100 lb. Club - What's been going on w/me? (anagram, check it out!)




SuchAPrettyFace
11-25-2004, 12:50 AM
I always hated threads like this. It seems presumptuous to think anyone cares. :lol: But I've been gone for awhile & this is going to take a bit to explain. If you have questions, post em & I'll answer. I'm not shy. :D

As some of you know, I was diagnosed w/PKD (polycystic kidney disease) a few years ago. Ever since, I've been more conscientious about my health, paid more attention to my body's needs, etc. To find out more about my disease, go here: http://www.pkdcure.org I got it from my father, who got it from his mother. My grandmother had a transplant when I was 6 months old. She is 81 next month & still kicking! :)

I get emails from the foundation ever since I did their Walk for PKD in September (we raised $20K here in Milwaukee, $500 of that by yours truly) & about 2 months ago, I received one inviting me to call Mayo Clinic to see if I qualified to be in the study for a drug that would be the cure to this disease that they were sponsoring in Orlando, FL earlier this month. In mice & rats, it shrank their cysts & prevented the growth of new ones. And in humans, it made me get up to pee every 90-120 minutes during the night when taken on an empty stomach & drink up to 6 liters (!!!) of water during the day (plus tons of crystal light, cranberry juice & the occasional glass of milk). For those of you who haven't read my plan in the What's Your Plan thread, my dr has me on a liquid restriction of no more than 3 liters per day. :eek:

I went off my HCTZ (diuretic) and took a different BP meds in preparation for the study. I sent them my Blood Urea Nitrogen (BUN) level, creatinine, etc. They said I was a great candidate, all except for my idiot boyfriend, who smokes around me & occasionally shares cigs (just a puff or two every few weeks, nothing serious). So he didn't smoke around me & I didn't sneak puffs.

I got back from Orlando last week. 35 blood draws in 7 days. 15 EKG's. 5 strangers for roommates. 6 massive ugly purple bruises. 3 bouquets & a teddy bear. :love: Countless phone calls of support. Some tears. Deplorable food. Not allowed to exercise. No choice but to be off plan. We had to explain to the nurse that although we were NOT end-stage renal care patients, our kidneys were big enough for us to be there, participating in the study. So she acquiesced & went over budget getting us more salads & fresh fruit. God loves you, Sandra!!! :cool:

I'm very optimistic about the drug, and will keep y'all posted as to how it's coming along. it was very refreshing to be around other people with this disease, to get to ask questions & share information. Some of these people will be at the annual conference next year in Anaheim, which I am looking forward to.

So less than a week after I get back, this hits the news:

Red-Carpet Guru Facing Transplant
Steven Cojocaru Faces a Genetic Condition Endangering His Kidneys



LOS ANGELES (Nov. 22) - Red-carpet fashion maven Steven Cojocaru said Monday that a genetic condition will require him to undergo a kidney transplant operation.

Cojocaru, a correspondent for the syndicated television shows "Entertainment Tonight" and "The Insider," said he suffers from polycystic kidney disease.

He revealed his illness in an interview with host Mary Hart of "Entertainment Tonight." The segment was to air Monday night on the entertainment news magazine.

"I feel great, the prognosis is excellent," Cojocaru told Hart. He's been assured by his doctor that after the operation, "I can climb a mountain in Nepal."

Cojocaru, being treated by Dr. Stanley Jordan of Cedars-Sinai Medical Center, was diagnosed with the disease during a general checkup.

"The healthy thing for Steven do to is to continue working," Jordan said. "Steven will live a normal life after the transplant. He is coming to us in a very good state because he has been on a very healthy diet already."

Family and friends have volunteered to serve as an organ donor, Cojocaru said. A donor has yet to be selected, a Paramount spokeswoman said Monday.

Cojocaru, who became known for his denim-and-fur wardrobe and snappy assessment of celebrity awards-show fashion, said he is continuing to develop a talk show for next fall.

Polycystic kidney disease is a common hereditary disease that affects about 600,000 Americans, according to Cojocaru. It often goes undiagnosed until a person reaches their 30s or 40s, he said.

Cojocaru, a contributor to NBC's "Today" show, is around 40. His exact age was unavailable, according to Paramount Domestic Television, which distributes "Entertainment Tonight" and "The Insider."

The disease causes cysts to grow in both kidneys, diminishing functioning tissue, according to the Merck Manual of Medical Information. When symptoms occur, they can include back pain and blood in the urine.

More than half of those with the disease, which can become evident in childhood or in later life, develop kidney failure at some point and require dialysis or kidney transplantation, the Merck Manual said.

Kidney transplant surgery is second to corneal transplant as the most common transplant operation in the United States, with over 9,000 kidney transplants are performed each year, according to Paramount.


11/22/04 15:19 EST

Copyright 2004 The Associated Press. The information contained in the AP news report may not be published, broadcast, rewritten or otherwise distributed without the prior written authority of The Associated Press. All active hyperlinks have been inserted by AOL.

I don't think he's 40 yet, but if he is, he is about 10-15 years too young for a transplant. :( (He is only 9 years older than me :( )

He reminds me of Joan Rivers a bit. Like I think he's destined to have a lot of plastic surgery, just like her since he does the red-carpet stuff. But at least he's bearable, to me anyway. Joan & her talentless hack daughter made me want to murder puppies.

We were talking about this in FLA, about how very few people have heard of the disease, even though it affects so many. One of the women said, "You don't hear about it b/c it's not sexy like AIDS or as heart-tugging as cancer". I think she has a point, so I guess I should be grateful he is making this public & not hiding it.

This is the latest email I got from the foundation:

Dear Aimee,

As Thanksgiving approaches, we are sending this message to thank you for your support of the PKD Foundation and to tell you about a couple of noteworthy items going on in the world of PKD right now.

National Television Personality Says He Has PKD
One of the timeliest items is the announcement by Mr. Steven Cojocaru that he has polycystic kidney disease. Mr. Cojocaru is a fashion contributor to television programs such as Entertainment Tonight, The Insider, and the TODAY Show. The announcement was made on Entertainment Tonight Monday, November 22, followed by another interview Tuesday morning on the TODAY Show.

Most importantly, the PKD Foundation wishes Mr. Cojocaru well as he confronts issues related to his PKD. We also are thankful for Steven’s efforts to share his personal story and helping to raise awareness for this disease across the country. The PKD Foundation has been making efforts to engage Mr. Cojocaru to determine his interest in working with us to spread the word about PKD and the PKD Foundation as he approaches a transplant. Regardless of his decision, the fact that someone is talking about PKD is a major boost to raising the awareness level of polycystic kidney disease.

This is a prime opportunity to engage local media. The ability to connect local families to national stories and events is what local news organizations are looking for. If you are willing and able, please consider contacting your local television and radio stations and newspapers and share your story about PKD. In sharing your story, helping promote our three core messages will strengthen the story. They are:
Prevalence of PKD. There are 600,000 people in the U.S. and 12.5 million people worldwide with PKD.
There is no treatment or cure for PKD. While there are some promising therapies being developed there is nothing currently available. Dialysis and transplantation are treatments for kidney failure, but neither will cure PKD.
The PKD Foundation helps fight PKD. By raising funds for research to find a treatment and cure and increasing awareness of this little known, but widespread disease. Information is available at http://www.pkdcure.org/ or (800) PKD-CURE

Incorporating these messages will go a long way in helping our efforts to educate people across the country.

New PKD Foundation Web Design
We also want to make you aware of the redesigned PKD Foundation website. (http://www.pkdcure.org/) Increasing demand for readily available information about PKD was the driving force behind the new PKD Foundation website. The new site offers easier navigation and improved access to information for people interested in learning more about PKD and the research to find a treatment and cure for the disease.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

So that is what I've been up to. I've been temping at a PPO for an insurance company since before I left for FLA, it was nice that they let me be a part of the study. I like it there, hope they hire me. Things w/the boy are going fine. :devil: I am back OP strong as of December 1. For now I am doing the best I can, making good choices every day.

anagram, they are doing another study like mine in February in Orlando. If you'd like the contact information for the people at Mayo Clinic, PM me & I'll PM it back. I was the youngest one there. Even if your husband can't attend, he can still get the informational emails I'm getting if he registers w/the PKD website.

Any questions, don't be shy. Y'all know I'm not. :lol: :devil:


Jillegal
11-25-2004, 01:20 AM
This will be short and sweet, seeing as its well past my bedtime, but I wanted to make sure you understand that I wish for you to presume that I care - very much so. Thanks for the informative post - I appreciate knowing what's going on. :)

Annie-Rose
11-25-2004, 08:34 AM
Goodness you had a time and a half in Orlando didn't you! I'm glad it was refreshing to be with people going through the same thing and I hope your bruises have gone away. I'm keeping my fingers crossed about the drug! :crossed:
I checked out the web site. The featured article was very moving! I didn't even know PKD existed so thanks for informing me!
I wish you well with your treatment and think your attitude is awesome! :high:
Love Annie


glynne
11-25-2004, 09:06 AM
Thank you for sharing with us ~ hope all goes well for you.

Take care ~

SwimGirl
11-26-2004, 01:44 AM
Totally off topic... I think I knew your name was Aimee, but I forgot, but my name is Aimée ! I hope everything works out with the new drug! Take care :)

-Aimée

Sheila53
11-26-2004, 02:22 PM
Aimee, I hope everything goes well with the trials--the bruises sound awful, but, hey, if it helps it's worth it.

I happened to be watching the Today Show when that guy announced that he had PKD. I immediately thought of you. So you have to be a certain age for a transplant?? If he has a donor, can he just request a transplant?

anagram
11-27-2004, 07:09 AM
SAPF - I'm so THRILLED you had this wonderful opportunity and am praying it is the answer - for you and many others.

I've printed out the info and will present to DH. Thanks for flagging it for me as I sometimes don't get on for a few days at a time and I might have otherwise missed it. Please keep us up to date as to your results from the (long and gruelling) testing period. I've taken part in several studies involving arthritis and I think it's great when I can be helping others while I'm also hopefully helping myself. NONE of mine involved nearly as much as your study did (although one did include four endoscopies) - so WOW and KUDOS.

mezmerize
11-28-2004, 01:05 AM
Thanks for sharing. I have heard of it but didn't know what it was. I hope all goes well.

PamPSM644
11-28-2004, 10:55 AM
I'm so sorry to her about your illness but proud of how your dealing with it. Sending you lots of love and good karma.

Br00klyn
11-28-2004, 08:59 PM
Thanks for sharing and checking with us Aimee! I've been missing you! :)

I truly hope that all goes well with this new treatment.. You're in my thoughts :grouphug:

SuchAPrettyFace
12-03-2004, 08:57 PM
Jill: Thank you, darlin. It's been quite a ride. I know you've been busy too. We'll chat later I'm sure. ;)

Annie: Thank you for the well wishes. My bruises have mostly faded, all but one. :)

glynne, mezmerize & Pam: Thank you for your support and kind words. :)

Swimgirl: Thank you for the good thoughts, and by the way you have the most fabulous name ever, dahling. :cheers:

Sheila: You don't have to be a certain age for a transplant, but the average age of needing a transplant is about 50. I found out last week that he isn't getting a transplant just yet; he was just now diagnosed. He might never need a transplant. I'm not sure b/c obviously I don't know him :lol: so I can't ask what his GRF (percentage of kidney function) is, or his creatinine level (measures how well your kidneys ar working) is. I spoke to my father though & he said when you find a donor, you just get the transplant. If his kidneys were really bad w/this disease, he would have a little buddha belly from the kidneys being so big & pushing on his other organs. And he's skinny, so who knows? We shall see, I have a feeling we haven't heard the last from Mr Cojo. :) Thank you for thinking of me.

anagram: I flagged it for you on purpose. ;) All my fellow survivors & I are in touch w/each other by email now. If anything big happens, I will definitely let you know. We are hoping to get the drug w/o FDA approval next summer, since they already gave it to us & no one has had any horrible side effects yet. *crosses fingers* Thank you for all your kind words over the years about this. :) I appreciate it.

Br00klyn: I've missed you too! Thank you for the well wishes, it means a lot. I am meeting with a personal trainer at the new gym w/in the next week, so I can move on & just get healthier & healthier.