363) Two Months Post Transplant

May 16, 2009
Saturday

So, it's been awhile since I posted and it's been awhile since my last doctor's appointment and lab work. I am still adjusting to the regimen of a transplant person. Last Saturday, the 9th marked the 2 month anniversary of my transplant! There are specific stages of "healing" after a transplant that go something like ---> 1) first week; 2) first month; 3) first three months; 4) first 6 months; and, 5) first year... and you can claim an Anniversary after completion of each stage: at least I do since I think of anniversaries as holidays. So, even though it's only 2 months, to me it is an anniversary. On the 9th Shayna celebrated by beginning the her spring soccer tournament by winning 2 of the three games and tieing the third. Afterwards, Shayna and I go shopping for Mother's Day. I stay home from the games... still not wanting to be in crowds much. Other notes of note are detailed after my Transplant Report.

Post-Transplant Report:
My last lab day was scheduled for May 12th and it was after a 12 hour fast. So, lo and behold, on May11th I started fasting at 7 pm and then forgot my meds and didn't take them til 9:20 pm. This meds and fasting process is meant to conclude with blood work at 7 am... so I figured that at 7 am I'd still have until 9:20 for my meds level to be where they want it for the lab work (see Post # 354, April 4th) and I called Bernadette at about 8 am and she agreed and said that I should repeat the process again Tuesday nite and have labs Wednesday the 13th... the same day as my clinic appointment.

I fasted again on Tuesday, from 7 to 7 and made sure I took my meds at 8 pm sharp and then went for labs Wednesday morning at 7:30 for labs. Of course, that morning was 2 months since my last "sign in" at S. Austin Med Center, so I had to go thru the whole damn sign-in process again and that took 1/2 an hour... so Peggy took my blood about 8:00 instead of 7:30! "The best plans of men and mice often go awry"*

Post Transplant Clinic # 4:
Later in the afternoon I meet Liz at NAMC for clinic and there too, we have to go thru the whole half hour re-registration, making us late for the appointment at 2:00. Maxine is waiting for us half way down the hall and quickly ushers us in for Part 1 of the clinic, the taking of my weight (167 on their equipment - 162 @ home), temp, and BP (145/75). Then Maxine asks all the normal questions like pain?, nausiousness?, diahrea?, headaches?, pee color?, night sweats?, etc. Then she ushers us into the treatment room and Dr. Lewis comes in in about 2 minutes (unusual) and asks, "How are you doing Jack?" and I answer, "Pretty good." and then he goes thru many of the same questions and we discuss my recent groin pain when running and scrotum pain when they bounce. "Hmmm. Slip into a gown and I'll be right back." I do and he does... and he does a physical exam and concludes that all is well down there and I probably just over did it or lifted something too heavy... oh yeah, "Maybe it was moving the new stove?" I remember.

His report to me is that all is as good as it could be at this point for a person my age and size. "Am I small?" I query... "No; large" which surprises me... I never think of myself as 'large' except in my girth. He continues with the following report in some sort of order that Liz and I recap at Spider House later: "Creatinine 1.0; blood count is Good; Cholesterol okay... low; Bad Cholesterol little high but also good; meds all good ---> no changes this time; I am extending your Dapsone for another 6 weeks; you're doing great! So, I think we'll go for 5 weeks before I see you again; but I want you to have labs every week during that time."

My Report to Lewis includes 1) questions about sleeping more and he thinks it may be that I need more sleep or am pushing it too hard, or even possibly some post-transplant depression... he's not worried about it. 2) My question about getting back out 'on the road again' for a workshop in Alpine on June 15th, and dealing with hand-shaking, etc. He suggests I be careful to not pick my nose while shaking hands with people and head to the rest room afterward and wash up. Take some of my anti-bacterial wipes for doorknobs, etc. We conclude with my reporting a little about TNOYS probably losing a big grant and my putting in a letter of inquiry for a big grant. He asks about what it would fund and I briefly tell him it is a 3-year study for our network agencies that would look at best practices in ensuring fidelity of face-to-face practice to training. I like good docs (and I cannot lie)..., like Lewis, who show interest in their patients' lives outside of their medical needs, call them by name, and take the few extra minutes to have a 'relationship'. Research shows that building a relationship is an important common factor supporting positive outcomes (maybe in medicine too, according to Bill Moyers).

Then Dr. Lewis leaves and Bernadette enters and says, in response to Liz's question, that I no longer have to chart my pee! Yippee!... but she does want me to continue to chart fluid intake, and weight, temp. and BP in the mornings so we have a record in case we need it.
I discuss briefly with her my fluid intake going to Hell since going back to work and she can't understand why I can't just drink 2000 ml. while working. I reply that I get into some project and focus on it for hours without remembering to take a break for lunch or a drink. "Don't you get thirsty?" she wonders and I either think, or say, "Yes, but, I keep working until there is a good stopping place... like when my brain hits a dry spot :) or I get to a point where I need to sit back and think... and then I'll take a drink.... but, that only happens once or twice a day."

So, she says something like, "You just need to take 4 bottles of water to work and set them in front of you on your desk" and I reluctantly nod my head. She is right, of course. I do need to find a way to drink more H2O and get the intake up from about 1350 a day to the required 2000. She also adds that I can watch my pee (without measuring it) and when it gets too dark or cloudy stop for a good long drink. She gives us the new and updated Med sheet for my notebook, including the following new information: 1) Walgreens @ Brodie for the continued meds ; 2) Labs on 5/19, 5/26, 6/9, and 6/19 at 7:30 am at S. Austin Hosp EXPRESS Lab, and 3) Transplant Clinic on 6/17 at 1:20 pm - register at 12:50 pm.

All in all, I am quite happy with the clinic today... and Liz and I have a short date at Spider House with iced coffee and small talk.

Other News of Interest:
May 8 ~ Grandma Joan Comes to Town: Big weekend (David's birthday, Mom's Day, etc.) so Joan comes down from Dallas and we all celebrate by going to Fino's for dinner after work. Brother-in-law John baby sits the three young boys while the "adults" plus Shayna go out for a nice dinner at Fino's which for me was okay food for too much money. But, everyone liked it and four of the girls went directly to the ballet afterward. I went on home watched pro basketball.

May 10 ~ Mother's Day: Shayna gave her mom an African violet and we had a nice quiet morning before meeting the relations at Eastside Cafe for a wonderful brunch. We left the group early in order to get Shayna to the last two games of the Soccer tourney... and were only about 10 minutes late for the first game. I went home... and the Kick Kats won the first game easily and then played for the championship against the Starlettes again! I went over to the fields for the second half and watched the Kats score 4 points in the half, winning over the Starlettes 6 to 2! Once again the Kats are the champions of their league (U12)! This weekend (5/16) they are in Victoria and have won the first game in that tourney 5 to 0. According to Liz, Shayna is playing great: and while we are on the phone the Kats score two goals in the second half of their second game and are now ahead 4 to 0 in the game they are playing right now! Wish I could be there.

May 12 ~ Shayna's Induction to the National Junior Honor Society: On Tuesday evening Shayna was inducted into the NJHS, as was Liz, many years ago. There were tons of parents there and I tried to not get too close to anyone. My Pics were pretty blurry because they were taken from half way up the bleachers that were bouncing with applause... it was fun watching Shayna look proud and happy looking dressed up with a number of her Kick Kats team and at least one of the Awesome Foursome too. Note that in the second pic Shayna and the NJHS Officer right behind her have on the SAME dress! Shayna was okay with it and snickering, and the other girl was definitely NOT okay with it and didn't even shake Shayna's hand. They stayed far apart during the reception afterward. Lizzie and I laughed about the whole thing and a few of Shayna's friends mentioned it to her. The last pic is of Shayna and Jaimie, one of the Awesome Foursome, who figure strongly in a story Shayna won awards for and which the school had published!

May 14 ~ Shayna's Play Performed: Since Shayna's book was published, the school's theater group picked it as one of three to develop into a short play, that Shayna titled "I'm Sorry Jay" and then worked along with the director to select the actors, re-write the story into dialogue, and work with the theater group on all the aspects of the production. Liz went to see the play on May 14th although I had to work on high priority stuff at TNOYS. After the play, Shayna and the Director stayed on stage to answer students' questions about the production. It was very cool! (Pics of the production coming soon).

Back to Today, May 16th: These longer posts take time... I have to find a happy medium... today all is quiet around here... raining a lot with a comfortable 75 degree temperature allowing me to have all the windows up. I am missing lawn work (needs mowing badly) and all the flowers (especially the hibiscus, petunias, kolanches, roses, red yucca, and lantana) are blooming so it looks overgrown out there but quite colorful. The "depressed" state seems to have moved on and work is doing fairly well at keeping me busy and motivated. I am still very happy about being able to eat more like I like to eat and taking meds only twice a day instead of taking binders after every meal.

To my friends still on dialysis: envision getting your transplant so you can once again enjoy life without the phosphorous blues! Namaste my friends on Lifealysis.

Notes:
* Quote from Robert Burns retrieved online from Robert Burns Country.

362) Advocacy Opportunity

May 6, 2009
Wednesday

From the Dialysis Patient Citizens (DPC) advocacy group, we all got a request to advocate for legislation to support the Kidney Transplant Patient's Act of 2009 (S 565 / HR 1458). This legislation will help transplant patients. Currently the Medicare ESRD Program only covers immuno-suppressant drugs for 36 months following a transplant. With the average annual cost of $17,000 a year, patients must find a way to pay for their medications after the initial 36 months. When passed the legislation will allow Medicare to cover these costs for the life of the patient. As quoted from the DPC newsletter:

"RX individuals who receive an organ transplant must take immunosuppressant drugs to reduce the likelihood that their body will reject the transplanted organ. Currently the Medicare End Stage Renal Disease (ESRD) program pays the majority of dialysis and transplantation costs for eligible ESRD patients, but only covers immunosuppressant drugs for 36 months following a transplant. Many dialysis patients find this policy a barrier to seeking a kidney transplant. The DPC Board of Directors recently passed a new policy in support of Immunosuppressant Drug Coverage for the life of a kidney transplant.

Congress has introduced a bill to provide kidney transplant patients with life time immunosuppressant drug coverage: The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2009 (S 565 HR 1458). Extending the current benefit beyond 36 months would result in a net savings to Medicare, provide transplantation as an affordable option to more patients, and ensure that those individuals in whom Medicare has invested can continue to receive the necessary drugs to reduce their chance of rejection.

Please join DPC in supporting the extension of Medicare coverage for immunosuppressant medications. Contact your members of Congress and ask them to support the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2009!"

This is an opportunity to have a say and support this important legislation. Please consider this opportunity to let your legislators know what YOU think. Of course, I am supporting the legislation because it impacts me personally.

361) Returning to Work

April 27, 2009
Thuesday

Morning: Went in for Labs this morning... on time... but had to wait for awhile and didn't get home to take 8 am meds til 8:30. Today I am returning to work again. Just preparing for work took longer than I expected, starting last Friday, when I stopped by the office to talk to folks about preparing for my return. Fortunately we have several germ-o-phobes in the office who agreed to everything I am saying and offered to help. It is very helpful to have employers' assistance in ensuring a work environment that is as antiseptic as possible when a transplant recipient returns to their workplace. This is the email that our ED sent out:
Three major points:

1. Jack will assume responsibility for keeping his hands clean; that is number one – minimizes transmission of anything

2. Don’t even think about coming to work sick. If you feel good enough to do some work at home, with your supervisor’s approval you can arrange to do work at home – of course that depends on having a computer with which you can access your work computer.

3. If you feel you may be not sick but still possibly carrying around some unwelcome germs (not sure if you have a cold or allergies, for example) – let Jack know to stay away from you, and be EXTRA cautious about limiting your ability to spread germs.

Then there are a variety of precautions we should all keep in mind:

· Wash hands at least after using the bathroom and before eating; Faith will post info about this in bathrooms.

· Use Lysol spray to clean off door knobs, faucets, light switches, toilet flush handle, and other key places that everyone has to touch.

· Don’t use Jack’s desk, computer, phone, etc.; he will keep his office a sanitized area.

· Keep conference room tables sanitized; perhaps use this as area to meet with Jack.

Faith is making some hand-washing posters for the two bathrooms.

My own preparation this morning included lists of things to take (pee bottle, chart, and several items I might need) and I finally get to the office about 9:45 or so. The day was fairly normal and I felt like I was getting back into the stream, so to speak; catching up on projects, updating my time sheet, and getting my future appointments, etc. on the calendar. Met with Kim and Theresa about status of projects and with Christine about the Legislature and the only real difference I notice is using the bathroom five times in 5 hours, versus using it about once a week before the arrival of Mordechia.

The advice I have for people going back to work is... "Go slow to get going". Today I work about 5 to 6 hours and intend to build upon that as I go.

Call from Bernadette: Back at home, late afternoon... Bernadette calls and reports that my labs were "perfect"... therefore, no changes in meds this week... and my creatinine was 1.0!
I had emailed her about concerns about getting back out on the road and training and she discussed them with Dr. Lewis: "You can do anything you want to do. Take a mask if you fly and if you are sitting next to a cougher, put the mask on. Don't put the mask on before getting on board... they might think you're a terrorist. Otherwise, avoid shaking hands and don't get too close to people."

So it goes... getting back into the river of work.

Note: Katie's 20th birthday is today... We had the kids over for a nice steak dinner on Sunday night and Katie brought her friend Jenna. Nice time.

360) Dealing Positively with "Post Transplant Depression"

April 23, 2009
Thursday

Evening: So... Bernadette calls and asks if I went to have blood drawn twice... and I say, "Well, yes... Peggy called me and asked me to come back and said she needed to re-draw... etc. etc." and Bernadette responded with an AHA!... cause my cyclosporine levels were at the top of the curve, not the bottom like she expected. I apologized for Peggy's mistake and got the impression that Bernadette accepts that these things happen cause we ARE all human... and I do have labs again next Tuesday... so, unless the Doc has a problem... we just go onward thru the fog.

And, I might not have even blogged these developments cause I am trying to report the silver linings more that the storm clouds.

However, another darkening cloud is worth mentioning at this point, based on a conversation I had yesterday with Heather T, another PKD blogger from way back (see comments on Post #359 and her post, entitled "Hey Jack"). Serendipitously, I had noticed her visit to my blog thru Feedjit and clicked on her blog and read the following:

"...don't be surprised if you become depressed after surgery. I was depressed, but not until about 3 weeks out. After my family left and my husband went back to work. At the time, I thought I was just "enjoying" my time alone and away from work. But now (months later) I realize I was depressed and avoiding most all tasks."*

These descriptions reframed some growing feelings / thoughts I had been having for the past few days (that I had framed as "tired", "lazy", "wishing I was retired (like Thomas in his PJ's)", "wishing I could be at home all the time (the crab in my shell metaphor)", and I had hallucinated that it was probably some post-surgery depression rearing it's ugly head.

Post Kidney Transplant Depression: This topic has quite a few resources on Google, but most are people's stories and complaints. I did find one study on depression 1 to 3 years post transplant and the results being related to "poor outcome", but this doesn't really relate to the issues of depression in the first year.

One study by Gill and colleagues, entitled Cognitive outcome following kidney transplantatiion, published in Nephrology Dialysis Transplantion (2008 23(3):1032-1038) states in the discussion section:
"In summary, the current findings suggest that memory and executive functioning difficulties may be present following successful kidney transplation. Given the fact that reduced cognitive performance (memory?) has been identified in kidney TX recipients, it will be paramount to elucidate the consequences in terms of medication adherence, ability to return to work and other functional outcomes (anxiety/depression?). Such research may prove invaluable in assessing the relevance of neuro-psychological findings to everyday living, and further highlight the potential benefits of formal evaluation of cognition to develop and implement treatment strategies throughout the course of kidney disease."
Butler, et. al. found in a 2004 article on risk factors for non-adherence to immunosuppressants that "Although not related to adherence, depression was common. Depression has been associated with reduced quality of life and increased morbidity. Thus clinicians should be alert to the presence of depression post-transplantation. Therapeutic interventions and antidepressant medication to improve the emotional state of transplant recipients are important independently of affecting adherence." However, this study was completed 6 to 63 months post transplant, although it suggests that the literature finds depression as a "common" post-transplant concern. There are also other evidence-informed articles referenced in the above two for any of you who want to delve further into this topic area. Find the Nephrology, Dialysis, Transplantation Journal online and you will find other free articles you can peruse.

Another Frame from Social Constructionism: You see, over the years I have taken on a strengths-based view in which we don't really believe in "depression". When we remove the diagnostic trappings (which don't really have much of an evidence base) "depression" is just another label that therapists use to describe treatments (in the "disease model") for a certain group of people. Many psychiatric diagnoses are not always diseases and can be treated with medical regimens AND the research is present to show that the practitioners "treating" any one diagnosis use so many different treatment regimens that are effective that the whole question of the rational, medical assessment / diagnosis / treatment paradigm basically breaks down. According to the research-informed folks at the Institute for the Study of Therapeutic Change this has been known for some time --->"The research is clear at least: psychiatric diagnosis as codified in the DSM is unreliable. In this study, researchers investigated degree of agreement among psychiatrists in an emergency service setting. Once again, they found appallingly low agreement both in terms of diagnosis and treatment recommendations. Indeed, the particular diagnosis and treatment recommendation... depended more on who was doing the diagnosing than on the particulars of the clinical situation. Isn't it time to bag the DSM?"

So, when we look from the lens of post-modernism, there are many truths... all with small "t"s rather than one Truth with a capitol "T". And, at least in the realm of depression, the symptoms do not prescribe the treatments. We counselors ask "depressed" people to DO SOMETHING. Wash your window. Take a trip. Change the scenery. Consider what you want instead of depression. In fact, how do you know you're depressed? What are you doing? What are you saying to yourself? In what tone are you saying it? Let's break it down...

Depressed behavior = "I walk around not wanting to do anything, especially chores.. I would rather listen to KUT or watch TV than DO anything. I waste time on the web or sitting on the back porch or playing with the dog (and washing my hands afterwards)"

Depressed thoughts = "I think about how my big a change my life has taken and I am tired of everything... I don't want to go back to work now... too many stresses... I wish I had stayed with the state and retired by now. I am healing well, and still don't feel Good! I've hit the Wall! I HATE washing my hands so often!"

Depressed feelings = "I feel tired... like I must have a "brain cloud", or my own word for it; fuzzy brain...

What do I want instead? "Hummmm... I want to be ready to re-enter the world without worry. I want energy back. I want to be Happy with all the blessings I already HAVE and not worry about what I don't have! I want to get back to living from my heart."

Is some of that already happening? "Yes. 1) Planning re-entry with Kimbo. 2) Doing some constructive activity [Taking a walk!] every day. 3) Commenting on my Blessings in the Present, when I notice them. 4) Giving from my heart in small ways.

If a Miracle occurred while I am asleep, and I had what I wanted, but I didn't know it cause I am asleep, how would I notice it when I woke up in the morning? "I would wake up looking forward to meds and morning procedures on my mind and go downstairs before the girls have left"

What is the first step I could take? "Set my morning alarm at night before going to bed"

What are the absolute smallest things I can do about:
Behavior? "Take a walk"
Thoughts? "Say to myself 'onward thru the fog!'"
Feelings? "Remind my self 'all the blessings already are'"

So, for the formulaic folks out there, it looks kinda like this:

~~~~~~~~~~~~DIFFICULTY~~~~~~~~~~~~GOAL~~~~~~~~~~~~[TASK]

INSTEAD of depressed behavior I want INCREASED ACTIVITY [take a walk]

INSTEAD of depressed thoughts I want INCREASED + SELF TALK [encouragement]

INSTEAD of depressed feelings I want INCREASED REFLECTION [count my blessings]

There is always something we can do to improve our situation and we need to start small, measure our improvement and drop what isn't working like a hot potato, and keep doing more of what works!

359) Lab & Results in ONE day!

April 20, 2009
Monday

Morning: I went to have my labs drawn at S.Austin Hospital this morning, getting there about 7:30 am and running into my buddy Rodney coming out. He shared that he has to go back at 9 and then later at 10 for more blood to check his cyclosporine levels. I get apprehensive about spending my morning going back and forth... and am happy about getting thru the initial administrative procedures in about 10 minutes... they are getting faster and faster and that is good customer service. Rene the Registrar still seems surprised.

Peggy the Phlegbotomist is in her regular cheerful mood and asks where Lizzie is (out to breakfast with a friend) and says I only need two tests today. I ask about coming back and she says, "not on your orders!"
So, I get outa there and back home before 8! WOW... these guys are getting good. I take my meds, eat my Cheerios and MILK & BANANAS, and seem to be getting ready for a day of working on Theresa's RFP, calling our plumber for some adjustments for the new stove, meeting the new janitor (?), maid (?), cleaner guy (?) <-- what do you call a male maid? ...and a supervisory meeting with one of my supervisees to cap off the day. Then in the middle of my hallucinatory imaging the agenda and writing it down... Peggy calls back and asks if I can come back again and give her some more blood. Seems she didn't initial one of the test tubes and the lab won't accept it! Can you believe that? So she is "really sorry" and I say it's okay... I can return... but I have already taken my meds... and she says that is okay as long as I get the blood work soon. I say I'll be right there...

Later: About 4 Bernadette calls and says my blood-work looks good... CBC a little low but all else is good. I tell her about running into Rodney and she quips, "Well; you know we treat you all INDIVIDUALLY, you know..." So it goes on another lab day.

358) Stent Removal

April 20, 2009
Monday

Morning: Liz and I are up bright and early to go in for my stent removal. Up until now the medical team has mentioned "stent removal" and some brief explanations about it, but nothing to write home about. Then it is scheduled a couple weeks ago (at Clinic #3) and Kelly the Nurse calls (on 4/14) to discuss the "procedure" with me on the phone. I somehow know that the stent is in there somewhere between the Mordechia and the Penis keeping the whole works flowing like clockwork... or... like ...the Erie Canal maybe is a better analogy. So Kelly calls and tells me things like; come in two hours before your procedure at 9 to sign in and get all set. They will be deciding then if it'll be general or local anesthesia; to bring my Insurance Cards and Picture ID (let's see, this'll be about the 33rd time for that to be copied...;) and, have nothing to drink or eat for 12 hours before coming in. She finally wants to know if Liz is bringing me, so they know about when I can leave.

Like The Organ Trail describes, there isn't much about Uretral Stent Removal on the web that isn't written for medical folks. I got most of my info from Bernadette and Kelly the Nurse who calls about my pre-procedural procedures... and yet I have found one description on Emory's Transplant Center's website, as follows:

"Ureteral Stent Removal
Most transplant recipients will have a ureteral stent placed as part of their kidney transplant surgery. If you have a stent, you will be informed of this by the transplant team. The urine which is made in your new kidney flows to your bladder through the ureter. The ureter came with the donor kidney and was connected to your bladder with a small incision. The stent is a thin hollow tube which is placed inside the ureter to keep it open and allow the connection to your bladder to heal.

The ureteral stent needs to stay in place for about six weeks after the transplant. By this time, healing will be complete and your stent can be removed. A urologist who works with the transplant team will remove the stent during a brief procedure called a cystoscopy. You will not be put to sleep, and no incision or surgery is needed. A flexible tube (the cystoscope) is inserted into your bladder, and the stent is removed through the cystoscopy tube. You may feel some brief discomfort or pressure. This procedure takes about 30 minutes."

NAMC Day Surgery: So, we arrive at NAMC and we shuffle into the Administrative Sign Up woman, who runs us through the system fairly quickly and then guides us over to the family day surgery waiting room, where we find our transplant buddies, Rodney & Kelly are here too for the same procedure... and they got here at 7. After not too long a wait they take R&K in then pretty soon they take us in. We get our own room and we meet Aaron the Nurse, who is gonna hook me up, take my information about what I'm allergic to (and explain why they do that stuff over and over again... tell stories about how some people have "issues" about being asked the same stuff over and over again...) Aaron is a nice young guy who wants to get a Mustang from the year he was born... 1972 (like Mom's Grande, me thinks) and I share that.
Then Courtney the OR nurse for the top half of me comes in and asks about my questions; explaining that it really takes longer to put me out and get me back than it does to do this "3 minute procedure". I don't really want the details, if you know what I mean. She jokes that today Dr. Lewis told the team, "We're putting all the men completely under (with general anesthesia) and using nothing (maybe just a local?) on the women" Courtney and Liz joke about, "What's this about?... while I lay there imagining the difference. She clarifies that this is NOT like the "hypnotics" I get for a colonoscopy. The Anesthesiologist comes in and I brief him by answering his questions and he seems all business and has some kinda bloodshot eyes and I wonder if my hallucination center is kicking in or if he was out too late... he scoots and Vlad enters and introduces himself as the OR Nurse and tells Lizzie they'll take good care of me. We are on our way.

Lizzie and I kiss goodbye, Courtney says she can visit with Kelly down the hall, and we set out careening thru the corridors to the operating room. I am being rolled by Vlad the Romanian OR Nurse who is charge of my lower half, according to Courtney, and Vlad can relate to Noviski and nods his head and talks in a thick Slavic accent... and he has bright laughing eyes so I'm thinking we are gonna have a great time in the OR.

We roll in and the two nurses busy themselves about and Courtney and I are chatting about my brief career with Gold Cross Ambulance as she is giving me something to relax and I say it was a lonnnng timeeee agooooooo....

....and then I open my eyes and notice a Nigerian Nurse computing something on my left and she looks over and says, "Hello... I am Ann and you are in recovery and all is well..." I reply, "Coffee?" and she laughs and goes off to get some and I call after her "and water too.." I lay back and smile to myself. I am still on the planet!

Actually, this part could be out of order... maybe they roll my back to my Lizzie reading her Philosophy book before I get the coffee.... either way I am happy, and I feel no pain and another milestone is passed.

A little later Ann has me get dressed, sit in a wheelchair and rolls me out into the world for Liz to pick me up in the Sienna and drive on home in the sun. We get T-Clouds and a movie for the afternoon (cause I can't be left alone, according to my Release Rules) and we are happy and I immediately fall asleep on the couch and spend the afternoon in and out of consciousness. What fun for Liz.

357) Clinic #4~ The Good, The Bad, and The Anxiety Provoking

April 14, 2009
Tuesday

Morning: Half way over to S. Austin Hospital for Express Lab, I remember that I could've driven myself and foolishly mention it to my sleepy chauffeur and she rolls her eyes and wishes we'd remembered that 15 minutes ago...

Things went smoothly and quickly again at the Lab and we were outa there and back home by 7:40 am!

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April 15, 2009
Wednesday:

Morning: Today was too busy for me! In the morning, after taking my morning meds and documenting everything in my manual (which I now can do in just 15 minutes!), Orlando came over to go with me to pick up two tables from Thomas to give to Kim for some art booth at Earth Day on Saturday... put them in my garage and then at 10 meet here with a supervisee, and then one conference call and one conference training (which I must have miss timed since I never found it.

Clinic Appointment: Since I can drive again (yahoo!) Liz and I met up at the Transplant Clinic at NAMC for clinic. Bernadette quickly did the initial screening, weighing, etc. without BP and temp, and got me into a treatment room. Dr. Lewis came in fairly quickly and quipped something like, "Well, that is one kick-ass kidney!" He went on to point out some details from my last labs:

Creatinine is 1.1 (excellent);
Potassium (excellent); Phosphorous (good);
LDL Colesterol (a little high @ 229: norm is <200);
Triglycerides (off the chart! 502 and the norm is <180)... Doc L is adding Crestor (a statin) in a low dosage to my list of meds to be taken at night to lower the cholesterol & triglycerides... and, this has a chance of interacting with the anti-rejection meds, so I should watch for any muscle pain and call if I get some.
My Calcium is still a bit high (71.7) and due to my parathyroid having a mind of it's own... called "over-active parathyroid". To treat the high Calcium he is re-adding some Sensipar back to my med menu (@ 30 mg... which allows us to use our nifty new pill cutter cause we only have 60's). He is adding this for a short time to see if makes a difference... and, he mentioned that "we could go in and snip out" some of the glands in the parathyroid. "Oh boy!" me thinks! (see Post #10, 5/12/06*).

He continues that he talked to a Lung Specialist (I like the fact that Lewis calls experts when he needs specialized information) and they recommended that I not use the Pentamidine (in review, I guess I didn't document that terrible treatment that reminded my of the severe asthma I had as a child... and took an hour or so to get over) that gave me the asthma-like attack in the hospital. Instead he is going to add a pill for me two times a week (Monday and Thursday) at night for only 3 months (Dapsone).

After this report, Dr Lewis checks my healing incision, saying it looks great, listens to my chest and heart with no real comment, and while on the table I ask him about my painful scrotum and rash so he checks that out too. In my scrotum he says I have some testicular hydrocele** which I can put up with, or if, over time, it keeps bothering me, or if I find it to be unattractive, we can do a little surgery (These surgeons!) to drain it. I tell him that I have been using Caldesene and that works much better than the Hydrocortisone that Bernadette recommended. He says that the rash is a fungus amongus and he adds Tinactin spray to my list of meds. It's like athlete's foot of the crotch...ewww***

In answer to my/our listed questions, Dr Lewis responded:

1. Wearing 34" Levi's again --> "Don't try it for a month or so more. You may have to get used to having a bigger waist, like all the rest of us."
2. Type of diabetes testing meter: prescription for more lancettes --> "No. You don't need that... we are watching your gluclose and it is fine."
3. Raw scrotum (see above)
4. Short term memory --> I reported on my 30 second to several hour memory loss and several anecdotes of this, as well as nurses reports of having confusion and memory problems for months after surgery, as well as Liz's story of her friend with the hip replacement having memory problems even now, four months out of her surgers. --> "That is not my experience (shaking his head back and forth)... that is 'outside two standards of deviation from the mean (95%)'!" (thats the 5% in the tails of the curve) He goes on to question my pre-surgery memory problems, which I call ADD, although, in answer to his questions, I have never been diagnosed as ADD profes- sionally. When I was in school it was called "lazy", "daydreaming", and "not paying attention". As the ADHD and ADD diagnoses got developed I was working with youth and had plenty of opportunities to "self diagnose" myself. His response: "You have a lot on your plate right now and I recommend you do what you have always done to manage this. It is NOT normal, and in all the ways I look at patients, you seem to be doing excellently from my point of view. If is still problematic when you get 6 months to a year into this, then we should look at referrals for neurological evals."

He concluded, "...we are gonna add these new meds and check them closely... Labs more often and I'll see you again in May.", and he left to report to Bernadette so she could type up my new Transplant Medication Sheet. One of the things I really like about this clinic is they give you a printed up sheet of med changes at the end, before we leave.

I concluded after he left that on the meds review: the score is + 4, - 0, which doesn't seem too cool. But even more bothering... my memory is not about the Transplant! Something else to WORRY about... and boy, I will probably go nuts about this one; unless I am lucky enough to forget it as soon as we walk out into the sunlight... I hope! I know I will now redo my efforts and thinking without FUZZ... so it goes. "its always something"! as Roseanne Roseannadanna used to say!

Notes:
*Introduction to Parathyroid Glands, online at Parathyroid.com, http://www.parathyroid.com/parathyroid.htm
**Hydrocele Testes, online at Wikipedia, http://en.wikipedia.org/wiki/Hydrocele_testis
***From Lemonick, M.D, (May, 2007) Why we get disgusted. TIME Magazine, available online at http://www.time.com/time/magazine/article/0,9171,1625167,00.html

356) Clinic # 3

April 8, 2009
Wednesday

Morning: Liz doesn't feel good again today and now she thinks it might not be "allergies" so she calls ARC and gets an appoint NOW and rushes off to see a doctor. She returns with the diagnosis: a cold. She told the doc about our situation and she told her that it is NOT an air-born viruse... and that Liz could keep from spreading it with OCDish hand washing for the next five days or so. So she is coming home all sad and not feeling good either... pobrecita!

TNOYS: Today is Clinic Day and we head out a little early so I can stop by the office to get my Time Design a Children in Schools journal, and a book for one of my supervisees. I am in and outa there without saying anything but a wave to everyone I see... 'cept Kim, who happens to be in the hall while I am there. We talk briefly and I am outa there...

NAMC: We arrive at the loading desk or registration desk... and are immediately sent back to the Clinic waiting room, where Maxine is waiting for us to escort us back to the Clinic. Turns out Dr. Lewis has been called away to Chi-town for a family matter and Bernadette the Supervisor is running the clinic today. Maxine puts me in a treatment room, weighs, pulses, and checks my temp and BP and I wait for a few minutes for Bernadette. They ask Lizzie when we first come in to sit in the hall with her cold.

Bernadette starts by telling me that she has taken my Thank you card around to all the places that had something to do with me and that she really liked the message of the card and the way I said thanks. The she asks the protocol of questions that usually is used to prep the doc... and she focuses on the pain (a number of questions about when it comes on, descriptions of the pain, scaling of the pain, and she agrees that it seems like acceptable pain). Then I get off the table and down into a chair across from her and open up my manual and she wants to see my meds sheet first: this is leading somewhere, I hallucinate ~ and she pulls out her file copy of the meds sheet and asks me to go over mine as she follows on hers. When I get to #2 on the list; Neoral 25 mg. at nite and say "up again to 2", an she asks, and I reply, "where did that come from?""Lets see here, we upped that based on a call from you all on 4/1..." and then her mood turned very serious and she replied, "well, your level on the last labs was over the limit... up to 280 (?)... its supposed to be around 1 (hundred and something... short term memory lapse here). This is (bad),and we'll have to call Dr. Lewis to see what he wants to do... I imagine he'll lower it significantly... Don't take ANY until I call you later today after talking to Dr. Lewis!" We went back and forth about how she doesn't have any documentation in her file for a 4/1call to go back to 2 and I counter with the fact that we wouldn't write something in and/or change the meds unless someone told us to, and she responded that only she a Maxine make these calls and she usually listens in when Maxine makes the calls... until we just agree to move on through the fog.

Bernadette checks my incision and remarks that it looks good, listens to my lungs and heart, has me hop back on the table and pushes and pokes my tummy and then holds out a hand to help me back into sitting position.

Its my turn for questions and I have some listed: 1) washing the incision... all okay now; 2) Worries about sugar... she says my blood sugar reading from the labs is "normal" if a little high... and agrees that if I am gonna be eating sugar we do need to get me some more lancettes and she'll tell doc if I call and leave her a message about the type of pricker I have. 3) Liz's cold... be careful and wash hands more than usual; 4) rash in certain unmentionable places... try hydrocortisone ointment.

Thats it for today. We schedule another Labs for next week and another Clinic for the day after Labs. We briefly discuss hers and my talks with South Austin Hospital Express Labs procedures and I report that the staff over there are reporting changes happening and Rene's statement that all the orders have been available when we Post Transplant People get there. Alright! Bernadette tells me that as of today I can drive again! It's been a month since transplant on March 9th! WOW already a month!

So it goes in the world of post kidney transplants.
Onward thru the Fog!

355) Lab Day

April 7, 2009
Tuesday

S. Austin Express Lab: This morning Renee at the Registration Desk said she has noticed that for the last few days all her Lab Orders for Post Transplant folks have been sent to her and she has been able to print them for the patients coming in for Express Lab! She is surprised. And we registered with Brianna again and she notified us that they are making some changes in the registration process that should make it much simpler, like scanning our cards so we don't have to show them every time, as well as getting some of our info from the computer instead of asking all those questions every week when we come in. So, as a result today's labs took only about 30 minutes and we were home again in time to take my morning meds by 8 am.

I can't help but hallucinate that these changes may have been generated in part by my complaint letter, given what Yvette said in her letter back to me, which stated, in parts, "...it should only take a couple of minutes to verify that it (the info already in the computer from our last visit) is still correct"; and "we make every effort to be friendly, professional, and prompt..."; and "...thank you for contacting us... This will allow us to further improve our services and provide excellent care..." Lizzie and I agreed that this might deserve some positive reinforcement if it continues for the next few weeks.

Today:

• I am feeling pretty good... I'd say 8 on a 10 point scale!
• Feel back on track re meds taking on time,
  
• I'm taking in an average of 75 ounces of liquid; or 2254.6 ml (BTW---> ml and cc are the same thing*) per day. Another way of looking at it is that I have met the goal I will have later )"on down the road" according to Bernadette the Post Transplant Coordinator in Blog # 346) 14 out of 24 days, or 58% of the time!
• No real pain aside from nagging aches... so I'm not taking too many pain meds.
• My pee is getting lighter and lighter (sounds like an affirmation, doesn't it?)
• I am ready for my next Post Transplant Clinic, tomorrow at one.

Notes:
* They are both measurements related to volume. The metric system has been coordinated so that size measurements are easily compared to volume measurements. The amount of water (or other liquid) that would fill one cubic centimeter will be the same as one milliliter.
Ref:---> http://wiki.answers.com/Q/What_is_the_difference_between_cc_and_ml
~ and ~
* Cc´s & Ml´s & Teaspoonfuls and Tablespoonfuls...Liquids are measured in teaspoonfuls, tablespoonfuls, ml´s, cc´s , ounces, quarts and gallons.
1 cc is equivalent to 1 ml
1 teaspoonful is equivalent to 5 ml or cc
3 teaspoonfuls are equivalent to 1 tablespoonful
1 tablespoonful is equivalent to 15 ml or cc
1 ounce is equivalent to 30 ml or cc
16 ounces are equivalent to 1 pint
2 pints are 1 quart and 4 quarts are 1 gallon
Ref:--->http://prescription.lifetips.com/tip/61519/basic-calculations/liquids/cc-s-ml-s-teaspoonfuls-and-tablespoonfuls.html

354) Second Saturday Home! Yahoo!

April 4, 2009
Saturday

Morning: Of note, Maxine the LVN from the Post Transplant Clinic called Friday night to tell me that Dr. Lewis said to drop my Myfortic down to 1 at night. I asked her what my Creatinine was last labs and she said, 1.1 (dropped finally from 1.3)!

Noon: BTW~ every time I have had labs the dosages of these meds has changed, based on the goal of keeping the immunosuppressives and anti-rejection meds in a very defined window of functioning, diagrammed as as follows:For those of you who are interested my current meds regimen is listed below:

1. Neoral---------100 mg. (1) @ 8 am & 8 pm. [See #2 below]
   
2. Neoral----------25 mg. (1) @ 8 am & 8 pm- [a Cyclosporine; immunosuppressant that decreases the body's normal immune response by changing the function or the number of white blood cells or both. These drugs prevent the body from rejecting the new kidney and also decrease the body's defense against infections. These are known in the biz as "the stinky med" for their odd smell.] and are metabolized like the graph above, meaning they have to be taken exactly 12 hours apart!
   
3. Myfortic-------180 mg. (2) @ 8 am; (1) @ 8 pm- [a Mycophenolate: Myfortic is used to prevent and treat rejection that is also taken every 12 hours to stay within the kind of window (levels) as described above. This one also slows the maturing of white blood cells which keeps them from attacking the new kidney; however, it too increases the possibility of infection (one reason I now wash my hands after every time I pee or shake hands with a stranger and before I prepare or eat food. Since Mordicai came I have probably washed my hands-more than during all of the past 60 year altogether!) Some things I have to watch for with Myfortic include altered blood sugar and-increased sensitivity to my old friend, the Sun by wearing sunscreen always out in the great outdoors!]
4. Valcyte--------450 mg. (1) every other day @ 8 am [This important med is anti-viral that I take for only 4 to 5 months post transplant. It prevents me from getting a viral infection that normally doesn't bother people; in fact, it is present in a large portion of the "healthy" population... and another reason all my friends must wash their hands before coming into "my space". From Wikepedia, for us non-medical humans, I quote (with some edits...) ---> "Cytomegalovirus (CMV) is a viral genus of the Herpesviruses group... CMV belongs to the Betahepesvirinae subfamily... HCMV infections are frequently associated with salivary glands, though they may be found throughout the body. HCMV infection can also be life threatening for patients who are immunocompromised (e.g. patients with HIV and organ transplant recipients).HCMV is found throughout all geographic locations and socioeconomic groups, and infects between 50% and 80% of adults in the United States as indicated by the presence of antibodies in much of the general population. Seroprevalence is age-dependent: 58.9% of individuals aged 6 and older are infected with CMV while 90.8% of individuals aged 80 and older are positive for HCMV."
5. Norvasc---------10 mg. (1/2) @ 8 am-[A calcium channel blocker, Norvasc is a blood pressure med I was using during the early years of dialysis, and is Dr. Lewis' choice for post transplantation. This is one of the meds that keeps me from enjoying grapefruit.]
6. Levothyroxin--.25 mg. (1) @ 8 am-[Synthroid: for my hypothriodism... I've continued for years now]
7. Aspirin----------81 mg. (1) @ 8 am ~ ON HOLD --[On hold because of my bloody noses due to HHT]
8. Senokot-----------------(1-2) daily as needed for constipation [recommend taking now]
9. Renaltab+ZN------------(1) @ 8 am-[Using up my dialysis vitamins before starting the Rotralcol]
10. Now blank on the list (meds are stored by number)
11. Paroxetine-----20 mg. (1) @ 8 am-[Usually used for depression but in my case used for anxiety]
12. Clarinex----------5 mg. (1) during cedar season--
13. Darvocet-N----100 mg. (1) every 6 hours as needed for pain [A pretty mellow pain pill, and it works just fine for my level of pain... I'm currently using it about every other night... and it works great to quell the RLS too. Supposedly this one is about half the strength of a Vicodin, which I am allergic to.]
14. Tylenol--------500 mg. (1) every 4 hours as needed for pain
15. Neosynephine as needed for nosebleeds [Which I also have been using for years for my HHT: if I spray right away the blood stops!]
16. Pentamidine--300 mg.----every month x 5, next due in mid April [I did not respond well to this treatment in the hospital! Don't know what we'll do in mid April! YIKES]

So, there you have it. While listening to NPR while blogging this, I hear it is the anniversary of MLK's assassination and remember all the strife of that dark era. Also hear a thanks to Thomas & Gail for contributing. We did on Friday.

On another note, the Kick Kats won their game this morning and Shayna scored on a close-in pass from Chelsea, who was sweeping in on the left side of the goal... being confronted by the goalie... and she passed it over to Shayna on the right side... who BOOTED it in with a strong kick to the center of the goal space. I wish I'd been there! Hopefully some parent got a picture of it.

And, of course, we have the FINAL FOUR tonight... my favorite now is Michigan State... my dad's alma mater. But Johnny is foregoing the final 4 for the Snooks Chilifest, and Katie is there with her brother fraternity hosting a chili booth of some sort. They were drawn there no doubt by Robert Earl Keen, Cross Canadian Ragweed, and Pat Green! Quite a lineup!

So it goes on a Saturday without dialysis!

Notes: Red is for the new changes as of 4/8 @ Clinic #3

353) Of Labs, Lists, and Candor

April 1, 2009
Wednesday

S. Austin Express Lab: We get up on time, get Shayna's breakfast and are off like the wind to S. Austin for our REAL lab appointment. All goes like clockwork this morning: Rena the Receptionist now knows my name and sets me up to talk to Sharon the Registrar. I've brought last week's paperwork so Sharon has an easier time (working from the answers to the last Medicare Questionnaire) registering us and getting us over to the Express Lab, where it is in and out with Peggy the Lab Tech. We get home by 10 after 8 and I immediately take my meds... only 15 minutes late! It is like running a race to get to the finish line as close to 8 as possible.

Home: Today I feel less tired than the last few days, when I have napped off and on all day.
So today it's back to the Mac! Today's chores include:

• Finding out about why I got a nice letter requesting $104 from the Driver Responsibility Program (DRP) saying that I got 6 points in the last time period and now have to pay to keep my driver's license. What? Well, it seems like this new program evaluates your driving record and assesses point and then translates those points into dollars and sends you a bill... which if you don't pay, they simple revoke your license... making it really important to respond to. So, I call the DRP to ask what my points are connected to. I recall only two tickets since I can remember... which would be 4 points and not warrant paying anything. Of course the DRP cannot answer my questions cause they don't know why I owe... just that I owe. Sounds a bit like the old USSR, doesn't it? I have to call the DPS drivers records to find out why I owe. And, of course, on the completely coded tele-answering service at DPS it tells me very gently to call the DRP for any questions about the DRP. I wait thru the list and stay on the line until a person comes on the line and then ask my question. Well, they can't answer it, I must speak to the people in Driver's Records and they connect me. The message politely states that due to the volume of other citizens on the line, I may have to wait thru about 4 or 5 of the tape loops advertising all DPS services, their phone numbers and internet addresses... which takes 20 minutes... and then, all of a sudden, Kurt comes on the line and I ask, "If I complete the online driver's record form to get a copy of my driver's record, will it have the associated points I need to figure out why I have 6 points?" Kurt assures me that the form will, indeed have that information and how I can go about getting the form completed and submitted online! Great. As I am thanking Kurt for the clear info he is giving me, I add that I am perplexed because I only remember two tickets... one in Colorado County and one in my child's school zone... where I saw the officer, glanced at my speedometer and saw I was going the speed limit... and he waved me over saying I was going 3 mph above the speed limit and speeding up. At hearing this, Kurt replied, "What about the one in Balk City?" "What? That was years ago..." I say and he informs me that there is a three year window they look at and that one is just about to expire since at the end of this month it'll be three years. "Okay, ya got me. I guess I don't need to get the record by sending in $6 then, do I?" "I guess not", he replies and so I hang up, go to the online payment, pay my surcharge to drive in Texas, and call it a chore completed.
• Take a picture of me to document my beard and stach growth. I have never been able to grow a real one... but now am on Neural, a immunosuppressant, and it promotes hair growth! So, as I always try to find the golden lining in every cloud (these immunosuppressants can be very worrisome, based on the list in my Patient Manual) I find that I have the opportunity for the first time in life to grow more of a beard. I ask Lizzie to take my picture to compare with the first one Shayna took and I can see a real growth difference.
• I plan to start constructing TNOY'S annual Membership Survey on Survey Monkey and get Faith to make a PDF of my notes of the last meeting re: the Survey and email them to me and review the notes and begin making the intro and survey questions for Theresa to review before the Board meeting, hopefully. Right in the middle of That Kim calls from work to describe a new procedure down from the state for our STAR providers and hearing about it makes me CRAZY and FURIOUS, so I must stop everything and send TNOYS an email about handling this idiocy immediately! Takes me over an hour to calm down... and I won't go into details here cause it would just get me going again.
  
• Of course, I have to chart my BP, temp., liquid intake and outgo, etc. etc.
• And read write up this post,
• And check my Facebook, Email, Work email, and snail mail,
• Take a nap,
• Respond to Nathan's comment on my blog (already done)
• Let the dog in and out countless times, whenever she sees some threat to our property...
• And jump up to pee every hour... it has gotten to be less with more in each contribution, in case you're wondering. Liz's friend and Professorial Diana from the school, wrote in a card, "...(appreciate) your blog, especially your candor."
• Must write a Thank You Card to Diana. It will say something like: Well, you can count on me for the candor (I have practically no boundaries about this stuff... and BTW thanks so much for the Chicken Cacciatore: è stato veramente delizioso, sufficiente per due pasti, e anche Shayna loved it. Grazie molto!
• Still must write the right Thank You Card to the nurses & techs on NAMC, ICU & 4N ~ you know who you are. I am just waiting for the right inspiration to match all of your motivation and devotion to serve us patients... Really!
  
• And now, get back to constructing the Survey Monkey Survey.
• But first I think a little nap is in order...

Later: Maxine the Post Transplant Clinic LVN called to report on my Lab work for today, saying it all "looks good", and I should re-add the second Neural to my night-time regimen. I guess I expected more... like my creatinine level, etc., but I didn't ask and she didn't tell. Next time I will ask her for more details. So it goes on a Wednesday Lab Day.