Topic:  PH and Transplantation
Date:  December 14, 2000
Guests:  Thomas J. Kirby, MD and Paul Lange, M.D.

<Moderator> ***ATTENTION***
<Moderator> ***ATTENTION***
<Moderator> ***ATTENTION***
<Moderator> ***** Welcome to the Guest Expert Chat. ******
<Moderator> *** The guest speakers today are Dr. Thomas Kirby, a transplant surgeon at the University Hospitals of Cleveland ***
<Moderator> *** and ***
<Moderator> *** Dr. Paul Lange, a pulmonologist from University Hospitals of Cleveland***
<Moderator> *** Topic: PH and Transplantation ***
<Moderator> *** My name is Michael and I will be the moderator for this chat. ***
<Moderator> *** The guidelines for this chat are: ***
<Moderator> *** If you have a question during the chat, please type and send a "?"
<Moderator> *** I will then add you to a list of others who have a question. ***
<Moderator> *** I will call on you to state your question when you reach the top of the  list. ****** 
<Moderator> *** Dr. Kirby will then send a reply to the room. ***
<Moderator> *** I will ask you if you have a "follow-up" question. ***
<Moderator> *** If you have a follow-up, please ask it. ***
<Moderator> *** If not, please state that you do not, I will call on the next person with a question. ***
<Moderator> *** We will open-up the room as "free form" chat once we have finished ***
<Moderator> *** OK, let's begin. If you have a question for Dr. Kirby or Dr. Lange, please send a "?"
> ?
<Moderator> Go ahead P&K
> Why are some placed on a transplant list when first diagnosed with PH and others are not?
<Moderator> Alex and Teresa, welcome
<KarenW> ?
<Moderator> we have started
<Dr. Kirby and Dr. La> It just depends how sick the person is. Its a judgement call. Complicated.
<alex> hello!! :-)
<Moderator> P&K follow-up?
> Not at this time. Thank you.
<Shirl/California> ?
<Moderator> Karen, go ahead
<KarenW> Are single lung transplants still being done regularly for PH at Cleveland Clinic, or is it double lung?
<Dr. Kirby and Dr. La> Single lungs can be done but are riskier for a variety of reasons.
<Moderator> Dr. Kirby is still responding
<Moderator> Karen, do you have a gollow-up?
<KarenW> Not at the moment
<Moderator> Shirl, you are next
<Shirl/California> So Docs, how long do you expect your PPH patients to live after double lung transplant, presuming no rejection?
<Moderator> Anyone else with a question, please send a "?"
<KarenW> ?
<dennis> ?
<Liz d> ?
<Liz d> Liz d ?
<Dr. Kirby and Dr. La> My longest survivor is now over 10 years. From kidney transplants its somewhere around 20% at 10 years. Not great but better than the alternative
<Moderator> Shirl, follow-up?
<Shirl/California> Can we get PPH again (since we don't know why we got it in the first place.)
<Dr. Kirby and Dr. La> No to the best of my knowledge
<Moderator> Karen, go ahead.
<KarenW> Where is the incision made for double lung transplant?
<Moderator> Hi Julie
<Moderator> If you have a question, please send me a "?"
<Dr. Kirby and Dr. La> Across the front of your chest. We enter both sides of your chest
<Moderator> Karen, follow-up?
<KarenW> no
<Moderator> Dennis, go ahead
<dennis> what test are requied before listing
<Dr. Kirby and Dr. La> Really its just making sure that you have no other health problems and are 'psychologically' capable of withstanding the surgery
<Moderator> Dennis do you have a follow-up question?
<dennis> no
> ?
<Moderator> Liz, go ahead
<SuseK> ?
<Liz d> do you do transplants dfor folks with scleroderma as well as sph
<Dr. Kirby and Dr. La> yes
<SuseK> SuseK ?
<Moderator> Dr. Kirby eleborate
<Dr. Kirby and Dr. La> if people with scleroderma have mutliple health problems they probably would not be candiates
<Moderator> Liz, do you have a follow-up?
<alex> ?
<Liz d> types of other multiple health problems?
<Dr. Kirby and Dr. La> renal disease
<Moderator> P&K, go ahead
> What are the new transplant rejection drugs being used right now, other than
 cyclosporine? How well are they working?
<Teresa/NC> ?
<Dr. Kirby and Dr. La> not too much new. Rapamycin, FK 506. Maybe better but not much so far
<Moderator> Follow-up?
> No, thank you
<Moderator> Susie, go ahead
<SuseK> Is a 74-year old woman with PPH a candidate for lung transplantation?
<Dr. Kirby and Dr. La> no
<Moderator> Follow-up?
<SuseK> No, thank you.
<Moderator> Alex, go ahead
<alex> what other types of health problems would make someone illegable for transplant
<Dr. Kirby and Dr. La> renal failure, heart disease, drug abuse, alcoholism, psychological problem
<Moderator> Alex, follow-up?
<alex> no thank you
<Moderator> Teresa, you are next
<Moderator> Other questions?
<Teresa/NC> What do you consider ideal % of desirable weight for person's height to be eval for transplant?
<Shirl/California> ?
<Dr. Kirby and Dr. La> < 130%
<Moderator> Jean, if you have a question, please send a "?"
<sharon, chrissy's mo> ?
<Moderator> Teresa, follow-up?
<Teresa/NC> No Thanks!
<Moderator> Shirl, go ahead
<Shirl/California> why do tx centers relist folks for a second tx when there are so many others waiting for a first tx?
<Dr. Kirby and Dr. La> Good question, We basically don't
> ?
<Moderator> Shirl, do you have a follow-up?
<Shirl/California> others do...how successful are they?
<Dr. Kirby and Dr. La> BAD! about a 25 to 40% one year survival
<Shirl/California> mmmmmm
<Moderator> Sharon, go ahead
<sharon, chrissy's mo> are there any new drugs to help with bronciolitis obliterans?
<Dr. Kirby and Dr. La> No
<Moderator> Sharon, follow-up?
<sharon, chrissy's mo> no thank you
<Moderator> P&K, go ahead
> Do you get priority on the lung transplant waiting list if your survival without it is extremely short?
<Moderator> Other questions?
<Margaret> ?
<Dr. Kirby and Dr. La> At present no
<Moderator> P&K, follow-up?
> What is the average waiting time for a child about 8?
<Dr. Kirby and Dr. La> Hard to say. At least one year
<Moderator> Margaret, go ahead.
<Margaret> If a person had heart valve problems, would you do a heart/lung transplant? If so, how successful are they?
<Shirl/California> ?
<annie> ?
<annie> Don't most people with PPH need heart and lung tx together? What's criteria and prognosis?
<alex> ?
<Moderator> Annie, hold on please
<Dr. Kirby and Dr. La> Heart lung transplants are rare and a more likely sencario is that the patient would have their heart fixed and then have a new lung placed
<Moderator> Margaret, do you have a follow-up?
<Margaret> Yes
<Moderator> Go ahead.
<sharon, chrissy's mo> ?
<Margaret> I thought you mentioned that people with heart problems don't get transplants?
<annie> ?
<Dr. Kirby and Dr. La> It relates to coronary artery disease mainly not to valve disease
<Moderator> Shirl, you are next, go ahead.
<Margaret> Thank you
<Shirl/California> my center won't tell me how much longer I'm waiting......do you guys let your patients know where they stand on the list?
<Dr. Kirby and Dr. La> Not unless they specifically ask.. Its so hard to tell when an appropriate donor will arise
<Moderator> Shirl, do you have a follow-up?
<Shirl/California> do you tell them where they stand on thelist?
<Dr. Kirby and Dr. La> No
<Moderator> Annie, you are next, go ahead
<annie> What is the longest length of time you have had a patient on flolan, what is "normal" dx w/flolan
<Dr. Kirby and Dr. La> 3 years. PPH
<Moderator> Annie, do you have a follow-up?
<annie> I meant prognosis, sorry. w/flolan
<Dr. Kirby and Dr. La> No one can say for sure
<Moderator> Alex, you are next
<alex> if you get put on the list and get called, and you say no, what happens if you need one later? do you start all over again?
<Dr. Kirby and Dr. La> you would more than likely be removed from the list
> ?
<Moderator> Alex, do you have a follow-up?
<alex> yes
<Moderator> go ahead
<alex> could they get relisted at a later date?
<annie> ?
<Dr. Kirby and Dr. La> It depends on the center. You should be committed to the transplant or not
<Moderator> Sharon, go ahead
<alex> thank you
<sharon, chrissy's mo> how successful are live adult donors to a child patient?
<Dr. Kirby and Dr. La> The same as cadaveric
<Moderator> Sharon, do you have a follow-up?
<sharon, chrissy's mo> is a lobe from two people big enough
<Dr. Kirby and Dr. La> Yes
<Moderator> P&K, go ahead
> Do you believe a patient should be listed at time of DX in case he or she deteriorates quickly?
<Dr. Kirby and Dr. La> No
<Moderator> P&K, follow-up?
> yes
> when should one be listed for transplant?
<Dr. Kirby and Dr. La> When the risk of death from the underlying disease outweighs the risk of a Tx
<Moderator> Annie, go ahead. Other questions, please?
<annie> that was my question, but to ask further on same subject, how would you know?
<dennis> ?
<Dr. Kirby and Dr. La> Judgement
<Moderator> Annie, follow-up?
<annie> prognosis w/tx?
<Dr. Kirby and Dr. La> 70
<Dr. Kirby and Dr. La> 70
<annie> years?
<Dr. Kirby and Dr. La> 70
<Dr. Kirby and Dr. La> 70 percent five year survival
<Moderator> Dennis, go ahead
<annie> thank you.
<dennis> is there a age cutoff for being listed
<Dr. Kirby and Dr. La> <65
<Moderator> Dennis, follow-up?
<dennis> no thanks
<Moderator> Other questions please?
<Jean in FL> ?
<Moderator> Go ahead, Jean
<Jean in FL> I'm listed at UPMC and there is a 3 year wait for O+. Is this unusual?
<Dr. Kirby and Dr. La> No
<Moderator> Jean, do you have a follow-up?
<Jean in FL> Then isn't is dangerous to wait until I go downhill to be listed?
<Shirl/California> ?
<sharon, chrissy's mo> ?
<annie> ?
<Dr. Kirby and Dr. La> That's a complicated question. If you are listed too soon you are not sick enough and risk dying from the Tx'
<Moderator> Shirl, go ahead
<Shirl/California> ok so I won't have PPH anymore....but will I still have sleep apnea?
<Dr. Kirby and Dr. La> Probably
<Moderator> Shirl, follow-up?
<Shirl/California> do post-tx patients EVER need 02?
<Dr. Kirby and Dr. La> yes
<Moderator> Sharon, go ahead.
<Shirl/California> dang
<sharon, chrissy's mo> what are symtoms of asperating into your lungs? same as OB?
<Dr. Kirby and Dr. La> sort of
> ?
<Moderator> Sharon, follow-up?
<sharon, chrissy's mo> no thank you
<Moderator> Aniie, go ahead
<annie> Does flolan reverse/impede the ph's hold on the blood vessels in the lung and do you foresee a replacement drug that works as well in an oral form?
<Dr. Kirby and Dr. La> No one knows. New therapy is on the way
<Moderator> Annie, follow-up?
<Moderator> Annie?
<alex> ?
<annie> Can flolan reverse the damage done by PH?
<Moderator> P&K, go ahead
> Do men do better after transplants than women? Or women better than men?
<Dr. Kirby and Dr. La> No
<Moderator> Annie, first
<Dr. Kirby and Dr. La> No
<annie> thank you
<Moderator> P&K, do you have a follow-up?
> no thanks
<Moderator> Other questions?
<Moderator> send a "?"
<Moderator> Alex, go ahead
<alex> ?
<Shirl/California> ?
<alex> can flolan make your liver go out so bad that you need that transplanted as well?
<Dr. Kirby and Dr. La> No
<alex> thank you
<Moderator> Alex, follow-up?
<alex> no thanks
<Moderator> Shirl, go ahead.
<Shirl/California> can most folks go back to work post-tx?
<Moderator> Other questions?
<Dr. Kirby and Dr. La> Yes
<Moderator> Shirl, follow-up?
<Shirl/California> now I'm happy
<annie> ?
<Laine> I have been diagnosed with autoimmune hep. and PBC any coincedence?
<Moderator> Aniie, go ahead.
<Moderator> Laine, please wait
<Dr. Kirby and Dr. La> No
<annie> do most pph patients die from right heart failure, chf or ventricular arythmias?
<Dr. Kirby and Dr. La> heart failure
<Moderator> Annie, follow-up?
<annie> caused by the right side?
<Dr. Kirby and Dr. La> Yes
<Moderator> Laine, go ahead
<annie> thank you
<Moderator> Other questions?
<Laine> I was just wondering if autoimmune and PBC could have any relation to the PH
<Shirl/California> ?
<Dr. Kirby and Dr. La> No
<Moderator> Shirl, go ahead.
<Shirl/California> My center says, "no pets" post tx...what do you guys say?
<Dr. Kirby and Dr. La> I don't subscibe to the no pets theory
<Moderator> Shirl, follow-up?
<Shirl/California> Any other "nos" at your center?
<annie> ?
<dennis> ?
<Dr. Kirby and Dr. La> No smoking, No abuse of alcohol
<Moderator> Annie, go ahead.
<Moderator> Hi mimi, if you have a question, send a "?"
<Moderator> I am assuming that annie is still typing her question
<annie> Flolan then, is really a stop-gap measure...and a tx is really the cure? So, it would be wise to be listed.
> ?
<Dr. Kirby and Dr. La> If flolan improves the situation so that you can avoid a Tx its better off to stay with Flolan
<Moderator> Annie, do you have a follow-up?
<Moderator> Wonder, if you have a qustion send a "?"
<Wonderfromdownunder> thank you
<Moderator> Dennis will be next after Annie's follow-up
<Moderator> JOan, if you have a question, send a "?"
<Shirl/California> Moderator, I think Annie left
<Moderator> Good point
<Moderator> Thanks
<Moderator> Dennis go ahead
<dennis> what is time frame from when you get call till tx has to get done 2,4 hours or longer?
<Dr. Kirby and Dr. La> >8 hrs
<Dr. Kirby and Dr. La> <8 hrs
<Moderator> Dennis, follow-up?
<dennis> what is stay after tx
<annie> ?
<Dr. Kirby and Dr. La> 2 to 8 weeks
<Moderator> Annie, go ahead. P&K will be next
<annie> I got knocked off and didn't see answer to my other question...sorry.
<Moderator> answer: If flolan improves the situation so that you can avoid a Tx its better off to stay with Flolan
<annie> is flolan a stop-gap only and should one consider tx immediately for the real cure.
<annie> oh, okay, thanks very much.
<Moderator> P&K, go ahead
> What is the average cost of anti-rejection drugs?
<alex> ?
<Dr. Kirby and Dr. La> 25,000 per year
<Moderator> P&K, follow-up?
> thanks, no
<Moderator> Alex, go ahead
<alex> are antirejection drugs life long pills?
<Dr. Kirby and Dr. La> absolutely
<Moderator> Alex, do you have a follow-up?
<alex> no thanks
<Moderator> Other questions, please send a "?"
<Shirl/California> ?
<Moderator> Shirl, go ahead
<Shirl/California> I just wanted to thank the Doctors for being here and answering my questions...
<Dr. Kirby and Dr. La> your welcome
<Moderator> Thanks. I think we can wrap this up
<Moderator> Thank you everyone!
<Moderator> Thanks Dr. Kirby and Dr. Lange
<Moderator> The room is now open for free form
<dennis> Thanks to you and Dr's
<Dr. Kirby and Dr. La> it was a pleasure participating
<Armond> Yes, thanks to the Doctors
<Margaret> Thanks doctors
<alex> EVERYONE!!! before you all leave! don't forget our ACRONIMS chat tomorow
 and an open forums chat this weekend on transplant... our fear and our hopes!!!
<annie> thank you so much for all the information.
<Joan> I came in late, but I will certainly read it. Thanks to everyone
<Shirl/California> So, Paul.....still breathing in and out I see........lol
<Moderator> We will be putting up a transcript soon.
<Wonderfromdownunder> yep :-))>