacking again is really good news!

As far as energy level goes, it is still a challenge from day to day. I'd like to say it's getting better, but I just don't know if that would be accurate. I still tire easily, run out of energy entirely without a lot of effort, and don't get much done on a day to day basis. However...

I am driving the car a bit more, starting to cook more, and do other small things that says, "I'm finally recovering from the surgeries." But, I must also balance that with my day to day. And lately, I've been sleep far more than usual (between 11-15 hours each day), but napping far less (1-2 per day, and only for about an hour total). Some dialysis day sleep totals are nearing 18 hours. It's frustrating to me, but I also know that my body continues to heal from the surgeries, as well as adapt to the new dry weight which is 6.00 Kg's higher than previous to the new graft.

All in all, I have nothing to complain about in regards to my energy level. It is what it is, and it will absolutely improve once I have a kidney. Then, I'll have to be cautious to not over-extend myself...but THAT will be a happy inconvenience to adjust to!  :o)

Dialysis continues to be, well...dialysis. It's never fun sitting in one place for four and a half hours (my time...NOT an average patient time!), but with the right tools, the right attitude and allowing yourself to sleep during part of the treatment (Tx), the time always goes by quickly, and before you know it, I am eating lunch followed by a 5-7 hour post-D "nap." All in all, though certainly not my favorite activity, dialysis really isn't that bad. Well, aside from the body aches, the cramps and feeling like garbage afterwards!  :o/

The more I am on the renal diet, the more I learn about the foods I CAN eat from day to day. As many of you know, the renal diet is full of "Don'ts" as far as too much phosphorous, too much potassium, overly salty, etc. However, it is my experience that you can eat pretty much whatever you'd like, so long as everything you eat is done in moderation and awareness of what and how much you've had of phosphorous and potassium rich foods. and how those foods will impact your labs--and therefore, your health. Remember, ultimately, YOU are in charge of your own health; and knowing where your labs are and approximating how much phosphorous and potassium you can intake is absolutely VITAL to your health. It IS a balancing act that leads you to often have to say, "No" to some delicious foods.  But, when it comes to your personal health, YOU are in charge! And only YOU can determine what you can...or cannot...eat. So make the RIGHT choices when it comes to your renal diet.

That's about all I have for now. I should have another entry soon. I need to re-up my dental clearance, which will be happening in the next couple of weeks. Plus, it is past time for another eye exam, so there should be plenty to talk about in the next month or so. Until I write again...

Good Health to All!

ScottW

Also, it is time for my occasional disclaimer, so here we go...

Please remember that this blog is my singular experience with End Stage PCKD and Renal Transplant. How you do in your treatment is purely up to you and your willingness to follow your doctor's guidance. I strongly encourage you to do everything you can to be as healthy as possible as you go through your journey. If you read something here that you find might be helpful, always pass it by your nephrologist or other doctors before you try anything! Only they can determine if treatments, meds or other things will be beneficial or detrimental to your health. As always, I wish each and every renal patient the very best of luck on your journey! 

25 May 2016

Okay, now that I have the whole multiple surgeries thing all typed up, it's now time to get caught up with everything else.

As described in my last post, the previous month has been anything but normal. Fortunately, you already have the abnormal, so let's get to the routine...

Dialysis Weights:

31 Mar 16

Starting Weight:  101.1 Kg

Ending Weight:  96.5 Kg
Water Removed:  4.60 Kg
Start BP:  130/90     End BP:  118/88

02 Apr 16
Starting Weight:  99.8 Kg
Ending Weight:  96.9 Kg
Water Removed:  2.90 Kg
Start BP:  112/81     End BP:  119/68

05 Apr 16
Starting Weight:  101.3 Kg
Ending Weight:  97.9 Kg
Water Removed:  3.40 Kg
Start BP:  174/108     End BP:  124/87

07 Apr 16
Starting Weight:  100.6 Kg
Ending Weight:  96.7 Kg
Water Removed:  3.90 Kg
Start BP:  156/115     End BP:  100/68

09 Apr 16
Starting Weight:  100.4 Kg
Ending Weight:  96.9 Kg
Water Removed:  3.50 Kg
Start BP:  134/82     End BP:  111/90

12 Apr 16
Starting Weight:  100.3 Kg
Ending Weight:  96.9 Kg
Water Removed:  3.40 Kg
Start BP:  137/89     End BP:  149/122

14 Apr 16
Starting Weight:  100.0 Kg
Ending Weight:  96.7 Kg
Water Removed:  3.30 Kg
Start BP:  130/76     End BP:  109/75

16 Apr 16
Starting Weight:  99.6 Kg
Ending Weight:  96.7 Kg
Water Removed:  2.90 Kg
Start BP:  128/91     End BP:  138/99

19 Apr 16
Starting Weight:  101.4 Kg
Ending Weight:  96.7 Kg
Water Removed:  4.70 Kg
Start BP:  150/91     End BP:  110/80

21 Apr 16
Starting Weight:  99.7 Kg
Ending Weight:  96.5 Kg
Water Removed:  3.20 Kg
Start BP:  139/86     End BP:  115/88

23 Apr 16
Starting Weight:  99.7 Kg
Ending Weight:  96.3 Kg
Water Removed:  3.40 Kg
Start BP:  113/77     End BP:  139/100

26 Apr 16
Starting Weight:  101.5 Kg
Ending Weight:  97.2 Kg
Water Removed:  4.30 Kg
Start BP:  164/104     End BP:  104/64

*28 Apr 16*
Starting Weight:  100.2 Kg
Ending Weight:  98.2 Kg
Water Removed:  2.00 Kg
Start BP:  122/33     End BP:  106/85
*Start of latest surgery phase

30 Apr 16
Starting Weight:  103.1 Kg
Ending Weight:  99.4 Kg
Water Removed:  3.70 Kg
Start BP:  154/96     End BP:  143/64

*I did not record the two extra dialysis sessions this week;
only the normal T/Th/Sa sessions.
03 May 16
Starting Weight:  101.0 Kg
Ending Weight:  98.4 Kg
Water Removed:  2.70 Kg
Start BP:  141/99     End BP:  112/72

05 May 16
Starting Weight:  102.5 Kg
Ending Weight:  99.6 Kg
Water Removed:  2.90 Kg
Start BP:    136/83     End BP:  125/87

07 May 16
Starting Weight:  103.6 Kg
Ending Weight:  100.3 Kg
Water Removed:  3.30 Kg
Start BP:  173/107     End BP:  132/64

10 May 16
Starting Weight:  103.6 Kg
Ending Weight:  99.9 Kg
Water Removed:  3.70 Kg
Start BP:  150/87     End BP:  106/69

12 May 16
Starting Weight:  102.3 Kg
Ending Weight:  99.6 Kg
Water Removed:  2.70 Kg
Start BP:  163/91     End BP:  136/85

14 May 16
Starting Weight:  102.5 Kg
Ending Weight:  99.8 Kg
Water Removed:  2.70 Kg
Start BP:  161/98     End BP:  136/94

17 May 16
Starting Weight:  103.8 Kg
Ending Weight:  100.2 Kg
Water Removed:  3.60 Kg
Start BP:  155/109     End BP:  118/76

19 May 16
Starting Weight:  102.6 Kg
Ending Weight:  99.7 Kg
Water Removed:  2.50 Kg
Start BP:  161/101     End BP:  119/92

21 May 16
Starting Weight:  102.6 Kg
Ending Weight:  99.6 Kg
Water Removed:  3.00 Kg
Start BP:  158/97     End BP:  128/79

24 May 16
Starting Weight:  103.3 Kg
Ending Weight:  99.8 Kg
Water Removed:  3.50 Kg
Start BP:  163/100     End BP:  113/73

The new dry weight of 99.5 Kg is evident. However, the goal of keeping my post-D weight above 110 systoloic is happening every treatment (Tx). I am still waffling about about the dry weight, and may even decrease it by a half kilo just to see what happens. We'll see...


May 2016 Labs:
(Again, due to the April/early May surgeries, I am skipping the April 2016 Labs)

*Albumin (17 May): 3.80 g/dL     (-0.30 from 22 Mar)
  (A measure of Protein in the blood)     NR (Normal Range) 4.0 g/dL or Higher

*Hemoglobin (17 May): 9.9 G/dL    (-1.00 from 22 Mar)
  (A Measure of Anemia)

*Ca Corrected (03 May): 9.90 mg/dL     (+0.10mg/dL from 02 Mar)
  (A measure of Heart and Bone health)     NR 8.40 to 10.20 mg/dL

*Phosphorous (07 May):  4.30 mg/dL    (-0.20 mg/dL from 12 Mar)
  (High Phosphorous affects the health of your Heart and Bones)     NR 3.0 to 5.5 mg/dL

*PTH Intact (17 May):  222 pg/mL     (-171 pg/mL 22 Mar)
  (A measure of Vitamin D absorption and bone and tissue health)     NR 150 to 600 pg/mL

*K+ (17 May):  5.4 mEq/L    (-0.1 mEq/L from 22 Mar)
  (Proper potassium levels keep your nerves and muscles working well)     NR 3.5 to 5.5 mEq/L

*spKdt/V Dialysis (03 May):  1.48     (-0.13 from 08 Mar)
  (A measure of the effectiveness of dialysis and blood filtering.)     NR 1.20 or Higher  

I don't know what else to catch up on because of everything I wrote about the multiple surgeries, extra dialysis sessions, etc. Let's see...

Because of the surgeries my sleep is all out of whack...again. I get anywhere from 2-11 hours at any given time, and will often nap off and on even when I've had lots of sleep over a twenty four hour period. Even my Post-D naps are furtive, at best. As times gets on past they surgeries, I'm confident the sleep will get turned around.

My appetite is also off...badly. However, the surgeries again will wreak havoc on anyone's appetite. This too will get turned around; though it might take a bit longer than normal.

My headaches have stayed consistent over the past two months, as has my use of T3's to combat them. I am so happy that I finally have an effective means to fight these nasty TMD headaches. I spent over 15 years dealing with those migraine-like headaches with no effective means to tamp them down. Talk about miserable...

My energy level has also been greatly reduced because of the surgeries. At three weeks post-surgery, I am finally seeing my energy uptick. In a few more weeks, I expect to be back to normal...well, as normal as my kidney-less, dialysis addled body can be!  :o)

Ever since the surgeries my feet have been ablaze with the neuropathy. I am burning through a twenty pound bag of ice every three days fighting to get the burning under control. Every time I think I've done it, the neuropathy ramps up again and I am thrusting both feet back into an ice water bath. It has gotten better, and I will keep up my efforts to get it under control again.

...Wow! those surgeries really screwed up a lot of things!

I think that's about it for today. If I think of anything else, I'll add it on to the end of this one.

The journey continues... Thanks for staying with me!

Good Health to All!

ScottW