428) Another Hospital Stay

March 21, 2012
Wednesday

Checked in at NAMC at 2:30 pm, after working for a couple hours.  A couple of interesting things during prep... my anesthesiologist found some irregularity in my EKG and showed me my EKG charted, pointing out the abnormality... a slight dip right before one of the spikes... The tech was able to find an EKG from 2009 that looked exactly the same, so the anesthesiologist felt better about approving the surgery.  

She also questioned how long it had been since I'd had my thyroid meds checked, since my thyroid function today is about 7.2 where it is supposed to be 6.  I told her that I am not even completely sure who the doc was who originally put my on synthroid, but that I know that it was checked back when I had hyper-parathyroid problems in September, 2010, and Dr. Moore checked it.  She was surprised that that Dr. Moore told me to take one synthroid a week out of my dosage way back (see Post #402).  She recommends that I go back to taking it everyday and get a thyroid test in the near future to update my synthroid. 

By 5 pm they finally took me down to the operating room for the procedure and all I remember about that was rolling into the operating room and moving over to the table.  Then I was waking up and very hazy as Dr. Lewis explained that my stone was actually a BLADDER stone, not a kidney stone!  He showed blurry me a pic on his I-phone of this black rock that looked to me like a meteorite beside a ruler on a field of blue... 1.1 centimeters (similar to the picture I made here).

This evidently means something but I am just waking up so I only know that there is an important fact or idea out there floating around and there is no way I am going to catch it at the moment.  I return to dozing off and on for some time and at about 8 pm I am awake enough to realize we are not going home tonight.  Liz is staying here overnight; John is staying with Shayna; and I am aware that I am not going to do my training in New Braunfels tomorrow morning.

I am moved from recovery to a room back on 4th floor (again) where Monette is my nurse overnight.  I don't need any pain meds and seemingly am urinating without pain throughout the night.  Early the next morning Dr. Lewis comes in to check on me: irrigates my bladder and the liquid looks clear and not too pink.  He wants an x-ray of the bladder with and without contrast and then one of my peeing the contrast out to ensure that there were no tears or nicks when he dragged the stone out.  He explained that he couldn't break it up so just had to drag it out.  Thru the day I feel okay and am up and around in my room.

At 2:30 pm I am wheelchaired down to radiology where Alan the tech gets me prepared for this procedure, explaining that the prep takes way more time than the actual test.  Alan and I get to talking about various medical topics, including cost of treatments, insurance, social work, dialysis and diet.  He is married to a social worker over at MHMR and they are vegans... etc.  The supervising doc is Dr. Michel, a pretty redhead who expertly guides me thru the test: we shoot in the dye, let my bladder fill up while I watch on a video screen. Then she pulls the plug on my catheter and it drains a bit.  Dr. Michel goes off to check the x-ray shots on her computer and Alan and I watch them line up on the screen like a slide show, get 'em all correctly contrasted for the best silouette views, and numbered and labeled and I watch.  These shots remind me of pics of egg sacs of Black Widow spiders. Then they move the x-ray table up to an almost standing and direct me to pee the rest out into a collection jar.

Well, guess what?  It ain't easy to pee in front of a pretty redhead... even tho she is a doctor.  So she shoots outa there back to her office and Alan and I talk while he fills me up with cups of water (about 6 or 7) and I try to relax enough to do the job!  I'm semi-standing there between a hard steel bed and an x-ray machine leaning on it with my left elbow... like being in a water bar yacking with a guy... and sooner or later I know I'm gonna hafta pee.  Alan is asking me about the people I met in dialysis... how many worked versus those who were completely disabled by their condition...

And suddenly I gotta PEE! Alan rushes off to get the doc and I grab the head of my penis and squeeze hard to keep it from exploding before we can get the pics.  Dr. Michel gets there, maneuvers the x-ray machine around to get the clearest view possible and I let go.

She gets the shot and goes back to check the views on her computer while Alan and I wait... Alan  exclaims, "Wow; that was so cool to see your urethra bulging up like that and then when you let go it just whooshed out!" I had missed that on the screen unfortunately, since I was the actor holding the bulge... but I shared his elation at that observation.  Mostly, I was happy it was over and I had performed the function adequately.  


So, it was back to my room to wait for the results.  Before I left radiology, Dr. Michel shared with me that it all looked good from her perspective.  Later Dr. Lewis came up and had a final report and prescription for me.  All the tests look good to go!  He is prescribing Proscar for me to help with shrinking my enlarged prostrate.  He sees no sign of cancer, thank God.  He referred me to a Dr. Bruce for a cyctometrogram and uroflow study and  set an appointment for his own followup in a couple weeks.  But, he concluded, my prostrate will continue to get bigger  and he will eventually want to go in there again to "shave it" at some point.  Oh boy, I thought.


Paul the day nurse, who looks like an Asian Paul the Beatle (from the "Meet the Beatles" album cover), came in to unhook my"I drip and complete my discharge paper work, and give me a pneumonia shot (which will last 5 years).   "Is this one of those that'll be painful?" I inquired and he smiled and replied, "Oh yeah!  For a couple days..."

Great.  It couldn't be worse than the pain I've had in the last few I thought.


Note: More info at http://kidney.niddk.nih.gov/kudiseases/pubs/prostateenlargement/

427) In which Jack's Pink Urine is Studied

March 20, 2012
Tuesday

Early this morning I called Patti, the new transplant coordinator... since Bernadette has moved up to a higher position.  I left Patti a message to call me and then tried Bernadette's phone.  She answered and I explained to her about my burning urination, going to see Dr. Krienke last Wednesday, getting a culture done, and how my urine started getting pink last night around midnight.  This morning its murky red and still burning to urinate.

She recommends I find out about the culture and then call her back... so, I called Krienke's nurse, who, after some hemming and hawing (Krienke is on vacation), reports the results were negative and she will fax them right over to the transplant clinic.  I call Bernadette back and leave her a message.


Later Bernadette calls me back and tells me to come in to the clinic right now; sign in, get labs done, get an ultrasound, and come over to see Dr. Lewis.


At the Clinic
After these tasks I get to the transplant clinic, where Maxine takes my BP and it is 190/86 and I know that is really not accurate since she is talking to me and asking me questions throughout the measure.  Then Patti the Nurse and new Transplant Supervisor comes in to hear "the story" one more time, check my list of BPs I've been keeping and comment that they look good and "see how it goes down when you are doing yardwork?",... and then, Dr. Lewis gets to hear the story.  He takes my BP and it is really 155/72.  He pokes and prods me and decides I need a CT scan before he make his diagnosis.


Jump to Conclusion
Before going for my CT at 2 pm, Nicole shows Patti how to do an ultrasound of my bladder... and then drink a lot of water and then do another one and they measure the difference... not much difference.  Of course, after I leave for the CT unit, I pee all the way...

I meet Gayle, the CT scan tech and we talk about socialized medicine, waiting times, and how many docs send people for CT's unnecessarily (according to a tech) and then I traipse back to the clinic where I wait for the CT results...


I have a 1.1 centimeter kidney stone that has moved out of my kidney, down to my bladder and it didn't 'kill' me with pain cause  Mordechai has no nerves attached... smart on the doc's part.  Now it is in my bladder and Lewis thinks it is too big for me to pass naturally so tomorrow I will come in and he'll do a cycstoscopy.  And as long as he is in there, he'll also possibly do a bilateral urethral pylogram, a transurethral bladder biopsy, and maybe even a cystolitlplexy!  I have little idea what all this is, but I did get Patti to write it down on some nurse stationary (ala paper towels) for me to look up on google.


More to come!

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!

419) May Clinic Visit

May 17, 2011
Wednesday

Clinic visit with Dr. Lewis. Scrotum is healed sufficiently. Kidney function is fine. Next appointment set for lab work early July and clinic on July 11!

Now onward for the Kerrville Folk Festival!

418) Update & Mom's Day Weekend

May 7, 2011
Saturday

Scrotum Update: It is Saturday again and I thought it a good idea to update readers on my last surgery: have been back to Dr. Lewis for two visits and all is healing well. The fluids are gone and so far not returning. There is a nice little scar. For a week and a half afterwords I wore a jock to keep things secure, and had some generalized pain, but really; the healing has been less painful than I thought it would be.

Mother's Day Musings: I am home alone this weekend; Liz with her friends at their annual "girls weekend" at Rocky River Ranch and Shayna is in Houston at a soccer tournament, so Chelsea and I are here for a quiet weekend of yard work and reminiscing about our mothers and the women we have made into mothers. Many of my friends are putting their mom's pics up on FB as their profile pics this weekend, and in finding one I liked of my own mom, from my early, formative years, it brought back many memories. Many are quite hazy now and yet when I look at them, I have this longing attachment way down deep. This year that feeling is especially poignant since the passing of my older kids' mom, Carol, last fall. I feel, in addition to my own sense of loss, their new sense of loss -- their first Mother's day without their mom. And that associated sense links to my own, more healed sense of loss and brings it back toward the surface this weekend.

I honor both of those women today and tomorrow will add the mother of my last child, Liz.

417) Day Surgery on the Old Scrotum

April 9, 2011
Saturday

Home Report: It is early Saturday morning and I am up by myself... couldn't sleep any longer so I got up to post on my hydrocelectomy yesterday. Since I got home from the hospital at about 6 yesterday I have been off and on sleeping off the anesthesia. Throughout the early evening, after snacks of bean and cheese nachos, I mostly slept, according to Liz. Then I was up for awhile to eat dinner an dozed through some TV shows and a movie (Toy Story III) and finally went up to bed before ten. This pattern of returning from anesthesia-land seems like my norm and is really a quite enjoyable way to return to reality. Now I am up at 5:45 am.

Pain? Yes, there has been some pain through last night and right now as I sit at the computer. By about 8:45 or so last night I was having some localized pain and took two Tylenol. Describing the pain is easy to do for any men reading this post. It is like someone squeezing your balls ever so slightly harder after you feel that pain, but not to the point where you must scream out. I can't think of a way to compare it to any pain I know women might have.

I never like taking the druggy pain pills they allow me to take unless I get to really suffering. Shuffling around on the couch watching TV wasn't really that helpful for the pain so that is when I went up to the cool bed sheets where I could spread out and lay there in the evening breezes coming through the house's second level. When I lay there quietly and still as a mouse, I feel no pain and drift off to la la land again and again, only waking up when Liz comes to bed or at the end of a dream, etc.

So, back to the beginning of This Kidney Adventure: Ever since my transplant, my scrotum had been fairly swollen and never really quite went down to it's normal "hanging around and down" self. Over time, in fact it started growing... first like a tennis ball... then like a softball... and then the Doc and I started planning for yesterday's operation.

Liz took me to NAMC at 8 in the morning for my 9 o'clock check-in time cause she had a workshop to administer early. I had thought I would sit and grade students' group observation papers until 9 but the guy I complained about back in Post #413 (¶ 7) was checking folks in and was bound and determined to get me checked in expeditiously this time. So he got Andrea right out there to rush me down to the prep room to do my paperwork. The nurse down there said, "He's an hour early. We don't even have the room ready!". So Andrea took me back to her office to complete the paperwork. That took about 20 minutes and then we are off and back down the hall for the second time... the room is ready and I slip into something more comfortable and meet my nurse, Crystal of the fast talking variety. I can tell she is competently going thru all her spiel efficiently in a way that they explain the 'rules' when you rent a car. However she is nice and playful and we get along quite nicely. She explains that it will be some time before we actually do any prep so I can grade my papers or take a nap. Somewhere along in this time frame, Dr. Lewis stops by to say "Hi" and I ask him how many he is doing today and he replies that it is only me. As he leaves I encourage him by saying, "Do good" and he replies, "Always" and smiles his way out.

I grade about 5 papers... they are written better than I anticipate and actually have some interesting reflections that tell me the students are actually learning the materials... or, at least referring back to the readings and text to sound like they know the materials. This makes me happy and contented enough to lay back after reviewing them, and snooze away the time til Crystal returns with Liz, an attractive nursing student from ACC with beautiful sparkly grey-blue eyes. Crystal asks if Liz can set my cannula for the saline drip. What can I say but "Sure" to this request for this youngster who wants to learn. I inform them both that I don't use lignocaine cause the pain doesn't bother me anymore. Crystal is very happy about my letting Liz experiment on me and Liz and I talk about her classes and what I teach and how nice it is to do practice learning at NAMC. Throughout the little cannulation, Crystal hovers over Liz, walking her through and sharing with her little tips that make it easier, like holding the cannula, removing the tourniquet, and flushing with saline. Liz does a good job and we all congratulate her and she is happy and I go back to grading and snoozing until this Asian Ansethesia nurse whose name I cannot remember (and I think of as AnesthesiAsia) comes in to explain they will be knocking me out and do I have questions. She and the Anesthesiologist (who came in earlier) both look back into my throat and are pleased with whatever they see. I know this because they NOD agreeably.

So, pretty soon Crystal and the surgical nurse (name forgotten) come to get me and we rush down the halls careening around the corners (I always LOVE this part) and thru double doors that magically open to accept my gurney... and into the bright white operating room, parallel parking beside the operating table. I'm thinking, "How am I going to successfully and gracefully shuffle my fat ass over there..." as AnesthesiAsia says to me: "I'm going to start giving you something to relax... do you feel it......" and then her words are drifting away and everything is okay.

My next recollection is waking up groggily with my Liz coming in the door, saying something, and I happily drift back off... all is hazy but I do remember her reading her book and me waking once in awhile and her giving me sips of water and telling me Lewis said it all went fine and that comforts me back into dream-land. During one of my visits back into waking reality Liz says we are going home and I don't have to stay overnight. During another one she tells me something of her workshop and how it went. The best thing about "recovery" room is that one doesn't have to feel bad about drifting off to sleep in the middle of a conversation with one's wife. There is permission, due to the circumstances, to just nod your head and close your eyes and drift off. How nice.

So, this goes on for some unknown period of time until Lilabeth the nurse comes in to say we can prepare to leave. I can get up and put my clothes on, Liz can get the car and we will meet her out front. My Liz takes off to call Shayna and get the car and I stumble around and somehow make myself put on my pants and shirt and stuff my flannel shirt into my brief case and decide it is too much trouble to bend over to put on my shoes... simultaneously deciding to keep my bright yellow hospital socks and give them to Shayna as my home-coming gift.

Lilabeth comes back with the release forms I sign and a wheelchair and wheels me out to my waiting carriage to drive me home through the Friday Five O'clock Traffic. I am glad that I can put the seat back and drift off to sleep again while Lizzie drive us home. "What a day", I think. Sigh. "And I am still alive" I add. And I am so happy that I'm still on the planet and I've got my Lizzie as my driver... and helper... and partner.

416) What's going on with My Fortic?

March 26, 2011
Saturday

Report: So, at the end of the day yesterday I am sitting at work and Bernadette calls and says she is surprised I answered the phone at 7 pm on a Friday. "I'm the only one here... on a day we are officially closed" I respond. "I am the last one here too", she replies. She has not called to chat, however. They got the results back from my labs on the Myfortic: "You're myfortic levels are non-existent!" she states. "Doctor wants you to take 3 in the morning and the evening to see if that gets the level up." We discuss this for awhile and she wishes me good luck in my upcoming procedure next Friday and we wish each other a nice weekend.

Transplant Clinic: Liz and I went to my clinic appointment last Thursday, the 24th, and Dr. Lewis gave me the once-over, pushed and prodded my abdomen, looked down my throat, listened to my heart, etc., and looked over my last labs (except the Myfortic, which takes longer to come back). He reported that my creatinine clearance is 1.3 and my triglycerides are much better, down from 600-something to 300, which is still high but he likes the decrease (they should be in the 150 range). We talked about lowering my paroxetine, which he got a MedCo notice about... I said I have been wanting to get off it for awhile now... so, he suggested I take it every other day instead of every day. Liz will be the judge of if that is a good idea or not, based on my behavior.

In the discussion part of the meeting I brought up my concerns about having to take 2 BP meds a day to now maintain a healthy blood pressure, whereas for years I was taking half of that and maintaining the BP we want. "Is that okay? Seems like taking twice as much for the same result is not good..." "For your situation, I am not worried about that", he replied. I don't need to raise my BP worrying about my BP he concluded. So, I won't. But I still wonder why...

Finally he asked if I have any questions or concerns about my upcoming hydrocelectomy on April 8th. Nope. Liz wanted to know how long I have to stay in the hospital... may get out later that evening, or the next morning. Depends on how it goes. He concluded, "See you Friday, Jack", and Bernadette came back in to deliver my new med sheet and said Lewis doesn't want to schedule next appointment til after the procedure on Friday the 8th.

415) Happy Birthday

March 9, 2011 Wednesday Happy Birthday today to Mordechai the Miracle Kidney! Two years and filtering fabulously! I am so fortunate. Thanks to friends and family who have supported me thru this whole adventure. And to Dr. Richard Lewis... my hero!

414) Update on my next procedure

March 6, 2011
Sunday

Update: Well, about the only thing mentionable up here is that I recently joined a FB group of my old old old high school chums and that is bringing up all sorts of old memories and thoughts of people and all. And, there are probably many of those folks who don't know about my kidney adventures so they may be visiting up here. I welcome them up here and hope this blog can be an interesting and informative read.

After much back and forth about scheduling, my next little "procedure" is finally on for April 8th cause the doc and I couldn't find any day earlier when we could both be at the hospital.

413) Annual Transplant Clinic Appointment

February 24, 2011
Thursday

Preparation: To prepare for my annual clinic visit and evaluation I have to get extra blood work and do a 24 hour urine collection, which I schedule for a "Sunday" for obvious reasons. Maybe they aren't so obvious to you readers who don't have intimate relationships with the medical community, but all my pre and post transplant friends will understand... and will also probably find this next little story amusing.

On Super Bowl Sunday I woke up early and remembered that it was my day for my 24 hour urine collection. I had already found the collection bottle that the clinic gave me back in November, which was at the bottom of a pile of stuff in the back seat floor area of my truck; washed it out; and put it up on the back of the toilet for this procedure. So I peed, tightened the lid and carried my container and myself down stairs to breakfast. This bottle becomes your appendage for the day... so, you don't go to the park or out shopping, etc. I filled it throughout the day and superbowl and evening and night until the next morning; when I had to take it to the lab with me to turn it in and get my blood work. Well, the receptionist who usually checks me in says, "What're you doing here today? I don't have any paperwork on you..." and I stand there holding my brown paper grocery bag like a bomb... sure everyone knows exactly what it is rather than a bomb. She calls over to the transplant center for my paperwork and they reply that my appointment is NEXT Monday.

I sheepishly remove my brown paper grocery bag and myself back to my truck and back to the house, where I empty out the collection of my precious bodily fluid, wash out the bottle again, and hang it out on the back porch to dry. I try to think of it as a practice run.

This last Sunday I am ready again to collect urine for the lab! Same procedure... same brown paper grocery bag sitting carefully at my feet as I wait for the "check in" and lab work Monday morning. Peggy the lab tech laughs at my story.

One thing I noticed and later asked Dr. Lewis at my appointment this afternoon: Why is it that the first Sunday I collected the total amount was a little less than half the amount I collected this past Sunday? I mean... Super Bowl Sunday shoulda produced much more liquid, right? Dr. Lewis shared with me that urine output can fluctuate greatly on any specific day and it is normal for people to pee twice as much on some days and half as much on other days. Huh!

So, the report from the annual visit. First, my trusty scribe, Liz, wasn't there cause she is hosting her School Social Work Conference this week. I had to make my own notes! Secondly, Maxine the nurse didn't realize it is my annual so she starts with reminding me that my next visit will be my annual. I correct her and she is a bit flustered by that news. She rushes around in and out to get the necessary forms and annual questions ready. Takes my BP and it is 170 over something.

I recall to her a fight I had at the hospital registration desk cause I got here almost an hour early today, planning to check in, get some lunch, and read a journal. The check in guy forgot me and I sat waiting for most of that time. And my weight it up too. To 185! I am thinking, "Boy, they let me go to appointments every 3 months and things go down the drain..."

I nice pharmacy woman comes in to go over my meds and she still has the old list that changed since... we update and she makes notes of the way it is supposed to look. Then Bernadette comes in and we visit briefly and she lets me know that Dr. Lewis is 'on time' today.

Then he comes in and we shake hands and he gives me a once over physical prodding and looking at. I talk to him again about my hydrocele, which I don't think I previously mentioned on this blog. The hydrocele has been getting larger and we (Dr. Lewis and I) decided today to "drain the sac". It'll be a one-day procedure where he'll cut a small slice in the scrotal sac and drain the liquid and see if there is anything to do to ensure it doesn't recur. Chance of recurrence is about 20 to 30% based on my web research.

In looking at my lab results the doc reports that the kidney is fine. My 24 hour collection is used to check out filtering rate and it is excellent. My creatinine level is 1.3 which is good and the cyclosporine levels are good. He is concerned about why my myfortic level is low so he is adjusting those meds so I again need to take 2 twice a day rather than one and we'll check it in a month. Dr. Lewis is also concerned that my cholesterol and triglycerides are high and so he is upping my Crestor. These we'll also check in the next month.

And finally, the doc wants me to double up on my BP meds (linsolpril) and if I get too lightheaded I can either split the times or back off again. Bernadette asked me to do a BP log again and email her the results in a week or so.

So, there we have it. It is now almost two years post Mordechai's joining my other two kidneys and he is doing quite well. Now I need to stop celebrating and take care of my diet and other health concerns.

412) Blog Leaping

February 10, 2011
Thursday

News Brief: I am now doing some posting on TNOYS new blog. My first post is entitled "Oh no! The Sky is Falling! The Sky is Falling! On the TNOYS blog, I will be posting about "best practices" in the strengths-based approach to working with youth and families, our trainings, and possibly a supervisor's corner kind of thing. I will also continue on this blog as my kidney adventures continue. For example, next week is my annual review and appointment at the Transplant Clinic! Stay tuned...

411) 2010 Year End Update & Colonoscopy Report

January 6, 2011
Thursday

News Brief: Three pieces of news for youse ~~
1. Texans can now register to donate organs on their auto registration renewal website.
2. If you watch Desperate Housewives on ABC TV, the character, Susan, after being trampled in a mob scene, is going to have to be on dialysis beginning this new season. We shall see how this dialy-drama progresses.
3. My agency; TNOYS now has started a web log here on Blogger. I don't think we know exactly how we are going to use it... but, if you are interested, check it out by clicking here.
5. A good read on the current "state of union" kind of post on dialysis... calling for a unified approach for "better dialysis". John Agar, in the first post on the Fix Dialysis blog discusses his definition of better dialysis, and calls upon users of the web to come together to found on basic blogsite for a unified approach to blogging in support of better dialysis. Read more at http://www.fixdialysis.com/#

2010 Year End Update: One of the things about being a kidney transplantee is that once we have a new kidney we are in better shape and happier and yet there are a number of other medical issues that continue to keep us involved with the medical community.

As I have reported in this blog, there is a continuing regimen of medications that must be monitored and adjusted forever. I haven't recorded all my medication adjustments over the past year, but I can tell you that there are adjustments about every month or so. As the transplant center staff review my bloodwork every month or so, they find that I need more or less of the following meds to keep my system in the balance it requires for optimum functioning. It is very important for my good health that cyclosporine and myfortic remain effective. For the most part of the last year, in addition to these anti-rejection meds I have also been taking levothroroxin, crestor, lisinopril, flomax, oscal, calcitrol, and omeprazole. Only the oscal (beginning after my thyroidectomy) has been changed significantly as my remaining parathyroid glands got to working (see post # 408).

This past year has included some medical procedures as well... primarily my parathroidectomy (reported in post # 405) and a recent colonoscopy that I haven't written about to date. After having it rescheduled several times, Dr. Poreddy performed it on December 20th as part of my Winter vacation. I didn't really realize at the time that he intended to do the colonoscopy and an esophagastroduodenoscopy (EGD) to look up and down both sides insides.

As I have said many times in the past, the conscious sedation drugs (sometimes called 'hypnotics') they use to put you out for these delightful-sounding procedures are among the 'best' (meaning giving one a really nice drugged out feeling) I have ever taken. During the procedure one has a sense of what is happening while feeling really relaxed and comfortable. Once in awhile there are some poking feelings and the patient can comment, causing the doctor to adjust their endoscope and keep it on track. As the patient comes off the meds, they have a sense of waking up in an altered dream-like state and I usually have very scattered, in-and-out thoughts and memories (reminiscent of Billy Pilgrim's popping in out of segments of his life) of the span of time on the medications. Going to work or out for a walk in the park is out of the question. Eating tasty food, laying around on a comfy couch with a favorite pet or stuffed animal, and listening to music are my favorite things to do for about 6 hours after the procedure. I like ice cream, jello, pudding, and a soft pillow during these times. I have never experienced much after-procedure pain at all.

So, Liz was there to talk to the doc after the exam was completed. According to Liz, Dr. Poreddy reported that... "His upper GI tract shows a lot of inflammation and he has colitis, diverticulitis, (...and probably a couple of other itises...). He needs to begin taking omeprazole and make an appointment to see me in 2 weeks." I will spare you blog readers the pictures we have of the tunnels of my insides. Now that the holidays are over, I will make an appointment. I have been taking the omeprazole and while visiting Joan in Dallas, she made me drink some fiber powder in my coffee each morning.

In general, 2010 has been a healthy year for me. Mordechai the Miracle Kidney is doing great and I am back to my regular duties, behaviors, and foibles. Although I am fine, the environment outside my little family system is going to Hell in a hand-basket. My larger professional system is splintering and possibly coming apart from the loss of federal and state funding for training front-line social workers. The even larger social services system is suffering state funding cutbacks by a state governor who believes in tightening the in-state budget to convince the country of his financial prowess: "Texas is one of the few states with a surplus" he claimed during the last state election, as he systematically cut social services to further disenfranchise the already marginalized citizens. "Don't get me going" part of me says to my blog-writing part. This blog is about Jack's KIDNEY adventure, not politics.

Closer to home, just one sub-system out from us, my adult kids and our brother-in-law's mothers have passed on during the past year, causing us all much grief and pain and adjustment. We are reminded that life is precious and, at least from MY perspective; we owe it to ourselves to live our lives like we would like to be remembered by those who will miss us the most once we have moved on.

410) Transplant Clinic Dr. Appt.

November 11, 2010
Thursday

NAMC: Appointment with Dr. Lewis. He checked my throat scar and the swelling that has now gone completely. All good. Prodded my body and checked my labs. The report: everything is just fine. Parathyroid glands are awakening... my calcium was high.

So I can go from my 1, 2, 1 regimen down to 1 Oscal in the morning and one at night. As my parathyroid glands wake up they start producing calcium and therefore I need to take less oscal.

In short, labs look good, parathyroid glands are doing fine, BP and creatnine is great. I'm a clean machine! Next appointment set for February, with annual meds before the appointment.

409) Texas End Stage Renal Disease Summit

November 9, 2010

Tuesday

Doubletree Hotel Austin: Ben Wislinski, from the Dialysis Patient Citizens group in DC had asked me to sit on a panel of patients who selected different modalities for their dialysis. So here I am at the Doubletree in a big conference room, seeing folks I haven’t seen in a few years: Chad from the DPC in Washington, and Herman the Nurse and Suzanne the Administrator from El Milagro. I spot Herman and Suzanne and walk over to join them at their table.

This summit’s agenda includes:

1. Breakfast;

2. Welcome remarks from Chad Lennox;

3. Two doctors discussing advancements in renal home therapy

----A. Dr. Robert Farkas on the benefits of home therapy as a treatment modality, and,

----B. Dr. James Sloand from Baxter discussing future trends in home renal therapy

4. Living with ESRD: A patient’s perspective

----A. Shelly Inglis, Home-Hemo patient and DPC Patient Ambassador

----B. John Howell, former Peritoneal Dialysis (PD) patient with a kidney transplant

----C. Jack Nowicki (Me), former In-center Dialysis patient and DPC Patient Ambassador with a kidney transplant

5. State medical services available to ESRD patients ~ Lisa Glenna, Texas Kidney Health Care Program

6. Healthcare issues and the 2011/2012 Texas Biennial Legislative Session ~ State Representative Elliot Naishtat

7. Renal home therapies and public policy ~ Chad Lennox, ED of DPC

The first speaker, Dr. Farkas comes across as a unabashed proponent of peritoneal dialysis, reporting how much safer this modality is today than in years passed. He discussed the evolution of PD, new research on dialysates, and all the various issues about the cost of home modalities versus in-center treatment. Dr. Sloand spoke about the future for dialysis modalities, touching on the current modalities in more detail* and forecasting the future. He reported on improving outcomes through “comparative effectiveness” and what will be “good outcomes for less money”. He mentioned that present research shows that survival rates between PD and Hemo outcomes are basically equivalent and that the verdict on Home-Hemo is still out (although the present outcomes are encouraging).

In the future, Dr. Sloand predicts (or forecasts) the following: 1) In home efficiency of PD solutions will increase (finding new and better dialysates) and better filtering membranes; 2) Caregiver connections and education for them and patients will increase; 3) Immediate online support and education, feedback, and problem-solving to patients and caregivers when mistakes are made; 4) Automated, wearable artificial kidneys (AWAKS) will be available and they will regenerate the dialysate; 5) HHD will be as “incredibly” easy to use “as buttoning a shirt”, and they will warn patients when things are going wrong; and finally, he sees a time when 6) implantable renal replacement therapy (RRT) will be available that will work 24/7 using a human nephron filter (glomeria with a permeable sieve). These innovations and additions to the doctor’s arsenal will make kidney failure more treatable and cheaper on the whole society.

From the other two patients talking about their preferred modalities of dialysis I learned some interesting things. John Howell, in discussing his experience being a PKD victim in a family where PKD was rampant, said that he had heard early on that in-center dialysis was a “death notice” and therefore, as soon as he could, he chose PD as his modality. I remarked to him that I am glad I hadn’t heard that. Shelley Ingles has been through it all, and a few times, I might add. She is currently on Home-Hemo and touting it for the flexibility it allows her in traveling. When she has difficulties (or, had difficulties) she goes for in-center treatments in San Marcos’ center. She also was on PD and had no problems with it for some time before she had a transplant. I think her transplanted kidney gave out after about 10 years and thus she is now on HHD.

Since we are getting ready for an important legislative session here in Texas, and that involves TNOYS, I was particularly interested in hearing Elliot Naishtat’s report on what we can expect in the lege. After telling his personal story about coming to Texas from New York as a VISTA Volunteer in the mid-60’s, he reported on the changes we can expect based on the Republican gains in the Texas Legislature: basically that we will see major cuts in the health and human services areas. He focused on the possibility of further cuts to all HHS programs in order for the state to live up to the governor’s promise of no new taxes.

As it stands, the state HHS program is going to the lege with a proposed budget that cuts all the prevention and early intervention (for delinquency and child abuse) services by 84% since the HHS programs cannot fathom cutting “critical services”. Training has already gone by the wayside and state agencies are being asked for further 10% cuts in the near future. Also, Rep. Naishtat mentioned that there is the possibility the Republican-run lege will attempt to legislate the state pulling out of the federal Medicaid program. The state budget shortfall of approximately 18 to 24 billion dollars, along with the governor’s “live within our means” motto will make a huge dent in HHS services, school financing, and any other places that are not seen as absolutely necessary.

Chad Lennox closed the summit by talking about ESRD patients' opportunities for working through the DPC and asked everyone to keep abreast of ways they can advocate for the continuing needs of all kidney patients.