Comments for CHRONIC POSITIVITY - Life with Polycystic Kidney Disease http://chronicpositivity.com Chronic disease with a positive attitude Fri, 13 Jan 2012 00:33:09 +0000 hourly 1 http://wordpress.com/ Comment on That Pesky BK Virus by Jeff http://chronicpositivity.com/2011/07/10/that-pesky-bk-virus/#comment-1778 Fri, 13 Jan 2012 00:33:09 +0000 http://chronicpositivity.com/?p=841#comment-1778 Barb

This is great! I have a family member that is worried that he may develop PKD (too young to tell yet). I’ve been telling him all along, that medical science is advancing all of the time (my mom was on dialysis in the mid-late 70′s, and even since then, the advancements are profound). If he does get PKD, he may not even have to deal with what I’ve had to deal with!

Jeff

]]> Comment on That Pesky BK Virus by Jeff http://chronicpositivity.com/2011/07/10/that-pesky-bk-virus/#comment-1777 Fri, 13 Jan 2012 00:30:30 +0000 http://chronicpositivity.com/?p=841#comment-1777 Richard,
Nice to hear from you, and hopefully my posts will help as you face dialysis.

Trust me, it’s all about attitude, and for myself, wasn’t as bad as I anticipated.

Best of luck to you!

Jeff

]]> Comment on BK Virus/Transplant update October 2011 by Barb http://chronicpositivity.com/2011/10/13/bk-virustransplant-update-october-2011/#comment-1641 Fri, 14 Oct 2011 14:13:02 +0000 http://chronicpositivity.com/?p=848#comment-1641 Good to hear you are doing well!

]]> Comment on That Pesky BK Virus by Richard http://chronicpositivity.com/2011/07/10/that-pesky-bk-virus/#comment-1639 Mon, 10 Oct 2011 00:04:33 +0000 http://chronicpositivity.com/?p=841#comment-1639 I just found this year I have pkd.
Terrified of the idea of dialysis in the not too distant future to be honest…
Keep on the good work and good discipline.
Thanks for sharing your insights

All the luck in the world!

From Portugal

]]> Comment on That Pesky BK Virus by Barb http://chronicpositivity.com/2011/07/10/that-pesky-bk-virus/#comment-1601 Wed, 31 Aug 2011 20:20:58 +0000 http://chronicpositivity.com/?p=841#comment-1601 http://health.asiaone.com/Health/News/Story/A1Story20110831-297087.html

This is an article about clinical trials for a “wearable” kidney for kids in Germany. So cool! Just wanted to share this interesting article.

Hope all is well with you!

]]> Comment on Getting Back To Status Quo by Jeff http://chronicpositivity.com/2011/06/07/getting-back-to-status-quo/#comment-1597 Sun, 14 Aug 2011 22:58:13 +0000 http://chronicpositivity.com/?p=830#comment-1597 Thanks for posting this; very interesting (and encouraging).

Jeff

]]> Comment on Getting Back To Status Quo by Lelie http://chronicpositivity.com/2011/06/07/getting-back-to-status-quo/#comment-1577 Mon, 25 Jul 2011 14:50:33 +0000 http://chronicpositivity.com/?p=830#comment-1577 Jeff,
I wanted to share this article about three test cases that had successfully received blood vessel transplants.
http://www.dailyrx.com/news-article/end-stage-renal-disease-patients-get-first-vascular-grafts-vessels-grown-lab-14266.html
The study was focused on very narrow admissions criteria. The vessel shunts look like a promising application for dialysis cases that are in the advanced stages and having a lot of problems. Great news on the dropped BK levels

]]> Comment on Getting Back To Status Quo by Jeff http://chronicpositivity.com/2011/06/07/getting-back-to-status-quo/#comment-1528 Mon, 13 Jun 2011 01:24:04 +0000 http://chronicpositivity.com/?p=830#comment-1528 It’s sometimes hard to notice symptoms, as they are so gradual. I knew about the tremors. I’ve had hand tremors all of my life, but they do get worse with high Prograf levels.

I just took a new position as a Case Manager for high risk patients, mainly with Heart Failure and COPD. I do follow someone know who had a kidney and Liver transplant, and told her that she MUST tell her transplant team about any new meds, as another specialist wants to put her on a med that may damage her kidney.

It’s pretty scary what can happen.

Glad everything is going well for you.

]]> Comment on Getting Back To Status Quo by Kevin Lauriault http://chronicpositivity.com/2011/06/07/getting-back-to-status-quo/#comment-1527 Sun, 12 Jun 2011 23:18:15 +0000 http://chronicpositivity.com/?p=830#comment-1527 Glad to hear that you are doing well. I had burning and trembling in my hands after my transplant but it had mostly gone away after about 6 months. My Prograf level went high this past Christmas and I noticed that I had more tremors and burning in my hands. It is listed as a side effect of Prograf that you should notify the doctor about if it persists. I am doing okay now too but I have also learned to take more control of my medical care. This past Christmas I became nauseous and had gastro issues. I called the transplant team and they told me to wait and get labs a week later when my labs were due, even though I was vacationing in Charleston (where I had the transplant) and would not have to travel 4 hours to get to the transplant treatment center if necessary. If I had just gone to the ER I would have found out that my prograf level was high and wouldn’t have had to wait a week for them to lower my Prograf and get better.

]]> Comment on Delicate Balance by Jeff http://chronicpositivity.com/2011/06/05/delicate-balance/#comment-1522 Mon, 06 Jun 2011 22:48:22 +0000 http://chronicpositivity.com/?p=823#comment-1522 Thanks Barb. I had an appointment today (I’ll post later) and everything seems to be back on track.

]]>