Thursday, July 10, 2003

Wow! " Team Dean" Karnazes gets set for a 300-mile solo run to save the life of Baby Valeria who desperately needs a heart transplant.  I don’t think this has ever been done before. This is me and Dean at the start of his run on Thursday, October 9th at the Golden Gate Bridge."  Here is some video of the start. 10:29:13 AM    comment []

Wow a lot has happened since the last time I posted. So here is an update.   I have had a GREAT RESPONSE from Dave Winer’s original post. I have received emails with generous offers from all over the world. Some were asking for money others were informing me of my options outside the US. And others were simply altruistic offers of support. Thank you to all. This summer I've had the good fortune of a very generous and caring person in San Francisco go through the whole living donor screening process to donate a kidney for me. She was in excellent health and compatible. We thought the transplant surgery would actually take place this month. Unfortunately the hospital rejected her for some family history medical issues. She tried to appeal their decision, but the hospital is holding firm. It was a big blow for all involved. This is my second donor rejection in 8 months. It set me back emotionally for a few weeks, but I am now back on track and looking for another potential donor again. Great news! The Providian Relay, www.therelay.com, is being held this weekend. It's a 199 mile relay race with the purpose raising awareness for organ donations. A group of Bay Area moms have formed a team called 'Hot Mamas for Big Dave' and are dedicating their run to me.  The start is at the Calistoga Mineral Water Company in Napa Valley it ends at the Beach Boardwalk in Santa Cruz. "This is California's Longest Party" it relays the message on donation through Organs 'R' Us. 9:37:17 AM    comment []

See TechTV tonight it has picked up the story about my need for a kidney. They came out to my house on Monday to interview me, and then went the dialysis center with me and interviewed my doctor as well. The story is supposed to air today, Thrusday 7/10 at 5:00pm pacific time on TechTV in the tech live section. God only knows what the final edit will contain. I hope it raises awarness. 2:38:19 PM    comment []

Key messages for Thursday 7/10/03   The Need   1. Despite continuing advances in medicine and technology, the demand for organs is vastly greater than the number of organ donors. There is a critical shortage of available organs in this country.   2. In 2001, there were:       * 12,528 deceased and living organ donors     * 24,076 lifesaving organ transplants     * 84,798 registrations on the waiting list at the end of the year     * 6,439 people who died while waiting   2. There are currently over 80,000 people on the organ donor waiting list. 55,000 of those are waiting for kidneys.   The Solution   1. Almost anyone can donate organs and save someone’s life. To have your organs donated upon death, you must fill out your donor registration card and make sure to tell your family members that these are your wishes. You should also state your wishes in your medical directive documents.   2. Living donation can offer an alternative for individuals on the organ waiting list and can greatly increase the existing organ supply.   3. In 2001, there were 24,076 organ transplants performed in the United States. More than 6,447 of these were living donor transplants.   4. Unrelated donors (for example, spouses or close friends) may donate their organs if they provide a match for the recipients. Living "stranger-to-stranger" donation is a quite new and growing source of donors.   5. Living donor transplants are a viable alternative for patients in need of new organs. Many different types of organs can be delivered by living donors, including:   A Single Kidney This is the most frequent type of living organ donation. For the donor, there is little risk in living with one kidney; the remaining kidney compensates to do the work of both kidneys.   A Liver Individuals can donate segments of the liver, which has the ability to regenerate the segment that was donated and regain full function.   Lng In this type of living donation, individuals donate lobes of the lung. Lung lobes do not regenerate.   Pncreas Individuals can also donate a portion of the pancreas. Like the lung, the pancreas does not regenerate, but donors usually have no problems with reduced function.   6. Often as many as, 50% of all living donors evaluated by the hospital are rejected for one reason or another.   7. Survival rates for living donor organ recipients are significantly higher than for cadaver organ recipients.   8. Immunosuppressive medications, which keep the recipient's body from rejecting the donor kidney, have improved greatly over the last few years. Now, a genetic link between the donor and recipient does not appear to be necessary to ensure a successful transplant.   Actions One Can Take   1. Contact an organ transplant center near you to get information on becoming a donor. http://www.unos.org/members/directory.asp   2. Educate yourself as much as possible about the process and medical procedures.  A few places to start are:   United Network For Organ Sharing: www.unos.org Living Donors Online: www.livingdonorsonline.com National Kidney Foundation: www.kidney.org Transplant Buddies Online: www.transplantbuddies.org   If you'd like to contact me - please click here .  I'm looking foward to hearing from you.   Sign a Donor card today! By being an organ and tissue donor, you can save or enhance the lives of more than 50 people! To download and print your own  donor card, click here now > 2:01:06 PM    comment []

Wednesday, July 09, 2003

It all started when I decided to go public about my need for a Kidney donor. I talked to my friend Dave Winer and he said he would publish a post in his blog . Since then the blog has taken on a life of it’s own. The original post went out a week ago Monday, 6/30 and since then has been picked up by other blog sites around the country and literally around the globe. I’ve received emails from fellow sufferers with lots of information and words of encouragement, old acquaintances including some from Mexico and the Netherlands, people who have bought or are buying kidneys in Pakistan, Saudi Arabia, etc., and even an offer of an O+ kidney from a guy who actually lives in San Francisco. I’ve learned a ton from fellow PKD sufferers about further complications and risks associated with dialysis and the disease, which although scary, is really important to be educated about. The doctors never mention these things, unless you ask. Now TechTV has picked up the story and they came out on Monday to interview me at home and then went to dialysis with me and interviewed my doctor as well. The story is supposed to air today, Thrusday 7/10 at 5:00pm pacific time on TechTV in the tech live section. God only knows what the final edit will contain. I don’t really think I will get a kidney this way, but it’s been a great opportunity for me to talk about his disease, educate people about PKD and organ donation in general. If someone reads it and is inspired to sign a donor card or be a living donor for someone, it’s truly worthwhile. You know everybody can save someone’s life. I don’t know anybody who would refuse an organ if they needed one. So I think you should be willing to donate one.  Click here to get  information regarding being a donor.   Because of all this I decited to set up this blog myself . I've created my story, a coverage page and a place where I'm can explain about what I'm looking for. And lots of information links about living organ and tissue donation ,questions about kidney donation, signing a donor card and PKD . If you'd like to contact me - please click here and send me you address information I would be happy to send you out a donor kit from my hospital.  I'm looking to hearing from you   9:32:13 AM    comment []