PKD Guinea Pig

Cha Cha Christmas

2011-11-30T05:14:00.000-08:00

Cha Cha Christmas

the hand

2011-10-29T17:29:00.000-07:00

Lady Gaga - Speechless (Live at the VEVO Launch Event)

2011-08-20T14:11:00.000-07:00

Account

2011-07-20T21:05:00.001-07:00

The history of my stupidity would fill many volumes.

Some would be devoted to acting against consciousness,
Like the flight of a moth which, had it known,
Would have tended nevertheless toward the candle's flame.

Others would deal with ways to silence anxiety,
The little whisper which, though a warning, is ignored.

I would deal separately with satisfaction and pride,
The time when I was among their adherents
Who strut victoriously, unsuspecting.

But all of them would have one subject, desire,
If only my own -- but no, not at all: alas,
I was driven because I wanted to be like others.
I was afraid of what was wild and indecent in me.

The history of my stupidity will not be written.
For one thing, it's late. And the truth is laborious.

Always challenge Certainty

2011-07-20T20:52:00.001-07:00

1) Always challenge certainty, especially your own

2) Excellence is an unrelenting struggle but it is also the surest route to enduring satisfaction

3) Emotions are contagious so it pays to know what you’re feeling

4) When in doubt ask yourself, “how would I behave here at my best?”

5) If you do what you love, the money may or may not follow, but you’ll love what you do

6) You need less that you think you do

7) Accept yourself exactly as you are but never stop trying to learn and grow

8) Meaning isn’t something you discover, it’s something you create, one step at a time

9) You can’t change what you don’t notice and not noticing won’t make it go away

When in doubt, take responsibility

2011-07-20T20:50:00.000-07:00

My whole family thinks so...

A friend with her donor angel

2011-06-06T09:15:00.000-07:00

Yeah Teresa!

Kidney donor goes way out of her way

2011-06-06T09:11:00.000-07:00

Kidney donor goes way out of her way

Serotonin Syndrome

2011-01-31T18:12:00.000-08:00

I think I just figured out why I have been feeling crazy and ended up in the ER last week!

Happiness

2010-12-18T06:25:00.001-08:00

Is what really matters...

Central Ohio Walk for PKD 2010

2010-09-27T21:07:00.001-07:00

Was a huge success! Inspires me to start and keep writing in this journal of my travels through the PKD world!

Tired of being from Guinea

2010-05-06T13:27:00.001-07:00

Tired of PKD! Tired of kidneys! Tired of the words dialysis, transplant, creatinine, Blood Pressure, medication, water, anxiety, depression, divorce, separation, late and mental.

All in all, I'm sick and tired of being sick and tired! But I must be careful what I wish for.

PKD = Paralyzing Kamakaze Dance

2/2/210

2010-02-02T00:16:00.000-08:00

A quick review of this blog shows me that not only did my documentation slow way down... I only wrote in it 1 time in 2009. Then everything with Teresa and the need for a transplant started and it's been rough riding ever since. It's now 2/2/10... first entry since 7/16/09... I have been writing in my personal journal... versus this public one as the year has turned into a year of personal internal problems better left undiscussed. If you were to read my personal journal, you would see that I have reverted to documenting the uncanny things that are happening in my life in which I continue to make a decision that is the same decision as the last time, which fails every time and you find yourself back at where you started.
So then 2010 I begin making different decisions. Not necessarily the correct ones... just different ones. So I chose different being dating 2 instead of 1 person which led to a disastrous January (every day) followed by the 1 supposedly moving in with me after my roomate moved out and I'm kinda lost in the middle.
Lost in the middle of nowhere!

Looking for a kidney

2009-07-19T10:46:00.000-07:00

I would have never imagined coming to a point in my life where I would be sending this request. However, this isn't about me. A close family friend of mine grew up with diabetes which ultimately led to her needing and receiving a double-organ kidney-pancreas transplant 21 years ago. She is now 48 and finding out that her transplanted kidney is failing. She is on the organ list, but time is quickly running out. Her entire family has stepped up to the plate but have come back incompatible for kidney donation.? Where does this leave her now? Scared, but hopeful and loved. She has asked me to send this message to everyone I could possibly email and request that you forward this email to your entire address book as well in hopes that if enough people read or hear about this request, somewhere, someone may feel lead to step up and donate the gift of Life.
Those interested should contact The Ohio State University Medical Center Pre-Transplant Department at 293 -6724.
"They can ask for Robin or Bonnie.... They'll send people infoand/or answer questions.?? Tell people to let Bonnie /Robin know theyare calling regarding me? (if it is for me and not someone else they maybe considering) Teresa Jacott :)? Thanks." (Any potential donor must have an O pos or neg blood type, not A, B or AB. O pos and neg being eligible and the most prevalent blood type in the U.S.)
Please add this request to your prayer list and help me get this email to as many people as possible. This is not a typical request... I am aware of this. However, Teresa is not a typical person. She is a friend, daughter, mother, and sister to many who count on her... and this matters.Thanks for reading. Feel free to ask me any questions as well. My father had a kidney transplant when I was 4, so this topic is far from foreign to me. I might not know the answer but I can find it.
Jared Cunningham

Sunday night

2008-08-17T21:21:00.001-07:00

Late. Time for bed. Starting to feel much better though... thank God!
These medication changes have NOT been easy!
May I get some rest...

rough week

2008-08-16T12:02:00.000-07:00

Been a couple of rough weeks with the medicine changes. Feling fatigued and nauseous most of the time. Plus,It's WaLK FOR PKD season, so things are getting hectic.
Have a check in to verify my drug levels and report BP's to Cleveland Cinic tonight,so we will get a good check then.
Until then, just relax.

124/85

2008-07-27T21:42:00.001-07:00

BP looking much better than last night thank God. Yesterday I was feeling lousy and BP was running 149/106. Rather high. So, I just relaxed and drank water and things came down. Looking good and feeling better tonight.
Looking forward to Friday... I go back to Cleveland Clinic and stop the beta blocker. Start the clinical trial drugs. Anxious to get this show started!

Non work related

2008-07-22T19:23:00.001-07:00

Just confirmed a dinner date for tomorrow night. Nice....

Central Ohio Chapter Public Education

2008-07-21T19:10:00.000-07:00

2008 Central Ohio Walk for PKD

2008-07-21T19:08:00.000-07:00

121/70

2008-07-21T19:00:00.000-07:00

I feel just as those numbers say I should. Low BP... feeling great. Relaxed. No anxiety. Just kind of hapy to be in the middle of summer. Feel swell one might say.

Cleveland Clinic reviewed my recent labs and decided to start me on Lipitor. High cholesterol / Triglycerides, the whole cholesterol she-bang. Only 10 mg... and just another pill. One of many in my day... but one more sucks. Going to watch some diet things as well... low cholesterol diet of sorts. Remembering the motto: Quality not Quantity.

docs holding polycystic kidneys

2008-07-21T18:56:00.000-07:00

A picture you must see

2008-07-21T18:53:00.000-07:00

129/81

2008-07-12T15:31:00.000-07:00

Lazy Saturday. Have dedicated toay to not leaving the house and getting as much rest as possible. Realizing that there are several major stressers in my life currently, I also realize that I will be better if I rest as much as I work. Saturday's always a good one to let go and unwind.
Romantic interest: going to go to the fire lights by the river and discuss the confusion there.
Family interest: out to the best friend's house in pataskala later tonight for bf movie night.
Domestic interest: trying to start the deep cleaning needed to get the packing and detaching from this house started. Will continue to work on that slowly.
Looking at the clinical trial: reviewing this week's readings it appears that 400 mg lobetolol may not be enough. 140/90 being the BP reading that corresponds with needing to call the research nurse. I am staying lower but it is g=higher than I was reading with the ACE-inhibitor. So, we will have to send them the data and see what they say. Either this is fine for the remainder of the drug washout period or they adjust the mg's up a few. Will keep it posted.
Emotionally: irritability has reduced dramatically. Rest probably helps that as well.

124/76

2008-07-11T15:05:00.001-07:00

Been a long and interesting day. Things winding down although oddly marked with kidney disease. Good friend of mine's 21 year old son needed a transplant. Today, he received the transplanted kidney from his brother and they both are doing well. Whew! Wasn't worried but nice to confirm, nonetheless.
First week of blogging under the HALT-PKD study. Day 3 or 4 in drug washout period. Things are going fine. Small BP disturbances but mostly just smooth sailing. Irritability is the most noticeable side effect. Trying to keep that to myself... I hope.
Friend who just recevied the bad news from Pitt is being kind of absent. I can imagine she may have retreated to her confort zone until she is ready to think and talk about this. I will stay tuned and hope to chat with her soon.
I feel that my BP is on it's way downa bit so I might have to check back in later tonight and see how the numbers are. You'll see it in the title if you need to know...

112/67

2008-07-09T17:11:00.000-07:00

Good: 1st day of drug washout phase is being tolerated rather well. Slightly tired and irritable but all is ok. Optimistic

Bad: Friend received biopsy results from Pitt today which indicated moderate to severe transplant rejection..... after some 12 years!!!! Rather upset about that.

Will definitely need to evaluate all of this further later...

HALT-PKD Day 1

2008-07-08T19:56:00.000-07:00

Almost 11 pm. Just got in from a "Renal Journey" with a friend. Live in Columbus, Ohio. Drove her to UPMC in Pittsburgh for a ultrasound and renal biopsy. Then I went to the Cleveland Clinic for my screening visit to enter into the HALT-PKD clinical trials. Then back to pickup my friend in Pittsburgh only to continue on home to Columbus. Whew! Decided in the car that if I am committed to this clinical trial like I know that I am, then I should share my experience so that others may see the personal side of this type of experience.
Hence, "PKD Guinea Pig"!
I will Walk.... until there is a cure.