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.
11/11/10
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.
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