Today begins National Donor Sabbath Weekend. Being a 3-time transplant
recipient. All my online stores & the Christmas Bazaar at the Cultural Center
will offer 10% donation of all sales Friday & Sunday, 100% on Saturday will be
donated to The Florida Foundation for Lung Transplant Research. Please spread
the word and join me in honoring my 3 organ donors and their families.


Please take a moment from you weekend and speak to one person about organ
donation and tell them your story. In this way we can all honor our
donors/families or get a donor card signed so a candidate can join with us next
year and honor their donor.

Update on the generic cellcept:

Recall that my impression was that I would trust the judgment of my transplant
team.  I have been on the generic version for about a week now.  My coordinator
called to have me get a blood test to measure the morning/fasting levels
(trough) of this drug.

He said the drug will be identical, but is uncertain if the generic will
transfer to the blood stream at the same rate.  Depending on my level, the
dosage will be adjusted.

I will keep you posted on my result, but it might be a question for your doctor,
if they are leading you in that direction.

Best regards.
--- In lungtransplant@yahoogroups.com, "Larry" <johndoelcf1@...> wrote:
>
> I just learned that my next refill will be the generic as well.  As I see I
left the decision to the transplant coordinator.  I did not think there should
be a problem, but if there is, he should be in a position to know.
>
> I may be placing too much faith in the transplant centers' emphasis on 1.3 & 5
year survival rates!!!
>
> Larry
>
> --- In lungtransplant@yahoogroups.com, "anana1872" <anana1872@> wrote:
> >
> > My pharmacy just sent me generic "Cellcept", made by Apotex. Has anyone else
used generic mycophenolate mofetil? Is that ok?
> > I'm nervous...
> > Obviously I'll ask my doc too.
> > Thanks, ANA Stenzel, DLT
> >
>

I just learned that my next refill will be the generic as well.  As I see I left
the decision to the transplant coordinator.  I did not think there should be a
problem, but if there is, he should be in a position to know.

I may be placing too much faith in the transplant centers' emphasis on 1.3 & 5
year survival rates!!!

Larry

--- In lungtransplant@yahoogroups.com, "anana1872" <anana1872@...> wrote:
>
> My pharmacy just sent me generic "Cellcept", made by Apotex. Has anyone else
used generic mycophenolate mofetil? Is that ok?
> I'm nervous...
> Obviously I'll ask my doc too.
> Thanks, ANA Stenzel, DLT
>

I know it's out there, but my docs won't let me take it. I've had too many
transplants to take a chance.
I'd be petrified!


--- In lungtransplant@yahoogroups.com, "anana1872" <anana1872@...> wrote:
>
> My pharmacy just sent me generic "Cellcept", made by Apotex. Has anyone else
used generic mycophenolate mofetil? Is that ok?
> I'm nervous...
> Obviously I'll ask my doc too.
> Thanks, ANA Stenzel, DLT
>

Ana,
DME depends on  your private insurance coverage. AS for Medicare:
Medicare may elect to purchase you a nebulizer or rent one for you to use. There
may be some expense involved with the rental and usage.
The antibiotics will be covered under Part D Prescription -depending on the plan
chosen. If your meds are not covered then your physician will have to apply for
a non-formulary coverage stating why you need it. The charges will depend on the
provider and I can guarantee it will more than likely put you in the coverage
gap. I had to take Levacquin and Zithromax for 9 months and 4 of those I paid
$915 a month to get a mega dose of 30 pills each... My copay before that was
$186 a month. The good side to this is once you get out of the gap (providing
you survive financially) copays are 5% because you'd then be in the major
medical coverage part of the plan.


Hope this helps...

Bette



--- In lungtransplant@yahoogroups.com, "anana1872" <anana1872@...> wrote:
>
> Hi,I would like to inquire about DME (durable medical equipment)coverage for 
nebulizers after transplant. As you know some of us have lung infections that
are treated by inhaled antibiotics. This requires getting nebulizers and an air
compressor so we can do these treatments.
> Are nebulizers and air compressors covered automatically when the medications
are prescribed? How successful has coverage been for this equipment? I suppose
it would depend on your insurance, but I would like to know your experience.
>
> If you already have a conventional nebulizer (ie Devilbiss or Pari) , did your
insurance cover the specialty nebulizer like the eFlow Have you had to self-pay
because insurance denied coverage ? Anybody with experience with MediCare?
>
> Please respond to: anana1872@...
>
> Thanks, ANA STENZEL
>

My pharmacy just sent me generic "Cellcept", made by Apotex. Has anyone else
used generic mycophenolate mofetil? Is that ok?
I'm nervous...
Obviously I'll ask my doc too.
Thanks, ANA Stenzel, DLT

I had a postive experience in this regard.  I was originally prescribed an
ongoing "nebulized" treatment, and a nebulizer was delivered to me at no charge
-- presumably paid in full by my insurance.  (I admit it seems that I have very
good insurance -- at least so far!)

Larry



--- In lungtransplant@yahoogroups.com, "anana1872" <anana1872@...> wrote:
>
> Hi,I would like to inquire about DME (durable medical equipment)coverage for 
nebulizers after transplant. As you know some of us have lung infections that
are treated by inhaled antibiotics. This requires getting nebulizers and an air
compressor so we can do these treatments.
> Are nebulizers and air compressors covered automatically when the medications
are prescribed? How successful has coverage been for this equipment? I suppose
it would depend on your insurance, but I would like to know your experience.
>
> If you already have a conventional nebulizer (ie Devilbiss or Pari) , did your
insurance cover the specialty nebulizer like the eFlow Have you had to self-pay
because insurance denied coverage ? Anybody with experience with MediCare?
>
> Please respond to: anana1872@...
>
> Thanks, ANA STENZEL
>

Hi,I would like to inquire about DME (durable medical equipment)coverage for 
nebulizers after transplant. As you know some of us have lung infections that
are treated by inhaled antibiotics. This requires getting nebulizers and an air
compressor so we can do these treatments.
Are nebulizers and air compressors covered automatically when the medications
are prescribed? How successful has coverage been for this equipment? I suppose
it would depend on your insurance, but I would like to know your experience.

If you already have a conventional nebulizer (ie Devilbiss or Pari) , did your
insurance cover the specialty nebulizer like the eFlow Have you had to self-pay
because insurance denied coverage ? Anybody with experience with MediCare?

Please respond to: anana1872@...

Thanks, ANA STENZEL

Thanks to all.  And I find it odd there are so many Larry's here.  I'm wondering
if there is an alliteration policy.  But even so, cant we have a Leo or a Lloyd
or something?

I know the math for medicare being two years after getting on ssa disability. 
My application is pending.  However, I see on the ssn website that a lung
transplant gets you a year, no questions asked.

My question to the group, is how many are on ssa disability?  And if the basis
for the disability is the past transplant or some other ailment?

I really have no fear in this process but for not knowing how ssa disability
works, if I will qualify long term, etc.  As long as I can get medicare, I am in
good shape.  If not.....  "ick"

thanks

Larry

Hi Larry,
What a surprise my husband is named Larry too!
Anyway, I've been on and off SSD for the last 29 years.
I attempted to convert my Cobra policy but due to Medicare leglislation we are
not eligible. Since I'm a "disabled child" (since 17) I'm disqualified for a
supplement. However,I've been doing ok with Medicare AB & D. Not so thrilled
with D and my congressman knows it.
If you're not on SSD (social security disability) they can make your disability
time retroactive to when you first became disabled so your wait time for
Medicare is less. THere is also a 6 month wait for SSD, so that can be decreased
as well.

I've been lobbying to change Medicare legislation for many years and regularly
send faxes/letters and make calls to all politicians.
The main issue I see for you at this time is: Medicare Part B will assist you
with your immunosuppression if they pay for your transplant. If not then you'll
have to find a Part D provider who will. The catch there is the coverage gap ( I
call it the black hole) Been in it, survived it, hated it, and still write about
it.
However if SSD is your only source of income you may be eligible for assistance
with your meds.
I also checked into a Medicare HMO- Humana to be exact-and after I did the
figures it would cost me more to switch.

If anyone has any questions you can always email me privately at
betteluksha@...

PS.... I celebrate 18 years with my first transplant this year.
Have a great day everyone!








--- In lungtransplant@yahoogroups.com, "Larry" <johndoelcf1@...> wrote:
>
> I am new here.
>
> I received a double lung transplant six months ago, after a very fast decline
and a very short wait.  I am doing quite well, at least as far as the breathing
is concerned.  The side effects of the drugs are tough, as are neurologicial
issues from a minor stroke, loss of spinal fluid from epidural, etc.  But hey,
none of that stuff is fatal!
>
> Now I am working hard on rehabilitation.  Doing my weight regimen 3x a week
and at least a four mile walk 5x a week.  I try not to sit on my b*tt too much
on the other two days.
>
> I am 53 years old.  I am currently on disability.  My employer based health
insurance shifts to cobra in august.  I do have concerns as to what happens
longterm.  And if I am picked up by social security and medicare.
>
> Just looking to network with others who have gone through the same.  And to
offer any support to others if I can.
>
> Best regards,
>
> Larry
>

Hello Larry,
First of all congratulations on your transplant and your hard work in keeping
healthy!
As far as your insurance goes, you will be eligible for Medicare 2 years after
you started Social Security disability.  I am assuming you are on SSD.  Make
sure you sign up as soon as you are eligible and get both A & B, plus D if you
want Rx drug coverage.  If you are not yet on Social Security Disability you
should get on it ASAP, especially since the Medicare coverage will be delayed a
couple of more years.
I don't know what state you live in, but here locally we have supplemental
health plans that are great for those of us on Medicare.  It helps pay much of
what Medicare does not.
I don't know all the ins and outs, but our transplant program has a financial
coordinator who helps us to other resources that can help.

Oh, by the way, I will celebrate 3 years with my new lungs next June.  I just
graduated from Technical School, and am looking for a job in the medical
clerical field.  Wish me luck!

Take care,

Doris

--- In lungtransplant@yahoogroups.com, "Larry" <johndoelcf1@...> wrote:
>
> I am new here.
>
> I received a double lung transplant six months ago, after a very fast decline
and a very short wait.  I am doing quite well, at least as far as the breathing
is concerned.  The side effects of the drugs are tough, as are neurologicial
issues from a minor stroke, loss of spinal fluid from epidural, etc.  But hey,
none of that stuff is fatal!
>
> Now I am working hard on rehabilitation.  Doing my weight regimen 3x a week
and at least a four mile walk 5x a week.  I try not to sit on my b*tt too much
on the other two days.
>
> I am 53 years old.  I am currently on disability.  My employer based health
insurance shifts to cobra in august.  I do have concerns as to what happens
longterm.  And if I am picked up by social security and medicare.
>
> Just looking to network with others who have gone through the same.  And to
offer any support to others if I can.
>
> Best regards,
>
> Larry
>

I am new here.

I received a double lung transplant six months ago, after a very fast decline
and a very short wait.  I am doing quite well, at least as far as the breathing
is concerned.  The side effects of the drugs are tough, as are neurologicial
issues from a minor stroke, loss of spinal fluid from epidural, etc.  But hey,
none of that stuff is fatal!

Now I am working hard on rehabilitation.  Doing my weight regimen 3x a week and
at least a four mile walk 5x a week.  I try not to sit on my b*tt too much on
the other two days.

I am 53 years old.  I am currently on disability.  My employer based health
insurance shifts to cobra in august.  I do have concerns as to what happens
longterm.  And if I am picked up by social security and medicare.

Just looking to network with others who have gone through the same.  And to
offer any support to others if I can.

Best regards,

Larry

Mindi,
The IPF coordinator from  UPMC is trying to contact you as well as my friend
John. Please send me your mothers name as well as a contact for you so they can
help you out.

My private email is
BetteLuksha@...




--- In lungtransplant@yahoogroups.com, "sarahn1030" <sarahn1030@...> wrote:
>
> just in need of some advice. My mom has IPF and is 44 years old.  She has had
this disease for a little over 2 years now and has been on the transplant list
now for about 4 months.  She goes to UPMC.  the doctor just old her that she
didn't want to tell her that she only had weeks to live but that it is urgent
that we try to flush out her "T-Cells" and get her further up on the list.  What
am I supposed to think about this.  My mom is dying quickly and it feels as if
they don't want to help her.  I am so mad and bitter about this whole thing.  
Can anyone please help me?
>
> Mindi
>

just in need of some advice. My mom has IPF and is 44 years old.  She has had
this disease for a little over 2 years now and has been on the transplant list
now for about 4 months.  She goes to UPMC.  the doctor just old her that she
didn't want to tell her that she only had weeks to live but that it is urgent
that we try to flush out her "T-Cells" and get her further up on the list.  What
am I supposed to think about this.  My mom is dying quickly and it feels as if
they don't want to help her.  I am so mad and bitter about this whole thing.  
Can anyone please help me?

Mindi

Are you waiting for a lung transplant or recently had one?
If so, read below!
Each year, lung transplantation is a life saving procedure for people with
serious lung diseases.  However, lung transplant recipients are at high risk for
a life threatening complication called chronic rejection.  Chronic rejection is
an immune response that leads to worsening lung function and organ failure.
There are currently no therapies approved to treat chronic rejection. 
Developing a better understanding of chronic rejection and finding ways to
prevent and treat rejection is one of the most important areas for research in
the field of lung transplantation.

The good news is that many of North America's leading lung transplant centers
are currently recruiting patients for a clinical trial to evaluate the effects
of an investigational drug called cyclosporine inhalation solution (CIS).  The
goal of the study, called CYCLIST, is to determine if CIS can safely reduce the
occurrence of chronic rejection and extend life in lung transplant recipients.

Cyclosporine inhalation solution (CIS) is an inhaled formulation of
cyclosporine, an oral medication that has been available for over twenty years
to prevent rejection in transplant recipients.  Inhaling cyclosporine provides a
higher concentration of the drug directly into the lungs.  CIS was originally
developed and studied at the University of Pittsburgh beginning in 1988. 
Scientists have conducted nine preliminary studies in lung transplant recipients
including a study published as the lead article in the New England Journal of
Medicine .

Participants in the CYCLIST study will be making an important contribution to
lung transplant medical research and will be eligible to receive the drug at no
cost for life as long as the drug is still under investigation or is FDA
approved.  You may be eligible for CYCLIST if you are an adult on the waiting
list to receive your first lung transplant or received your first transplant
within the past two months at a participating center.  More information about
the study is available at www.cycliststudy.com or through a participating
transplant center.

California UCSF
Stanford
UCLA New York Columbia
		 Ohio Cleveland Clinic
Colorado U. of Colorado Pennsylvania U. of Pennsylvania
U. of Pittsburgh
Florida Tampa General
U. of Fla Gainesville Texas Baylor, Houston
Illinois Loyola
U. of Chicago Virginia Inova Fairfax
Maryland U. of Maryland Ontario, Canada U. of Toronto
Minnesota U. of Minnesota

If you are a patient advocacy group or member of the media looking for more
information, please contact the study's sponsor APT Pharmaceuticals at
cyclist@...

I am a new member.Dbl Lung/Liver TX in Aug 08 and doing well.  Also
have CF and I am 33yrs young!!!Want to go back to work but I am
wondering if anyone has had success with Medicares back to work
program.  I am concerned about losing my insurance because I am making
too much and I have read over the program but, I am wondering how
peoples experiences have been with it?

Aside from that I am healthy jogging and lifting weights everyday!!!

Cheers,
Andrew

Does anyone know how it works for people after they have been
transplanted when it comes to staying on disability?

Thanks
Andrew

Hey y'all :) My name is Meghann and I've been on the tranpslant list
for a double lung tx for the past 15 years. But i've been inactive on
the list for the past 12. But I'm going through re-evaluation right
now to see if I need to be reactivated. I should find out by the 3rd
week in July. Just wanted to say HI and introduce myself :)

Dear members:
I just wanted to share this announcement with you:


Anabel and Isabel Stenzel are identical twins with cystic fibrosis
from the San Francisco Bay Area. Their recently written memoir, "The
Power of Two: A Twin Triumph over Cystic Fibrosis" was released last
December by the University of Missouri Press. This coming-of-age
story depicts one biracial family's journey raising twins with CF who
ultimately both receive life saving lung transplants as adults. With
candor and humor, the twins poignantly share their symbiotic
relationship, their determination and discipline in the face of a
rigorous medical regimen, and the lessons gained from having CF. They
pay tribute to their CF community and their donor families.
People magazine said "the connectedness of twins shines through" in
this "grippingly honest" memoir.
One CF teen said, "I read your book & I loved it... I now have
realized anything is possible in life even if you do have CF. Nothing
can stop you from living an ordinary life. I now have faith that I
can overcome this disease and enjoy life... This is the best gift
ever." One grandmother of a CF child said, "Your book, the best I've
ever read in my life, has greatly lessened the dread I've been
feeling for the futures of my grandchildren."  Boomer Esiason also
says this is a '"book of hope and a must-read for any parent of a CF
child or any person living with CF."
The book is available at Amazon.com, Barnes & Noble.com and
Borders.com, or directly from the publisher,  The University of
Missouri Press, at http://press.umsystem.edu

Next month, the twins will be traveling around the country to speak
about their story and promote "The Power of Two."  If you have
friends or family who may be interested in hearing their story and
meeting them in person at one of the events planned so far (dates and
locations below), please them know about these events.  You can find
more details at  http://www.stenzeltwins.com/11.html.

Upcoming Bookstore Signings:
April 19: Del Mar, CA (San Diego area)
April 23: Albuquerque, NM
April 30: Baltimore, MD
May 5: Pittsboro, NC (Raleigh/Durham/Chapel Hill area)

Upcoming Presentations/Other Events
April 26: Chicago, IL - CF Family Education Day
April 28: Norfolk, VA - CF Family Education Day
May 1: Fairfax, VA- CF Educational Group
May 3: Gastonia/Charlotte, NC - CFF Great Strides
May 17: Omaha, NE - CF Family Education Day
May 31: Philadelphia, PA - CF Family Education Day

Thank you for your consideration. We hope you enjoy our story!

Anabel and Isabel Stenzel

cherubangelov@...

LITTLEANGEL2CF@...

LITTLEANGEL2CF@...

LITTLEANGEL2CF@...

(This message from a new member did not conform to standard message guidelines
and as a result has been edited to show 4 email addresses. Use at your own
risk.--ED.)

Hi everyone! My husband, a 37 year old with CF, has just learned that
he needs a double lung transplant. He has started all the tests for
acceptance to the program here in Tampa.

I am seeking information and advice from people who have been through
this... what should he/we do in preparation? what should he/we avoid?
any advice about all steps of the process will be welcomed!

Thank you all in advance - look forward to hearing from you!

C.Tyler

Hi Mrs. Tyler!  I'm Doris and I had my double lung transplant last June.  I'm 45 years old and had idiopathic pulmonary fibrosis (scarring of the air sacs, cause unknown).  I won't give any technical advice, other than ask the surgeon who does most of the lung transplants at your hospital.  Actual processes and post-op procedures can vary.  I will say for your husband to do as much as he can to stay in his optimal good health.  He should be active and follow his doctor's advice.  The stronger we are before the surgery, the easier it is afterward.  Maybe I shouldn't use the word "easy", but everything's relative, isn't it?  Do not put your lives on hold waiting for the call.  It won't make it happen any faster.  If there is a pulmonary rehabilitation program in your area, he should take advantage of it.  My program helped me build my knowledge, physical strength, and friendships.  I continue to go for all three reasons.  The nurses who care for us after the surgery appreciate that we know how to deep breathe, purse lip breathe, and stretch the right way.  Please, please, please do this if at all possible!
My biggest fear is the unknown, and if you feel the same, take advantage of the internet for info.  Do your best to weed out the fad cures, diets, and advice you will be exposed to.  Be aware of the not so happy endings, but don't dwell on them.  Focus on the positive, and look forward to the job ahead of the both of you. 
I wish you both all the best and hope to hear more good news in the future!
Doris


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You can visit my husband's website:
www.newlungs.com
It's all there......
JS

To:              lungtransplant@yahoogroups.com
From:            "ctyler122" <ctyler122@...>
Date sent:       Fri, 18 May 2007 02:35:43 -0000
Subject:         [lungtransplant] Seeking Information
Send reply to:   lungtransplant@yahoogroups.com

[ Double-click this line for list subscription options ]

Hi everyone!  My husband, a 37 year old with CF, has just learned
that
he needs a double lung transplant.  He has started all the tests for
acceptance to the program here in Tampa.

I am seeking information and advice from people who have been through

this... what should he/we do in preparation?  what should he/we
avoid?
any advice about all steps of the process will be welcomed!

Thank you all in advance - look forward to hearing from you!

C.Tyler



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______________________________
Copyright (c) 2007 Judith A. Stevens
President, Mica Hill Associates, Inc.
email: jstevens@...
Voice: 610-539-5666
Fax: 610-539-5525

Hi everyone!  My husband, a 37 year old with CF, has just learned that
he needs a double lung transplant.  He has started all the tests for
acceptance to the program here in Tampa.

I am seeking information and advice from people who have been through
this... what should he/we do in preparation?  what should he/we avoid?
any advice about all steps of the process will be welcomed!

Thank you all in advance - look forward to hearing from you!

C.Tyler

Hi,
My name is Andrew and I am 31w/CF.
I have found many things to keep me up and running these past few
years but, now I realize I need a transplant.
Can anyone share their experiences with this process and any
recommendations or any other information. I am a bit concerned about
the process but, I noam realizing I may have no other choice. I am
considering appllying to the program at Duke in North Carolina.
Thanks for any feed back.
Sincerely,
Andrew

__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Hi ! ! !

Greetings from Florida. I haven't been active on the boards for
awhile. My email has been so screwy and during one of my hospital
admissions they accidentally sent my cell phone to laundry. I lost
everyone's names, numbers, emails, addy's, etc.

I am not sure what happened but when we switched to Comcast, the
entire package deal all-in-one, I've had horrible email issues. It
made online courses this semester difficult.

Health wise we are ok. Brad's was pretty sick for awhile and his
kidney's failed for awhile b/c of the IV antibiotics he was on. His
Kidney's are ok now and his lungs are sounding much better. He did
lose a lot of his hearing from all the ototoxic antibiotics. He also
seems to like the new restaurant he is working at as a manager, What-
a-Burger too.

We should know soon if he got the position in Levy County as a
deputy. It's a very large rural county. Gainesville is right near
there with the University of Florida and Shands. That way if there
is an emergency, they are both a large Lung TX facility and CF
center. We won't be far from Jacksonville either.He graduated the
police academy a year ago but b/c of the CF, he's had a hard time
finding someone to look over the CF.

Levy would really be a good prospect in that the cost of living is
much cheaper, thank goodness. We've found some rental properties we
like and are larger than the apt here but cost a few hundred less a
month. Plus, it is a safe area with very little crime. In that
aspect his duties will most likely involve handing out speeding
tickets and small stuff like that. He is really excited about it and
I really hope he gets it. They only do a 3 to 4 day work week, so he
will get more rest. It will also give him a lot less hours to work
and at least 3 days off a week.

He's gotten other dept's to hire him but once they realized what CF
is, they never returned a call or would call back saying they
changed their minds.Even after giving him the offer and everything.

Hopefully, the job itself will also give him an extra an incentive
too really get a few good work-outs a week at the gym. That will
keep his lungs clearer and his function up. He goes to the gym now
but, he goes through fazes where he isn't great about going
consistantly.

He has always been very consistant about his nebs and
vest.Hopefully, maybe he'd up his vest treatments too.

As for me, the county and surrounding areas have plenty of community
colleges I can finish my pre-req's there and then I can
automatically transfer to UF to take the last few courses to receive
my BS. I am looking at either a major in Health Sciences ( pre-med
and the like program ) with a minor in Micro and Molecular Biology
or the other way around. It all depends. After the BS, I want to get
into med school but it depends on health issues at the time. I have
plans A - Z, so if one thing won't work I can fall back on another.
I really want to get into some Genetic Research and whatnot.I really
want to go to med-school. Its my main objective. However, I am
looking at a smaller program like East TN State and whatnot. I would
go somewhere elsewhere. I have never been able to really feel at
home in Florida.

As for my health, same old same old. I am 2 years and 3 months post
double lung transplant and PFO repair.I have been in chronic
rejection for about a year and a half.  I do currently have an
infection that's in my blood stream from a central line I get
photopheresis through. My veins are still shot and they cannot do
the treatment through my port so they had to tunnel a catheter under
the skin and over my collar bone and then out from under the skin.
The photopharesis is sort of like dialysis for the blood for people
with chronic rejection.

Your blood gets pulled out through one lumen in a large IV tube (
kinda like a big straw with two smaller straws inside of it ), sent
through the machine, radiated with light to kill and remove all of
the inflammatory cells that are causing the chronic rejection and
then it gets pumped back into me through the other catheter. It
doesn't hurt, it just takes a couple hours to finish all 30 cycles.
I just go to sleep or do homework. They usually let me stay and
sleep through lunch..I don't really eat so . . . Naptime

It will take several months before we know if it is helping . . . my
last PFT was holding steady so thats good.

I don't really feel sick from the rejection. At first when it first
happened I noticed I was a little short of breath and I had
developed a productive cough, but that has been over a year ago now.
I am pretty much used to it all now.The only thing that bugs me now,
is that I get worn out a lot faster and easier than right after TX.
But I still go to school ( Im in my 4th or 5th semester ), go to the
gym ( if my stomach doesn't hurt too much ), climb stairs, etc. I
knew something had been off for quite some time, so when I first
found out about the rejection in September, it wasn't a big deal. I
know so many with Chronic Rejection that have it and have had it for
a decade or more, I just figure that new things will be coming down
the pipeline every couple years or so. I still cannot compare me now
to pre-TX. Back then even my skin hurt and I needed a bucket to
cough into instead of a tissue. Coughing up blood was as common as
just clearing my throat. Now I just get a little winded and take
naps....lol
No biggy ! ! !  Although I wish I could still say I had PFT's in the
90's. Oh well.

My biggest advice, if you think you may have
Reflux/GERD/Indigestion, get it looked into ASAP and taken care off.
It can really eat your lung function up in no time at all. I was on
Prevacid 30mg twice a day and was still aspirating into my new
lungs. The only major symptom was a productive cough. I had
gastroparesis so my stomach wouldn't empty. I had it pre-TX. When
food and pressure built up inside the stomach, it just went the only
way it could.... up ! ! !gone.

As soon as they did the Nisson the constant horrible cough stopped.I
still cough but until my stomach wrap, I was on major prescription
cough suppressants post-tx. I have had issues and need to get my
esophagus dilated every 6months or so to be able to swallow at all,
but if I had not gotten the procedure done, my lungs would have been
completely ruined.

I had the gastroparesis fixed surgically at the same time with a
pyloraplasty. I still have major Gut issues involving my pancrease
and gallbladder and obstructions, but my gut's always been a mess.

I will have the infected catheter yanked out tomarrow, or should I
say, in  few hours, and once the infection is cleared, another one
placed. I am doing IV antibiotics right now every eight hours
through my port. I haven't had to do home IV's in 2 years, I forgot
what a pain they are...lol

As for the GI issues, I am looking into seeing another TX center
thats been around for awhile to see if they can do something about
my gallbladder and chronic pancreatitis. The place I'm looking at
has been doing TX for almost 2 decades now and it is one of the
largest CF transplant centers in the world. I have a friend that
lived here after her TX almost 10 yrs ago but was TX there and now
she moved back home so Id go stay with her.Plus, I can fly there
free of charge. I am just tired of the feeding tubes and whatnot. I
keep losing weight and they keep sticking me in the hospital for
tube feeds and TPN. I hate TPN ( you get all your fat and stuff
through a bag of fluid hooked up to an IV in your neck ) It's hard
on the liver and mine almost shut down once b/c of it.

It's just odd. They tell me know to double my salt intake, fat
intake, food and water, yada yada yada. I am abt the same size as
Brad and he's 3 inches shorter....hehehe.
KJeep in mind I was rather chubby pre-tx......

Hope to hear from yall.

Huggles,
Becki