Lab Call: Tonite Bernadette called me at work, at home, and then, later again, at home... missing me the first few times. She called to say my labs were perfect! ...couldn't be any better. No changes in meds! My creatinine is 1.0 and I am a "clean machine" to quote my old buddy Dale from EP. Yahooooo
I shared with Bernadette that I like a professional that goes outa her way to give out good new as well as the bad.... and she replied (or I hallucinated that she replied) something to the effect that is her favorite type of news to report.
Transplant Report: Last Tuesday, the 26th was lab day and it went off without a hitch. The regimen seems kinda boring to me right now: 5 Labs and an Appointment... what can I say about that? Maybe at some point in this post I'll pontificate about staying out of the dirt and how difficult that is.
Work Report: I did a full 8-hour day at work on Tuesday, after Labs! First full day since returning to work on April 23 or there-abouts. Mostly I take my time in the morning and do my meds and charting regimen, slowly wake up and get to the office sometime between 9 and 10. I stay until I am tired, which has been longer and longer each week. Plus things are getting busy at the office so I am probably gonna be at almost full time this next week. Of note, Christina set us up with a TNOYS Facebook so you can now find us on Facebook by clicking Texas Network of Youth Services and you can become our "fan" and even send a contribution in these dour times. We have been working on submitting grant applications to solidify our place in the non-profit world of youth services.
The office has continued to do a great job of keeping the place antiseptic... with anti-bacterial soap and posters in the rest rooms about washing your hands as long as it takes to sing a verse of "Happy Birthday to You"; and bottles of hand sanitizer in every public space.
The Dirt on Gardening: I have been trying to locate all the specs on why I shouldn't garden for the first year or so, post transplant (<-- like Bernadette said). Not much came up in my Google search over the last hour or so. I did post a question on the NKF Listserve for transplantees. Basically, as I get it, there are all kinds of microbes, bird poop, animal poop, mold spores, and 'all kind of mean and nasty things' in the dirt and my propensity, at this point in my acceptance of Mordechai the Miracle Kidney it is still very tenuous in the infection / rejection department... and, therefore digging, potting, planting, and such are not appropriate hobbies for me. DRAT! I have that itch every weekend to get out there and do yard work. Bernadette suggests that if the little devil on my right shoulder makes me, I should wear double gloves (surgical under gardening) a mask, and mega sunscreen. Oh yeah... the sun is not my friend either.
So, yesterday, about the crack of noon, when Shayna rolled out, we got to work on the front yard's first edging and mowing and clipping and sweeping, it was Shayna the Yard Girl's edging and mowing debut, with Lizzie the Helper sweeping. I was relegated to some distance trimming (20" up from the business end of the loppers), and sharpening the cutting edges of the edger, lawnmower blades, and the loppers. This is Shayna's first time edging and mowing and it took her some time to learn edging. She stuck it out however, and did an adequate job. The mowing was easier for her once I showed her the tricks of electric lawn mowing and she did a good job with that!
This is also the first weekend of the Kerrville Folk Festival and WE are NOT there... too much Dirt and People for me to get in the middle of this year. Another DRAT. And, for the first time ever, some of our friends are sending phone pics and notes via Facebook and I can't figure out if that makes it worse or better! I love hearing from them and seeing their pics.... and, it reminds me and makes me miss being there. For example, my friend Andrea posted, "(I'm)... slightly surprised to find drama in Forest Lawn"... making me very curious... Forest Lawn is the staff campground, where there is supposed to be QUIET and no drama. Lizzie and Shayna are going the next two weekends, so I'll be home alone to work on projects, etc.
So, instead of sitting around moping all weekend, Steve and Mary Lou had their once-every-so-often Memorial Day Party & BBQ* and invited us, Kim, David & Little Emma, and several other families with kids. It has been raining off and on all weekend (traditionally the rainiest weekend of the year in Austin) and yet the skies cleared before the get-together) and I got to slather myself with sun screen! The food and company was good and we got home early too.
So, today is quiet and restful. Have a good Memorial Day!
* Instead of uploading pics here, I am experimenting with a link to them on Shutterfly!
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.
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
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 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
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.
* Quote from Robert Burns retrieved online from Robert Burns Country.
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.