Re: Back from Mayo

[Guest guest]

WONDERFUL NEWS!!! Keep up the HOPE and I and I am sure, many others on here, are awaiting more great news!

Debbie en 5-07See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Dear Elaine,

I have been thinking of you and wondering how things were going at

Mayo. I could not be happier than to wake up this morning with your

detailed letter of your encouraging news! Sometimes that Unna Boot

does work wonders, and from your early feedback it looks like you are

one of the patients who will benefit from it.

Please continue to take care of yourself and put your health above

work if need be, at least in the short run.

" Hope is always available to us. When we feel defeated, we need only

take a deep breath and say, " Yes, " and hope will reappear. -- Monroe

Forester "

Love,

idio. EN '68

[Guest guest]

hey elaine,

i was thinking of you yesterday and was hoping for a report and it is

a good report! i am sooo happy for you. so let me understand,

eliminating some meds, maybe more but added the boot thingy. hmmm.

okay. this should be interesting. you know what keeps mine in

check? remicade and mtx...that's interesting also. but everyone is

different. i hope they also consider the long term maintenance.

that might be tough because you have been on so many things. you

know what works for maintenance may not be the same as the short

term? so that will be another interesting aspect to this whole

thing. yeah, you have a long road to go yet, prolly much further

than you can immagine (the maintenance thing is another full leap and

bound as compared to " just getting it under control " ,)but dog-on, i

hope you are at the start line now. sounds like you are if you have

felt improvement already. there is no mistaking that! i am so happy

i could do cart wheels!!!!!!!!!!

love,

jeff

cd,

pg,

+~~whatever....

>

> Group,

> Thanks, again, for all of the well-wishes last week when I was

> visiting the Mayo Clinic.

> I would like to report that the Mayo Clinic was outstanding in

every

> aspect of the word. When I was wheeled into the facility, I felt a

> weight lifted, as I decided to just give it up to them. I decided

> that I was at the last place that could possibly help me.

> I asked for a sign, and I had a tangible right in front of me. It

> was a beautiful painting with the word HOPE in the center of the

work

> of art. I cried knowing that this must be 'it.'

> The doctors were awesome and gave me a lot of input. I had two

> biopsies and many blood tests, some of which I am still awaiting

> results on, but it was revealed that my meds had to be changed,

that

> my blood clots too quickly, and that my white cells and sodium

levels

> are very high.

> I was also given a Unna Boot, which seems to have helped already.

My

> legs were so swollen that, as it was explained, the wounds did not

> have a chance to heal. In two days, the swelling had subsided and

> the wounds appeared to have improved. I also am not in as much

pain

> now as I had been before this was applied.

> The best thing about the Unna Boot is that I do not have to change

> dressings every day, which has reduced the time it takes to get

> dressed by 1.5 hours. Of course, I hate the smell that emits from

> the bandaging, but it is a small sacrafice if this works. I have

to

> get the cast changed every week, so I will be anxious to see how

> things look this Thursday when I get this cast off and another

> applied.

> The doctors at the Mayo Clinic are going to work directly with the

> doctors at Stanford. I will not go back to the doctors who have

> treated me, or not treated me, over the last 11 months. I do feel

as

> if there might be light at the end of the tunnel now that is not

> going to be a train.

> Both Mayo and Stanford teams seem confident that they can get a

> handle on this, so my spirits have been lifted.

> I feel as if I am starting at the beginning again, but maybe I had

to

> hit bottom before being forced to seek help outside of the core

> doctors that I had been relying on. I am on Dapsone now, along

with

> Methatrexate, 25 mgs. of Prednisone, Folic Acid, Protonix, Fosamax,

> and Celebrex. I am still using Protopic on the wounds themselves.

> Given the results we are waiting on, I may be put on an IV called

> Imibuglobin (uncertain of spelling).

> I have been taken off of Remicade, Enbrel, Minocycline, and

> Plaquinil. Methatrexate may also be eliminated, as Dapsone is a

> similar drug. The Vicodin is still available for pain, but I have

> not had one in two days, so that is progress in itself.

> Thanks, again, for all of your advice and support. I appreciate it

> all.

> Elaine

> PG '03

>

[Guest guest]

Hey all, thanks for the responses. Jeff, be careful with the

cartwheels :-)

I do feel as if I am finally at the start line. A real shame after

almost a year of this, but I can only look forward now, right?

I want to report more good news -- I visited the lung doctor

yesterday to get my results from a PET scan, which was done over two

weeks ago.

The basis of the study was that I have had fluid in my lungs since my

surgery and PG outbreak on 10/10/06. Doctors did not want to drain

the fluid, as they feared that I could have another PG outbreak with

a tap of the lung. Well, we hoped that the Remicade, Enbrel, and

Prednisone would diminish the fluid, and it finally did; however, the

CAT scan showed that I had a mass.

I had two doctors, a tech, and a nurse tell me that it was cancer and

that chemo would be the next step. I even was told before the PET

scan that it was being done to determine how long life would be. I

had the PET scan and have worried about this since that time. Well,

the result presented to me yesterday was that the mass is scar

tissue. I was so relieved that I cried, almost as if the news were

cancer.

The doctor does not know if the scar tissue was caused by the fluid,

an infection, or PG. I really did not know that PG could cause that,

but I have a lot to learn. Jeff, maybe you could enlighten me with

this new aspect of PG.

I also went to a new wound care person at Stanford today, and it was

awesome. He cleaned my leg and foot -- finally, and used a different

approach to covering the wounds. He applied Protopic first, and then

covered the wounds with a netting material designed to gently take

the old skin away. He covered that with a sponge-like material to

absorb the fluid away from the wound bed, and then wrapped my leg and

foot with a compression bandaging.

It hurt at first, but it has subsided. What is cool is that he is

going to see me tomorrow afternoon to ensure that I am not in pain

over the weekend. He is also going to see me often for pain

management and to help mitigate the smell (I am very self-concsious

of that). Oh, Steve , the wound guy, is very familiar PG but

even more familiar with EN. So, if anyone is in the Bay Area, you

may want to see him. Truly, I was impressed with his knowledge,

compassion, and kindness.

Thanks, again, for your support.

Elaine

PG

> >

> > Group,

> > Thanks, again, for all of the well-wishes last week when I was

> > visiting the Mayo Clinic.

> > I would like to report that the Mayo Clinic was outstanding in

> every

> > aspect of the word. When I was wheeled into the facility, I felt

a

> > weight lifted, as I decided to just give it up to them. I

decided

> > that I was at the last place that could possibly help me.

> > I asked for a sign, and I had a tangible right in front of me.

It

> > was a beautiful painting with the word HOPE in the center of the

> work

> > of art. I cried knowing that this must be 'it.'

> > The doctors were awesome and gave me a lot of input. I had two

> > biopsies and many blood tests, some of which I am still awaiting

> > results on, but it was revealed that my meds had to be changed,

> that

> > my blood clots too quickly, and that my white cells and sodium

> levels

> > are very high.

> > I was also given a Unna Boot, which seems to have helped

already.

> My

> > legs were so swollen that, as it was explained, the wounds did

not

> > have a chance to heal. In two days, the swelling had subsided

and

> > the wounds appeared to have improved. I also am not in as much

> pain

> > now as I had been before this was applied.

> > The best thing about the Unna Boot is that I do not have to

change

> > dressings every day, which has reduced the time it takes to get

> > dressed by 1.5 hours. Of course, I hate the smell that emits

from

> > the bandaging, but it is a small sacrafice if this works. I have

> to

> > get the cast changed every week, so I will be anxious to see how

> > things look this Thursday when I get this cast off and another

> > applied.

> > The doctors at the Mayo Clinic are going to work directly with

the

> > doctors at Stanford. I will not go back to the doctors who have

> > treated me, or not treated me, over the last 11 months. I do

feel

> as

> > if there might be light at the end of the tunnel now that is not

> > going to be a train.

> > Both Mayo and Stanford teams seem confident that they can get a

> > handle on this, so my spirits have been lifted.

> > I feel as if I am starting at the beginning again, but maybe I

had

> to

> > hit bottom before being forced to seek help outside of the core

> > doctors that I had been relying on. I am on Dapsone now, along

> with

> > Methatrexate, 25 mgs. of Prednisone, Folic Acid, Protonix,

Fosamax,

> > and Celebrex. I am still using Protopic on the wounds

themselves.

> > Given the results we are waiting on, I may be put on an IV called

> > Imibuglobin (uncertain of spelling).

> > I have been taken off of Remicade, Enbrel, Minocycline, and

> > Plaquinil. Methatrexate may also be eliminated, as Dapsone is a

> > similar drug. The Vicodin is still available for pain, but I

have

> > not had one in two days, so that is progress in itself.

> > Thanks, again, for all of your advice and support. I appreciate

it

> > all.

> > Elaine

> > PG '03

> >

>

[Guest guest]

Dear Elaine,

You had me on the edge of my chair! I almost started to cry too. What

a relief!!! I'm anticipating that your story will have a very happy

ending; and after all that you have been through, Elaine, you truly

deserve it.

Please invite Steve to our Group. He most certainly would be a

great asset to all of us. And where else is he going to find so many

appreciative EN and PGers? I promise we will not overwhelm him with

questions.

Love,

idio. EN since. 68

[Guest guest]

elaine,

i be careful hee, hee.

i know, i went thru this for months and it got to the point of

getting admitted to u of m. pretty common as you know.

and yes, pg can effect ANY organ, including internal organs. so,

with that and the extent of your pg, i have no doubt in my mind you

are looking at some internal pg. it doesn't sound like the persons

studing your result considered that. why should they? pg is rare

and even more rare internally, buttttttttttt with the severity of

your case, i think it is a given that they consider this! keep in

mind.......my BIGGEST piece of advice on this moving forward.....long

term care and treatment. has to be systemic and effective. if what

they are doing is working, they need to move to a plan for long term

strategy pretty soon. i might say, next visit, plant a seed in their

brains on this. you/they may never figure out root cause, i would

not hold out for that event, however they should be looking at a

strategy to understand " what makes this thing tick " . this is the

frustrating part of this. a lot of trial and error sometimes. they

don't have to move now, but they need to be forward thinking about

this now.

the " netting " type material dressing almost sounds like the one used

on me. i also had a really good pt that knew more about pg than most

derms. did you happen to see the name? is it fibracol plus by

johnson & johnson? it is a collagen wound dressing with alginate.

this dressing looks more like foam and is really light weight. white

in color. i am sure there are many variations that lend themselves

to a wound of this type. again, wound care, sooooooooo important,

especially in severe cases. pt has to be extremely knowledgeable

about pg. are you getting whirlpool baths? sounds like you have all

the right experts. does this not make the biggest difference in the

world? this is the very thing i have been preaching on this forum

since i have been here, rebecca will back me up on this. playing

around with local docs and trying to go " all natural " blah, blah,

blah, might work for some, but severe cases, almost never. i will

argue that point to the end of the earth. pg will get you when it

decides to, you have to be willing to go get the big guns, its either

that or suffer. i don't think you or i would ever agree suffering is

even an option!

so, you have had so much good news this week cartwheels won't be

enough. what else could i do? (and not get hurt!)

love,

jeff

pg,

cd,

+ ~WHAT~ever

>

> Hey all, thanks for the responses. Jeff, be careful with the

> cartwheels :-)

> I do feel as if I am finally at the start line. A real shame after

> almost a year of this, but I can only look forward now, right?

> I want to report more good news -- I visited the lung doctor

> yesterday to get my results from a PET scan, which was done over

two

> weeks ago.

> The basis of the study was that I have had fluid in my lungs since

my

> surgery and PG outbreak on 10/10/06. Doctors did not want to drain

> the fluid, as they feared that I could have another PG outbreak

with

> a tap of the lung. Well, we hoped that the Remicade, Enbrel, and

> Prednisone would diminish the fluid, and it finally did; however,

the

> CAT scan showed that I had a mass.

> I had two doctors, a tech, and a nurse tell me that it was cancer

and

> that chemo would be the next step. I even was told before the PET

> scan that it was being done to determine how long life would be. I

> had the PET scan and have worried about this since that time.

Well,

> the result presented to me yesterday was that the mass is scar

> tissue. I was so relieved that I cried, almost as if the news were

> cancer.

> The doctor does not know if the scar tissue was caused by the

fluid,

> an infection, or PG. I really did not know that PG could cause

that,

> but I have a lot to learn. Jeff, maybe you could enlighten me with

> this new aspect of PG.

> I also went to a new wound care person at Stanford today, and it

was

> awesome. He cleaned my leg and foot -- finally, and used a

different

> approach to covering the wounds. He applied Protopic first, and

then

> covered the wounds with a netting material designed to gently take

> the old skin away. He covered that with a sponge-like material to

> absorb the fluid away from the wound bed, and then wrapped my leg

and

> foot with a compression bandaging.

> It hurt at first, but it has subsided. What is cool is that he is

> going to see me tomorrow afternoon to ensure that I am not in pain

> over the weekend. He is also going to see me often for pain

> management and to help mitigate the smell (I am very self-concsious

> of that). Oh, Steve , the wound guy, is very familiar PG

but

> even more familiar with EN. So, if anyone is in the Bay Area, you

> may want to see him. Truly, I was impressed with his knowledge,

> compassion, and kindness.

> Thanks, again, for your support.

> Elaine

> PG

[Guest guest]

Oh Jeff, you are the perfect balance of clinical knowledge peppered

with comedy. I just love your messages!!!

I saw the wound care guy again today, and we saw improvement in just

12 hours! I was so thrilled. Yes, the sponge and netting that you

speak of is exactly what he used. He also stopped the Protopic and

changed it up to Silvadene, and I believe that you addressed this

before, as well.

We are going to try compression and Silvadene over the weekend and

see how it goes. We are also going to do water from the shower twice

a day to see if it gets rid of some of the white cell matter before

we consider debriding. I will do that twice a day over the weekend.

You are so right in that it makes a heck of a difference to have the

right people involved. I am changing all of my doctors now,

including my Primary. We are now looking for someone to do just as

you say and consider the long term care and monitoring of this

thing. Since my lung was affected, that scares me to death (oops,

gotta watch saying that now), so I want to make sure that things are

being looked at properly.

I really do finally feel confident that we can get a handle on this.

I know that it will take a very long time, but that is okay, as I

have been patient (too patient) for too long.

My work team commented today that I looked good over the last couple

of days. That made me feel so much better and validated a switch in

my attitude and mood. Not to brag, but we had a big recognition

event, and my director took the microphone and asked me to stand

(that was kind of hard). She said that she appreciated all that I do

and went on to say that I have been an inspiration to everyone given

what I have gone through.

I said a few words about PG and even included EN to say that we face

difficult challenges but try every day to contribute and try and 'be

ourselves.' Again, those types of events, while far and few, do make

me feel better and 'normal.'

Thanks, again, for everything. I am just hoping that the news will

continue to be positive. I wish you and all of the group a restful

and painless weekend.

Love,

Elaine

PG/RA '03

> >

> > Hey all, thanks for the responses. Jeff, be careful with the

> > cartwheels :-)

> > I do feel as if I am finally at the start line. A real shame

after

> > almost a year of this, but I can only look forward now, right?

> > I want to report more good news -- I visited the lung doctor

> > yesterday to get my results from a PET scan, which was done over

> two

> > weeks ago.

> > The basis of the study was that I have had fluid in my lungs

since

> my

> > surgery and PG outbreak on 10/10/06. Doctors did not want to

drain

> > the fluid, as they feared that I could have another PG outbreak

> with

> > a tap of the lung. Well, we hoped that the Remicade, Enbrel, and

> > Prednisone would diminish the fluid, and it finally did; however,

> the

> > CAT scan showed that I had a mass.

> > I had two doctors, a tech, and a nurse tell me that it was cancer

> and

> > that chemo would be the next step. I even was told before the

PET

> > scan that it was being done to determine how long life would be.

I

> > had the PET scan and have worried about this since that time.

> Well,

> > the result presented to me yesterday was that the mass is scar

> > tissue. I was so relieved that I cried, almost as if the news

were

> > cancer.

> > The doctor does not know if the scar tissue was caused by the

> fluid,

> > an infection, or PG. I really did not know that PG could cause

> that,

> > but I have a lot to learn. Jeff, maybe you could enlighten me

with

> > this new aspect of PG.

> > I also went to a new wound care person at Stanford today, and it

> was

> > awesome. He cleaned my leg and foot -- finally, and used a

> different

> > approach to covering the wounds. He applied Protopic first, and

> then

> > covered the wounds with a netting material designed to gently

take

> > the old skin away. He covered that with a sponge-like material

to

> > absorb the fluid away from the wound bed, and then wrapped my leg

> and

> > foot with a compression bandaging.

> > It hurt at first, but it has subsided. What is cool is that he

is

> > going to see me tomorrow afternoon to ensure that I am not in

pain

> > over the weekend. He is also going to see me often for pain

> > management and to help mitigate the smell (I am very self-

concsious

> > of that). Oh, Steve , the wound guy, is very familiar PG

> but

> > even more familiar with EN. So, if anyone is in the Bay Area,

you

> > may want to see him. Truly, I was impressed with his knowledge,

> > compassion, and kindness.

> > Thanks, again, for your support.

> > Elaine

> > PG

>

[Guest guest]

Dear Elaine and Group,I said a few words about PG and even included EN to say that we face difficult challenges but try every day to contribute and try and 'be ourselves.' Thank you for that, Elaine.I most definitely feel that all of us are making a difference, and if we had better health, we could contribute even more. This past week was a very happy one for me. Lenny, the boyfriend I had before I met my Hubby, Steve

tracked me down. We talked about 2 hours on the phone--lots to catch up on after 30 yrs. Lenny inherited polycystic kidney disease and required a kidney transplant. His only sibling, his sister, was a match. With the help of prednisone and other drugs he is alive today, 7 yrs. post kidney transplant surgery. He is a retired math teacher now on disability, but he continues to pursue his artistic talents. Look at his work:http://www.lenrachlin.comHe deals with pain and has other health challenges, but he continues to create artistic works of beauty. So Group, I acknowledge you for continuing to do your best in

spite of EN or PG. I am inspired by all of you. What keeps me pushing for research to find better treatments and cures is the fact that I know we can all achieve even more when our health improves to where EN or PG are no longer dragging us down.I echo Elaine in wishing Everyone a Happy and painfree weekend!Love, idio. EN '68 You can help Erythema Nodosum Research. Just go to www.goodsearch.com and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum!

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.