JAN

[Guest guest]

It looks like Jan's new volunteer job is going to happen. I seem to be

the one who figured oute what was going on and saw the opportunity.

Jan will be working in a community adult program with a developmentally

delayed population which needs a lot of help. She will be a volunteer,

but will have a job description and be one of the staff rather than the

clients.

There are 20 or so adults in the program and Jan does feel comfortable

and also that she is one of the cartakers and not one of the clients. I

got this settled by phone last week. It seems like a win all around.

Jan's current day program loses her funding three days a week, but the

get credit for placing one of their clients, which is supposed to be

their aim, even if it seldom happens. The funding agency (distributing

state funds) was worried that Jan would be in two programs, but they are

very happy with Jan being in the second one as a volunteer. The woman

in charge of the program where Jan will be working is happy with it.

Jan will see be in a place where the job coaching and mentoring will be

good. Finally, it is what Jan wants to do and it is walking distance

from her apartment.

Yesterday I took Jan back to her place. She's been with us for about

six weeks while we worked on weight control. She met the target and

held it last week, so she is back to her apartment. We then went to a

volunteer work day at the agency where she will be working. I met the

woman I'd known only over the phone who runs the program and some of the

other staff and a few clients. I left with instructions to Jan to walk

home. I'd made sure that she had her cell phone.

Well, she turned left when she started home rather than right and spent

the next few hours on the street where the agency is, but never got back

to the agency to start again. She and I would talk and she'd tell me

the cross street (Google maps really help) and I'd try to get her to go

the wrong direction, but the last call was even farther in the wrong

direction and when I next tried to call, the phone wasn't working.

So for the first time, I called 911 and reported a disoriented young

woman. I was quickly connected to the Palo Alto police and was able to

tell them what she had on and pretty much where she was. A couple of

minutes later I got a call back saying that they had her and were

driving her home.

Today, after lunch, she went out on her own from her apartment and made

a successful round trip, so she will be OK for Tuesday morning when she

has to walk to work.

Independence is what she wants, but sometimes it is hard.

Rick ... dad to 34 year old Jan

[Guest guest]

Thanks. 

The two Austin doctors both said the problem looks very rare and unusual.  The

surgeon even told me to not even consider any Texas doctors. And, he operates

on esophagus’s!

Jan Dolph

Jan

Dear Jan,

I just

reread your original post. You may be at end stage, you are even more

rare/difficult than most. Depending on finances and insurance, I'd

suggest ONLY one of the top ones. Seattle, Cleveland, or LA...

Also and I'd

suggest this, has a surgeon that tried really hard to save the

esophagus, his belief is that it should be saved almost no matter what.

He is in the Bay area. Because he may have slightly different point of

view, I'd suggest talking to him, Isn't it Dr. Campos? I'll look through

her emails and see if that is the right name. It is possible if you head

down the path of removal that you expand your doctor search into the esophageal

cancer doctors because they may be more skilled at saving the esophagus.

YOu have some tough decisions ahead. Probably those are the same doctors

anyway.

310 652

0530 Dr. Fuller's phone. I don't have the other doctors'

numbers.

Sandy

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[Guest guest]

So who did he/she recommend? MD , although a cancer hospital, in Houston is so very highly regarded, I'm surprised they couldn't come up with somone in TX. Dr. Reardon has done some myotomies in HOuston, but at a different hospital, I'd think as many as the Portland doctor has, at least. It is a small group of surgeons that to this well, and they all know each other, it would be interesting who your surgeons refers you to if price and location aren't an obstacle if they don't think they can do it. I'm thinking, but not sure, that IF you are facing a removal, a cancer surgeon would maybe have more expertise, but I'm totally a lay person, no medical school. If you have copies of your last barium swallow, I'd email them to any doctor you are considering and see what you learn. Then call the major ones.

>> Thanks. The two Austin doctors both said the problem looks very rare and> unusual. The surgeon even told me to not even consider any Texas doctors.> And, he operates on esophagus's!> > > > Jan Dolph> > > > Jan> > > > Dear Jan,> > I just reread your original post. You may be at end stage, you are even> more rare/difficult than most. Depending on finances and insurance, I'd> suggest ONLY one of the top ones. Seattle, Cleveland, or LA... > > Also and I'd suggest this, has a surgeon that tried really hard to> save the esophagus, his belief is that it should be saved almost no matter> what. He is in the Bay area. Because he may have slightly different point> of view, I'd suggest talking to him, Isn't it Dr. Campos? I'll look through> her emails and see if that is the right name. It is possible if you head> down the path of removal that you expand your doctor search into the> esophageal cancer doctors because they may be more skilled at saving the> esophagus. YOu have some tough decisions ahead. Probably those are the> same doctors anyway.> > 310 652 0530 Dr. Fuller's phone. I don't have the other doctors' numbers.> > > Sandy> > > > > > > No virus found in this incoming message.> Checked by AVG.> Version: 7.5.518 / Virus Database: 269.21.7/1323 - Release Date: 3/10/2008> 11:07 AM> > > > No virus found in this outgoing message.> Checked by AVG. > Version: 7.5.518 / Virus Database: 269.21.7/1323 - Release Date: 3/10/2008> 11:07 AM>

[Guest guest]

I will be seeing Dr. Pellegrini annually from here on out.

Jan

Jan

the most important thing we try to stress here (maybe it gets lost sometimes) is to have your condition monitored - which you are doing. Too many people were either NOT told by their doctors or CHOOSE to not monitor their condition - being in denial, that's what we really try to discourage - this belief that achalasia can be ignored.I am very happy for you that you have found a doctor who is experienced with A and can help you manage your condition.I'm a firm believer that you need to stay in regular contact with a knowledgeable GI every couple of years - regardless of how you are feeling. I had very few changes in my sypmtoms between my last 'regular' follow up in '05 and my barium and scope this past summer - which showed me that my E was ready for removal.Keep us posted. It will be good to know what you are doing and how you are managing.- in NCachalasia free since

Jan.11

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Saw in one of your posts that mercury toxic people have low iron stores. My son

has low ferritin. Just wondering why that is?

thanks

Pam