Dr. Palmer

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In a message dated 1/3/2003 10:52:51 PM Central Standard Time, tdcc2000@... writes:

JOANNE - I was reading in Palmer's book about PCS and how PCS and

Celiac Sprue respond to the gluten free diet. Have you heard of this? I

KNOW Celiac Sprue must have a gluten free diet, but PCS? This is very

interesting!

I know Dr. Palmer personally. She was my hepatologist for a few months. I also sat on the executive committee on the Board of Directors of the New York Chapter of the American Liver Foundation as Treasurer for 2 years (she was on the medical advisory board). She is an interesting person to say the least. Had some bizarre interactions with her......bizarre...as did my husband.......just seeing her name brings back some weird memories and a few laughs......

[Guest guest]

Barb,

I do get those injections...I opt to do them over prednisone. I go about every 2 months. Though, because of surgery, I have to be on the taper and it's very difficult.

Isn't it just amazing how every samterite is different? I think that we all have our own little 'special' footnote to our 3 common factors. I feel fortunate that I don't need to take too many medications to stay well. Of course the smell and taste absence is quite hard, especially around the holidays (though Dr. Palmer did restore this with the last surgery...keeping my fingers crossed this time!) I've had quite a few scares with elevated LFTs that we're trying to figure out....Maybe CSS? Liver disease? All kind of goes back to good old Samters....

Have you heard of Dr. Atkins with PENN (not the protein diet man : ) )? I will see him on the 23rd at his Radnor office. He's an allergy/immunologist. Have you ever been to one?

Here is my home email. I'd love to chat sometime and I'll give you my number then! Do you mind me asking how old you are and how long you have had Samters? I'm 35, have 2 boys ages 5 & 2... I was diagnosed with Samters soon after my oldest was born. Never had asthma, sinus problems, or anything before children. What we do for our kids!!!

Stay well,

Joan

joaniem@...

Dr. Palmer

Joan-I see Dr. Kennedy every 4 weeks or so. Depending on my nasal state, he has been injecting Kenalog 10mg directly into my sinus tissues. I know Dr. Palmer does this as well. Have you had any Kenalog injections?I did stay overnight each time I was operated on at PENN. The last surgery required quite of bit of involvement from Endocrinology. As I mentioned I have adrenal insuffiency and surgery is considered stress on the body. I required various injections of Solu-Cortef before and after surgery. They needed to monitor me closely for signs of ian crisis. I obviously would prefer to come right home post op, but in my case I was not allowed. If it is too much for your husband to handle if an emergency arises or you live far enough from HUP, I would stay.Dr. Cohen is a wonderful doc as well. He is over at the VA now but I know he is working on a genetic study. He keeps saying he wants blood samples from my immediate family. They are lining up willing to donate to the cause.I should be back at PENN in December. Hopefully we can catch up. I actually did meet a Samter patient at the office one day. My best friend from college (who lives two hours north of me) went out with a group of mothers to dinner one night. One woman mentioned her terrible bout with sinus issues and her recent surgery at PENN with Dr. Kennedy. We exchanged emails via my friend, comparing notes and case histories. Turns out, Doctors and nurses at PENN would tell me of a patient with a similiar history to mine. They didn't give her name due to HIPPA regs. Here, it was this woman they were referring to that I had been in touch with from my girlfriend. We had appointments on the same day at PENN back in May so we met up. It was great to finally met someone who has this condition. Again, wish you the best on Friday.Barb V -- In samters , "Joanie Miles" <joaniem@p...> wrote:> Hi Barb,> > I've heard about Dr. Kennedy through Dr. Palmer. I had actually emailed Dr. Cohen with a list of questions pertaining to Samters and their study. I would imagine that someday ASA desensitization will come to PENN...just a matter of time. Dr. Palmer also takes his time with surgery...last one with him in 2003 was 4-5 hours as well. He doesn't think that this one will be as long though.> > It's uncertain that I will have a follow up on Monday. Dr. Palmer's wife just had a baby on the 31st and he has taken the 2 weeks after my surgery off from operating (though he said he'd come in for my debridement). I'll let you know what they date is though. How often do you go in to see Dr. Kennedy? It would be great to meet up with you, even if it doesn't work out next week. I'll let you know when I know something. Incidentally, does Dr. Kennedy keep you overnight after surgery? Jim is fighting me on this one. I want to come home...he's a little more leery about that idea...> > Thanks,> Joan>

[Guest guest]

Never had asthma, sinus problems, or anything before children. What

we do for our kids!!!

Joanie, I wonder what the numbers show for

women/samters/childbearing. I too never had any signs of this illness

until preggers with my third child...a girl. I then lost a child

during my fifth month due to a drug called Marax...very dangerous and

I don't even know if it is still on the market. I was hospitalized

most of my pregnancy with my next daughter, who was and is perfect.

My next two pregnancies were wonderful and my symptoms

cleared...again I had boys. It seems when I carry a girl-child I am

sick and not with a boy-child. I asked it it had anything to do with

hormones (my crazy theory being testosterone somehow keeps me symptom

free) and was told " who knows " . Sigh. Trudy.

[Guest guest]

Joan:One of the most common reasons for liver enzyme elevation and often overlooked is 'fatty liver' Frequent use of prednisone ( injectable or oral or IV) can be the cause. It takes a liver biopsy to be sure. I am sure your docs have done all the viral tests for different types of hepatitis though. Carol

Dr. Palmer

Joan-I see Dr. Kennedy every 4 weeks or so. Depending on my nasal state, he has been injecting Kenalog 10mg directly into my sinus tissues. I know Dr. Palmer does this as well. Have you had any Kenalog injections?I did stay overnight each time I was operated on at PENN. The last surgery required quite of bit of involvement from Endocrinology. As I mentioned I have adrenal insuffiency and surgery is considered stress on the body. I required various injections of Solu-Cortef before and after surgery. They needed to monitor me closely for signs of ian crisis. I obviously would prefer to come right home post op, but in my case I was not allowed. If it is too much for your husband to handle if an emergency arises or you live far enough from HUP, I would stay.Dr. Cohen is a wonderful doc as well. He is over at the VA now but I know he is working on a genetic study. He keeps saying he wants blood samples from my immediate family. They are lining up willing to donate to the cause.I should be back at PENN in December. Hopefully we can catch up. I actually did meet a Samter patient at the office one day. My best friend from college (who lives two hours north of me) went out with a group of mothers to dinner one night. One woman mentioned her terrible bout with sinus issues and her recent surgery at PENN with Dr. Kennedy. We exchanged emails via my friend, comparing notes and case histories. Turns out, Doctors and nurses at PENN would tell me of a patient with a similiar history to mine. They didn't give her name due to HIPPA regs. Here, it was this woman they were referring to that I had been in touch with from my girlfriend. We had appointments on the same day at PENN back in May so we met up. It was great to finally met someone who has this condition. Again, wish you the best on Friday.Barb V -- In samters , "Joanie Miles" <joaniem@p...> wrote:> Hi Barb,> > I've heard about Dr. Kennedy through Dr. Palmer. I had actually emailed Dr. Cohen with a list of questions pertaining to Samters and their study. I would imagine that someday ASA desensitization will come to PENN...just a matter of time. Dr. Palmer also takes his time with surgery...last one with him in 2003 was 4-5 hours as well. He doesn't think that this one will be as long though.> > It's uncertain that I will have a follow up on Monday. Dr. Palmer's wife just had a baby on the 31st and he has taken the 2 weeks after my surgery off from operating (though he said he'd come in for my debridement). I'll let you know what they date is though. How often do you go in to see Dr. Kennedy? It would be great to meet up with you, even if it doesn't work out next week. I'll let you know when I know something. Incidentally, does Dr. Kennedy keep you overnight after surgery? Jim is fighting me on this one. I want to come home...he's a little more leery about that idea...> > Thanks,> Joan>

[Guest guest]

next time I have a flare up, they plan to do a biopsy. eosinophils are up most of the time now....

joan

Dr. Palmer

Joan-I see Dr. Kennedy every 4 weeks or so. Depending on my nasal state, he has been injecting Kenalog 10mg directly into my sinus tissues. I know Dr. Palmer does this as well. Have you had any Kenalog injections?I did stay overnight each time I was operated on at PENN. The last surgery required quite of bit of involvement from Endocrinology. As I mentioned I have adrenal insuffiency and surgery is considered stress on the body. I required various injections of Solu-Cortef before and after surgery. They needed to monitor me closely for signs of ian crisis. I obviously would prefer to come right home post op, but in my case I was not allowed. If it is too much for your husband to handle if an emergency arises or you live far enough from HUP, I would stay.Dr. Cohen is a wonderful doc as well. He is over at the VA now but I know he is working on a genetic study. He keeps saying he wants blood samples from my immediate family. They are lining up willing to donate to the cause.I should be back at PENN in December. Hopefully we can catch up. I actually did meet a Samter patient at the office one day. My best friend from college (who lives two hours north of me) went out with a group of mothers to dinner one night. One woman mentioned her terrible bout with sinus issues and her recent surgery at PENN with Dr. Kennedy. We exchanged emails via my friend, comparing notes and case histories. Turns out, Doctors and nurses at PENN would tell me of a patient with a similiar history to mine. They didn't give her name due to HIPPA regs. Here, it was this woman they were referring to that I had been in touch with from my girlfriend. We had appointments on the same day at PENN back in May so we met up. It was great to finally met someone who has this condition. Again, wish you the best on Friday.Barb V -- In samters , "Joanie Miles" <joaniem@p...> wrote:> Hi Barb,> > I've heard about Dr. Kennedy through Dr. Palmer. I had actually emailed Dr. Cohen with a list of questions pertaining to Samters and their study. I would imagine that someday ASA desensitization will come to PENN...just a matter of time. Dr. Palmer also takes his time with surgery...last one with him in 2003 was 4-5 hours as well. He doesn't think that this one will be as long though.> > It's uncertain that I will have a follow up on Monday. Dr. Palmer's wife just had a baby on the 31st and he has taken the 2 weeks after my surgery off from operating (though he said he'd come in for my debridement). I'll let you know what they date is though. How often do you go in to see Dr. Kennedy? It would be great to meet up with you, even if it doesn't work out next week. I'll let you know when I know something. Incidentally, does Dr. Kennedy keep you overnight after surgery? Jim is fighting me on this one. I want to come home...he's a little more leery about that idea...> > Thanks,> Joan>