Transplant Update

19Nov09

Untitled from jen fogg on Vimeo.

Phew, I made it!  While in the hospital I was able to meet all the Docs on the transplant team.  I was mostly under the care of the team endocrinologist, Dr. Masharani, who being of Indian decent with British accent and animated personality was great fun!  All the nurses who cared for me on the research wing were AWESOME!  It was evident I was in very capable hands.  Despite some of the tests being unpleasant I still had a great experience (even the food was good).  They expect to have all the test results by early next week.  If all goes well I then go on to a month of serious blood sugar documentation.  I send that data in which they put in a fancy computer program that spits out a score.  So if the test results and then the score are all where they need to be, I'm in.  The team is hoping to have me on the donor waiting list by early January.  Fingers crossed!

To Vermont and Back

17Nov09

Despite the unfortunate circumstances for my trip(broken baby bones) I had a great visit to Vermont.  It was weird to be back east again and there was a bit of culture shock (honkeyville and no burritos in sight), but I'm glad I was able to help lend a hand.  The little patient got just a bit stronger every day.  By the end of my visit she thought she would like to try to pull herself up and stand on her broken leg (she quickly realized this was not a great idea).  I hope she continues to heal and is as good as new very soon!  Thanks to all the Pinsonneault kids for dutifully eating my cooking - miss you all!


Untitled from jen fogg on Vimeo.

The Pixies

09Nov09

Untitled from jen fogg on Vimeo.

Dia de los Muertos

06Nov09

My new favorite holiday!

#14

28Oct09

Built in 1797 Mission San Jose is actually in Fremont (but I'm not going to hold that against it). 16 more to go.

Jen Fonda

18Oct09

Last week I had a stress test done.  It was one of the last things I had to do before I can get the in-hospital testing done which will  determine if I can take part in the transplant trials.  After six emails and three phone calls the results were finally faxed to the transplant team and I have a date for my hospital tests. I will go in on the afternoon of November 17th and spend about 24 hours there.  I am happy to be making progress even if though it seems slow going.  So that is the news on that front, but I thought I might share a little about what the stress test was like as a sort of public service announcement, in case anyone out there ever has to have one.

Before the test I received a letter from the Dr.'s office saying that I should not eat one hour before the test and to wear loose, comfortable clothing.  So on the day of the test, I did not eat an hour before the test and I wore loose clothing and shoes I might walk the dog in, sturdy and comfortable but not quite  running shoes.  I was prepared for what I thought would be a brisk walk and excited to get it done so I could move on with the transplant efforts.  It was the Friday afternoon of Columbus Day weekend and I had not anticipated the heavier traffic.  The office was only a couple of miles away in the Elmwood neighborhood of Berkeley but the traffic, a wrong turn on a dead end street coupled with a driver who decided to pull out in front of me and stop (even after honking the horn they just stayed stopped blocking all traffic??) meant I was late.  I hate being late so I was a bit flustered when I arrived, but they were very nice about it and took me right into the room for the test.  Now I'm not a Puritan or anything but it was a little odd when the nurse gave me what was essentially a piece of tissue paper which was to open in the front and said to remove all clothing from the waist up and put this on but did not leave and did not shut the door.  Hmm... ok whatever, I put it on.  She proceeds to place sticky squares all over my chest and hook me up to wires.  She does an ekg and ultra-sound of my heart.  "Now we need you to get on the treadmill" she states innocently.  I get on the treadmill, still attached to all the wires, which are attached to a machine that goes beep.  She also puts a blood pressure cuff around my arm and leaves it there, and I am still in my little tissue paper number.  The treadmill starts at a slight incline and a faster than a stroll pace.  I am walking along, things are good.  The speed and incline are increased, it is now a brisk pace and I can feel the incline effecting my muscles.  The treadmill isn't like  the ones in the gym, there are no speed and incline numbers on it, so I cannot report them exactly, only their effect on me.   The speed and incline was manipulated by a button one of the two nurses conducting the test was holding.  I ask how long the test will take, not yet concerned but just wondering.  The nurse says, "However long it takes to get your heart rate up to 184," I look at the machine to my right, it says 100.  I am not sure if this is good or bad news, but am still optimistic.   She increased both speed and incline again, I am forced to run.  It has now been about 15 minutes I would say give or take, I am running with the tissue paper blouse crinkling and sans a sports bra or any at all.  I am thinking positive thoughts, I look to my right, I am up to 130.  The number creeps up so slowly that I try not to watch it.  "You're going to want to hold on now" the nurse with the button explains.  Now I am getting a little worried, I grab onto the bar in front of me  as the speed and incline are increased to levels that even on my best day in the gym I would not attempt.  I am now flat out sprinting, my tissue paper cloak is soaked my hands are slipping off of the life saving bar, and every few minutes the nurse on my left tries to take my blood pressure, which at this point feels like a bag of bricks weighing me down.  I keep running, cursing my shoe choice as every landing of my foot sends a shock to my knees.  This stretch seems to  be twice as long as the others, the nurses start talking about the time, concerned by how long it has been, I look to my right, 152......153.  In an apologetic tone, the nurse with the button says, "I have to increase it again".  I prepare,  I run and run, sweat is pouring off from me, I can barely hold on, I feel dizzy and nauseous, 164....I start to think of saying I cannot go on...165......  184 seems like an eternity away.  The nurses whisper together, I am about to tell them I cannot go on, when the one with the button says, "Can you hold on 20 more seconds?  We can stop at 170."  I say nothing but keep running.  The treadmill is stopped just like that, and I go flying backwards, the two nurses catch me and lay me on the table where this test began.  They do another ekg and ultra sound while every muscle up my legs begins to cramp up from the sudden stopping.  I can hardly get a breath and can feel a puddle of sweat forming underneath me.  It's done. The button pressing nurse, who I now have some resentment towards, hands me a paper towel to dry off, it is useless.  She tells me I can get dressed and again stays in the room with the door wide open, but at this point I am not even phased by it.  I stuff my bra in my bag, tear off the tissue paper shirt and throw on my t shirt,  All I want to do is get out of the office as quickly as I can!  I somehow managed to thank the nurses, although I'm not sure how sincere it really sounded.  Once outside I felt I had escaped a torture chamber, my head was still spinning, I was sightly confused, and couldn't remember the way home.

I made it of course, and now the whole thing seems so ridiculous, maybe I just was expecting something different.  I do think if I had to do it again, knowing what to expect, it would not seem so bad, which is why out of the goodness of my (stress tested) heart I am relaying this absurd tale.  My advice if you ever have a stress test  (1) insist on wearing a sports bra, (2) wear your running shoes (3) stretch before hand and (4) don't plan on going on a date or anything afterwards.

my next stress test outfit

The Good 'Ol Days

15Oct09

When I was little my dream job was to work at St. Marie Among the Iroquois or the French Fort as we called it in my insensitive youth.  It was/is  a county park in the town I grew up in where they recreated down to the weird smells, daily life during the 1650s in upstate New York.  They had what I now know are costumed interpreters, but back then I thought you got to live there and be a blacksmith, or a carpenter, or churn butter and wear all those old timey clothes for real.  I thought you lived and died there (like a real job), and I so wanted to be one of those people.  When my parents took my brother and I to Colonial Williamsburg, I thought my life could end, "This is it - Nirvana!" and a copy of the Declaration of Independence I got as a souvenir  (my prized possession, it had burnt edges and everything), made my life  complete!  I do not quite understand why this is, I like history but not so much that I want to sit around reading large chronicles of the Crimean War or anything like that.  Maybe  it is the idea of simpler times that appeals to me, I don't know, but I am still drawn to those places where history is alive or at least can be glimpsed without all the modern day superfluousness.  So finally after two years of yearning we made a short trip to gold country.  It was the most perfect of days and the drive down historic Route 49 brought me right back to how I felt as a kid seeing history come to life.  There are a string of towns even some ghost towns that seem to have barely changed since they sprung up during the gold rush. I mean people were actually sitting on front porches talking to their neighbors, no one was in a hurry, there was a sewing machine repair shop for crying out loud!  Sitting on one of these front porches at a  cafe we half expected to see people on horseback instead of cars and Devin made me sit and relax and I did it!  Lucky for me there is still much more of the area to explore and Devin and I vowed to come back and stay in one of the little inns all by ourselves someday!

Movin' On Up

02Oct09

UCSF Medical Center

I have come to realize I am a documenter.  I collect rocks, shells, pine cones, and all other manner of interesting objects I find on our travels, be it down the road or hours away.  I take pictures like my very life depends on it.  I Iike reminders of where I have been and in that spirit I have decided to document my transplant experience, starting here with the decision to definitely do it.  For months I have been seeing doctors,  having tests, emailing, emailing, emailing, faxing and faxing again just to be considered for the study.  On Wednesday I finally met with the transplant team including Dr. Andy and got very in depth information on the whole process and then, signed the consent forms.  After I came home I was feeling somewhat apprehensive about it, the medicines I will have to take for the rest of my life (and which may not be covered by my insurance after the study, even though they are all completely covered in Canada, ahem) are very serious (and expensive) drugs.  I've talked to my own Endocrinologist, and Devin, and BFF Hala, whose son with JRA, takes very similar medicines for his disease, I've scoured the internets, and tonight spoke with a lovely woman named Helen, who a year ago had the islet transplant herself.  She gave me every minute detail good and bad of her experience, answered all my questions and sealed the deal for me, making me feel confident in my decision to go forward.   Well hopefully,  I need to have a heart exam on the 9th and if all  goes well I will be scheduled for an overnight in the hospital where they will do very extensive tests on especially my kidneys and liver to make sure they can handle the procedure and all the medications, and then a test to make sure I am not making too much of my own insulin, which would disqualify me from the study.  I will not get into all the specifics of the study (yawn) but here is a link if you care to read more about it .  All of that should take about 6 weeks and then I will have to keep very detailed logs of my blood sugars for one month, and then I will be put on the waiting list for the transplant, which can take anywhere from 2 - 12 months.  I am excited to take part in something that has the possibility to help millions of  people, oh and if it helps me, that'd be all right too!  So there will be long stretches of inactivity, but I will update things as they change.  Thanks to everyone for the support and well wishes I have received!!!

 

Northern California Road Trip

29Sep09
A camping trip on a super hot weekend up to Humboldt County to hang out in it's many icy cold rivers. We didn't see Bigfoot but I swear I heard him!

The Emma Report

25Sep09

Emma has survived her first five weeks of high school and has managed not to get egged on Freshman Fridays (although a few of her friends have not faired so well). She just needs to make it until Homecoming when Freshman Fridays end.  She is taking english, earth and space science, algebra 1, health, p.e., and ceramics.  She's got a great group of friends and we are so happy that she is thriving in her new environment.  She was tired after a long day of school and the walk home and in this vulnerable state I managed to get some shots of her!!!

Albany High - Go Cougars!