434) The Postponement of TURP

June 20, 2012

Thursday

Report:  My TURP "procedure" which was formerly scheduled for July 23rd is now scheduled for December 10th.  Here is the story.

Back in April (Post # 430) at our meeting with Dr. Bruce we found that he wants to do a trans-urethral resection of my prostate (TURP) to shave the prostate around the urethra to allow it to pass more urine more easily.  This is a fine idea in theory.  On our way out of the office we stop to meet with Becky to set an appointment for the surgery and select July 23rd because it is open on mine and Liz's calendars and because it is after I go back on Medicare.  We are as happy as the people on the cover of the Patient's Guide pictured here: we understand the operation; have decided it is a good idea to have one; and have selected a date for this overnight stay in the hospital for this procedure that will help me avoid future bladder stones, pee better, and such.


Back at work I add the July date to my calendar and leave several days afterwards for staying home to rest and recuperate and resume my work-a-day life.  On May 21st I am beginning to schedule things for late July and email Becky to find out if I am going to stay overnight at the hospital.  She checks with Dr. Bruce and emails me back, saying that "He does plan for you to stay at least one overnight.  Hopefully only one night."  I am fine with that and think to myself... "I also better leave a few days for resting up at home..." so I schedule a trip down to Wharton to do training for them for August 3rd.


By June 20th Liz and I have talked and she says, "The doctor said you have to stay home for some WEEKS to recuperate"  and I say, "Nah.  Becky says I'm only in hospital overnight..." and Liz shakes her head at me and tells me to get back in touch with them cause she remembers several weeks... So, I send Becky the following email:

"Becky ~ another question has popped up in a conversation with my wife last night.  She remembers that Dr. Bruce said something about ‘down’ time after the procedure.  I didn’t remember that at all and need to let my work know how much time I will be home recuperating.  Liz (wife) said she thought Dr. Bruce said something like 2 weeks.  I have an out of town trip for a training gig scheduled for August 3^rd, 10 days after the I go home.  And, unless I put time out of the office on my calendar, they are very likely to schedule other trainings for me to conduct.

"Please ask the Doc how long he wants me at home post procedure, and any other kinds of restrictions that may keep me from traveling (usually by car, but sometimes by air) or doing trainings (standing up and moving around for hours at a time).  Thanks in advance.  You have been very helpful so far.  Jack"

Well, this one has to move up the line to the nurse, who has to call me cause nurses don't really email people for some fairly obvious reasons. Nurse Joann calls me and clarifies that usually the home recuperation time is 2 to 3 weeks and it isn't a problem with lots of people because they're 'retired'!  I say that it will be a problem with me cause I work and didn't think it was that big a procedure.  She reports back that she'll ask the doctor and call me back.  She does and a couple days later she calls and says that Dr. Bruce wants me to stay home for 4 weeks post procedure cause I'm a transplantee and such.  I really can't remember exactly what all she said then cause I was SO freaked out about spending so much time away from work; and about the possibility of going stir-crazy sitting around the house all day long!


So, I generate the following parts of an email back to Becky; asking her to copy it and share with Joann and Dr. Bruce. 

"My training event in Wharton on August 3^rd (1 week & 3 days) is possible to re-schedule so that is not a problem.  However, I also have a major conference that my network presents in San Antonio for 4 days from August 14^th thru the 17^th.  This event I really cannot miss: it is 3 weeks & one day post surgery.  If I cannot be 100% (or, at least 89%) by then I will need to postpone the surgery.  Since finding out that the recuperation time is so long, I have done a lot of reading about this TURP and really have no symptoms right now that seem to make this an immediate need (such as having to get up at night to pee; feeling urgency during the day; or poor or interrupted flow) and I recall that when the doc and I discussed this we selected July because by then I will be back on Medicare.

And,  "My Fall semester of teaching at UT begins September 10^th and gets out on December 3^rd, and I have a month off til January 14^th, when Spring semester classes begin.  There is no way I can miss 4 weeks of class, since this graduate-level class only meets once a week."

On June 19th Joann calls me back and matter-of-factly says that I must stay home for one month post procedure, period.  So, there is the story of my postponement of TURP.  Liz seemed relieved, but truth-be-told, I am now concerned about being down and housebound during the holidays.  Oh Well.  Such is life.

433) In which Jack walks out before his appointment

May 30, 2012

Wednesday

Home:  Some notes about the last week: I had an appointment last Friday (the 25th) at NAMC to go in and have Doc Lewis look at my blood pressure chart I'd been keeping since my last clinic visit.  Well, I found out the appointment was on the 25th on the 24th, when Maxine called to remind me of the appointment.  I thought the appointment was scheduled on Tuesday, the 29th, after we returned from the first weekend of the Kerrville Folk Festival.


NAMC:  So... when I shot up to the clinic on Friday morning for my 10 o'clock appointment, I had to take Liz's mini-van cause my truck was full of watermelons to take to the KFF kitchen that morning.  I was early to NAMC and they told me I needed to get lab work (which I found out today was wrong).  I rushed to the lab and got my blood drawn and peed in a cup, then dashed on down to the Transplant clinic for my 10 a.m. appointment.

"We're running about 20 minutes late", I was told, so I went and got a blueberry scone and waited and waited and waited.  After 11 a.m. I finally decided I had to get those watermelons down to Kerrville, so I begged off my appointment and left my blood pressure charts (see image right) for Dr. Lewis to review.  I felt bad... but decided I had to leave because they were running way way later than ever before and I had watermelons to deliver. 


So, jump to today.  As I was considering emailing Patti she called me to report on Dr. Lewis' review of my charts... they look good to him so he wants me to stick right with my current meds schedule.  Creatinine is 1.3 and my cholesterol is 117 so all is good.


I explained my Friday story to Patti and she understood... and we went over the calendar for next visit... they have me on the calendar for July 24 and in the computer as July 20 (when I will be in El Paso doing training).  So, maybe these calendar differences are not all my ADD operating.  

I shared that I am going in for my shaving (TURP) on July 23 so we scheduled me for labs early on July 23, and they will find a way for Dr. Lewis to see me shortly after my procedure...  and let me know via phone or email.  So it goes!

In the News: Just heard this story on NPR ~~ "Trichakis and his colleagues decided to try to figure out how to balance fairness and efficiency in kidney transplants. They spent last summer building a sophisticated computer model that included thousands of variables and decades of data on organs and patients and medical outcomes.

At the end of the summer, they ran their model against the formula doctors currently use to allocate kidneys. Trichakis' model was just as fair as the current system— and enormously more efficient." Read the article  by clicking here: NPR Planet Money 

432) Transplant Clinic Appointment

April 20, 2012

Friday

South Austin Med Center:  I arrived at 7:30 am for my lab work and Hattie the lab tech reported that my regular tech, Peggy, has quit and moved back home to east Texas.  So, Hattie does my draw and then I head straight up to NAMC for clinic.  


NAMC: My first time to register without my Medicare 36 month post transplant status... now only on Liz's insurance... I have my checkbook in case there is a co-pay... but the woman who registers me hardly gives the change a glance as she types away and clears me for another clinic visit.


Since I am almost an hour early, I head to the cafeteria for coffee and grading a few papers before the appointment... and a person from the transplant center finds me and directs me back to the NAMC lab cause part of my earlier lab work wasn't done correctly.


By my appointment time I am situated in the clinic and Maxine tries to take a slower, longer time getting my BP; to no avail, it is still 174/80. Even though we all know I have "white coat hypertension" and Maxine usually takes it right after I sit down and while she is asking me questions, it has been worrying me that it seems to be creeping up over time.  I did mention it to Dr. Lewis several visits ago and he only seems moderately concerned.  Maxine runs me through all the usual questions for the form and I spend some time describing my recent bouts of hives: how they come on in the middle of the night, what they look like, how I decided to wait til after my Dr. Bruce referrals to call Dr. Krienke back about what to do next, and all about how I have been dealing with them over the last few weeks.

Patty, my new transplant coordinator, comes in with another new nurse (Pat) to discuss what Maxine has just written down and I repeat the whole story again, with the nurses talking about various ways to wash my sheets in Dreft and/or food alergies, etc.  Patty also asks about my BP monitoring and I admit that I haven't been tracking it as closely recently because of my neglectful nature and just having been focused on other things in my daily routine.  She makes me promise to get back on the schedule of checking it daily!


Finally Dr. Lewis comes in and asks me how my urination is going: pain? trouble starting? trouble ending?... to which I answer that all is as good as it was before the bladder stone and he replies about his talk with Dr. Bruce and how we should do the surgery and it is okay to wait til July and how he wants to know if it becomes any problem.


He continues that my cholesterol is doing so good that he wants me to drop my Crestor to 1/2 ever other day.  Creatinine is at 1.4 and every thing else looks good.  I tell him about my hives with the disclaimer that he shouldn't have to worry about that with all the important kidney and prostate stuff, and he counters with that I should leave it to him what he worries about.  


He wants to know all about the hives and suggests that I work through Dr. Krienke to get an appt with a dermatologist, or let them find one (although he admits that he doesn't personally know a good one to refer me to... and adding that HE will be studying up on hive himself in relation to this).  His recommendations are 1) get an appointment in the morning so there is at least a chance that I will have them when I go in; 2) Chart when I have them, including what I ate the night before; 3) Take pictures of them to show the dermatologist, and 4) Have the dermatologist send him the results.  He concluded that if they aren't caused by something external in the environment, then they are caused by something internal... and he wants to know about anything going on internally!


He wants to see me in 3 months... and then he leaves as usual, with a handshake and stating that the nurses will be back with appt info, etc.   About 4 minutes later he pops in again and says, "Your to number on your BP is too high.  I am adding another BP med and I want you to chart it and come in in one month with your chart... no blood work"  "Okay", I reply.  So, when the nurses come back in with my appointments, I find that he has added Labetalol, 100 mg, 2X a day.  Patti says I can take it along with my Lisinopril and if my BP gets too low (<110) then back off a little.

431) Adding Cluster Map

April 16, 2012

Sunday

For the first 4 or 5 years I wrote on this blog, I had a Map Widget that tracked the folks who visited my blog... by location and by operating system.  That widget finally went by the wayside and I can't remember if it became a thing I had to pay for or if it just bit the dust.

Today I added another widget for Cluster Map and I am quite excited about it!  So, now, again I can see who visits here and keep track of the locations of my visitors.

As always, thanks for your support and encouragement in my ongoing kidney transplant-related blog. 

430) Meeting with Dr. Bruce

April 9, 2012

Monday

Round Rock:  I drove up to Round Rock with Lizzie to meet with Dr. Bruce and get the consult from him on my earlier procedure.  Even tho we got there at 9 there was a line at his receptionist window and the woman working the window seemed to be taking her time with each person in the line.  I was thinking they should have a take-a-number system or something.  When it was my turn, she checked for my appointment, and gave me a specimen bottle, and I went about the business of filling it, even though I was pretty sure that the consult wasn't going to require that kind of testing contribution.  I wondered how many samples of unused urine they collect in a day.  Also, there were no paper towels in the restroom.  This office is not what I am used to in the way of medical offices, I thought... wondering if I was being to picky, they were just newly moved in, or if this was their usual pattern of behavior.

We waited... and I started reviewing a paper for School Social Work Journal.

An assistant brought us in to a treatment room and went about checking my BP while asking me questions, etc. and, of course, it was high: 160/80.  I complained to Liz after she left the room... "they never give me time to settle in, relax, and get a good reading..." 


Dr. Bruce came in and sat down with a pen and pad and said, "I want to draw you a picture."  He drew and explained that this situation is like a pond that fills with water and then can't drain completely... (which he had said last week too) and this time he added, "so when it can't drain completely cause of the prostate squeezing, bladder stones develop".  OH!


He described that they want to do an operation... I asked about a stent... and he replied that they usually don't do stents for young guys; only older people... and that made me feel young.  We brought up my deal with Medicare and discussed doing this operation in July, after I get back on Medicare.  He thought that was fine; and added that he still has to talk to Dr. Lewis about it all.  


So, I have another appointment with the Transplant Clinic this upcoming Friday... and this saga will continue.  Looks like there'll be a trans-urethral resection of my prostate (TURP) in the summer sometime.

429) No Pain, No Gain is the Only Way I can Positively Reframe...

ALERT: Graphic content intended only for patients who want to know more about these procedures.

April 5, 2012

Thursday

Round Rock:  I drove up to the Round Rock office of Dr. Grady Bruce early... straight from UT after class.  I was scheduled for a cyctometrogram and uroflow study with Tracy, and according to Dr. Lewis, who surprise-called me on my cell phone as I was driving back from Houston last Friday, Dr. Bruce is gonna stop in and see me while I'm there. 

First thing: I have to report to the receptionist that I am no longer on my 36 month post-transplant Medicare and that Liz's insurance is covering this.  She calls and they tell her I am on Medicare and then after some back-and-forth, they tell her this procedure is 100% covered... not even a co-pay.  That pleases me.  However, Dr. Bruce is aw ay "on call" somewhere and won't be back til 6.  But, the 1:00 appointment no-showed so Tracy will be with me shortly.  This I find out in response to my statement to the receptionist that I gotta urinate now and should I go or wait?  Wait.

So, Tracy comes out and brings me back to a room with a barber style chair with stirrups and tells me to go into a adjacent bathroom, strip from the waist down and urinate into a large funnel sitting over a small beaker with a little grey tube leading outa the room and into the treatment room.  I am thinking this is easy.  I pee into the funnel and they somehow measure the "flow" in the little grey tube.  Then we talk about it and that's that. I do so and put on a gown backwards and return to the barber chair room, where Tracy introduces me to Dr. Etsen Cho, who is going to observe and learn from my experience.

Oh.  And, I hear from back somewhere that Dr. Bruce is back from his "on call" and available.  That's good. 

Well... there's a reason they don't tell you to much about cyctometrograms like they do with most "procedures" we patients volunteer for.  You know: they usually have a nurse call and completely explain and give info about the procedure before you go in.  Not in this one.  And, I had been so busy in the last week or so that I hadn't even googled it.

Tracy invites me to sit in the chair and sets about catheterizing my penis!  Oh. And, Oww! And "This stings!"  Tracy asks me to breathe in through my nose, out thru my mouth... slowly... as she continues to try to run this catheter up my penis, through the prostate-squeezed urethra and into the upper part of the bladder.  She is explaining to Etsen how she will try another size (?) or something while I am trying to breathe thru the pain of each of her attempts.  No pain for the time it takes her to re-adjust her tools.  That's nice and I breathe better. She apologizes for the pain... and we are off on it again.  I breathe they way she suggests, harder and more forceful... she pushes that thing up there... and I am conscious of clenching my teeth so hard I worry I'll break one... and I can feel tears rolling outa the sides of my eyes and back down my face towards my ears.  This is tough! 


She pulls the catheter back out and says something like, "It's just to small an opening... I can't get it through... will have to get Dr. Bruce in to try."  I breathe / sigh / relax.  The women leave the room and I lay back and visualize how I can dissociate when they resume this procedure.  


Tracy and Etsen return and we are talking about my years on dialysis, the kidney transplant, my teaching at UT, ..Macs versus PC's, and how this whole thing started:  I thought I had a urinary tract infection and went to Dr. Krienke, who did a culture that showed it was not an infection and then about calling the Transplant Center when the painful urination continued... and about the hosptialization and yada yada yada.  

Dr. Bruce finally comes in as I am finishing with Dr. Krienke and his referral to Dr. Floyd for me and Bruce says Floyd is part of his practice... and comments that I must have had my share of experiences with doctors... He sets about asking Tracy some technical questions and expertly inserts the catheter again (more of the same pain) while saying "We have some tricks..." and in it goes, with him concluding, "I think it's in... it's not getting shoved back out..." and I am breathing out and sensing that even though it is somewhat uncomfortable it is not painful at this point and I know I can handle it from here on out!


He says that now Tracy will continue the flow test and he will study the results, call Dr. Lewis, and meet with me as soon as he can to fill me in too.  Tracy brings out the funnel and jar contraption and sets in front of my chair.  I have these tubes up my penis and she describes that at some point I will either sit and urinate or stand up in front of the funnel and urinate into it, while the machine measures the "flow" and pressures on my urethra and my sphincter.  Tracy continues; explaining to Etsen what she will be seeing on the graphic display and instructing me on what will be happening too.  

Long story short: They fill my bladder with a solution and want to know when I first can feel the cool liquid in there; then when I first feel like I want to urinate but wouldn't normally go to the bathroom; then when I begin to think I might want to go to the bathroom; and then when I it is time to go to the bathroom; and "Now I want you to wait til you can't wait anymore..." Tracy concludes.  We talk some more about trivial stuff (her going to UTA, marriage and family counseling, respecting our elders, etc.) while I continue to hold it as long as I can.  She tells me that if I feel that I cannot urinate with two women in the room, I can ask them to leave right at the last moment.  I am wondering how this all will happen and envisioning if indeed I will be jumping up to pee and yelling for them to get out... don't imagine that will happen when the time comes.


We talk and just enjoy our visit until I can't hold it any more... and I stand up, holding my tubes and all, and relieve myself over the funnel ("Ahhh") as the women watch the measurement graphs charting my performance!  What a scene!  With all those tubes up there I have to concentrate to ensure it all goes into the funnel.  Then Tracy asks how that is like usual and I (without even thinking of that absurdity of that question) report that I didn't feel like the flow was a forceful as usual when I feel this kind of urgency to urinate.  I add that I think the tubes up there may have impacted the normalcy of my gushing flow... or something to that effect.  Tracy considers that and nods that that reflection might have some merit... also saying to Etsen that my flow seemed, on the graphing display, to be less than a normal flow.  I, in my mind, agreed... and yet the part of me that is happy this is over doesn't really care at this point about the findings.  I just don't want them to say, "We gotta do it again..." 


Tracy concludes that we are done for now.  She simply slides them tubes out and I get dressed.   As a kind of debriefing gesture, I ask Etsen if her name means anything special in her culture (she is from Camaroon) and she replies that it means 'hut' and was her grandmother's name.  Tracy comments that she loves ethnic names and we are all smiles as we say our goodbyes.  "What a day" I think to myself as I drive away towards the south.

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!