Newsletter: Health Coverage

The following is the latest free newsletter fron "The Transplant Experience," the educational division of Astellas Pharmaceuticals, maker of several post transplant meds. The newsletters help educate patients about the many aspects involved with pre and post transplant lives.

"Make the Most of Your Healthcare Coverage"

The medical care before transplantation and necessary for your long-term transplant health is a lifelong expense that you and your transplant team will need to manage. To this end, making sure your medical coverage is right for where you are in your individual transplant journey is very important. Since your needs may change with time, it’s a good idea to revisit your coverage options and to make sure you’re using the financial resources available to you. Here are a few tips to get you started:


Understand both the medical and nonmedical expenses associated with transplantation—from the co-payment for your laboratory tests to the cost of transportation to your transplant center.

 For a full list of transplant costs you should be aware of, visit the
"Financing a Transplant" page on the Transplant Living website.


Learn about insurance basics as well as what differentiates various insurance types (Medicare, HMO, PPO, etc.).


 For a breakdown of the different health insurance plans, visit the Insurance Coverage pages under the Support section of www.TransplantExperience.com.


Contact your insurance provider or meet with your transplant financial coordinator to address any concerns you may have or to help you plan your next steps.


 For a list of key financial questions to ask both pre- and post-transplant, visit the Questions to Ask page under the Support section of www.TransplantExperience.com.

Financial Assistance and Astellas
Some pharmaceutical companies, like Astellas Pharma US, Inc., offer programs to accommodate a wide range of financial situations. Genevieve Mylott, Assistant Director of Reimbursement Strategy for Astellas Reimbursement ServicesSM (ARS), understands there are “many moving parts” to getting the healthcare coverage you need. ARS can help with the process. If your doctor intends for you to receive Prograf® (tacrolimus) capsules, ARS can work with a member of your transplant team to help you:

• Understand the specific benefits of your plan

• Take advantage of out-of-pocket assistance programs for Prograf

• Gain/understand prior authorizations for Prograf

• Appeal denied claims

According to Genevieve, the most important thing you can do is communicate your financial concerns to members of your transplant team, who act as the main conduit between you and an ARS representative. In addition to keeping a record of your insurance information, they can guide you, or apply on your behalf, to financial assistance programs offered by Astellas—such as the Prograf: Value Card or the Astellas Access ProgramSM (AAP).

ARS: Facilitating Access to Your Medications
Financial barriers should not prevent you from receiving the medications intended for you by your doctor. That is why Astellas offers the AAP, which provides a full year’s supply of brand name Prograf to those demonstrating a gross household income below 2.5 times the poverty line.

To learn more about eligibility and application criteria for the AAP, as well as other services ARS has to offer, visit the Patient section of
www.astellasaccess.com.

Not registered with Transplant Experience? Join today at www.TransplantExperience.com.

The information that Astellas Pharmaceutical provides has been entirely invaluable to me. I urge anyone who is going through anything similar to what I am to subscribe to The Transplant Experience. You will be glad that you did!

27 June 2012

Well, I got the ball rolling.

My Transplant Candidate Application Referral was sent to the IHC (Intermountain Health Care) Transplant Office Coordinator over two weeks ago. After not hearing back yet, I talked to my nephrologist's nurse [who had submitted the application] as instructed , and was given the phone number of the IHC Coordinator's office.
I talked with an office person who confirmed that my application was indeed received on the 8th (of June), and was then led to leave a voice message for the Coordinator herself; which I did do.
I have no idea what the next step is, but at least I got the ball rolling on moving towards transplantation. I now await a return call from IHC. I will keep you informed of every step along the way.

(I'm keeping the rest of this entry short; so, here goes...)

Also, the last six days have all been pretty much the same. Lots of edema, feeling really ill, fluctuations in eating, the damned unremittent headache, complete exhaustion, long naps, etc.

One change that I am doing is twice daily weigh-ins. I purchased a good scale that I will use to measure my AM and PM weights to note fluctuations associated with dailty edemic gains and losses. It is a digital scale that weighs to every 2/10's. In the two full days that I have done the weigh-ins, my average daily water *gain is 2.4 pounds, and my water **loss is 2.2 pounds.
(*Gain is my weight at night before going to bed.
 **Loss is my weight in the morning immediately after waking and urination.)

As time goes on I will continue to keep you informed as to my average Gains and Losses.

Also, I informed my doc that I will be scheduling the start of my dialysis after the upcoming Fourth of July Holiday. I will, or course, let you know when that is exactly; and I will be taking you along for the ride with lots of photos, explanations, etc.

And that is all for today. Not a long entry, but quite informative.

Good Health to All!

ScottW

21 June 2012

Yay!...It's only been a brief five days between entries.

Unfortunately, there is little that is positive to tell you about. Read on...you'll see what I mean.

I will once again begin with Exhaustion. The best words I can use to describe it are:
-Pervasive
-All-Encompassing
-Constant
-Overwhelming
Yeah...that pretty much sums it up. I go to sleep exhausted; I awaken exhausted; my naps are now averaging over four hours in length (on top of 8.5 hours sleep per night), plus any little fifteen or twenty minute naps that happen throughout the day. So...Exhausted.

Next, let's talk about Edema. I felt my feet feeling weirder than normal yesterday, and placed my finger on my R ankle to test Rebound, and was greeted with a good half inch of edema before I hit bone...and it was squishy. I hadn't felt that kind of edema in anybody since my paramedic days. I even withdrew my hand and gave an audible, "Eewww!"
For now, most of the edema is in my legs. I do see it in my hands, but not much.

Feeling Ill. I don't know if I am feeling ill more because of how constantly exhausted I am, or because of the renal failure happening...or both. I just know that I have been feeling especially lousy the last four days. I can still push through this most of the time to keep myself busy; but it is getting really difficult to keep moving forward. Every so often I let myself really feel it, and it makes me miserable. So, I push myself mentally to get up and be somewhat productive. I fear that if I give into feeling lousy that I may not be able to pull myself back up to a good place. It's a fight...every day.

Food intake is still all over the place. In the last five days I had one that I ate nothing at all (not even any snacks), and one that I ate more than normal (and paid for it with feeling worse than normal!). Most days I snack in the afternoon, eat a small dinner, and maybe eat a pice of toast at night. That is pretty much it. On average, I am eating about 1.75 cups of food per day. That's up a little bit; but I am also trying to eat a little more every day.

My headache, now 31 months long (and counting), is averaging a nice 9.75 every single day. The only things that could make it worse are greater intensity, and making me sensitive to light a/o sound.  My T3 usage remains at 6 per day. I am hoping that dialysis will at least reduce the headache to a less painful level, if not eliminate it altogether. I have not read anything about dialysis relieving the unremittent headaches...I am just hoping.

The bilateral flank pain continues to be ever-present and always painful. The cysts on my kidneys must be huge and nasty looking!

My breath has become worse. My wife tells me that it has intensified way beyond what it was a month ago. I believe her because I can taste it in every morning especially. It is grossing me out! If it is doing that, I can't imagine how it smells to others.

My urine remains about 10% darker than it has been. Plus, it is still as foamy as ever. I am not seeing many particulates in it lately, though. I don't know why that would happen.

And,...that's all I can think of. I'm tired, sleepy and worn out.

Good Health to All!

ScottW

19 June 2012

A quick piece of news...

I received word this afternoon that my application to convert my medicare coverage to a Medicare Advantage Plan has been approved. This means I can start dialysis [for sure] in July.

I will be contacting my nephrologist to get things rolling with that.

Good Health to All!

ScottW

16 June 2012

It has been eleven days since my last regular entry?!
I don't even know where--or how--to start.

Let's begin by reiterating the news I gave in my photo entry about the edema in my legs. I will not be starting any dialysis until July because in order to help me cover most of the costs of the traeatment and the meds, I had to convert my Medicare coverage to a Medicare Advantage Plan that covers Medicare Parts A (Hospitalization), B (Clinics and Preventative) and D (Prescriptions). The premium is no additional cost than what I am now paying for the basic Medicare. Plus, it caps my per year co-pays instead of constant accumulation as with the regular coverage.
Unfortunately, the conversion cannot begin until 01 July of this year. So, unless my kidneys fail altogether and my body crashes, again, dialysis will not begin until July. IF I go into renal failure then I will do what I have to.

Now, let's get on with the time since my last entry on the fifth...

First and foremost...Exhaustion. I thought I knew exhaustion up to this point. I actually had no idea how much greater that exhaustion would be come. It's as if my body--after this latest drop--is suddenly screaming, "Enough! I am so tired of this! "

Yes, I did struggle mentally for a day or so after the news of the latest drop; but I snapped out of it as I always do. However, my body didn't. I felt weighed down more and more every day. My flank pain has increased on both sides, my headache took a [seemingly] permanent leap up in intensity, my energy each day is gone in a mere fraction of what it had taken previously, I am sleepier around 50% more, my naps have increased in number and duration each day, and most of the time I am now feeling as if I am in a fog both mentally and physically.

I am moving very slowly, thinking slower, laughing less, have more general dizziness, have a seemingly permanent edemic increase in my legs, and have been awaking every morning feeling like I got no sleep at all. I do NOT like feeling like this...at all!

In spite of the exhaustion, I am still getting my housework done (very slowly), I am getting out to help with errands as I feel up to it (sometimes going because I need to get out of the house), and just today I finished with a personal project that I have spent the last sixteen months working on. That last one feels really, really great!

I am sure that a part of my exhaustion is mental; though certainly not on a conscious level. I continue to work every day to keep my mind in a good place. However, I am certain that my body, now under incredible stresses, is affecting my subconscious in ways that I cannot even begin to pretend I understand. In that conscious/subconscious battle, I am sure that my mind and my body are losing ground to the renal failure accelerating inside of me.
But, the fight goes on. Dialysis is coming up, and hopefully, I will start feeling better after a few treatments. We will see soon enough...

A little earlier I stated that my headache has intensified and the bilateral flank pain has increased. Accordingly, my T3 usage has also gone up. I have previously stated that both areas were hurting more and my T3 dosing had gone from about 3.75/day to about 4.9/day. Over the last week, that has inceased again to about 6 T3's per day. Whereas before I was taking the med for either my head or my flanks, I am often dosing now for both at the same time. I will usually take one, then another about an hour later. I rarely take two at the same time; and never take more than the prescribed amount in the stated time frame between doses. I am very careful about that.

I also want to mention that I saw something new when looking in the mirror. The area on my upper nose (the bridge)  next to my eyes looks as if both sides [on either sides] is bruised. That is the only way I can think to describe this darkening of the tissue. I have never before seen this on me, and yes, it is highly unusual [for me].

As for everything else...
-My urine has darkened around 10%, and has become more odoriferous;
-The blurriness in my eyes has increased a bit;
-The muscles of my lower arms have begun aching. Not cramping, or anything like that. Just aching.
-My appetite is up and down, and I can barely taste any of the foods I am eating.
-My dreams are still controllable (thank goodness).
-and the vertigo remains down from what it has been. However, I have noticed some balancing issues both with my cane and without it. Nothing major; just little instances of catching my balance that I had not been doing for some time.

That is all I can think of for now. I hope that I adequately explained about starting dialysis later--
Wait!
I remember something else...

In my entry about the edema I stated that I had decided to start dialysis in-center rather than train immediately for the at home treatments that...
..Nope...Lost my train of thought. I can't think of how to put this rather lengthy explanation succinctly; so, I will save that for another time.

Good Health to All!

ScottW

The Edema Effect

Well, I finally got a few comparison shots of the edema that is occurring in my legs every day. Granted, the edema has worsened over the past couple of weeks, and the "normal" views aren't so normal anymore. However, you will see the difference.

The "Good"

                                                    My Feet This Morning, 13 June 2012

                                                       When they are at reduced edema.

                                           A side view, again, this morning, 13 June 2012



The "Ugly"

                                                 A Top View This Evening, 13 June 2012

                                                               See the difference?

                                                Another Side View from This Evening

                                                                    13 June 2012

                                                 Another Top View from This Evening 

                                                                     13 June 2013

There you have it. Like I stated earlier, my feet are no longer losing most of the fluid accumulation as I sleep anymore. The top two photos show obvious edema.

However, the biggest difference is how my feet look by the evening. The toes are edemic, the feet are grossly distended, and my ankles are unrecognizable.  This same cycle is now happening daily, and will likely continue to get worse until I begin dialysis.

Speaking of dialysis, I stated that I had to work out some financials before I could begin the treatments. Well, I ended up having to convert my Medicare Parts A & B to a Medicare Advantage Plan that also covers Medicare Part D for prescriptions. The monthly cost to me is $0 more than what I am already paying per month for the regular Medicare. Plus, it caps my financial co-pay per year to a relatively small sum.

Unfortunately, my Advantage coverage does not begin until 01 July. That means that I cannot begin covered dialysis until the start of July.

IF my kidneys fail altogether before then, I will do what I must. Otherwise, no dialysis until July.

Also, I have decided to start out with in-center treatments three times per week. I will see how effective the dialysis is, how much energy I have, etc. If I feel that I am not improving much, or any, I will look at doing home-hemo in about a month after the start of dialysis.

I know that I didn't explain that very well, and I do apologize. I will try to better elucidate the reasoning in my next regular blog entry.

Good Health to All!

ScottW

A Reader's Comment

Today I received a personal comment from one of my readers. I will not share the entire note as that would be a violation of privacy.
This reader, Irene, was very recently diagnosed with Type II diabetes following the removal of a gangrenous toe. Irene previously had no knowledge of the diabetes. She strongly felt that she had to share the following with me:

"...Life has many twist and turns whether its good or bad, and we have to learn to accept whatever fate that falls on us. I have learnt a lot through reading your blog and came to understand the strength you have....this also made me stronger to accept what happened to me."

I have stated many times that I am no hero, and often doubt my own strength, and wonder if my blog really makes a difference to anyone.
I really appreciate hearing this from one of my readers. This single comment makes my efforts with this blog entirely worthwhile. To know that I so positively impacted someone touches me deeply. Truly, I am humbled by this comment and wish Irene the very best as she adjusts to a life impacted so strongly and permanently by diabetes.

Good Health to You All!

ScottW

Reminder

It is time to once again remind my readers that this blog relates my singular, unique experience in this struggle with polycystic kidney disease.
The way my body reacts to treatments, medications, disease advancement, etc is strictly my experience. Anyone else could have a completely different outcome or overall experience in regards to this disease.
If you find yourself facing this, or any other disease, please consult your physician and follow his/her medical advice. They are not only treating the disease, but you as well.

Thank you for continuing to follow me on this journey.

Sincerely,

ScottW

05 June 2012

I know that I promised this update yesterday afternoon, so please accept my apologies if you have been trying to read the latest news. You will understand why in a moment.

Out of all of my labs that were done on Friday, there are only two numbers I am going to concentrate on today.

2.7

14.90

In the last two months I have declined a significant 2.70% function, and am now sitting at 14.90% total renal function.

Not only did I drop to dialysis level, I dropped to transplant level, as well...in one fell swoop! Suddenly the game changes.

I will tell you that I was quite taken aback by the sudden development. I was not expecting this today. I was actually expecting a mild drop...if any drop at all. So, I was unprepared when, after greeting me, the doctor asked, "Do you think you are feeling bad enough to start dialysis?" 'What?' (Seriously...I asked that!)

My nephrologist strongly recommended I start dialysis this coming Thursday because of the numbers, and because of how I have been feeling the last month plus. Unfortunately, I cannot start that yet because I need to wrangle some financials that will help me cover the 20% that Medicare does not. Plus, I need to apply for the Medicare Drug plan because the meds associated with dialysis can start at $600+/month. So, a little phone calling and insurance tag to play before I can actually start.

In the mean time, I had more blood drawn today for a HepC (Hepatitis C) Panel that is required before dialysis. Plus, I got a chest xray* done so the docs can look for any chest congestion which might compromise me to start the treatment.

So, that's the BIG news!

I came home today and was asleep within minutes, and stayed that way for over four hours. On waking I felt as if I were in a bit of a fog as my brain has been trying to process this sudden change in everything. I am better now, and at least able to write the news.

Let's go over the remainder of the labs now. I will write comparison numbers from April's labs as well so you can see the changes that have happened in two months. (*Red numbers are abnormal readings. **NR=Normal Range)

Glomelular Filtration Rate (GFR) 14.90%                April 2012: 17.6%

Blood Urea Nitrogen (BUN)          43.0  (NR 5-26)    April 2012: 40

Serum Creatinine                        4.50  (NR 0.5-1.5)  April 2012: 3.90

Glucose                                      103  (NR 65-109)   April 2012: 101

Phosphorous                               4.1  (NR 2.5-4.5)  April 2012: 3.5
  *I will have to start watching phosphorous while on dialysis.

Sodium (NA+) and Potassium (K+) both within NR and nearly identical to April.

White Blood Cells (WBC) 4.20  (NR 4.50-11.0)      April 2012: 5.06

Red Blood Cells (RBC)  4.03  (NR 4.7-6.1)            April 2012: 4.19

Monocytes%, Lymphocytes#, Eosinophils% and Basophils% all abnormal by moderate to severe rates.

Hematacrit (HCT)  33.4  (NR 42-52)                    April 2012: 33.6

Hemoglobin (HGB)  11.6  (NR 14-18)                   April 2012: 11.9

Parathyroid Hormone (PTH)  75.3 pg/ml  (NR 12-88)  April 2012: 90.4

Lipids all look good.

Vitamin D  (Vit D, 25-OH)  38.3  (NR 32-100)

Weight 235    April 2012: 243  (-8 lbs)

That's all of the relevant numbers. When I start dialysis I will have more numbers to watch, more meds to take, and various related things to look for that I currently know absolutely nothing about.

So, it is on to the next phase. I will keep you up to date on everything that happens, all the decisions to be made, all the tests to be run, etc.

Let's continue on this journey together.

Good Health to All!

ScottW

*On the chest xray I learned something unexpected about myself. I had to actually get two xrays done (different views) because my lungs are too wide (side to side) to fit onto a single xray pic. This means I have larger capacity lungs than the normal adult male.
I asked if this might be due to the fact I have exercised nearly my entire life, and was told, "Aside from any genetic propensities, a lifetime of exercising will absolutely cause you to have larger lungs."  I never knew that about myself.  Kinda Cool!  :o) 

Progression Photos #1

I have been taking photos of myself since the PCKD was diagnosed so that I could create a visual record of how this whole thing is affecting me physically. Here are some of those photos in order from earliest to now...

My baseline photo, from Dec. 2007 when I was fit and healthy.

May 14, 2010 About eight months post diagnosis.
By then the S/S's of the disease had begun to hit me hard.

October 2010
Just over one year post-DX (diagnosis).

January 2011

July 2011
I remember (amazingly enough!) not feeling very well that day...hence, the frown.

November 2011
This was a few months after I started cutting my hair really short because
of the minoxidil we were using as a vasodilator. As you can see
from the previous pics, I certainly didn't need additional hair growth!

February 2012

April 2012

May 2012

June 2, 2012

There you are...my first progression of photos from over the course of this path. Notice the differences along the way?
I will of course, continue to take my photos as things continue. I will update that in another year or so, depending on how everything goes, I guess.

Good Health to All!

ScottW

01 June 2012

Just a quick entry today.

I am on my way to do the next round of lab work for my nephrology appointment on Monday, 04 June. Let's hope for some positive movement again--you know, the whole 'Bad news is good news' thing.
The appointment is at 1030a local time, so I will get the results on this blog as soon as I can after that.

Good Health to All!

ScottW

**Update (0100p): LOTS of tests from the blood draw today. They include Renal Panel, Lipids, Cholesterol, CBC, and Parathyroid. It appears that my doc wants to look at whether or not other systems are being affected by the advancement of the disease.