Team Kidney

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Comment by Carlos 1 day ago

Implantable Artificial Kidney
Cristina Cagliari from Brazil posted this article a few days ago. I found the original article and the link is below. Thank you, Cristina for scooping us on a subject of great interest. For the source article paste http://tinyurl.com/2avqxyg into your browser.

Comment by Lili Feldman on August 26, 2010 at 8:51pm

FW: Plaza Research - Paid Research study on PKD
From:
"Hellman, Richard"
View Contact
To: "Hellman, Richard"

2 Files Download All
PKD flyer (39KB); ATT434926.htm (5KB)
I am passing this on in the event it is of interest to any of our patients. It is not affiliated with or endorsed by Scripps.rh

From: Mindy Hertig - Plaza Research San Diego [mailto:mhertig@plazaresearch.com]
Sent: Thursday, August 26, 2010 12:30 PM
To: Hellman, Richard
Subject: Plaza Research - Paid Research study on PKD

Hi Richard,

I am contacting you today due to your affiliation with those suffering from Polycystic Kidney Disease in the San Diego community. I am the assistant director of Plaza Research, a market research company here in La Jolla/UTC. We conduct focus groups and interviews on behalf of major corporations for research purposes only. We do not sell or solicit any products or services.

Currently, we are conducting a paid group discussions with men and women whose quality of life is affected by ADPKD or PKD. The focus group will take place on Monday, August 30th in the evening and will be lead by a professional moderator.

The discussion will last about 2 hours and all participants will be compensated $100 for contributing their time and opinions.

If you are interested please email us at sandiego@plazaresearch.com, under the subject type PKD or you can call us at 858-200-3000.

Thank you very much,

~Mindy

Comment by Jay Robare on August 24, 2010 at 9:39am

Hi everyone...I just joined; I will sit back and get caught up

Comment by Tara Maynard on August 9, 2010 at 3:19pm

Hi there, I have never been on Gabapentin or anything for nerve damage. But thanks for the thought. Maybe someone else will read and be able to figure out what might be whats going on with them. I did stop the Norvasc bp med and have started another one (Clonidine). I am also still taking the Labatelol as well. I do not have anymore swelling in my feet/legs. So im sure that was the problem for me. Hope everyone is doing well...Take Care

Comment by Diane Burke, Kidney 03 on August 6, 2010 at 10:33pm

hi guys do any of you take gabapentin? I was on it for a couple of years for nerve damage ( they nicked a nerve in my leg durning tx.) when my legs and feet started to swell they too thought it was bp meds and they changed those but with little relief. At one point the Cir. of my instep was 12 inc, they finally changed nerve meds and not it is doing much better.Keep on top of your team sometimes it is something that is the last thought because it is such a small percentage of the transplant patient. Keep us posted My fingers are crossed for all of you :)

Comment by Tara Maynard on August 6, 2010 at 12:16pm

Hi Candace,
Are you on any medications for high blood pressure? The swelling in the ankles/legs could be from a lot of different things. I've been on prograf for over 11 yrs & haven't had any problems until about a year ago when I was told I had kidney disease. I too would prop them up as much as possible, and don't change any meds or take anything extra until you hear from your team. Please stay on top of your team and make sure they get back to you with answers. Keep us updated. Take Care

Comment by Candace Rush on August 3, 2010 at 12:29am

Hi Team, I haven't posted in a while. I was reading about some of your swelling. I am 8 months out from a kidney transplant and I am swelling very badly in ankles and bottom of legs. I haven't changed doses of or added any meds. I called my tx center and a nurse told me I could be in rejection or heart failure. Needless to say I was upset! My regular transplant coordinator was out of town last week.. I called my Neph here and haven't heard back from them. I use pillows to prop of legs every night. I am getting worried. Does anyone know if prograf causes this?

Comment by Tara on August 2, 2010 at 10:34pm

I will keep you updated. I too have been told I can always get another kidney. Which I would much rather go through then getting another set of lungs. (But if that was ever an option I probably would say no). My lung and kidney doctors work together great which makes me happy. Lung always checks with kidney before I am put on any med to make sure it won't hurt my kidney's further. And kidney always checks with lung. I see them both on the the 16th. Along with my ent and my diabetes doctor. I expected your creatinine to be a lot higher. Mine was in the 3's when I was told I needed a kidney tx. But I was also at 18% kidney function. That also shows how bad my other center was if my creatine was in the 3's and I wasn't seeing a kidney doctor and nothing was being done. I wasn't even told that my kidney's were not in good shape. It came as a BIG shock when I switched centers and found all that out about my kidney's.

Comment by Tara Maynard on August 2, 2010 at 10:23pm

hey Tara long time no talk...my kidney drs agree with yours. They say after the kidney tx they will take care of my anti-rejection meds at first but not continuous. They want the lung team to monitor it after that. But with the way things are going im not too happy with my lung team and have considered changing to another. Everyone else at my center is wonderful. My lung tx dr told me that the lungs come first and i can get another kidney if need be. Didn't make me too happy. I want the lung team & kidney team to work together with everything and decide what is best for me. My Creatinine was running up around 2.4 for awhile & they weren't to happy about that. Said it was too high. When I first started going to the kidney dr they said my kidney function was at 30%. That was last Aug 2009. Now Aug. of 2010 they said they are at 23% function and they usually do transplants at 20% or lower. I go back to see my kidney dr & rhuemotologist on Aug 19th. Tara I hope they are able to figure out what is causing your swelling. And that it has nothing to do with your kidneys. Keep me updated...

Comment by Tara on August 2, 2010 at 9:57pm

Like Tara I too have had a double lung tx (12/24/1991) for cf but am now 9 years post kidney. I too went into kidney failure due to the rejection medications. I now take prograf, cellcept and pred. Before the kideny tx I took Neoral, immuran and pred. I was switched to prograf and cellcept the day of my kidney tx. My kidney doctors feel that lung tx should monitor my rejetion medication because the lung is the more important organ. Yes my kidney doctors would like my prograf levels lower but lung will not allow it. My Prograf level is kept between 7-9 and I will never be allowed to be below 7 due to the lung tx. A lot of my kidney failure had to do with inproper care at my first lung tx center. I switched centers in May 1999 and was told I needed a kidney tx in Feb 2000. I had high bp that my old tx center was doing nothing about and they were doing nothing for my diabetes either. Since I got my new kidney I still have a slightly elevated creatinine. My normal is currently 2.0-2.4 and I have been there for a few years. I have also been having a lot of swelling recently. I just sent my coordintor an email this evening but she is out of town until the 9th so I shall see what they say after she gets it. But I do have an appointment with kidney on Aug 16th. Not sure what is causing my swelling. Could be meds, could be heat who knows.

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