11/11/10

410) Transplant Clinic Dr. Appt.

November 11, 2010
Thursday

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

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

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

409) Texas End Stage Renal Disease Summit

November 9, 2010

Tuesday


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


This summit’s agenda includes:

1. Breakfast;

2. Welcome remarks from Chad Lennox;

3. Two doctors discussing advancements in renal home therapy

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

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

4. Living with ESRD: A patient’s perspective

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

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

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

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

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

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


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


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


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


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


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


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


9/24/10

408) Discharge Day

September 24, 2010
Friday

NAMC 4-N:
Dr. Sankar popped in at 7:30 am to report that my overnight calcium level is back up to 8.2 so I can check out this morning. He wants to see me in his office next week, where we will do another calcium level check. He is happy that things seem to be going well with my calcium. He is going to the nurses station to write up discharge notes and I'm outa here!

Afternoon: Home again. Not going in to the office this afternoon. Back to work on Monday. Today is rest and taking lots of Calcium... 500's 4 times a day. Bernadette cautions me not to take them with anything with phosphorous cause it'll bind with the calcium and escort it right out the other end. Only useful to keep my level up when taken without food.

9/23/10

407) Check out day?

September 23, 2010
Thursday

NAMC 4-N:
Dr. Sankar stopped in early this morning and shared that he thinks the calcium level is slowing and beginning to level off. As we discussed before it dropped from 10.3 to 10 to 8.4 and then to 8.2 where it was at last reading. He anticipates it will level and I should be able to check out of here early evening today. Nurse Barbara was in here while he reports and will be reporting back on how I am doing, plus there is more blood work to check the calcium level today.

A few minutes later, Dr. Lewis stopped by to see me and I told him about Sankar's report. He sounded happy about that and left. Then Bernadette came by and we discussed the whole thing about taking more calcium, levels, being careful to not go from hyper parathyroidism to hypo parathyroidism, etc.

Throughout all this I was also nibbling at my breakfast and trying to slip into the day... wanting to take a shower and get back to finishing grading papers for the class.

I'll be adding to this post as the day goes on...


Later:
1:30 pm... Barbara the Nurse runs in to tell me my morning calcium level: 8.2 again... it has stayed the same as last one... so maybe it is leveling... Barbara will call Doc Sankar and see what he thinks.

Later: 6:00 pm... Barbara the Nurse came in just before leaving for the day and said that my latest blood work from this afternoon shows my calcium level is down to 7.4! DAMN! Dr. Sankar hasn't called but we know that this lower level means I stay another night. Nurse Barbara won't be working tomorrow so we said our goodbyes with a hug. She is one fine nurse!

A few minutes later Lizzie and Shayna came to visit and stayed til about 9 watching the new season shows on TV. Next blood work is at 3 am. Nurse Fe checked in and we discussed the situation and she gave me meds and calcium and my stomach shot and we're off to another evening. At least there is good TV tonight. And, I have all the time in world to continue grading my papers. Onward thru the fog!

9/22/10

406) Calcium Dips

September 22, 2010
Wednesday

NAMC:
Up by 6 am cause lots of poking and testing here. I started playing on the Mac Dr. Lewis pops in about 8 and reports that my Calcium looks good and I may be able to check out today. WOW. Bernadette pops in an hour or two later and asks if Dr. Sankar embedded a piece of my parathyroid in me somewhere and my completely confused expression told her I had no idea what she was talking about. She says, "sometimes they put a little piece of it back in you somewhere to get the extra hormone out and back into your system." Weird!

The rest of the morning goes by expectedly: Eunice the Nursing student from ACC comes in to take my BP, temp, and pulse a few times... and is attended by her instructor, Sherry, Cheryl, Ashley, or some other similar name. I have confused it several times already... Barbara comes by to say "HI", gets me some Nursing station coffee to supplement the food service coffee.
I must say though, the food at this place is the best hospital food I have ever had! My over easy egg, hash browns, and bacon this morning were wonderful. My lunch of a vegetarian quesadilla filled with zucchini, grilled onions, and peppers and here-made pinto beans was also really tasty. I think I may have written about the food here when I got my tra
nsplant too. Lizzie comes over from the school and joins me for lunch, and eats my salad (which I really ordered for her anyway). She's off back over there for a meeting from 3 til 5. If I stay tonite, Shayna wants to come up to see me.

Later: So, finally, at about 2, Dr. Sankar pops in after surgeries and reports that all is going well: my calcium is dropping just he thought and he believes it'll drop a bit more before starting to rally. He also told me about a reading I hadn't heard about. It started at 10.3, then dropped to 10 and last time dropped again to 8.4. He anticipates another drop and then maybe it'll start going up again. He is doubling my calcium intake to rush the whole process along.

I called Liz with the news and post it here for the rest of you arm chair physicians.

9/21/10

405) Parathyroidectomy

September 21, 2010

Tuesday


NAMC ~ 7:05 PM: so, here we are again, getting signed in and preped for another surgery. These beginning notes were taken by Lizzie while I acted as the "patient". Now, if I can only read her notes! We are in the ambulatory surgery wing with our first nurse, Jay. He is giving us the lowdown on what all we can expect, when it should occur and setting my first IV feed. Quite a while later, it seems, my anesthesiologist, Dr. Lima enters and we discuss my knock out drugs... in this instance a "general anesthetic". She promised to take good care of me and Ilda the Nurse (2) and I talked for a good while, while Liz kept calling Shayna unsuccessfully 13 rimes to get her up for school. Finally, she was able to reach her with a TEXT message!

Ilda rolled me down through the halls... and as a rider on the gurney, mostly we notice the hall walls and ceilings going by... and into the O.R.,where I first see Dr. Sankar. He is smiling his usual self and I quickly ask my two questions which I have been concentrating on remembering since we arrived: 1) can I get a room up on 4 North, the kidney floor? Sure. And (2); can I see / have the overgrown parathyroid? No. Its just a little brown peanut. We have to send it to biopsy... he reports. Okay.


Dr. Lima brings over my ultra-seal disposable face mask and gently places it over my nose and mouth and before I can say, "Winken, Blinken, and Nod" I'm off in the ozone and then I hear lovely Lizzie's voice saying something like, "Jack... here's your meds... time to take your meds..." and she holds them up to my lips, one at a time, in a little paper catsup cup. This is a very complicated process over and over and over again, for drowsy dopey me. I think I said something like, "Hooray. I am still alive and on the planet...", maybe. I was very sleepy and immediately went back off to dream-land. This part of operations is definitely my favorite part: in and out of consciousness with not a care in the world, cept of course knowing I am still IN the world. Liz notes in her notes that the time is 9:30 am.


So it goes... off and on and on and off for some unknown length of time, Liz is gone and left me with "sweet blond" (<-- Liz's notes) Nurse Valerie (#3) who is very sweet (and I don't use "sweet" hardly EVER). Every time I come up the stairs to consciousness she is there, telling me I did good and all is well, etc. I find out much later that the reason I dreamed of Liz bringing me my meds was that she WAS doing so... she had gone to the car to get them... and been allowed into recovery cause none of the staff can handle "outside meds" cause they are "unauthorized" and may be laced with poison or some such thing. Finally, at 11:30 I am mostly awake and it is time to be rolling on up to 4-N. Valerie kisses me goodbye, gently on the cheek, hugs Liz and sends us away to new nurses and adventures in hosptaland. (So far, Nurse Valerie is my favorite, as you can probably guess.)


We arrive to find Nurse Barbara and Cowgirl Sabrina who I recognize from my last stay on 4-N, a year and a half ago now. They see lots of patients but it only takes a few minutes to remind them who we are. Both of them are like "the best" and we are immediately kidding and teasing and making a fun time here on 4-N.


Bernadette stops by and we talk meds and tell her the surgery evidently went well. She has touched base with Sankar and relays his message of success and Liz tells about her brief talk with him just after he finished the operation. I can tell Lizzie is relieved. She and I set in to making this room our room, getting out the lap top and spreading our junk around in a homey way. They bring me "clear liquids" and I get my first coffee of the day (2 big styro-cups) along with orange jello, mushroom soup (clearly not clear), iced tea, apple juice, milk (clear?), and banana pudding. I drink coffee and pump Liz for all the answers about what happened while I was in La La Land.


She has already called my Dad, her Mom, John & Katie, Kim, Shayna, and Jen. We talk about how happy we are, how good life is, de tails of the day, etc. etc. while the nurses come in and out and measure all my bodily fluids and measurable signals of health. I find I have to stay in bed today and pee in the jar. I'll wait to poop til tomorrow, thank you.


Then, another meal comes! Its dinner! Two fajitas, beans straight up, ice T, a salad with French dressing, and more banana pudding, yum yum... Liz gets one of the fajitas and the iced tea and I gobble down the rest after we have talked and talked and watched the ABC Evening News. The she leaves to go home to Shayna.


Nurse Reba takes the floor after Barb and I don't recall yet much about this shift. I didn't get to see "The Good Wife", so I watched "Parenthood" which was pretty lame tonight. I busied myself writing the Ode to Liz, two paragraphs below...


The over-night crew comes on and it is Nurse Lissy, who remembers the thank you letter I sent when I left after the transplant, and which hung up in the Nurse's lounge for many months. This tidbit makes me feel very good that they so graciously accept my accolades last time.


+><+><+><+><+><+><+><+><+><+><+><+><+><+

Somewhere in the beginning of tonight's post, I wrote:

"I STARTED THIS POST AND THEN, ALL OF A SUDDEN AN OLD TUNE POPPED INTO MY HEAD... and I dedicate it to my BFF, main squeeze, love of my life... Lizzie!"

Here I am again...back in that same old place again,

seeing all those friends again... lyin' here dreaming of you.

You stayed here with me again... and sent in the light again,

and gave me my meds again... as I woke up to you.

Yeah, I'm back on 4N again, resting in my room again,

and flirting with those nurses again... jest like an old fool.

I'm missing you here again... even tho you just left; when?

Here I am - can't find my pen...even tho you findin' it ain't cool.

Hope you're smiling now on the couch in the den, knowing that YOU are the comedienne

and that I'll take a taxi in the pouring rain ...cause I'm always comin' home to you!

l'm always comin' home again... laughing all the weigh is what I intend

and back to my old self again... and waiting 'n' wanting to make fondyou.

9/14/10

404) THIS WEEK IS National PKD Week!

September 14, 2010
Tuesday

This is National PKD Awareness Week!
"What's that?" you say?
Its the week where we PKD People let the world know more about our disease! Visit the PKD Website now to find out more.

Unfortunately, Austin is NOT having a PKD Walk for the Cure this year, because the interest in our local chapter has fizzled. There is one, however in San Antonio

Saturday, September 25, 201o
Check it out! Donate! Go and Walk!

Later: Liz and I met with Dr. Sankar, a young, curly headed Indian with a quick smile and a completely American voice. He got to the office after we had been waiting for 20 minutes, which allowed me to read two of my student's first papers on their theory of change.

Dr. Sankar rushed in, apologizing for being late by saying he just got out of surgery. He again explained how the lower right parathyroid gland has enlarged and the others are asleep and we'll clip that one out and the others should wake up and start doing their jobs. The operarion takes about 1 and a half hours from start to finish, will be done early in the morning and then I'll "hang out" in the hospital for a few days (maybe up to 4 or 5) while they pump me up with calcium til my sleeping glands take over the job. It is impossible to tell how long that'll take and he wants me in the hospital through that process.

So, all we have to do now is decide WHEN I'll go in. After some discussion about when is best for Liz, best for me, etc., we decided that I'll go in next Tuesday morning at 5 am.

9/10/10

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

9/9/10

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!

9/3/10

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!

8/28/10

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

7/31/10

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.

3/13/10

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 a
s she begins her Peace Corps stint in Puerto Rico. Check her out at Donna's Peace Corps Adventures.

3/3/10

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 sam
e 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!