403) NKF Email on "bundling" dialysis services

September 10, 2010
Friday

I received this email today and want to share with all readers:

Dear NKF Patient and Family Council Members:
By now, many of you have heard about the Centers for Medicare and Medicaid Services (CMS) new rules for payment and delivery of dialysis, which were announced in July, 2010. To help you and your families better understand these new rules, which are often referred to as "bundling" of dialysis services, and how they may affect you, the National Kidney Foundation had developed a "question and answer" resource. This information is available to you on the NKF's "Kidney Drug Coverage" website at: www.kidneydrugcoverage.org/BundlingQnA.html. Please read through it and feel free to discuss with your families, other patients and with your healthcare team at your dialysis center. We will continue to provide you with "patient-friendly" information about this subject as it becomes available.

Casey Greenwood LMSW

Patient Services Director

National Kidney Foundation

30 E. 33rd St.

New York, NY 10016

Ph: 212-889-2210 ext. 144

Fax: 212-689-9261

www.kidney.org

If you or your loved one have chronic kidney disease or are on dialysis, you are not alone. For information and support from other people like you, join the National Kidney Foundation's Patient and Family Council at http://www.kidney.org/patients/pfc/index.cfm

402) Hyper-Parathyroid Consult Results

September 9, 2010
Thursday

Several evenings ago, Bernadette called to report that both my virus tests were negative, so I do not have Epstein-Barr or the other unnamed virus that are frequent in post transplant folks. Good news, we all agree.

This morning Liz and I went to meet with Dr. Paul Moore to find out the results of his analysis of my hyper-parathyroid tests (click 'hyper-thyroid' for complete info on this disease & see post # 400). His nurse, Nancy, came in and weighed me and got my BP (180 lbs! 140/60 BP). Dr. Moore came in, introduced himself to Liz, and began his review of my testing, giving me the tests results and explaining what they mean. Liz scooted over so she could see to.

First, the results of the blood work on the Lab Report, as follows:
PTH Intact ~ [Normal = 12 - 88]. Mine is 226 pg/mt. <-- "Way too high." Since I am taking synthroid, I should cut back on that... "take one less per week".
TSH ~ [Normal = 0.44 - 4.37]. Mine is "too Low" at 0.11 uIU/ML <-- I have no idea what these numbers and letters mean.
Calcium ~ [Normal = 8.7 - 10.0]. Mine is too high at 11.2 mg/dl.

Dr. Moore explained what these all mean. My left right parathyroid "...is way over producing calcium... sucking it outa my bones..." which has caused the other parathyroid glands to "...go to sleep..." and lay dormant. The over calcium production is not being corrected by my Sensipar.

On the second sheet, the Imaging Report (gamma camera) the lower right side lobe is enlarged... Dr. Moore poked me gently right there to show us where the lobe is. Both this scan and the ultrasound (third page) show that this lobe is enlarged and has "increased persistent activity", meaning it is working too hard.

All of this suggests a surgery to take the overworking lobe out. According to Dr. Moore, taking it out should "... awaken the other lobes to start functioning normally." (<-- I hope). I asked Dr. Moore about what the symptoms of what these tests would be and he replied, "the textbook answer would be this would lead to fatigue, stomach upset, and raised BP". AHA!! I got dem things these days!

So, here is the plan. These reports and Dr. Moore's recommendations sent to Dr. Lewis and Dr. Krienke. We stabilize the parathyroid by lowering the synthroid, Dr. Lewis refers me to one of his group of surgeons he works with, and we schedule surgery. One week after surgery, Dr. Moore wants lab work and wants to see me again.

Lizzie and I left Dr. Moore's and picked up Shayna to go to Rosh Hashanah services. We are happy to have an answer to this ongoing parathyroid issue, and it seems, from Dr. Moore's work that it will be much simpler than it would've been if all the lobes were outa whack! Also, me thinks, it is better than finding out I have Epstein-Barr.

So we end up celebrating the new year at services, and then head over to Cari & Stuart's for our New Year's luncheon. L'shanah tovah everyone!

401) Colonoscopy Consult

August 31, 2010
Tuesday

Today I met with Dr. Poreddy to discuss need for another colonoscopy. Amy, the nurse informs me that the last time I was there was EXACTLY ONE YEAR AGO TODAY! Weird! That time I was here for "slow emptying stomach" which I remember as "indigestion" and got some prilosec (see Post 379 for details). So we discuss my current situation, tests that Dr. Moore is doing, and my history of colonoscopies with Dr. Hanschen. When Poreddy hears how long it has been since my last colonoscopy, he immediately says, "Oh, you need one now..." and that's the end of this consult.

Dr Poreddy mentioned that he requested Hanschen's records and hasn't received them... so I volunteered to call and see what I can do to get them. Onwards thru the fog!

400) Nuclear Imaging of the Parathyroid Glands

August 28, 2010
Saturday

So, on the 23rd I went up to NAMC for the parathyroid scans that Dr. Moore needs to complete his consult for Dr. Lewis. And, this is the first time I've had available to post about it. Too busy this last week with trainings and prepping for the fall semester class.

I got there and Robert, the bomb diggity tech escorts me into the first scan, where he asks me to take off my shirt while he and Amy step outa the room and I say "that's okay; I ain't proud...". Well, just then he get called out and Amy just stands there as I de-shirt and gown up. Kinda funny. Then he returns and oils up my neck for a slow ultrasound of that whole area and is simultaneously instructing Amy, an intern from the Austin Community College program in X-ray Technology. She takes notes... I try to keep from swallowing... and we are done in about 15 minutes.

He escorts me on down the hall, where I see Mark, who calls out down the hall something like, "Hey; you're the web page writer guy, aren't you?" and I slowly translate that into "blog guy" and respond with a nod as they roll me into his room. On the way Dr. Lewis passes me and we salute each other. In the next room, Mark and I catch up (see # 338 & 383) and talk about my ongoing healing kidney and the other attendant things that keep popping up, like the current hyper-para-thyroid business.

Mark sets me up to receive a radioactive isotope (I think it is Tc99m-sestamibi) and then he injects it and I wait awhile til they can set me up in the imaging scanner, a gamma camera.

"By using a gamma camera in nuclear medicine, the radiologist is able to determine if one of the four parathyroid glands is hyper-functioning, if that is the cause of the hyperpara-thyroidism. Theoretically, the hyper-functioning parathyroid gland will take up more of the Tc99m-sestamibi, and will show up 'brighter' than the other normal parathyroid glands on the gamma camera pictures..."* This process is one of those where I lay back on a curved pad and a huge machine encloses a simultaneously moving imager that comes curving up from the right... right over my face and neck, at a height of about 2 to 3 inches. Mark asks me to stay still (but I can swallow when I feel like it) for the next 12 minutes that it takes to take the pictures it needs. I lay there. They have music playing... not my choice exactly. I lay there.

After 12 minutes the machines swing back and I get up, helped by Mark. I am done... for 2 hours. This is the finish of the pre-picture. In two hours I come back for the images of my neck with the isotope fully taken up in my parathyroid.

I had planned to hang out at NAMC, finish up the nuclear imaging, and then go over to the Transplant clinic for my meeting with Dr. Lewis. I'm itchy to DO something besides read so I head out to find a place to sit... so, on the way down the hall I decide to shoot down Mo Pac to my office and see what's going on...

Back at NAMC:
Back up to the X-ray waiting room, where Mark comes to find me just about on time. We return to the imaging room and I complete the next 12 minute stint in the gamma camera. Mark and I say our see ya's and I move on down the hall to the front of the hospital where I now have to be re-registered by a nice young woman who is doing her first registration. I think she does a great job and tell her so. Then it's down the hall again to the Transplant Clinic.

Walk in and expect to have to wait... and they surprise me with a room waiting. Maxine weighs me (176! that's UP some) takes my BP (130/72) and asks all the pre-doc questions. Yes I have been unusually tired lately... have had a few headaches... some bad indigestion twice or so... and nothing else to complain about. Then Lizzie shows up.

Dr. Lewis enters and says all the blood work is good and I continue to do great, based on what he can see. We talk about indigestion and he ponders that somewhat and decides he wants me to get another colonoscopy with Dr. Poreddy, who did my endoscopy years ago. I wonder if all the colonoscopies that Dr. Hanschen did can be used and Lewis says they were too long ago. He also wants me tested for 2 other viruses that might be involved so I go in for more blood work next Monday (later I find out that one test is for Epstein-Barr virus).

So, anyway, now I am scheduled for another consult with Poreddy pre-scheduling another colonoscopy and have another appointment, with its attendant lab work, with Dr. Lewis set for September 13th. The call back from Dr. Moore is still to come.

I am not too worried at this point. And, I am realizing there will be some more posts to come to the readers on this blog.

Notes:
* "Hyperparathyroidism" retrieved August 28 from Wikipedia, online at http://en.wikipedia.org/wiki/Hyperparathyroidism

399) Hyperparathyroidism Çonsult

July 29, 2010
Thursday

Last time I saw Dr. Lewis, he was perplexed about the situation with my continued high calcium, so he referred me to Dr. Paul Moore, an endrocinologist. Well, after one missed appointment where the doc was at the north office and they scheduled me at the south office, we finally met for a consult today.

Dr. Moore and I discussed my medications, health history (including the early thymus treatments and the HHT) and he called around for the latest lab work that Lewis' office was supposed to send. Even though others have explained to me many times, Dr. Moore reviewed the problem: hyperparathroidism. I took notes this time, since this is now an "official" diagnosis we are adding to my collection. 1) Sensipar increases the sensitivity of the parathyroid gland to calcium levels in the body, decreasing the level of parathyroid hormone, calcium, in phosphorous. 2) After transplant, sometimes the parathyroid glands continue to increase the calcium... like they are stuck in high gear, and the Sensipar is continued to control the level of calcium so it doesn't go too high. These levels have to be controlled either medicinally or through surgery (hence my appt. with Moore to help decide which is the best course for ME). One bad thing about surgery in my case is he doesn't know which nodule of the parathyroid is the one to zap and taking out the whole works can, in his words, lead to "messy" results. 3) So, Dr. Moore wants to a) check my blood work; b) set me up for an ultra sound and another scan to see is any of the nodules are "hot", and c) meet again to make a plan.

It has been some time since I have posted up here... and yet, I do want to keep folks updated on my ups and downs post transplant. Don't know yet whether this upcoming work on my hyperthyroidism is gonna be an up or a down. Stay tuned and we'll find out together.

398) Mordechai's Birthday

March 12, 2010
Saturday

Home: Kick Kats won their second game of the season against the Starlettes... 3-2... Shayna played midfield mostly and played well in this

hard- fought game. I missed blogging on Mordechai's birthday last Tuesday and also World Kidney Day on Wednesday.

At the birthday party we had Grace, Lawrence, Kim, David and little Emma over for stir fry and a

kidney-shaped German chocolate cake... great fun.

On World Kidney Day I FB'd a link and toasted readers with a long drink of cool clear water.

Today I welcome friend and past student Donna to the blogosphere. She is writing her experiences as she begins her Peace Corps stint in Puerto Rico. Check her out at Donna's Peace Corps Adventures.

397) Annual Dr. Visit & Physical

March 2, 2010
Tuesday

NAMC: Liz and I went for my 'annual' physical and 3 month kidney checkup. For the first time we are visiting up here at 10:15 am... they have changed their schedules around and from now on we'll be meeting mid-day Tuesday's instead of late afternoon Wednesdays.

My pre-doc shows I have low temp, 130/70 BP, and weigh 180! I have got to quit eating so much pizza... and exercise some. The doc and Bernadette get to me at the same time, so Bernadette bows out and Dr. Lewis checks me over and discusses the current situation, based on my labs and reports. He reports that my blood count is good, creatine is 1.1, no more blood in the urine, and my levels of myfortic and the neorals are good. However, my calcium is high so I need to double my sensipar for now to see if that works. He concludes that "you couldn't tell you have ever been sick".

I bring up my concerns with my drippy hose and its urgency to turn on when it has to, and he discusses my three option: 1) get a test and then start Flomax; 2) start Flomax without the test to see if it makes a difference; or, 3) have an exploratory operation. I choose #2, and he writes me a prescription and we will meet in two months to check if that is working. If so, we're in good shape. If not, we go on to explore the other options.

Bernadette comes in in her new glasses and we chat about the changes in meds, etc. So, we are all done again and ready to move into year number two living with Mordechai the Miracle Kidney! Stay tuned for a birthday party for Mordechai... coming up on March 9th!

396) PKD in the Neighborhood

February 27, 2010
Saturday

Last Wednesday: My friend Kim was listed on the board as "out" for a funeral. Now I have historically been shy of funerals... avoiding them at all costs during the years of living life on the edge. Only went to very close friends' funerals (Willie C. and Mike C.) and then my mom's... but that's about it. Then in my fifties it seemed like I was over that personal quirk and began realizing it was not about me but about MY honoring the departed and I needed to bite the bullet and go and respect the departed.

At any rate, that day Kim was out for a funeral and when I finally touched base with her later in the afternoon, she reported that he up hill neighbor had died after "years of being frail" and going for weekly "treatments" for years. At the funeral she learned from another neighbor that the woman (68) died from complications following years of PKD. Kim wondered why she hadn't gotten a transplant, like I did. I shared that there are a lot of reasons for folks not to be candidates for transplant and it would be impossible to guess what the deal was with her neighbor. Kim was surprised that right there next door was PKD, just like mine.

So, PKD is around every corner it seems, as the most common, life threatening genetic disease impacting more that 600,000 Americans.

395) Do Transplant Hearts carry memories?

February 14, 2010
Saturday

Morning News: Picked up from the internet this morning... and thought provoking... wonder if this goes for kidneys too?

"Is part of an organ donor’s personality also transferred to the recipient in a transplant? Yes, contends Pearsall in his book The Heart’s Code, which provides other remarkable examples of transplanted hearts with memories." No mention of kidneys or any other organs aside from the heart in this article report on a book by Paul Pearsall.

394) Notice from Nephr-online

February 11, 2010
Saturday

News Flash: Urgent need for 4-wheelers and their toys in DC! "The blizzard has finally ended in the D.C. metro region, but the need for drivers has not. The National Kidney Foundation has put out urgent calls to four-wheel drivers that can help the 6,000 stranded dialysis patients who can't get to their weekly appointments. Missing just one of these appointments can be fatal.

If you live in the D.C. metro area, have a four-wheel drive vehicle, and would like to help, send your contact information and availability through Saturday to:"

DaVita Dialysis
brian.nelson@davita.com

Fresenius Medical Care
anita.otto@fmc-na.com

393) Message for New Readers

January 30, 2010
Saturday

New Readers:
This blog is now so long now that few people have the where-with-all to read it through from beginning to end. However, there are some parts that are of interest to most people, so it is possible to find what you want either by looking in the several indexes, or by looking for the big events, as listed below.

For new blog readers; when you click on a month from the listing of months to the black side bar, please note that you will come in at the LAST post of the month. You page down to return to the beginning of each month. It is the same with Post #'s: page down to find earlier numbers. For your ease, however, the posts listed below are links that'll take you to the specific month.

Starting with the oldest first here are some items you may wish to review, by month:

April, 2006 --> My First Time ... and page down to post # 1
August, 2006 --> Welcome New Readers ...#47
February, 2007 --> The Hundredth Post ... and page down to # 100
September, 2007 --> Washington Advocacy Trip ... and page down to # 165 (thru 168)
January, 2008 --> INDEX ... and page down to # 207
July, 2008 --> Dialysis @ Kerrville Folk Festival ... and page down to # 251-252
March, 2009 --> My Transplant ... and page down to # 337
September, 2009 --> 6 Month Post Transplant Check Up ... and page down to post 379

Also, you can search the blog for any particular word or name by using the "Find" function on your toolbar. When you click on Find, a new toolbar appears at the bottom of the page. Type in your name or word and click "Next" and you will search the particular month you are viewing. If the word or name is NOT used in that month you must select another month and again click "Next".

Happy Reading!

392) US Renal Community Helps in Haiti

January 19, 2010
Tuesday

Remember Disaster Assistance?
See what the renal community is doing to help the dialysis patients in Haiti. Very cool!

391) News to Me

January 11, 2010
Thursday

AWAK --> presents the (personal) 'Space' Odessey of 2010.
Read all about it at http://nephronline.com/article.asp?IndexID=301









this smallish utility belt-like packet is a dialysis machine that provides 24/7 dialysis as the wearer goes thru their day!

390) Twenty Ten's First Post ~ Good Labs!

January 7, 2010

Thursday

Home: Bernadette called tonight to say my labs from Tuesday "were perfect" and I can "go down to one myfortic in the morning" because the level is too high. This is a good thing. Nice way to start my tenth month post transplant, me thinks!

We wish a good, healthy new year for all our kidney kontacts out there: the folks on dialysis; transplantees, and those still worried-sick about their kidney konditions.

We give thanks to all the medical people who make their lives supporting us kidney patients: the docs, nurses, techs, dieticians, phlebotomists, social workers, and lab folks we have to work with...

...and especially in my own world:
Peggy the Lab Tech, Dr. Lewis, Bernadette, and Maxine the LVN.

And, sometime soon in this new year I have to get over to El Milagro to say a special H-N-Y to all those folks over there too.

389) Our 2009 Holiday Card

Friends ~ this has indeed been a big year for us, including:
~ Jack's successful kidney transplant in March
~ John's graduation with a BS in Biology in May
~ Katie's September return to Texas State with a new major: Interior Design
~ Shayna's Bat Mitzvah in November, ...and
~ Liz's love, support, and organizing skill through all our challenges & celebrations!

We wish for you health & happiness in the New Year! J~L~J~K~S
[pics from the Bat Mitzvah]

388) A Trip to the Emergecy Room

December 20, 2009

Sunday

Home: Every day I am more out of the fog of a "simple virus" that started with a sore throat last Thursday, the 17th, like a train pulling out of the station on a track that was not only heading to the wrong destination, but also through an alternate universe not dissimilar to chugging through Dr. Parnassus' mirror. Actually, if I had had more time in delirious states, it would have been like the excitement Dr. Parnssus imaginary world offers with its surreal obstacles. Mine were only comparable in my own mind, which is STILL not in its right station...

And, as I have promised to everyone, I will arrive on time in the RIGHT station and ready for the next two day's normal agenda... driving out to Columbus Texas with my sweetie to do two Trainings for CCYFS while Liz shops the little town, and we stay in a B&B.

Thursday afternoon, I was at the office, finished preparing for Columbus, and planning for Friday's Office Party, where my responsibilities included 1) making chicken enchiladas for 8 staff, 2) finding a final gift to give as a "Secret Santa", 3) considering which book to pull outa my stacks for gifting in our Books White Elephant. OH, and also, for my busy evening, buying some last minute Hanukkah things for Liz's family, and wrapping ALL my gifts for Friday night.

Liz was at the University wrapping up her work before two weeks of vacation, and then making her final plans for our last day Hanukkah festivities, also Friday at sundown at our house... plans which included buying and wrapping the last of the family presents, shopping & cooking the traditional latkes brisket for 12 of us, and straightening house... you get the point. That was our "normal" time schedule for our Austin Nowicki Hanukkah Train for the next 24 hours or so.

So, I am there in the Thursday afternoon, talking to my colleague Kim, mentioning that my throat is really sore. She shares, "Oh yeah... that's what everyone had... first it'll be the throat, then the drainage that won't stop, then the...."

"STOP! That's NOT gonna happen! Don't even describe it to me... you know how suggestible I am! Just keep that to yourself. I'm gonna be fine..."

"Right. I hope so... and don't think you're coming in here Sunday to prepare for Columbus..."

"I'm ready now" I responded... and we went on to compare presents, think about the party, etc.

When I got home I decided to take a little nap and begin the pre-cooking of the enchiladas after Survivor. I started boiling the chicken... and that train pulled thru Parnassus' mirror, outa the station and into an alternate reality... while I lay on the couch, napping in and out of the rest of the evening. Liz was worried, and I kept saying, "I just need some sleep..." at 9 o'clock, 10, and sometime after midnight. Around that time my "plan" was to sleep... get up at 5 a.m. and cook enchiladas while figuring out how to do the rest.

At 5 am Liz wakes me and says I am HOT... and takes my temperature... no big deal... it's only 100.2, here's some Tylenol. "I need to sleep a little bit more..." I say, only just barely recognizing I am completely out onto a new track that is not headed where I think I am going.

At 8 she wakes me up for my meds and we call Bernadette and leave a message. She calls back and, like the Swiss Conductor, punches my ticket and tells me about my next stop.
"You need to go up to the Emergency Room at NAMC and get checked out completely!"

"Really? I have things to do...." and she interjects, "...like go to the Emergency Room. Do you want to make sure your kidney is okay? <-- actually, I was off into a moment of rationality, imagining striking the items off my list. As I draw an imaginary line thru each item, the motion leads to an image of the people impacted and my hallucinations of how I am "failing" them. Wait, that voice yelling "failing" is my mom's.Then I realize Bernadette is my Dr Parnassus and she IS imagining my reality!

I call Kim and share that I will BUY and send over enchiladas ("don't worry about it); that I am at the Emergency Room (well, don't they already know it is the flu? <-- everything is the "flu" to Kim); (Should I cancel Monday? I respond, I'll be fine by Monday, I'm sure).

I am soon to step onto the landing at the Emergency Room of NAMC! I even have my cell phone with me!

So, Lizzie hauls me out there. I am feeling 22% better, after the Tylenol, and my fever is down ... and am fairly quickly brought into a room to await Dr. Milner. Is he Parnassus / Bernadette too? Liz waits for the beginning to begin before going down to the university to finish her pre-holiday work. BTW... her train is on the wrong track too. It is 9:30 am.

We get outa the waiting room and into a treatment room fairly quickly... Bernadette has called ahead with a "reservation". The nurses, head nurse Chris, and Doctor Milner are friendly... and get right to the job of taking blood for testing. Liz leaves for the university and I read my new book, Isiguro's An Artist of the Floating World... recommended to me by Johnny.

Sometime later Dr. Milner returns and reports on my blood work: no flu, no strep, creatinin is fine. I am ony a bit dehydrated so he offers me a pint drip. That takes another several hours and we finally get out of there at around 4:30 pm.

I still feel miserable with sore throat and body aches so Lizzie takes me home and puts me to couch for a rest. I sleep on and off... mostly on... through Friday, miss the family Hanukkah, which has been moved over to Jen's house from our house. And on Saturday I get up in the morning feeling fine for an hour or two... and then it is out on the couch for most of the day til I have to get up to wrap presents for our own Hanukkah with the kids. We make green enchiladas and have a pretty good time with the kids around, sharing our gifts and catching up with everyone's lives.

Sunday I get up and feel fine for even more hours.

December 21, 2009
Monday

By the time Monday rolls around I am back to 95% and Lizzie and I head out to Columbus for me to do a training gig at CCYFS and us to stay at a B&B for a "romantic getaway". Liz drops me off for my afternoon training and goes shopping and then we head over to the Little Red House (servant's quarters for the Magnolia Oaks B&B). This place was really a comfy little cottage that we had all to ourselves and we got to meet and chat with John and Nancy (the owners) before we headed back to Austin on Tuesday afternoon.

387) December Doctor's Visit

December 2, 2009

Wednesday

NAMC: In for my 8 month check up with Dr. Lewis. My vitals were healthy (BP 126/60), and I answered all the nurse questions to indicate that I am healthy, etc. I was happy to see Bernadette, back from her vacation.

Dr. Lewis looked over my labs, asked questions and commented that all continues to be good and that there is a miniscule amount of blood in my urine... taking us off onto a discussion of the blood in my urine throughtout my life, bed rest and home schooling during my second grade year at Topath Elementary School in Avon, Connecticut, and my complete records being destroyed in the US Army Medical Records building fire of 1957 or therabouts... in St. Louis...

So, he wants more regular blood work, ending up in a 24-hour collection and next appointment in February.2010.

386) News for Transplant People

November 24, 2009
Tuesday

Reading the NephrOnline today and found an article about quality of life for transplant people over time. The authors report that usually transplant get more medical attention and support the first year after surgery and less as time goes on. I think we all know that. The interesting point, however, is that as people get less from the medical support system, they have more hospitalizations and the group representing one year post surgery had generally a better outlook about their future than did the group representing 3 years post surgery. "The side effects of immunosuppressive medication had statistically significant effects on selected psychosocial variables, such as how they judged their health, what they felt they could achieve, how well they coped and their health-related quality of life."

The authors suggest that continued medical support should continue more regularly for more time post surgery than currently. "They also need to provide patients with advice on post-transplant care, immunosuppressive medication and self-care skills, together with initiatives that enhance their positive appraisal of their health, their belief in what they can achieve and their ability to cope effectively."

This research makes sense, and I myself find that I am getting lax on my self care as I meet less with my post-transplant team. It seems like the desire to return to a "normal" life post transplant, at least in my case, has an impact on keeping to the strict timing of taking my meds and no matter how I try to keep the timing a priority, it easily slips into the background, especially when there is a busy social or work schedule, like going to a sporting event and realizing once I am there that I'll still be there when my medication time happens.

I think that as the post transplant team sees me less often, I also pay close attention to my situation less strictly.

385) HAVE A SAY --- TODAY!

November 11, 2009
Wednesday

From the PKD Advocacy Network:
I took time out today to put in my two cents... and you can too...

Immunosuppressive drug coverage must be extended

E-mail your Senators today

Congress is on the verge of reforming our nation's health care system, and now is the time to take action. As you know, maintaining lifetime immunosuppressive drug coverage is one of the biggest challenges kidney transplant recipients face. We can't miss an opportunity to ensure Congress addresses this issue.

Take a moment to send your Senators an e-mail asking them to include the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (S. 565) in whichever health care reform legislation Congress may approve.

Immunosuppressive drugs are vital for surviving a kidney transplant. Under current Medicare law, coverage of immunosuppressive drugs are only guaranteed for 36 months after transplantation. S. 565 will end this 36 month limit.

Kidney transplant patients need vital immunosuppressive drugs for the rest of their lives. Currently, Medicare only covers the cost of these drugs for 36 months. The annual cost of these drugs is $15,000 to $20,000, which is far less than the cost of dialysis ($50,000 to $75,000 per patient, per year) or the cost of a second transplant ($100,000 to $125,000 per transplant).

384) November Report

November 7, 2009
Saturday

Home: I had a participant in a training yesterday who started a conversation during a break by saying, "Do you mind if I ask a personal question?". Of course, I seldom mind and my own mind calculated quickly that it had been some time since someone has asked about my kidney, dialysis, or any of those topics that used to come up frequently. "No... I don't mind" I replied.

She continued, asking, "Are you on dialysis?" and I countered, "Not anymore...." to no response but a blank face... so I continued, "I got a kidney in March, so I haven't been on since then". That explanation data entered for her and so she began to ask about dialysis, dialysis centers, and other details of the dialysis experience, explaining that her 38 year old daughter has just had her "kidneys collapse" and has ended up in dialysis. She continued that the daughter has had complications from some exotic genetic disease that docs don't usually know about, so she was treated primarily for being HIV positive and so on and so on..."developing chronic hypertension" and numerous other listed medical conditions. I replied something like, "so, the hypertension impacted her kidney function..." which supported her continuance of ventilating the story. I am thinking all this time that it is sad that people search out others they imagine have some sense of understanding of their crisis and then they open up like a dam long bursting with water's weighty energy when stopped up. Aside from the daughter's debilitating disease and her current needs for medical intervention, and my training participant's consternation about the medical care she is receiving, the nephrologist's lack of building rapport with the patient's mother, and such, it is clear that the woman in front of me wanted some "advice" without really ever coming to an answerable question.

I offerred that it is important for such medically involved dialysis patients to feel a sense of connection with the others and the staff in their dialysis center. They can get excellent information, sounding boards, and patient-to-patient support from other patients and staff in the dialysis center if the dialysis center is an open, collegial-type of facility where patients are encouraged to build supportive relationships, and staff are friendly and encouraging. Based on the woman's response, the center where the daughter is, is not like that at all and the patients are all separated by hospital privacy screens and staff are very business-like. I suggested she google davita and look at their information about finding a good facility, saying that I am not necessarily recommending Davita facilities... but they have a useful website.

Around this time the break was over and all the other participants re-entered for the training and I was left bringing other thoughts to the fore and gently setting this concern and consideration of these kinds of conversations to the rear. I do, however, think it is curious how people search out people they think are in similar situations to begin very intimate discussions with, without knowing really anything more than their hallucintation of the similarity between them and the person they are inquiring with.

Next Tuesday (November 10) Mordechi the Miracle Kidney will be 8 months old... 8 months post transplant and all still continues to go well!

News: I was going to follow up with Dr. Leary about the telangectasia in my gum and had an appointment that I went to and still missed. His office has moved and I couldn't find the new office. I did find out that he CAN zap that spot in my mouth. Still need to get that done sometime. Then onto my dentist to get needed teeth work I've been putting off while I got further into the healing and acceptance of Mordechi.

NOTE: Of recent past I find myself doing much more family sharing with friends on FaceBook and less of the personal reporting here on the blog. For friends from afar who are used to finding details and thoughts about those non-kidney related personal items that used to reside here on this blog, they can now find me on FaceBook.