Expert Guest Chat Log

Topic: Pulmonary Hypertension Date: Saturday, June 14, 2000 Guest: Director of the Pulmonary Hypertension Center, Division of Pulmonary and Critical Medicine at Johns Hopkins University.

***Welcome to the PHCentral Guest Expert Chat
Wonderfromdownunder afternoon all
MODERATOR ***Our Guest Expert today is Dr. Sean Gaine from John Hopkins.
MODERATOR ***The moderator today is Michael Szczepkowski
MODERATOR ***We are holding this chat live from the PH Conference in Chicago!
MODERATOR ***Here are the rules for today's chat:
MODERATOR ***If you have a question, please send a "?"
MODERATOR: ***I will keep track of who is next in order and then....
MODERATOR: ***call on you to ask your question.
MODERATOR: ***When you see some text followed by "..." that means the person...
MODERATOR: ***still has not finished typing.
MODERATOR: ***There will be a log for today's chat.
MODERATOR: ***We are announcing another LIVE chat tomorrow
MODERATOR: ***Guest Expert will be Dr. Dianne Zwicke, from Milwaukee
MODERATOR: ***Topic: PH Secondary to heart defects and Family Issues
SharonSATX SharonSATX
MODERATOR: ***OK, we are ready to begin. If you have a question...
MODERATOR: ***please type and send a "?"
Kyle ?
Martha ?
MODERATOR: Questions????
Jean in Florida ?
Monica ?
Earl ?
MODERATOR: Kyles, you are first. Go ahead.
Kyle am i able to take the depro shot and has Hopkins found a replacement
josie ?
josie actually this is my mum's name, i am kate
Dr. Gaine: Can you explain the "depo"shot
MODERATOR: Josie, please hold on.
Kyle birth control but its in a shot that last 3 months
WeiPing Guo ?
Dr. Gaine: Birth control can be dangerous in PPH, particularly a long-acting hormone like depo. We recoommend other methods than hormones as first line.
MODERATOR: Kyle, do you have a follow-up?
Kyle no thats ok thanks
carrie "?"
MODERATOR: Martha, your question?
Martha how long does it take ccb to begin working?
Becky ?
Dr. Gaine: CCBs should be started at low dose and increased slowly to ensure safety . . .
Martha how quickly can you increase?
Dr. Gaine: When the final dose is achieved the patient should already notice improvemenets in shortness of breath and exercise tolerance.
MODERATOR: Martha, do you have a follow-up?
Martha how long to reach that goal is the average?
Dr. Gaine: As quickly as every six to 12 hours as long as your blood pressure is being checked.
Dr. Gaine: Improvements can be noted in as short as a few days to as long as a few weeks.
Martha thank you
Wonderfromdownunder ?
Dr. Gaine: If there's no improvement despite a high dose of the drug after a few weeks, it is unlikely that there will be much difference long term
MODERATOR: Jean, you are next.
Jean in Florida How important is it to be proactive about sodium and fluid restrictions?
Dr. Gaine: It is very important to understand that too much sodium in your diet can lead to excessive fluid retention...
Dr. Gaine: and lead to an increase in your requirement for diuretics.
Dr. Gaine: Patients should also be careful about drinking too much fluid, which also can lead to fluid accumulation and increase in diuretic needs.
MODERATOR: Jean, do you have a follow-up question?
Jean in Florida thanks
andy ?
MODERATOR: Monica, you are next.
Monica Is it ok to take Advil or Tylenol with PH?
Dr. Gaine: Tylenol is very safe with PH, however, Advil can interact with coumadin and therefore should generally be avoided. Furthermore, Advil can affect kidney function, particularly when taking diuretics.
MODERATOR: Monica, do you have a follow-up question?
Monica No thank you
MODERATOR: Earl, you are next.
Earl do you foresee flolan patients being able to go off flolan in favor of an oral drug in the near future?
Dr. Gaine: Not in the near future . .
Earl will there be trials to that affect?
Dr. Gaine: the next stage for patients on flolan will be the option of potentially converting to Uniprost, the subcutaneous prostacyline.
Dr. Gaine: Adding other drugs such as endothelin blockers is on the horizon, and they reduce the need for Flolan increases.
MODERATOR: Earl, do you have a follow-up question?
Monica ?
Earl nope, thanks
Martha ?
MODERATOR: Josie, you are next.
josie i am 23, have had pph for 2 years, my pressures are really low around 35, and a doctor that i just saw thinks i might have poly cystic ovaries, can i take "diane 35"?
Margaret ?
Dr. Gaine: Could you explain what diane 35 is
MODERATOR: Josie are you there?
josie it is a contraceptive pill, that anti androgen or something!!my skin is breaking out and i have bad pmt. i am on ccb's-cardizem 240 3 times a day
Dr. Gaine: I would discuss this with your doctors. A low dose of birth control pill started carefully and followed can sometimes be OK in PPH, but there are risks of getting increased pressure and more shortness of breath with contraceptives.
MODERATOR: Joise, do you have a follow-up question?
josie why is there an increasedf pressure and shortness of breath?
Dr. Gaine: Contraceptives contain estrogen, which has direct effects on the pulmonary artery in PPH.
Dr. Gaine: This can lead to enough irritation that the pressures can increase in some patients.
Dr. Gaine: Therefore, we generally recommend against them.
MODERATOR: WeiPing, you are next.
WeiPing Guo Where and how can I apply for a PPH clinical trial? I am 35 living in China, diagnosed with PPH this March..
josie thank you Dr Gaine
Jean in Florida ?
Dr. Gaine: I am not sure where the nearest clinical trial is to you. However, the approach to PPH should be similar throughout the world, patients with early disease may be treated with CCBs. However, more advanced disease requires prostacycline.
WeiPing Guo What is CCBs?
Dr. Gaine: Prostacycline can be difficult to obtain in many countries because of its expense. However, every effort should be made to find the experts in your part of the world who can administer this drug.
Dr. Gaine: Calcium Channel Blockers
MODERATOR: WeiPing, do you have a follow-up?
WeiPing Guo Thanks!
MODERATOR: Carrie, you are next.
carrie if estogetn is counterindicated for birth control, what about for hormonal replacement (prempro) at age 66?
Dr. Gaine: Hormone replacement therapy is OK for PH . . .
carrie whew aht
carrie that's a relief.
Dr. Gaine: We do not see the same problems with shortness of breath and the increased pressures. . .
Dr. Gaine: as we do with contraceptives.
MODERATOR: Carrie, do you have a follow-up?
carrie i do have another question:
MODERATOR: Go ahead, carrie
carrie do you see causation by ph of sleep apnea, or is it just sleep apnea can have a dausal effect on ph?
Dr. Gaine: Sleep apnea can cause PH. It is genrally rather mild. . .
Dr. Gaine: It can also make PH worse.
MODERATOR: Becky, you are next.
Becky Do you recommend a person with oxygen level of 93 at rest to sleep with oxygen?
carrie thank you!
Mike-W ?
Dr. Gaine: Most people drop their oxygen saturations at night while they sleep . . .
Dr. Gaine: Therefore, if you start off at 93 percent, there is a strong likelihood . . .
Dr. Gaine: that you will drop further while sleeping.
WeiPing Guo ?
Carol M I just entered the room. Dr. Gaine, has anyone asked about research such as the one in Toronto, that produced a cure? Will something be initiated in the States?
Dr. Gaine: Therefore, oxygen, if your insurance will allow it, . . .
mimi ?
Dr. Gaine: can be beneficial.
MODERATOR: Becky, do you have a follow-up?
Becky no thank you
MODERATOR: Wonder , you are next
Amy Jo ?
Wonderfromdownunder Paul Percival here Dr Gaine my question is this if one was NYHA Class IV and Flolan was not keeping up with overall wellbeing -- what would be the next step you would recommend aside from the obvious transplant -- Digoxin?
Amy Jo Amy Jo ?
Skipper McRae - Texa ?
Dr. Gaine: Other options to bridge to transplant include dopamine, and used chronically . .
Irene ?
Dr. Gaine: particularly if there is a lot of heart failure . .
Dr. Gaine: An atrial septostomy can also be beneficial . . .
Skipper McRae - Texa Skipper?
Dr. Gaine: However, it is a high-risk procedure where a hole is created between the right and left heart . .
Dr. Gaine: to decompress the right heart.
MODERATOR: Wonder, do you have a follow-up?
Wonderfromdownunder would you also recommend a mild form of sleeping tablet for someone who can not sleep well at night but sleeps well ALL DAY long ?
Dr. Gaine: First thing to mention is that if you are sleeping during the day and not at night . . .
Dr. Gaine: that the reason for not sleeping at night is what we call "poor sleep hygiene.". . .
Dr. Gaine: Changing your sleeping behavior around can be the most natural way of correcting this problem. . .
Wonderfromdownunder hmmm I call it worry but go on please
Dr. Gaine: However, pills that we use in PH include a low dose of benadryl or one of the new milder sleeping pills.
MODERATOR: Andy, you are next.
andy are ther any long term side effects of being on high doses of ccb or diuretics, and does prostycyclin (uniprost) stop having any effect after a certain period of time?
Dr. Gaine: There are no bad long-term side effects of CCB or diuretics . . .
Dr. Gaine: However, if the disease worsens, these agents can have bad affects on heart function . . .
Dr. Gaine: and kidney function. But by themselves, they are very good for PH . . .
Dr. Gaine: For some people, prostacycline loses its effect over time . . .
Dr. Gaine: We are unable to predict who those people might be until it occurs.
MODERATOR: Andy, do you have a follo-up question?
Joyce Rahn ?
andy what do u think about a slow relaese pregestorone iud
Joyce Rahn Joyce ?
Dr. Gaine: I do not have any direct experience with this in PH. . .
andy as acontraceptive (mirena)
Dr. Gaine: However, I suspect it would be better than the contraceptives we talked about earlier.
MODERATOR: Monica, you are next.
SharonSATX ?
Monica If you're on a diuretic, then you shouldn't drink the suggested 8 glasses of water a day?
andy thanks dr gaine,
Dr. Gaine: No. Drinking too much water can increase your need for diuretic . . .
Dr. Gaine: You have to be very careful about drinking too much on diuretics.
MODERATOR: Monica, do you have a follow-up?
Monica Then how do you know how much is safe?
Dr. Gaine: Talking with your doctor about where they would like your weight to be . . .
Dr. Gaine: and maintaining that carefully is very important.
Monica Thank you.
MODERATOR: Martha, you are next.
Martha do you feel pulmonary rehabilitation can help or hurt PH?
Dr. Gaine: Gentle pulmonary rehab is beneficial, however we need to be careful about overexertion. . .
Joyce Rahn ? I'm unsure how to submit questions.
Dr. Gaine: which can stress the right heart.
MODERATOR: Martha, do you have a follow-up?
Martha what would you recommend as gentle?
MODERATOR: Joyce, I have you listed. I will call on you.
Dr. Gaine: Listen to your body. When it feels uncomfortable, with more shortness of breath . . .
Dr. Gaine: or chest pressure, then stop. If it feels comfortable, you can continue without concern.
MODERATOR: Margaret, you are next.
Margaret Can conjestive heart failure cause PH?
Dr. Gaine: The left side of the heart when the pressures rise because of failure . . .
Dr. Gaine: can cause buildup of pressure in the lung, leading to PH . . .
Dr. Gaine: This is Secondary PH.
MODERATOR: Margaret, do you have a follow-up?
Margaret Yes
Margaret Is this rare?
Dr. Gaine: No, this is a very common cause of mild PH.
MODERATOR: Jean, you are next.
Jean in Florida I am facing possible uterine surgery. How can I minimize the risks?
Dr. Gaine: It is important to inform the surgeon that you want the anesthesiologist . . .
Dr. Gaine: to understand your condition. The anesthesiologist is the most important person during the surgery. . .
Dr. Gaine: They need to ensure that your heart is not stressed, either by fluid problems or by drugs.
MODERATOR: Jean, do you have a follow-up question?
Jean in Florida no, thank you
MODERATOR: Colleen, you are next.
Skipper McRae Skipper McRae?
colleen I have pph for 4 years now I am on ccbs and coumadin and lasix but also suffer at times with low potassium . have you heard of this I take 60 mqs a day
Kathleen Frazier ?
Dr. Gaine: It is common for people on lasix to have problems with low potassium. Sometimes we use drugs . .
Dr. Gaine: such as aldactone, which spares potassium when used in combination with lasix.
MODERATOR: Colleen, do you have a follow-up?
colleen my aldestrone level is 99 can you tell me why this is it was
colleen i am on aldactone and lasix
Dr. Gaine: It's difficult to know the significance of the level . .
Dr. Gaine: you mention. Levels are different in different institutions.
colleen noem is 11-33
MODERATOR: Mike-W, you are next.
Mike-W Dr you stated " use ccbs for early stage" would you explain what constitutes early stages ?
Dr. Gaine: If during a catheterization, it is discovered that the PH can be decreased . .
Dr. Gaine: by drugs such as nitric oxide or adenosine, then the disease can be managed . . .
Kyle ?\
Dr. Gaine: with ccbs. However, less than 25 percent of people are at this stage when diagnosed. . .
Dr. Gaine: the majority do not respond during catheterization.
Dr. Gaine: Therefore they are considered later in the disease.
MODERATOR: Mike-W, do you have a follow-up?
Mike-W thank you no
MODERATOR: Amy Jo, you are next.
Amy Jo Any link to sulfur drugs causing ph? 5 years ago Macrobid and now sob, stage 111 just dx and waiting for some type of treatment.
Dr. Gaine: There's no established link with sulfur drugs.
MODERATOR: Amy Jo, any follow-up?
Amy Jo yes
Amy Jo time is so important and we need earlier dx. So sad we lose so many years. thank you
MODERATOR: CarolM, you are next.
MODERATOR: Skipper, you are next
Skipper McRae Skippper>I take Furosemide in the daytime, and it works. At night, I take 5mg of Terasozin to reduce the number of times I have to get up and go, and it doesn't work. Is the nocturia probably more related to CHF, do you think?
Dr. Gaine: It is difficult to tease these two issues apart. . .
Dr. Gaine: I would advise discussing this with the urologist who prescribed the terasozin.
MODERATOR: Skipper, do you have a follow-up?
Skipper McRae no, thanks a lot.
MODERATOR: Irene, you are next
MODERATOR: JoyceR, you are next
Joyce Rahn Resting pressure 80 Started Flolan 14 Jun 2000 Released from hospital 20 Jun Due to several episodes in hospital including 2 Code blues discharged at a lower doseage than needed. Anticipate increase on 29th First day home 6 HP alarms -- faulty pump returned. Meanwhile weight gain 3# each day for 3 days, lots of SOB & fatigue but no angina or pressure. Should I contact PH specialist before 29th?
Dr. Gaine: Yes.
Dr. Gaine: Definitely, as soon as possible.
MODERATOR: Follow-up?
Joyce Rahn Is Monday okay or do I try something else sooner.
Dr. Gaine: The sooner the better for your safety.
MODERATOR: Sharon , you are next.
Joyce Rahn thank you any advice in meantime
SharonSATX I have SPH due to apnea; currently on CPAP, maxide, lasix, verapamil (systemic BP), norvasc for last 2 mos. Echo yesterday showed drop from 55 to 50. Can I expect continued drop like this?
Dr. Gaine: No.
Dr. Gaine: If the PH is from apnea, then the prognosis is generally good with continued weight loss and CPAP therapy.
MODERATOR: Sharon, do you have a follow-up?
SharonSATX Why?
mimi ?
SharonSATX Would it be dangerous to have knee replacement surgery w/ my pressures
Dr. Gaine: Because apnea-induced PH is generally reversible when CPAP is applied every night.
MODERATOR: Kathleen, you are next.
Kathleen Frazier OK
Kathleen Frazier After ASD closure, can I expect to wean off Flolan?
Dr. Gaine: This is a very difficult question. . .
Dr. Gaine: Overall, there isn't enough experience to tell you with any certainty . . .
Dr. Gaine: You should expect to be on Flolan for the foreseeable future . . .
Kathleen Frazier OK, I'm hoping!!! Thank you!
Dr. Gaine: However, without knowing the details of your case, it is impossible to predict accurately.
MODERATOR: Kathleen, do you have a follow-up?
Kathleen Frazier No. THank you!
MODERATOR: Kyle, you are next.
Kyle Dr G i'm going to Lake Erie in Aug. about 8-9 hrs away, could you please tell my mom i'll be ok she will listen to u.
MODERATOR: One more left (mimi) after kyle.
Dr. Gaine: You will be OK.
SharonSATX ?
MODERATOR: Kyle, follow-up?
Kyle thank you very much!!!!
MODERATOR: Mimi, you are next. And that will be it.
mimi SPH due to sleep apena. cardiziem 240 daily 8 months, cpap 3 months, sob worse, pressures 55 at rest, dx 1/99, on 02, 24/7.. what should be follow-up treatment since sob is worse??
Dr. Gaine: If shortness of breath is worse, despite CPAP (I would not give up on CPAP for three to six months being successful) . .
Dr. Gaine: Then it would be important to look for other causes of your PH. . .
Dr. Gaine: The other treatments might need to be considered.. . .
Dr. Gaine: If necessary, a follow-up cath may help your doctor decide whether you need more CCBs or . .
Dr. Gaine: whether you would be a candidate for newer treatments including prostacycline.
MODERATOR: Mimi, do you have a follow-up?
mimi I have one kidney, take lasix, is this okay?
Dr. Gaine: With careful monitoring of your kidney function, you can indeed take lasix.
MODERATOR: THAT'S ALL. Thanks Everyone! Thanks Dr. Gaine!!!!!!
Kyle Thanks Dr Gaine and Michael
Ron Thank You Dr. Gaine for your time etc.
Mike-W Thank you Dr.
MODERATOR: Reminder, tomorrow there will be another chat!
daneen thank you
MODERATOR: 10:30 CST
Ron Thank You Mi chael
MODERATOR: Dr. Zwicke
Margaret Thanks Dr. Gaine and Michael
carrie what a great expert chat. dr Gaine so helpful to all; questions from us were generally interesting and beneficial to all.
Becky Thank you
SharonSATX Thanks
mimi I also thank you
Kathleen Frazier Thank you
josie thak you Dtr Gaine and Micheal
Joyce Rahn Thank you very much