28 Nov 2012: Labs and a Quick Update

My labs, I am learning, are not all taken at the same time. So, I will be noting the dates of the lab draws next to the value so that you, the readers, know when each value was last measured.

*Albumin (19 Nov):     4.70 g/dL  (+.30 g/dL from 16 Oct.)

*Hemoglobin (27 Nov):     11.60 g/dL  (-.60 g/dL from 19 Nov.)

*Ca+ Corrected (06 Nov):     9.60 mg/dL  (-.20 mg/dL from 02 Oct.)

*Phosphorous (06 Nov):     4.50 mg/dL   (+.30 mg/dL from 02 Oct.)

*PTH Intact (19 Nov):     95 pg/mL   (-21 pg/mL from 16 Oct.)

*K+ (Potassium) (19 Nov):     4.20 mEq/L   (No Change from 16 Oct.)

*URR (06 Nov):     75% effective   (+ 3% from 02 Oct.)

**CA+ = Calcium/ PTH = Parathyroid Hormone/ URR=Uremic Reduction Ratio
      Good Numbers        Bad Numbers

Next Tuesday, 04 Dec, I will have more labs drawn and will update those numbers as I get them--around the sixth, or so.

Yesterdays dialysis resulted in some nasty cramping in my ankles, feet and toes that really emerged while I was sleeping. Even under my electric blanket the cramping set in hard! I put on Icy-Hot ointment to help settle it down, as well as getting up and walking. Even though standing on my feet was terrible, it helped the cramping ease off as direct muscle pressure relieved the cramping. I ended up putting on my warm booties to keep both feet warm, then made sure I had my feet flat on the floor for hours that night.

Additionally, I am exhausted today. My day off and I feel like I have been drug through the ringer and left to just curl up and wither away. No energy, no stamina at all--which is worse than normal!--and utter physical and mental exhaustion. And in five hours from right now, I get to do it all over again! Yippee!!! I am struggling a bit today because of this exhaustion. I don't feel like I got a break from the dialysis at all. Maybe Friday will be better! One can only hope.

My flanks continue to be terrible. Even sitting in my cushy chair has become painful, and quicker to reach that point. Again, pain meds to regulate a bit of relief...at least for a little while.

My headache after yesterdays Tx was ridiculous. At the end of the Tx I immediately took two T3's (instead of my usual one) and even two meds failed to minimize the headache much at all. Nasty painful!
Today was better, and I was able to avoid taking any meds for most of the day. But between my kidneys and the headache, I finally gave in at 500p in order to get both under control once more.

My appetite is still all over the place. I rarely eat anything for breakfast--nothing new there--and any lunches I eat (aside from Tx day) are minimal. My dinners range between small and filling; but again, no consistency in overall food or liquid intake.

My sleep has been all over the place. I am averaging about six hours at night, taking naps during the day, and feeling thoroughly exhausted all of the time. However, even when I do get eight or nine hours, I still awaken completely exhausted.

That's it for now. I need to get some sleep before dialysis...which is now less than five hours from now!

Good Health to All!

ScottW

P.s  I took a self photo the other day to update a visual record of how this is affecting me physically. Here is the latest:

20 November 2012

Alright, let's start with numbers:

10 Nov 12
-Starting Weight:  106.3 Kg
-Water Removed:  2.10 Kg
-Ending Weight:  104.2 Kg

13 Nov 12
-Starting Weight:  105.3 Kg
-Water Removed:  1.70 Kg
-Ending Weight:  103.6 Kg

15 Nov 12
-Starting Weight:  105.3 Kg
-Water Removed:  1.70 Kg
-Ending Weight:  103.6 Kg

17 Nov 12
-Starting Weight:  105.3 Kg
-Water Removed:  2.10 Kg
-Ending Weight:  103.2 Kg

19 Nov 12**
-Starting Weight:  105.4 Kg
-Water Removed:  2.30 Kg
-Ending Weight:  103.1 Kg

**Because of this weeks' U.S. Thanksgiving Holiday [on Thursday, 22 Nov], the normal rotation for dialysis is being altered as Davita is closed on Thursday for the Holiday. I will go on Wednesday morning, then return for my normally scheduled Tx on Saturday morning, then the following Tuesday as well when the normal schedule continues.

I do not have any current labs. The latest were drawn yesterday, but those numbers are not yet available. I will either list them on my next entry, or I will amend this entry as soon as I have the results.

As always my headache is going, going, going... As of November 12th (I think), the headache is has now been continuous for three full years! Yeah, you read that correctly. Loads of fun, that one!

The bilateral flank pain is continuous, with no let-up from day to day. I am still keeping the pain in check with meds, but that is merely masking the pain and there is no other Tx for it besides pulling the kidneys out.

My sleep is still all over the place again. The amount I sleep at night varies from 3-9 hours, and may or may not include naps; no matter how much or how little sleep I get. I know this is affecting my overall exhaustion level, but I can't think of anything to help me sleep more consistent hours.

I got some very good, and very unexpected news the other day. My Grandmother in-law is turning 100 Y/O in February, and she wants all grandkids and spouses to go on a three day cruise to the Bahamas! I called my Transplant Coordinator this morning to get clearance--or not--and was told that as long as I am not on the Status 1 Recipient List (Active), the cruise will be no problem. This is also assuming I won't have to have my kidney removal before then, either. So, barring anything major, I will be going on my first ever cruise in late February! Should be a last bit of fun before things get serious with the whole transplant thing.
Working out the dialysis schedule should not be an issue either. There are Davita clinics in the Orlando area (where we will be staying pre and post cruise), so treatments will be available for me.

That's all I can remember today.

Good Health to All!

ScottW

My Occasional Reminder

I was reading over the last few entries of my blog and realized that it has been a while since I reminded you, my readers, that this blog represents my individual experience with PCKD.

Another patient of similar age and health might experience a journey completely different and wholly their own. How any patient reacts to this disease; how they might progress; how they might react to meds, Tx's, etc is purely an individual thing.

This blog illustrates my journey alone. If you are fighting this disease, please rely on the training and expertise of your physicians and other health care professionals to assist you down this path. Only they will know best how to treat and manage your condition!

Thank you all for your continued support and readership.

ScottW

15 November 2012

I had a follow-up visit with my Nephrologist yesterday--just a regular two month appointment to be sure he's on the same page as the dialysis center and the Transplant team.

My vitals all look great! My heart and lungs remain healthy, and he is pleased with how I am doing (overall) with the dialysis Tx's. He said, "Now that you're on dialysis, you are a very low maintenance patient." I will take that compliment!  :o)

I was also telling him about how painful both flanks [of my back] have become. He told me "that's because my kidneys are about this size (he holds his hands apart to indicate that they kidneys are about the size of a small football--or rugby ball for you international readers)." "Both of them?" "No, that would be each kidney!"

No wonder my back hurts so badly!  OUCH!!!

If that doesn't clearly illustrate why my kidneys will be removed, then I don't know how to better explain it.

Anyhow, everything is looking good. No changes in my meds in either dosages or individual meds. Unless something happens, he doesn't need to see me for three months, this time.

That's all I wanted to pass on.

Good Health to All!

ScottW

09 November 2012

It has been twenty days since my last regular entry. Time to get caught up.

My Dialysis Weight Numbers:

20 Oct 2012
Starting Weight:  106.0 Kg
Water Removed:  3.10 Kg
Ending Weight:  102.9 Kg

22 Oct 2012
Starting Weight:  105.4 Kg
Water Removed:  2.50 Kg
Ending Weight:  102.9 Kg

25 Oct 2012
Starting Weight:  104.5 Kg
Water Removed:  1.30 Kg
Ending Weight:  103.4 Kg

27 Oct 2012
Starting Weight:  105.2 Kg
Water Removed:  1.80 Kg
Ending Weight:  103.4 Kg

30 Oct 2012
Starting Weight:  105.0 Kg
Water Removed:  1.60 Kg
Ending Weight:  103.4 Kg

01 Nov 2012
Starting Weight:  105.1 Kg
Water Removed:  2.20 Kg
Ending Weight: 102.9 Kg

03 Nov 2012
Starting Weight:  106.3 Kg
Water Removed:  3.10 Kg
Ending Weight:  103.2 Kg

06 Nov 2012
Starting Weight:  105.3 Kg
Water Removed:  2.30 Kg
Ending Weight:  102.9 Kg

08 Nov 2012
Starting Weight:  105.5 Kg
Water Removed:  1.60 Kg
Ending Weight: 103.9 Kg

As you can see, my weight fluctuations have been fairly consistent, as has my base weight. For now, any time I go lower than 103.0 Kg's, I have a lot of cramping, soreness and exhaustion all over my body. Yesterday, in spite of ending at 103.9 Kg, I was horribly sore and crampy all day. I am still feeling it today, as well. I don't know why this has happened. There are no changes in appetite, liquid intake; I'm not feeling sick at all.

My Labs--taken at Davita--have also been consistent. The following are my latest labs, drawn 06 Nov 2012:
    = Good      =Bad

*Albumin 4.4 G/dL  (no movement)

*Hemoglobin 11.8 G/dL  (+.2)

*Calcium Corrected 9.6 mg/dL  (no movement)

*Phosphorous 4.5 mg/dL  (+.3)

*PTH Intact 116 mg/mL  (no movement)

*K+ (Potassium) 4.2 mEq/L  (no movement)

*URR (Uremic Reduction Ratio) 75%  (+3%)

The headache has been going up and down. It remains severe on D-day, but waffles between bad and minor on the off days. In all I am averaging three T3's per day over the past month. Though not great, I will still take that over the six or so a day I was averaging before I started dialysis.

My appetite has been OK. Nothing really to report on that front.

My sleep has been all over the place--nothing new there! Along with increased exhaustion--presumably from my kidneys losing function--I am not sleeping in any regular or predictable patterns again. I am taking more naps again, sleeping short hours, then long, then short, then moderate...you the point. I do know that a part of this is my bilateral flank pain.

The area of my back over both kidneys has been downright painful 24/7. The cysts on my kidneys are really causing problems. Sitting, laying, standing...it doesn't matter. That pain is very prominent no matter what I am doing. Dialysis can be excruciating because I can't get up and move around in order to relieve the pain. I am now always sitting (rather than laying) during the treatment so I reduce the pressure exerted on the kidneys. This makes little difference, however. I won't take meds for it because, well, I am on dialysis; and any meds taken will just get filtered out and have no effect. If the pain worsens to intolerable, I may have the double nephrectomy sooner than planned.

That's all for now. I am tired, sleepy and I just forgot what else I had wanted to update you with. So...

Good Health to All!

ScottW

Waiting List

It's official...

As of this past Tuesday, 06 Nov 2012, I have been placed on the UNOS National Transplant Waiting list, Status 7. Again, this means that my status is 'inactive' because I still need to do the Colonoscopy, the Dental Clearance and have both kidneys removed--a Double Nephrectomy--and the associated healing time.

After that happens, my status will be 'Active' and all the time between now and then will be applied and I will be bumped up the list rather than starting from zero.
So, another GREAT news day, for me.

ScottW

 Here is the letter:

 

UNOS

United Network for Organ Sharing.

With my going on the inactive transplant recipient list this week, I thought it timely to educate myself and my readers about this organization and all of the good they do.

Located at www.unos.org this is a non-profit organization dedicated solely to the patients of organ transplant and their education and well-being.

The resources they offer to transplant patients, living donors and other is extraordinary. There are numerous links to a multitude of information.

*I am also going to put a link to UNOS on the Left side of this blog under the 'Helpful Renal Websites' heading. So please, go take a look at it if you have questions or are simply curious.

Good health to All.

 

News!

I received some great news today!

My Transplant Coordinator, Mayra, called me this afternoon. She had met with the Transplant Medical Director to discuss my case.

Because I won't turn 50 until January, my insurance apparently will not cover the colonoscopy. Because of that, the Medical Director gave the authorization for me to be placed on the "Inactive Transplant List" so that I can begin accruing time on the list while I wait for my birthday. In the mean time, I need to get the Dental Clearance finished.

Once the two requisites are out of the way, I will be placed on the "Active Transplant Recipient" list and my accrued time will put me further up the list.

Then, I need to do the double Nephrectomy so that all healing can occur should a kidney become available--or a living donor is all lined up.

Officially, the listing will happen early next week.

So, GREAT news for me!

It's been a long road thus far, but the light at the end of the tunnel just got a bit brighter!

Great Health to All!

ScottW

Newsletter: Healthcare Reform and Your Transplant

The following newsletter is produced by Astellas Pharmaceuticals for their educational division called The Transplant Experience. Their goal is to educate pre and post transplant patients regarding the vast amount of information involved in organ transplantation.


          Healthcare Reform and Your Transplant

As you plan for your transplant, it's a good idea to also plan how you will cover the costs of your transplant medications (also called immunosuppressants).¹ Taking these medications exactly as your transplant team recommends is critical to protecting your transplanted organ. It is essential that you understand what your insurance covers, so you can be better prepared for the time when you need to access these important medications, for as long as you need them.

What impact will healthcare reform have on my medication coverage?

The goal of healthcare reform, also referred to as the Patient Protection and Affordable Care Act, is to ensure that all Americans have access to quality, affordable healthcare.² Since it was passed in 2010, there have been a number of changes to medication coverage that you may need to be aware of, with more changes occurring each year until 2020.

	Timeline of healthcare reform changes 2010-20202 2010 • New programs - Temporary early retiree reinsurance - $250 rebate for Medicare members who reach the "donut hole" • Insurance reforms - No lifetime limits on essential benefits - Annual limits only allowed on certain benefits - Coverage for dependents up to age 26 - No pre-existing condition exclusions for enrollees under age 19 - No coverage rescissions or cancellations 2011 • Medicare reforms - 50% discount on branded drugs for members who reach the donut hole 2014 • Medicaid reforms - Medicaid expanded in some states to cover low-income individuals under age 65 up to 133% of the federal poverty level—about $29,000 for a family of four • Insurance reforms - Coverage waiting periods will be limited to 90 days - No pre-existing condition exclusions for members of any age 2020 • Medicare reforms - Donut hole completely phased out

Medicaid: expanded eligibility In some states, Medicaid may be expanded to include people with incomes up to 133% of the federal poverty level. This means that people who may not have been eligible for Medicaid in the past may now be eligible. Note that Medicaid coverage is state specific and you will need to check your state Medicaid eligibility requirements. That said, look for potential changes to your state's Medicaid coverage to take place by 2014.3 To find out more about Medicaid and eligibility requirements, visit www.cms.gov. Medicare: closing of the "donut hole" By the year 2020, Medicare Part D beneficiaries will no longer have to worry about the donut hole, as it will no longer exist.4 That may feel like a long time to wait, but know that valuable steps have already been taken to reduce the burden of this coverage gap1,2: • In 2010, members received a one-time, tax-free rebate if they reached the donut hole • As of 2011, members in the donut hole received a 50% discount on the cost of branded prescription medications Medicare: efforts to extend coverage of immunosuppressants As it currently stands, Medicare offers lifetime coverage for immunosuppressants, but only under specific circumstances, such as having your transplant at a Medicare-approved hospital, and being age 65 years or older and/or being disabled.5 However, for reasons that cannot be easily explained, Medicare coverage based solely on end-stage renal disease ends 36 months after transplantation. The healthcare reform bill initially contained language that would do away with this limitation, but the language was taken out before it passed into law. The National Kidney Foundation, the American Society of Transplant Surgeons and key members of Congress remain committed to having this limitation removed for the sole purpose of ensuring that kidney transplant recipients continue to receive coverage for the medications critical to their health.4,6 The Affordable Care Act and private insurance If you have private insurance, here are a few ways you, too, may be affected by the healthcare reform2,7: • Removal of lifetime and annual benefit limits • Insurance companies can no longer drop or cancel your coverage (policy rescission) because you get sick • Coverage for dependents up to age 26 on their parents’ policies • Temporary reinsurance for early retirees (between the ages of 55 and 64) Every plan is different, so be sure to ask your insurance provider about how these changes might affect your individual plan.

Removal of pre-existing conditions8 Effective 2014, the Act will eliminate pre-existing conditions as a reason for denying coverage to, or setting high premiums on, individuals 19 years and older. Until then, the Pre-existing Condition Insurance Plan can provide affordable, non–income-based coverage if you’ve been uninsured for at least six months or denied insurance due to a pre-existing condition. For more information, visit www.pciplan.com.

If you are struggling to pay for your medications, there are resources beyond government programs or private insurance that may be available to you. These include programs offered by pharmaceutical companies. For financial assistance on Astellas medications, such as Prograf® (tacrolimus) capsules, you can enroll in the Prograf: Value Card* program or visit www.astellasaccess.com to explore your medication coverage options.   Get answers from those who know If you have any questions about medication coverage and how it will be affected by healthcare reform, set aside time to speak with your transplant coordinator and/or your insurance provider. Visit the Support section of www.TransplantExperience.com for information on Understanding Your Coverage as well as Questions to Ask your financial coordinator pre-transplant. Not registered with Transplant Experience? Join today at www.transplant experience.com As I always point out, the information I have received from The Transplant Experience has been completely invaluable! Remember, as a patient, the more you know, the less fear and uncertainty you will have; and your ability to cope with everything will be far greater. So read, study, learn, ask questions...really understand the process. This approach has helped me far more than I can adequately convey! ScottW