A Good Visit - Kidney Update

Alternate Title: Better than a Punch in the Face!

Last month I was afraid - genuinely afraid - of what I had done to my body over the last year by going off of my kidney medicine. I had not seen a doctor in over a year, and my first trip back made me fearful that a professional would not only give me grief, but would also want to punch me in the face for such stupidity. The thing about a first-appointment, though, is that there is nothing to work with aside from height, weight and, in the case of kidney patients, swelling. I was relieved to not be punched in the face, but still nervous after the appointment at what actual lab results would show.

I will be honest that even a setback in my long term health might have been worth the year of being medication-free. Especially in a year of moving, new jobs, settling, et cetera. Not saying it was smart, but I am glad that I did it.

Today I went back to the nephrologist having done a 24 hour urine and 10 other tests three weeks ago, as well as a spot sample with only four test about a week ago. We were going to have real data to see how things are working in my system. This is what I put on Facebook:

"So, not nearly as nervous as a month ago, but headed back to the doc's office. Today should be about coming up with a plan of attack on my body. Sounds harsh, but that is the reality of living with disease."

This morning I was almost shocked at the conversation with the doctor. I began preparing myself about a week ago for steroids and all that goes with it - superhuman strength ability to sleep, gorging myself on crappy food and blaming the medicine and, of course, Moon Face that accompanies such. I also braced myself for something like the immunosuppresants that I have been taking for so many years that they were as much a part of me as my fingernails. (though they tasted much nastier – gross!)

The shock part of the appointment is that he does not want me to do any of that type of stuff right now – my levels are high but not bad for a kidney disease patient! (He actually said "High for a normal person, but really low for someone with your condition.")

My stats, since some folks care and know what they mean:

Creatinine – 1.2 (almost down to a "regular" person)

Protein – 4 grams (lowest in a long time for me)

Cholesterol – LDL is 127, total is 200 (good, not great)

Blood Pressure – 125/94 (oops – that's high!)

Yes, my blood pressure is high, which is not uncommon with people with kidney disease. Last month the doctor put me on 5 milligrams of Lisinopril, a very low dose. Due to my test results, and the desire to stay off some of the really bad drugs as long as everything else is stable, this is an opportunity to change things up. Looks like changing them up in a BIG way, too. Going from 5 milligrams once daily to 10 milligrams twice a day. Eek! This is an effort to lower blood pressure, so he warned me that I will likely feel dizzy for at least a week and to be careful with that. I think I will start by taking them at work instead of before leaving and driving around town on my way to work, just to start anyway.

My weight is also down a couple of pounds, I think. I will not publish that number here for fear that those close to me will hunt me down, but I really have been making efforts to eat better and get a lot more walking in at work than you would think! (I have done away with our mailroom and walk the mail to our co-workers on a daily basis. Our main level is about 250 cubicles and 50 or so offices, lots of walking to be done!) I think I have convinced myself to run in the local Turkey Trot which is about three miles. It's also only about a month away, so I guess I had best get started on training for that… eek!

Things are going well enough with the doctor that he ordered lab work for one month and I will not go back for a visit until December – just before my birthday actually. THAT could prove to be interesting!

Hot Date Follow-Up

Alternate Title: Filled 'Er Up and Turned 'Er In (Gross, I know. Sorry.)

LAST weekend I had my Hot Date with a plastic bottle. I managed to make the most of my day my doing laundry and making dinner, as well as taking in copious amounts of football. Remember the before picture of my bottle? Here is an after:

KIDDING! You gross weirdo. Why would you want a picture of my pee?

I did my test on Sunday and had to take the Jug-O-Pee into a Lab on Monday morning. I was glad to find a little, quiet, insurance-covered clinic about ten minutes from home and even closer to the office. Since I am in the same hospital-system as the Lab is, it was kind of funny to "talk shop" with someone drawing my blood and looking at my whiz.

It was not until I was walking in the door to drop off my Jug that I remember just how many check boxes had been checked on the Lab Slip: 11. Eek - eleven?! Lucky for me I know some of the tricks for having blood drawn - the first that works for me is a clenched fist starting as they call my name and the more important one is to drink lots of water before going in for a blood draw. It helps keep blood flow up and pulls the veins up to the top, making them easier to poke.

I was glad to see that I was only going to have five tubes of blood drawn. I am the type that can not watch my own blood being drawn, but have no problem with seeing it on the counter. Still a little weird, but does not make me faint, so that's a good thing.

The most humorous part of the Lab visit was when I got the look from the technician and a "joke" of sorts: "I need a sample of your urine, which is funny because I have a whole bottle right here!" Yes indeed, even though I had a half gallon of Liquid Gold, or is that Golden Liquid, I needed to give her just a little bit more for one of the tests. Craziness.

Fast forward to Friday and my having just orgotten about the blood and pee fest from five days earlier when the phone rings and it is my Nephrologists office. I ducked the call for reasons that require their own blog post, but when I called back I was not sure what to expect. I spoke with the nurse and she said there is not too much concern on the Doctor's part, he does want to get me onto some meds pretty quickly to see how things go:

50,000 units of Vitamin D weekly for one month (1,000 units daily after that, OTC)
5 mg Lisinopril (for high blood pressure)

I am releived that it was not a "need to see you this week" call and that the drugs prescribed are fairly mundane as far as Kidney Disease goes. We are going to re-test again mid-week next week so that we have results to look at before our appointment on the 17th. At that time I am bracing for a bit more in the medicine department, probably a lecture on my weight and activity and a plan for proceeding. Not in that order.

HOT DATE!

Alternate Title: Someones Gotta Have All the Fun!

On Sunday my wife and daughter are going to join another family on a trip to the local Pirate Festival. Think Renaissance Festival without the frilly clothes swords and hoochie mama's rotten fake English accents boisterous kings and queens, replaced by boisterous pirates and wenches. It's a neat idea, and we have never been, so the girls are looking forward to the trip. Without me.

I will be having a hot date without them, so it's not all a loss for me, right? I've had a kind-of standing date, on and off, for about ten years. Really cute partner, short and chubby. Always too orange, but that changes as the day goes on.

Back when I worked at camp I would just have my date at work - there were only three of us and so there was not really a chance for too much disruption. I would cordon off part of the office - usually down the hallway or, on a nice day, all of one of our retreat cabins just for me. I have never been one for PDA, so I want my own space for this kind of stuff.

Once I moved to a more "proper office" style of office closer to the city I would just take a whole day off of work for my dates. They were infrequent enough that I would use the day to catch up on other things around the house. I had plenty of days at my disposal as far as vacation/sick days, so I never worried about that stuff. Some date-days I would even just work from home at the same time, still not trying to be a distraction to others.

Now that I am a receptionist and with an organization that counts sick, vacation and holidays all in one bank it appears that my dates are going to be pinned to Sunday's for the foreseeable future. Sunday is football day in the fall, and hockey day in the spring, and my companion does not mind sports as much as my wife does. (And does not interrupt me in the midst of a last-minute touchdown drive to ask the score, which is clearly written on the screen, dear wife.) Heck, I could play video games on the TV during halftime and not hear a single peep, my date is quiet about that stuff.

Funny that I've been having this date for a decade now and I'm still not a fan of it. Kind of a ritual that I have dreaded. Have to have it, but do not want to do it. Kind of like cutting my hair, but more messy.

Want to see my partner for the day on Sunday?

That's right: My Empty Bottle!

It will not be empty for long, you can count on that. This bottle is my collector for a 24 hour urine sample.

Yes, every time that I pee, I have to keep hold of it like it's a precious diamonds, which it is not. It's pee. Gross, gross urine. The thing that you have to wash off your hands any time they are near it - yeah, that's the stuff. I can not imagine how much worse it is for my female friends who have to do collections like this, but you can be sure that I do not envy them.

While my girls are out having fun with peg-legs and swashbucklers I will be at home with my TV, a big cup of water and an even bigger bottle of pee.

What are YOU doing this weekend?

Book Review: Heart & Soul

In the past I have avoided looking into the future of my kidney disease, while focusing on the here and now of my disease. That has begun to change in the last year, and if you recall I started the year by reading (and reviewing) a book about chronic illness, from diagnosis to postmortem. 

I received an email late last summer asking if I wanted to read a book. I ignored it, but only because our lives were still getting settled. I got a follow up email, but we were in the midst of moving into our apartment, so I said to send it along, since I knew we would be without internet for a week or two and I would need to break up the monotony of unpacking boxes.

The book offer came to me because of my kidney disease, and one of the chapters in the book is dedicated to DaVita, a major dialysis company that operates in the US. I know a little about them, but only from sitting in their waiting room when one of my nephrologists did office hours in one of their offices.

So, Heart & Soul: Five American Companies that are Making the World a Better Place is a book by Robert Shook. He conducted interviews with executives, peons and customers of five major companies: Mary Kay, Inc., Davita, InRETURN, Starkey Laboratories and World Wide Technology. All five of these companies have goals of doing great things for their customers and for their employees, and even greater things for their communities around them.

Starting off with Mary Kay was a great idea - even for those of us who do not use cosmetics. To read the story of a woman who had nothing, and lost that nothing, and made Mary Kay, Inc. into a multi-national company that does so much for so many women. Mary Kay set out to help other women move up the corporate ladder by structuring her company to not only allow, but to rely on the people in the fields to become the leaders for the next women. Brilliant plan, and she had the follow through to make it happen. Even more awesome is that she instilled her great will power and drive for success into others that after her death the company thrives and flourishes today.

Reading about DaVita was a bit weird for me. I really have avoided the whole concept of dialysis in my life. I don't want to think about it, even though I know that it will probably be a reality for me sometime in the future. I had one negative-nelly nephrologist tell me that I would be on dialysis at 29 and have a transplant by 35. I was too young to hear it when I hear it, so I have kind of blocked it since then. Lucky for me, the chapter about DaVita was not too focused on the process, but really was about the corporate structure and attitudes. Let me just say that if the company runs the way it is presented in this book, I am much more at ease about giving them my "business" later on, when needed.

The chapter I found most interesting was the one about World Wide Technology. They are a minority-owned, St Louis based company. They are a technology-solution company, and I see their sales reps from time to time come through my door. When WWT was founded, and to this day, it was set up with Biblical principles. Do unto others is a founding principle. The front office was (is?) made up of people that are completely customer driven, and they believe that their co-workers are customers to them as well. Some of the stories shared were incredible - the CEO driving a shipment six hours out of the way and helping to unload it himself just to make a promised deadline? That is a company that I can support, and a management style that I can appreciate.

I can tell you that their sales folks work under the same principles. They go above and beyond, and are genuine in their desire to get their customer what they need. I am just a receptionist, but their attitude when they come in is incredible, and contagious.

Heart & Soul is available at bookstores and online retailers. It is an easy read, even for me! I am greatly appreciative to have received a copy, and would definitely have purchased it on my own had I known about the great stories and examples of leadership contained inside. If every company was run like these five are there would be a lot fewer dissatisfied people in the world!

*Blah Blah Blah notice - I received a complimentary copy of the book Heart & Soul by Robert L Shook. No expectations of a review were given, and all thoughts contained are my own. If someone had fed me the words, I am confident it would have been more cohesive!

Complete Randomness

I know that it's been too long since writing on my blog when my friend Bryan has noticed!  He gave me grief about it Tuesday night, and thus I will write something.  I think I filled him in on everything, but not the rest of you!

Abby:
She'll be three on Saturday.  THREE!  I'm already to the "what was there before Abby" point in her life, and I love it!  We have festivities planned to fill every minute of the weekend, or so it seems.  I am still amazed when she learns something new - or remembers something from months ago that we thought was since passed.

Abby is a little clueless on the whole move-thing.  We've talked with her a few times, but how much is a three year old really going to retain on that front?  She knows we are going to live with her cousins for a while, but has not made the leap that we won't be living here.  I'm a little worried about her, but not a whole lot.  She's smart, she will figure it out.

Post tomorrow about her take on the BP Oil Destruction.  (Sorry, it's not a spill, no matter how they say it.)

Anny:
Had her braces off on Monday!  She has not eaten an apple or chewed gum like she wanted to, but she got a congratulatory bottle of sparkling cider and three balloons from the office to celebrate!  She looks completely different, and I will share a story about Abby's take on it...

Monday afternoon I pointed out that mommy had her braces off, and it took a minute for Abby to really look and investigate.  She is very much a thinker.  She looked back to my teeth, to be sure I wasn't pulling a trick on her I guess.  She looked back at Anny and declared "Now Mommy's teeth match mine!"  You're right, sweetie!  She is very into matching things - colors, animals and apparently teeth!

Rob:
Doing alright, thanksforasking.  I had to work a long weekend retreat, but it was good to see some folks and have meals together.  I went out early on Friday afternoon and got in a good hike with my camera, and did the same on Saturday morning.  Here is one of my favorite shots:

On my way home Saturday, Anny called to see if we were going to try to make it out to Bowiefest (no) and what our dinner plan was.  Abby begged for the phone and said "Daddy, you need to come home to me, okay?"  Melted my damned heart.  I don't know if my meds are messing with me, but it hit me that it was the first morning that I had been away from Abby in at least a year, if not longer, and that is the part that really stunk about the retreat.  Good for the community, bad for my paternal-instincts.  I got home and she gave me the biggest hug ever - and she's a good hugger to start with!  Best ever.

I had a nephrologist appointment on Tuesday.  My protein is up, as well as my createnine.  Neither has shot up to levels of concern, but certainly levels of interest.  That being said - we are raising my medication levels and are going to test again in two weeks.  He has suggested that based on this info, I would be better off finding a new nephrologist to visit in late July, rather than waiting for the fall.  Bummer, but okay.

And that is a quick roundup.  I will do a post about the oil spill, and hope to put the finishing touches on a Third Birthday Video for Abby.  Kind of want to do a "dear Abby" letter to her for her big day, too.  Maybe.  Maybe. 

Nephrologist Update

I went last Wednesday morning to see my nephrologist.  I really like my nephrologist in Rockville, MD and if you would like his info, please contact me.

When I walked in I was immediately grateful to see that they did some remodeling and painted with nice autumns and put new carpet in. It's not that the old stuff was bad, but it was nice to see the change.  Sometimes a nice atmosphere puts you into a nice mood, at least for me.

I hopped up on the scale and cringed.  I only go there every six months or so and I use his professional readings to judge how I'm doing.  I have not gained any weight, but have not lost any.  I will freely admit that Easter candy did me in - or I should say realistically, my addiction to candy at Easter has not helped me.  I have been really good about riding my exercise bike in the evenings while watching hockey (playoffs next week!) and have been better about snacking than I have been in the past.  I am disappointed in myself, mostly.  (but while I'm on weight, please hop over to Pretty Babies and check out all of the weight that my friend Amy has lost!)


I was a little concerned about my blood pressure, but only because at our last visit I was taken off of my meds to help regulate it.  Okay, I was taken off of ONE of my meds that helps to regulate it.  My blood pressure was a really great 108/80.  Phew.

Everything is looking good for everything that he tested for except my protein levels - but those seem to be relatively suspect for my spot-urine-samples.  When I just do a quick test the numbers have fluctuated each time over the last four visits - from 900 to 1400 to 1000 to 2200 (parts per million).  This is not seeming to be very useful.  As such he has ordered a 24 hour urine sample, which means a day off of work for me.  I have a general rule that if you have pee in the fridge, it should be your own pee. 

The good news is that he thinks that it should be time for me to start weaning off of the Cyclosporine.  I've been taking it for about seven years now and have not tried to cut back in over four years.  With my labs generally in order it makes sense to see if my kidneys are making any progress.  With an immuno-suppressant being used it's only doing it's job - suppressing while giving my kidneys help with healing.  The thing is that if I stay on them too long, there is (of course) risk of kidney damage.  (Better than anal leakage, I think.) 

The bad news is that if I'm not going to be under his care he is not going to let me do it now.  (Okay, "let me do it" is not correct.  He's suggesting that I find a doctor in Saint Louis first, then begin to wean.)  I agree completely. When I moved from VA to MD I got caught up in Anny's diet and almost killed myself.  I have learned better now, thankyouverymuch.

So, there you have my nephrologist report for April 2010.  I'll be seeing him in June again before we leave, and am soliciting for names of a new nephrologist in Saint Louis, MO.  (Not in the city, necessarily, but any suggestions are welcomed!)

Book Review: Raising an Emotionally Healthy Child...

For those of you who do not know, I have Focal Segmental Glomerulonephritis - or FSGS - which is a kidney disease. I have had the disease for a long time now, about nine years. (Full story begins HERE and meanders throughout my blog.)  It is not something that I talk about often because I have friends that have it much worse off than I do, but it is something that I live with every day and am thoughtful of at every meal (no potassium, thankyouverymuch) and the twice a day that I take medicine.

Whether I like it or not, it is also something that I think about often as I look at Abby.  My form of this disease is in no way hereditary - go back to that first link and you'll see that it came from a specific incident and not from my genes.  That is a blessing in reality.  What I get to thinking about is that my lifespan will likely be shorter than my healthy counterparts.  I am not to the point of needing a transplant, and my current nephrologist has never even mentioned one, which is a good sign.

Abby is two and a half and very unaware of my illness, which is a good thing.  I can fake that I'm feeling well most of the time that I don't, and when I'm really fatigued I can be open enough with Anny and ask her to compensate for me and things go off around the house without a hiccup.  I can acknowledge that this is a reality that will not last forever, and I don't want it to.  We were fully aware of my health concerns before Abby, heck we knew about it before we were married. 

With that knowledge in mind, last year I ordered a book on Amazon called "Raising an Emotionally Healthy Child When a Parent is Sick" by Paula Rauch and Anna Muriel based on a Massachusetts General Hospital program that both are involved in.  There are hundreds of books that have been written about how to be a (healthy) parent to a child with health issues (emotionally, physically, you name it), but very few written about those of us who are unwell with a full-fledged energy machine in the house.

I found this book incredibly knowledgeable and diverse.  It is not written about parents with kidney disease.  It is not written about parents with cancer.  It's not written about parents with multiple sclerosis.  At the same time, it's written about all of us.  There are many things that make my disease different from others, but there are also many things that we all struggle with together, so the book is very universal.

The early chapters are dedicated to stages of childhood development, from infant straight through post-college.  The basic focus of the chapters is effective and appropriate communication with your child - and that openness and honesty trumps hiding things.  This is a personal mantra of mine as well, so maybe that's why the book was perfect for me.

The book is also very frank about every step of the journey of someone with a chronic illness - from nagging pain and official diagnosis all the way through funeral planning.  There are lots of great ideas about things to do to set up traditions with your child no matter their age at the time of diagnosis, and ways to honor those traditions upon your passing.

There is a large chunk dedication to ways to continue to maintain a fairly-normal home life, even if you are stuck in a hospital by using a team of people to communicate about your condition and assist your co-parent with the daily things that have to occur as a parent.  To be honest, I got more out of that section of the book than a lot of the rest.  I know a lot about child development and have been a part of the end-of-life process for several people whom I cared about.  I had never thought about how to assemble a team of able-bodied people to help with the mundane that would be both helpful for me and my family and give people a way to help.  Very interesting stuff.

I think that the bottom line of this book is that it is a book about parenting first - communication, asking for help when you need it, honesty and planning a legacy for your child and family when you die.  The book is thorough about a lot of different aspects of parenting and illness, while being concise enough to be a fairly quick read, even for a non-book-reader like me.  I would highly recommend this book to someone who has a chronic disease and people who rely on them for daily care.

Kidney Update

Yesterday was my six-month appointment with my nephrologist.  (If you're local and looking for a good nephrologist, let me know.  I really like mine, and have a good recommendation for one in Northern VA, too.  Leave a comment with your email address.)

So - the bad news is that I have gained a few more pounds, instead of losing them.  That made me more upset than it did him, but that's because I've been doing a lot better at not snacking over the last month or so.  Oh well.

My kidney-specific numbers are doing really well.  My Protein is less than 1 gram, which is a far cry from when I first started this journey.  My createnine was a little high, at 1.47, but seemed manageable.  The nephrologist was very pleased with the way things look with all of my labs.

Because no doctors appointment is without some drama, my blood pressure was called into question almost as soon as I got into the office.  When the nurse took it initially it came out as 92/70!  That's great, if I weighed half of my current weight, and did not have kidney disease.  But alas, I'm heavy and diseased, so my bp will never actually be that low.  The doctor came in and took it again, this time taking a really hard listen and being super specific about how he was doing it.  And he did it again after that.  I told him that I had run out of one of my meds about two weeks ago (read: three), but that was even stranger - it's the blood pressure medicine that I take! 

They decided that the cuff they were using is faulty, and I'm glad that they figured that out.  The nurse came back in a few minutes later (giving my arm time to get back into "ready" - with a smaller cuff.  The reading after that came out much more realistically - 112/80.  That's pretty incredible considering both weight and diseasedness!  We talked about it and decided to go the next six months (at least) without the medicine and see how things come out the next time, while at the same time monitoring at home to be sure that there is no big jump.

So, stats are good - took a medicine out of rotation - left!  Woo Hoo!

On the Flu front - my brother got the Swine Flu, but we managed to duck it, at least so far.  My doc does not seem too concerned, even though I take immuno-suppressants, so I'm going to calm down about it, too.  Because of stupid insurance stuff I could not even get my regular flu vaccination during a scheduled visit.  Well, I could, but they would only pay for one or the other.  Who says we don't need reform?

Kidney Check Up!

On Tuesday, about 15 hours after I landed at BWI from our trip to Casper, Wyoming, which I really want/need to blog about but have yet to find the time to.  Maybe this weekend.

After being weighed, I had to immediately blame my Mother-In-Law's cooking and baking habit for the three added pounds since my last visit in the fall.  The doctor was very understanding, and did not question it.  I may have left out that I did more exercise over those few days than I am used to doing over the course of three weeks, but that's for me to know, not him.

While I'm on the weight - I think there needs to be a change in the way that ALL doctors offices that I've ever been to do their practice.  Stop weighing me and THEN taking my blood pressure reading.  I'm fatter than I thought, of course my blood is racing. 

He said that my protein is a little high, but I explained the problems I had with getting my meds and he agreed that was probably the cause.  Nothing to be too concerned about.  My creatinine was at 1.3 somethings, and just about right for me.

Great news is that my cholesterol level is 134 and I won't have to fill a prescription for meds to keep that in check! It was a bit high the last time I saw him, but now we seem to be okay. Phew.

That's it - I go back in six months unless something happens, and here's hoping nothing happens to necessitate a visit!

Ready for Spring

Here I sit, just about a week away from another trip to the nephrologist.  It forces me to remember that last spring when I went to see him I had such high expectations about my overall health, not just that of my kidneys.  I was going to play organized ice hockey last year.  Didn't happen.  I was going to exercise more regularly.  Didn't happen and hasn't happened.  I was going to eat better.  That one I have done, but "better" is certainly defined by comparison to my own eating habits in the past, not what "healthy" would look like.

So next week I will sit on the exam table and be embarrassed, hoping that my lab work has been processed and to his office so that it's not a wasted trip like the last two times.

To add insult to injury on this visit - if the lab actually does their job right and he has my results when I see him - is that my mail order pharmacy has totally dropped the ball on my most recent order.  I have been waiting since March 17th for my order.  Unfortunately my drug coverage basically makes it so that I HAVE to use or get reprimanded and threatened with not covering my medicine.  Ugh.

Well, they say that my meds were delivered on March 21st by the Postal Service.  Well, since my meds come in boxes, and there are 15 boxes per order, that makes my delivery box to be about the size of a 12 inch cube.  Yeah, that's not accidentally out of sight.  I have no clue where those meds are, and they were supposed to be rush delivering a reshipment, but that has not arrived and we leave early tomorrow.  Oh well.

At least I still have a supply of the good drugs, but I am a bit concerned that I should probably have one of the other ones.  When I talked with them last week they said they would put a rush on the order, but I checked just now and it's still processing.  Since I leave in the morning for Wyoming, it will be at least another week until I get my drugs back.

Who says our health care system is broken?  I can not imagine how bad it would be if I didn't have insurance.

World Kidney Day is March 12

Got an email from the National Kidney Foundation today that I am posting here for all to see.

Support the World Kidney Day's Message to Congress
Join our Virtual Fly-In to Support Immunosuppressive Drug Coverage

Take Action!

On March 12, over 100 kidney advocates will be meeting with congressional offices on World Kidney Day, asking for support of legislation to extend Medicare coverage for life-saving immunosuppressive drugs for the life of the kidney transplant. If passed, patients could continue to receive these drugs under Medicare Part B. This is a big step forward to preserve the life of kidney transplants.

Organ transplant recipients must take immunosuppressive drugs for the life of the transplant to help prevent the body from rejecting the organ. Currently, Medicare pays for most kidney transplants but covers drugs for only 36 months post-transplant as part of the Medicare ESRD benefit. After that, kidney recipients must pay for immunosuppressive drugs through private insurance, public or pharmaceutical programs or pay out-of-pocket (Medicare covers drugs without a time limit if the patient qualifies because of age or disability status).

Immunosuppressive drugs are expensive, but the alternative is even more costly. Medicare spends $17,000 per patient to maintain a transplant, but if the kidney transplant fails, the person returns to dialysis at a cost of over $71,000 per year to Medicare. And quality of life often suffers too.

Similar legislation will be introduced in the House of Representatives on March 12. Click here for more information about the legislation. Click here to view the NKF's Immunosuppressive Drug Fact Sheet.

Please take a moment to write your Senators today and ask them to co-sponsor S. 565. Share your story, or the story of a loved one, about the experience with immunosuppressive drug coverage.

Links:
Nephcure - More focused on FSGS, my kind of kidney diseas
National Kidney Foundation

I Give Up

I think that I'm officially going to give up pretending that I am a drinker.  I've never really been a huge fan of beer, and I hate wine.   I do enjoy some of the harder stuff, but I think that my body is sending me clear signals that I should stop ignoring.

As is usual for me, it goes back to my kidneys.

A few years back I actually had a fairly significant procedure on a Thursday before St Patrick's Day weekend - and the day itself was on Friday.  That means you can start drinking on Friday and go straight through for a couple of days!  I asked if I could have a drink or two and he said something along the lines of "sure" which I took to mean "let's get drunk!"  I can not speak publicly of that evening, but I will say that Guinness was good that night and I should have kept the sticker.  (That was actually the last St Patrick's Day before Anny and I were attached at the hip, soas to not get Abby asking questions later.)

I can only think of two times that I have ever gone out with the sole intention of coming home drunk, and one of those was iffy on intent. 

Iced drink have caused me pain, literally, since I got sick.  On the first or second sip of a drink I will get pains down the sides of my back, sort of like a brain freeze but going the other way.  This is sometimes true of really cold Slurpees, but always a result if there is alcohol in the frozen drink.  Not a good feeling, but I determined long ago that it was okay to have the pain if I got to enjoy a Dirty Girl Scout!

I ask myself all the time - typically just after a trip to the liquor store instead of before - why I keep trying to pretend that I'm a drinker, but I just can't figure out the answer.  I've never felt like one of those people that has to "fit in" with the crowd.  I'm actually the lame guy who has never done drugs or been much for partying if it meant that I could not drive home.  I do enjoy the sweet stuff, but have only found a couple of beers that I like, so it's not like I enjoy the taste.

So, with that in mind, I am officially giving up drinking.  It won't really make too much of a difference in my day-to-day life, but if I state it publicly then I'm much less likely to go back and try again later. 

Nephrologist Visit

I was dreading last week's visit to the Kidney doctor for weeks.  I knew several things going in:

• I am feeling okay, which tends to not be a good indicator for me
• I'm extremely tired emotionally and physically right now
• I have not lost any weight like I said I would
• It's my fault for the aforementioned lack-o-weightloss
• I did my labs on time, even a little early for nephritic standards

When I got to the office I made the usual chit chat type of conversation.  I had an apointment a few days before Abby was born, so we always have that to chat about.  (Good thing I like to talk about Abby, because people ask me about her more than they ask about ME!)

After being weighed and having my blood pressure taken, the doctor came in.  He was disapointed by one thing - my labs were indeed NOT in my folder.  He asked the nurses, who of course would have filed it if they received it.  They got on the phone with the lab (only withholding the name for this post, I totally play to put them on blast in a post soon) only to find out that they had not processed it to completion, meaning that my information would not be available.  Waste. Of. Time.

He did look back at my history and said that I need to be on a Vitamin D supplement.  It's not surprising, though, since I don't get in the sun much and am supposed to limit my whole milk consumption.  He said that both he and his son take it, too, so it's not really that unusual.  (Wait, did he mean to imply that I'm otherwise unusual!?)  Then I proceeded to get a flu vaccination AND a pneumonia vaccination.  Yick.

My doctor agreed to just call me later after he receive the paperwork. 

So I went on about my day - Starbucks Shaken Black Iced Tea and an Apple Fritter and straight to my desk at work - and waited patiently for his call, again dreading words of disapointment.  One of the other things we were looking for was my cholesterol levels, which were a little high six months ago. 

When he called he didn't have a single bad thing to say.  I believe his words were "everything is status quo, nothing to be concerned about."

So my kidney update is that there is nothing new, but nothing out of the ordinary.  This means that I get to coast for another six months without worry!  I am trying to be better about what I eat (with a little success) and exercising (with NO success) in the time between now and then. 

The Importance of a Single Doctor

No, I most certainly do not mean that your doctor must live in the chastity of singleness or fidelity of marraige to practice medicine.  (Sorry, that's a Presbyterian... joke.)

A new blog-friend that I've recently found is experiencing a very frustrating existence.  He lives in England and was diagnosed with FSGS, the disease I have, but is dealing with three different doctors in a tag-team sort of situation.  From what I understand, he does not know when he walks into the office which of the "Consultants" he will be seeing.  (*I have just realized that this is because he is in England he is part of the National Healthcare system.  This is still important, so I'm still posting it!)

I want you all to know that this is very very bad.  (And I've told him so, and he's working to resolve it.  He was way before I said anything about it!)  If you don't see the same person from visit to visit you will receive different information, treatment, and, to be honest a different experience.  I saw a doctor once that told me I would be on dialysis in five years, have a transplant in ten, and probably another transplant after that.  This was "no matter what treatment we go with."  It was his last day at the practice, and I was thankful for that, because even with that grim prognosis, I believe that it would have been better to have stability in treatment than to bounce around too much.

This is not to say that you should never change doctors.  When I moved an hour away from my doctor, I remained with him for an additional year.  It was worth driving back and forth once every three months rather than making a switch.  At that point he and I had different ideas about how my treatments should continue.  He was very out of touch with new technology and refused to listen to me when I made suggestions.  After giving him my time and my health, I decided that it was best for me to move on.  He retired shortly after that, and I think that's good for the rest of his patients, too. 

When you have a difference of mindset from your doctor, things will not work.  If you are a holistic person and the doctors only answer and option is medicine, you should find someone new.  If you think that only drugs will work and your doctor says that you need to do yoga and see a chiropractor it will not work because you have to buy into their plan, and they need to know that you're going to do that.  Your health is not a commodity - doctors are should not be people-pleasers.  They need to work with patients as the individuals that they are. 

If your doctor is a part of a shared practice, it is okay (in my opinion) on occasion to be checked up by a partner, because doctors usually group themselves together with other doctors that share similar methodologies.  That being said - when I was with the out-of-date Nephrologist, his partner contradicted his request on my chemo treatment.  That created a lot of confusion for me, and made my choice to leave that practice easier.

The bottom line is that your doctor works for you - it's your health.  If you decide that you don't want to take medicines that are bringing you severs side effects, that you're decision.  You need to respect your doctors, but your doctors also need to respect you.  I am not one that believes that respect comes automatically with your position - so I believe that consistency of care is essential.

(Side note - I'm mad that the Firefox dictionary, among others, does not recognize "nephrologist" as a word!)

I Think I'm Pregnant

FOR THE RECORD: This is no announcement about any actual impending birth. (I find that I have to be careful now that Abby has crested the 12 month mark....)

Over the last couple of weeks I have had an intersting feeling. I've been feeling like I'm pregnant! Most things can be "explained away" but when things add up it's a bit weird.

Examples:
I have had a bit of the swollen feet/ankles this week. (thank you kidneys)
I have been craving pickles. A LOT. (I blame the cookout season, but that's lame)
My balance is off. (hence the post about my ankle sprain on last Sunday)
I can not seem to get enough sleep.  (this might be caused by a certain toddler that will remain nameless)
I used to always joke with Anny about the fact that when she was pregnant, the only thing she would go through that I did not was the actual birth part of having a baby.  There are some days that I believe that to be completely true. 

Don't expect to see me on Oprah any time soon, but I thought I would do a kidney update, and this is what my kidneys are feeling like lately.

Annnnnd POP!

On Sunday we went to church, as is the norm, and stayed for the picnic. The picnic was nice. We got to chat it up with a couple that has just added a second child to their clan, and she's quite a cutie. We like them, but never seem to get together outside of church. Must work on that, but that's another post for another day. Today's post is about what happened on our way out.

Pop.

Okay, more like POP!

As I was gathering our scraps to put in the trash can (one napkin and a bunch of fruit that our lovely daughter threw on the dirty ground) I stood up. I thought it was natural - the trash can is over there, I am here, I need to walk over there, I should stand up. Unfortunately, Abby had the same idea, that she should get up quickly.

Since I was planning to walk, and indeed making movements toward that same direction that Abby was lunging, I changed direction quickly and rolled my ankle over a tree root. I heard the aforementioned POP! and got a little woozy. (Anny later said that I lost all of the color in my face.) I laid on the ground a bit to get the sky to stop wobbling so much while at the same time talking with Eric (the dad of the family spoken of earlier) and generally trying to act like nothing happened.

While Anny went inside to get ice, I determined that I was fine. On the way home I was spoken to like a child, which is honestly the best thing in such a situation. I eliminated the ER from contention because it was not swollen, but that was not really making Anny happy. Our final verdict (mine) was to go home and ice my ankle.

And so I did. For five hours.

Having been to emergency rooms in various states around the country, I have learned a few things.
If you want great care, go to a remote place! (Casper, WY)
If you want fast care, don't go on a weekend - unless you're bleeding.
Some hospital systems do things right, some don't. (right is in Metro Pittsburgh, PA)
It's never going to be pleasant, so just grin and bear it.

Needless to say, we waited until Monday.

We headed a bit out of our way early Monday morning, but were in and out of the ER in about an hour and a half. (GO Howard General!) The staff was very friendly, and mostly helpful, or so I thought. I got to explain over and over, though, that I could not take Advil because of my kidneys, but it appears that "nephritis" gets buried in all of the paperwork of a chart. (BAD thing!)

The diagnosis was a "good sprain" of my left ankle. I was given crutches and a good ankle brace, which it turns out the nurse put on backwards and just wrong. Lucky for me, my brother just hurt his ankle last month and was able to get me figured out on Monday evening. I went to work today but made sure my foot was propped up. I was sure to leave a little early to get ice on it and try to beat the traffic a bit.

The hardest thing is that I'm having to play too hesitantly with Abby. Anny has been in charge of baths, which I one of my jobs, and it kills me. I know that in a few more days it will be back to fine and I'll be back to my normal roughhousing with the kid, but she does not get it. Oh well.

Self Sabotage?

We all know that if a drug user knows of an upcoming drug test they will either stop using for just enough time to clear their system or try to mask the drugs. It happens in sports with Steroids and HGH. But my real question is: Have you?

Kind of like brushing your teeth extra hard before a dental visit, I have noticed that I will do certain things prior to doing a sample, even though I know that the test is for MY benefit, not the doctor's.

I know I'm not supposed to have potassium. It's good for most of you reading this blog, but because of my kidneys I am supposed to shy away. Do I still have an occasional french fry*? Absolutely. Potato chip? Sure. Guacamole? Had some last night.

In addition to potassium I was on (and probably will be after the summer) meds to keep my cholesterol in check. It's one of those side-effect-but-not-completely-kidney-related issues. I could keep my cholesterol in check by cutting out foods that are on the high side, but I don't. I am better than I used to be, but no where near what would be best for me. For anyone, really. (On this one, we should all strive to be better about the cholesterol thing)

When I know that I'm going to make a stop by the dreaded Quest Diagnostics, I will intentionally skew my diet to be sure that I don't have something that will rock my system. No steak for me. No sneaking french fries. I have been known to put off a test because I wanted an extra day.

I understand that it is not a true random sample, but I still do it. I think it's exactly like the dentist thing. You don't want to seem like you don't ever floss, so you floss for a week trying to make up for it. It does not work, they always know you don't floss, but at least you've tried.

But I haven't tried. I have tried to stop eating junk. The reality though is that I can't eat junk right now because my desk is empty except for gum and raisins. I would love to tear through a bag of Cheetos, and would only regret is to a small degree later. I've tried to get into shape, but every time I get winded I give up way too easily. Part of it is that I worry about the repercussions later - if I over-do it now, I will not be able to function at my meeting tonight. Deep down I know that if I dropped a few pounds I would have MORE energy for meetings all the time, and for playing with Abby.

So why do I do it? I really don't know. I am mostly blogging about it in an effort to call myself out, but also to see if I'm alone in this.

Do you do this? Do you do other things to prepare for a doctors visit? (Preferably something that will help me out, too!)

*An occasional fry does not mean "order of fries." It's typically two or three stolen from another plate.

It's Me - Alphabetically

I am following up to a post from July of 2006, which I wanted to do annually. Since I blew through many more months than 12, I'm going to post it now. (Yes, something was taking up my time in July of 2007!)

So, the following are things about me, some things you know, some you don't. Here's my list:


A - Anny - my wonderful wife. We celebrated our sixth anniversary in March, and will celebrate her first Mother's Day next month.
B - Blogging - I have two that I keep up, but am working on a more global third. I'll post more about it when it's ready.
C - Child - I had to be sure that Abby made it in the top five, but Anny is in at A. Abby is amazing and I feel like she has completed our little family.
D - Dining - Anny and I have learned the value of eating in shifts, especially when dining out. We're also learning that breakfast out is just as nice as dinner out, and it's usually less crowded!
E - Ecletic - My musical choices have grown a lot since I did this exercise last. I could spend all day goofing off with iMixes. Right now I'm pulling together a great mix for Abby's first birthday. Suggestions?
F - Family - There are lots more in the family than a few years back. In-Laws. Neices. Friends close enough to call family.
G - Garden - For several years now I have grown pumpkins. This year we are going to try for some eating-vegetables! Since my list is limited in what I can eat, it was fairly easy to pick out what to try.
H - Hockey - I'm looking to get back into playing, possibly as soon as this summer. I'm hoping to get into shape by forcing myself to!
I - Immunosuppresants - I take these twice a day to battle my FSGS. Yes, there are other meds, too, but these are the long-term ones that are supposed to be working.
J - Jason - My brother and I are much closer since we've moved up to Maryland. It's actually pretty cool to hang out with my brother. Definitely brings my cool quotient up a notch.
K - Kidneys - for obvious reasons.
L - LPC - The church that we go to. I'm on the Session and have become the webmaster too.
M - Myspace - Finally canceled my account. It was useless. Stupid popular tool that is no good for me.
N - Now - I'm trying harder and harder to live for right now. Yeah it's fun to think back to when Abby did this or that, but she makes every day cool.
O - Orange - Though I'm not supposed to have the fruit, Orange is my favorite color.
P - Parenting Group - Anny and I worked hard this year and it was a hit. We have gotten to know folks a lot better. I've been toying around with designing curriculum to share with others.
Q - Quest - I wish that Quest Diagnostics were more efficient. This is my health we're talking about!
R - Redhead - I'm a natural. Are you?
S - Signing - I'm having a lot of fun learning with Abby, and get really excited when she signs back.
T - TypingTest - I got 74 words per minute with 98% accuracy at typingtest.com!
U - Unwithdrawing - Look it up - it just means liberal. That's me!
V - Verizon - Wireless. Home Phone. Internet. Wow. We have been debating how much we actually need a home phone line, though.
W - Wii - Love it! I wish I played it more often, but don't have as much time as you might think.
X - XXX-XX-XXXX - My social security number. At least as far as you're concerned!
Y - Yawning - I've been less tired since the time change, but I sure could go for one good night of sleep right now!
Z - Zamboni - Z is for Zamboni is a children's book on the alphabet that I love to read to Abby.


If you want to participate, please just copy and paste and change as is appropriate. I'm not a huge "tagger" online.


(Yes, again I'm weak on the "X" line. Would love to know what you would put for X as it relates to your life!)

I Hope They Didn't Drink It!

Background: to find out how much protien my kidneys leak, a good indicator as to the overall health of said kidneys, I have to pee in a cup more often than a pregnant lady. It's not nearly as bad as the 24 hour samples.......

Turns out that the call last week was about two things:

There was no urine sample submitted.
My Nephrologist forgot to mark "cyclosporine" for them to test. It's an important test, and he forgot. I'm not too much in arms about that, really.

But the pee. I did pee. I put it right where I was told to. For crying out loud, I hope that they did not attribute it to someone else's file, which would indicate that they too have kidney issues that they need to check out. I hate the idea of that.

So - I have a new blood draw form, with the "random urine" line checked too. Maybe tomorrow they will understand that "random" refers to the time it is drawn and does not mean "randomly lose Rob's pee."

That's a relief four days in the making. Oh wait, that means that I now have to live with the whole thing over again - he didn't call because there was a problem with the sample. What if there really is and he just hasn't seen it because they lost it? Crap. I was so close to being comfortable about it.

"Give me a Call about your Results"

Last week I went to my nephrologist for a regularly scheduled apointment.

I'm decidedly starting with the good news: During the apointment he told me that my cholesterol has done well while off of the drug he took out of the rotation in the fall. Good news! It was a little high, but I had two options: diet and exercise or go on another, lower dose drug for the cholesterol. I would like to think that I'm going to diet and exercise this summer, so we went with that.

I did my blood-work (and pee-work, too) on Tuesday, called that afternoon and they slotted me in for Wednesday morning. I thought it was too quick of a turn-around, but they know the system better than I do, so I went with it.

When I saw the doctor on Wednesday he told me that I should have scheduled for at least a week out! I told him that his staff scheduled it that quickly, that I was expecting to wait for several weeks. Argh.

Indeed he did not have my full test results. Some of the requests are out of the norm, so it takes a little longer to get the results than just the normal CBC. He assured me that things were probably normal and that he would only give me a follow-up call if something came back out of whack.

Well, last night after dinner Anny noticed the voicemail light blinking. Sure enough, it was my doctor calling. Just left a casual "give me a call" and nothing more. Not good. Keeping my head up, I decided, I can call him Thursday (today) and see what's up. I just tried that. He's not in on Thursdays, and is out tomorrow. Dammit, I now have to wait through the whole weekend to find out what was so wrong that he called?

Something you don't know about me, or maybe you do: I'm an optimist when it comes to other people, but the worst pessimest when it comes to me. I think I've been conditioned for it, though. On several occasions I have been feeling better than ever only to be told by the doctor that the drugs were not working right and we had to try something new. Not fun.

So, there you have it. I have the next four days to try not to freak out too much about the fact that something is wrong enough with my labs to initiate a call from my nephrologist.