426) Annual Post-transplant Meeting

March 9, 2012
Friday

NAMC:  Before appointment with Dr. Lewis Liz and I met with David the social worker to discuss Medicare, Liz's insurance, and planning for re-applying for Medicare in July.  David looked thru my record and the three year anniversary is today, not tomorrow.  According to David they count the date as when they first cut you open, not when you wake up.  

So, Happy Birthday Mordechai the Miracle Kidney!  Three years old today! David helped us by explaining all the details about Medicare parts A, B, C, and D; Medigap, and everything else we need to know to make an informed plan for July.  And then we headed over to meet with Dr. Lewis. 

Maxine came in to check my vitals and my BP was way high... checked again little later and it was down to 150/80... but still way higher than when I check it at home.  Maybe the coffee I drank while waiting for this appt.  She left and the new coordinator, Patty came in and introduced herself and shared that "RN" stands for "registered nag" and she nagged me about exercise and drinking plenty of water.  She did say, upon looking at the data, that the fact that I turned in 1300 ml of urine from my 24-hour collection last Sunday suggests that I am drinking a good amount of water.  She remarked that I should be drinking 200 liters a day.  She also reported that my Creatinine was 1.3 and that my glucose was 131, which is a bit high but okay since I wasn't fasting before I went in for Labs last Monday.  So, her verdict:
1) drink 200 liters of water a day, and
2) walk at a brisk pace for 20 minutes a day.


Dr. Lewis came in and shared that "you look the best I have ever seen you." to which I said something like; "you always say that"; to which he replied, "no. I mean really.  You look great!  Your creatinine is good, your cholesterol is low, and you really look good."  


He is lowering my Crestor from 1 & 1/2 to 1/2 a day!  Wants to check it in 4 weeks.  Talked to me a little about my BP and asked that I take it daily for awhile... and we made another appointment for 4 months.  Liz and I were delighted about the feedback.  So it goes...

425) Three years When?

March 8, 2012
Thursday

So, last night Lizzie and I are laying in bed and she is wishing Mordechi the Miracle Kidney a happy birthday... and we are puzzling thru what the actual date was.  It was Purim, but that follows the Jewish calendar so that is no help.  She thinks it was on March 6... I say March 8.  What WAS the date?  So, today I am up here on the blog finding out that the date was actually March 10th!

Three years ago this Saturday I had a kidney transplant!  It is long enough ago that we can't remember the DATE!  That's history!

So, how am I doing?  My annual Transplant Center appointment is tomorrow morning.  I did NOT get a call from Bernadette about my lab results from Monday... so, that is a good sign that all is okay.  I get worried, now that I only go in every 6 months... worried that we something will go wrong and we won't know about it for too long.

And, I come off my 36 months post-transplant Medicare... so Uncle Sam thinks I am good to go, I guess.  We meet with David the Social Worker tomorrow to figure that stuff out.  Of course I can sign up for Medicare in July, when I turn 65... so that won't be too many months of higher payments for stuff.

I'll post a post-transplant center visit posting to report on how I am really doing (medically speaking that is).

424) Clinic Appointment

October 20, 2011
Thursday

Transplant Clinic Appointment
Met with Dr. Lewis this afternoon for my now quarterly appointment.  According to the doc, "You look great!".  He went over labs; cyclosporine a little high so he wants me to do a set of three blood works on Halloween morning at 7, 9 and noon.  I usually take my meds at 8.

Other than that he thinks, like he said, that I am doing really good.  Always a good thing to hear.  Next appt is my annual physical in March.

423) Take Action Now!

September 23, 2011
Friday

On Tuesday, September 20, Representatives Michael Burgess (TX) and Ron Kind (WI) introduced the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011 (H.R. 2969). Eighteen other Representatives joined them as original co-sponsors.  H.R. 2969 is the much anticipated House version of S. 1454, which was introduced in the Senate in late July.
 

Letter sent just now to my legislators:

"As your constituent and on behalf of the more than 600,000 Americans living with polycystic kidney disease (PKD), one of the world's most prevalent and life-threatening genetic diseases, I urge you to co-sponsor the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011 (H.R. 2969) recently introduced by Representatives Michael Burgess (TX) and Ron Kind (WI).

I am currently taking immunosuppressive medications, after my successful kidney transplant in March, 2009.  My own coverage will end in March of 2012.  Estimated cost (co-pay) of my meds at current prices is (with my excellent insurance coverage) will be $3132 per year.  Without medical insurance to help defray the costs, current costs of these medications today (9-21-11) is $7868 a year (for MY dosages) or $650 per month.

Many people think that switching from the name meds to generics saves people from paying so much, but according to my transplant doctor and team, generics cannot be trusted to interact the same way over time, nor can their interactions with the other necessary medications be completely assessed until sometimes too late.  These are my personal reasons for asking you to support this important piece of legislation.

H.R. 2969 is important bipartisan and bicameral legislation that will ensure kidney transplant recipients are able to maintain Medicare Part B coverage of immunosuppressive drugs necessary to avoid organ rejection and a return to more costly treatments. Medicare covers the full cost of dialysis for a patient�s lifetime; however, under current Medicare coverage policy, Medicare will only pay for necessary immunosuppressive drugs for 36 months post-transplantation. Once the 36-month period ends, kidney transplant patients are forced to find other ways to pay for expensive immunosuppressive medications.


According to data from the 2010 Annual Data Report of the U.S. Renal Data System, extending Medicare coverage for immunosuppressive drugs ($15,000-$20,000 per year) is far less costly to Medicare than a patient returning to dialysis ($76,000 per year) or receiving another transplant ($100,000-$125,000). As of July 1, 2011, the United Network for Organ Sharing (UNOS) reports that more than 89,000 people are on the kidney transplant wait list. Of this 89,000, approximately 5,000 are PKD patients.


Given the cost data and numbers of those awaiting a transplant, the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act makes for good policy and will provide a long term savings to Medicare. Furthermore, kidney transplant patients will no long have to worry about how to pay for these important medications. Now is the time to change this outdated Medicare policy and provide lifelong access to these vital drugs, and I urge you to co-sponsor H.R. 2969." 

422) Stopping Paroxetine and current notes

July 28, 2011
Thursday
 
Bernadette called last night to adjust my meds down!  Too much myfortic in my system, so we are dropping to two in morning and two at night.  Good news.  She said, "too much myfortic increases chances for infection..."

This morning on Morning Edition, a story on live transplant procedure that decreases rejection:  check it out at Treatment Boosts Survival Rates For Some Kidney Transplant Patients.

Also, I've been writing on a post reporting on my leaving behind my long-term anti-anxiety meds, paroxetine.  Never finished it cause of busyness in other venues... so, here it is from the draft.  Now it has been two weeks or so without any paroxetine!


If I had continued my July 13 report I would have said that the only real difference I have noticed since quitting is having very vivid dreams that seem so real that I am not sure I am dreaming.  In one instance I woke up when Liz nudged me to let the dog out at 4:30 or so... got up and took her (the dog) downstairs, let her out, stepped out onto the back porch and felt the hot muggy Austin air.  I felt the breeze, gazed around at the completely familiar scene before coming back into the house and wandering towards the fridge for a cold glass of water.  Then back to the squeaky door to let Chelsea in and follow her back upstairs.  I got back in bed an fell back asleep.


A few minutes later Liz was shaking me again: my whole last paragraph was a dream!  Most of these vivid dreams are run-of-the-mill daily living dreams rather than my more usual weird dreams.  They are marked by brilliant color, clearly feeling proprioceptive sensations, and sensing that the dreams are lucid dreams. 

In general, my behavior has been okay, according to Lizzie.  If anything, in my attempts to watch my behavior and not "fly off", get irritable, or act crazy, I have been less demonstrative.  I think she called it "in my self", but maybe she should put in a comment on this post to clarify her reactions to my reactions to quitting paroxetine.  


More to come!
 

July 13, 2011

Wednesday

In the News:  I think I have been mentioning over the past six months or so that I have been in the process of lowering my paroxetine dosage with the hopes of quitting completely.  Partly this plan was instituted to decrease my overall meds use and save money, but also:  I have been wanting to stop being on this anti-anxiety medication that Dr. Moritz prescribed for me sometime around 2002 or 03 (based on review of my meds lists), as I was adjusting to freaking out about having PKD and the prognosis of eventual dialysis and transplant.

# What are the withdrawal reactions occurring with paroxetine?

These symptoms may occur upon stopping treatment with paroxetine. Typically they can include dizziness, altered sensation (eg. numbness, “pins and needles”, “electric shock sensations”), sleep problems including intense dreams, , anxiety and headache.

Less common symptoms include agitation, nausea, tremor (shaking of parts of the body, eg. hands), confusion, sweating, diarrhea, palpitations, emotional instability, irritability or problems with vision (eyesight).

In some patients withdrawal symptoms may be severe in nature or prolonged. Usually, however they are mild to moderate and self-limiting and should resolve within 2 weeks of stopping paroxetine. Patients treated with high doses, those treated for longer duration and patients whose treatment is abruptly stopped may be at an increased risk of withdrawal symptoms.

European Agency for the Evaluation of Medicinal Products (2004) Questions and answers on paroxetine.  Retrieved online July 13 from http://www.antidepressantsfacts.com/2004-04-23-EMEA-paxil-seroxat-warning-EU.htm  

421) Bernadette Report

July 12, 2011
Tuesday
 
Bernadette called this morning to report on yesterday's labs... and said, "Your creatinine is down to 1.5 and dropping your cyclosporine dose in the evenings was evidently a good move.  It is at 145 now."  In explanation, she added that high cyclosporine decreases blood flow thru the kidney and can be a cause of raised creatinine.  This is a good report: next labs set for July 20th.

420) Transplant Clinic Scare

July 6, 2011
Wednesday

After the clinic called last week and change my appointment, I arrived at NAMC this morning at 6:50 am. for re-registration (a task required every three months) and then labs, and then my usual clinic visit at 9:10 am. After lab work, I stopped in at the cafeteria for two breakfast tacos and coffee with my 8 am meds; and settled in to reading my new text for the Fall Semester SFBT class.

At the clinic things started being bothersome as Maxine hurriedly cuffed my arm and pumped me up for my BP while asking me questions and rushing through her tasks. My BP: 157 over 70 something... to which I mumbled something like, "probably cause I just sat down and am talking..." Then, after 10 minutes or so (reading time again), Bernadette enters and informs me that my creatinine is up to 1.7, my hemoglobin is down, and my salt is high. Great news!

"One point seven? That's not good. Whats up with that?" She shrugs... and we briefly discuss whether it is really a bad thing or not.

Dr. Lewis comes in and asks me how I'm doing... "okay" I say... "cept for my back pain... and, I know what thats from... hauling rocks the other day..." He has on the table, listens to my chest and back, asks about swelling, has me lay back on the table while he checks my groin and pokes at my new kidney and abdomen in general. Pulls me up to sitting and goes over to look in my record (All this is his usual protocol).

Looking in there at the most recent labs, he seems worried (to me) about it and shares, "After two years it is really too late to be rejection..." and I wonder if he is talking to me or himself. Rejection? Yikes? "So what do you think it's about?" I ask. He runs through a range of things (which I don't exactly rmemeber cause I'm freakin' out), such as "a fluke", "medication issue", or some other unknown problem. He excuses himself to go find the rest of my record and check this out further, commenting... "...they've thinned out your record... excuse me for a few minutes while I go find what I need..." and out he goes.

I sit there in my brain feeling guilty. I must have brought this on myself. I've been too late on my meds too many times... "I'm lazy and no good! (I hear in a parental voice in my head). "Boy, now I've done it... I've ruined my new kidney..." I fret. Then I try to clear my head, take some deep breathes, wiggle my sore shoulders... stand up to get my text book. "I can't focus on THAT right now!" So I sit back down and begin thinking along two channels: don't worry until there is something to worry about & boy, this is a GREAT time to end my anxiety meds!

Dr. Lewis returns and says he thinks he wants me to get two scans so he can look them over, and get scheduled for more labs in a couple weeks and then we'll see whats going on. He asks about my BP and I say it has been running in the mid 120 over 70's usually and he nods at this data. I ask about quitting the Paroxatine and we agree that this is as good a time as ever.

He honestly says he wants more data before making up his mind about the 1.7.

Maxine comes in and asks if I can hang around today and get the ultrasound and the DMSA renal study. "Sure." So, she goes to set them up while Bernadette works up my next appointments and med chart. Maxine returns: the DMSA is scheduled for 1 pm and the ultrasound they'll "squeeze in" before that. First I have to go back to the lab for another blood draw to check my iron.

After the quick lab I trek over to the imaging waiting room and munch on Lorna Doones, drink more coffee, and read another chapter of my text before they are able to "squeeze me in" for my ultrasound. The ultrasound goes easily... Robert the technician is training a young tech on the newer machine than she is used to and she tells me, "I've been doing these for years; he is just showing me how to use this new machine" as if to assure me she knows what she is doing. I'm fine... whatever. They talk about how to do this and that the same and differently while I lay there. She did use warmed lubricant, which I am in favor of. I had to fill my bladder with four large cups of cold water so I was shivering when I got in there. The warm goo and heated blankets helped me settle right in to a comfortable experience.

Then it was back to waiting for my 1 o'clock scan. I walked around in outside in the 99 degree sun for more warmth. The DMSA scan was conducted by Mark (See Post # 337 & 338, March 2009) and we spent some time catching each other up as he set me up for the scan. This scan takes 30 minutes of stillness and I fall into a slumberous meditation / sleep... and before I know it it is over and I am up and ready to head out. Mark asks me what I am driving these days (still the T-100 of course) and he wonders how I would compare F-150's with the Tundra before I leave.

Later: Bernadette calls me at home in the evening to say that Dr. Lewis looked at the scans and they look okay... is concerned that my cyclosporin (Neoral) is higher than it should be so he wants me to take off the little one (25 mg) at night and she'll set up labs for next Monday, five days from now. I ask about my scare and she seems to think things are A-Okay for now. Whew!