Women’s Health Issues and PH

Women’s Health Issues and PH


Chris Archer-Chicko is the nurse coordinator
of the pulmonary vascular disease program at Penn Presbyterian Medical Center in Philadelphia,
Pennsylvania. She has been caring for pulmonary hypertension patients for more than 21 years.
Fran is the nurse practitioner and clinical coordinator of the Temple University Hospital
Pulmonary Hypertension and Right Heart Family Program. She has been working exclusively
in PH for the last 8 years. With that, welcome, Fran and Chris, and thanks so much for taking
the time to be here with us today. Thank you for having us. Yes thank you so much. So this
is Fran and I just wanted to go over our session description, so what we hope to cover on Women’s
Health Issues is specific considerations to women with PH. The areas that we will discuss
are on the screen. We have some other we’ll throw in there too. So to get started,
I wanted to talk a little bit about the impact of a PH diagnosis in younger women. I’d like to talk about self image, realistic expectations, acceptance, finding new ways to participate
in activities, as well as romantic activities. So in young women, and I think in all of us,
we certainly have a sense of our self-image, and if that image changes because of a new
medical diagnosis, that’s a little bit hard to take. Whether you’re taking oral medications
or specifically if you are requiring pump-based therapy or inhaled therapy, that becomes a
part of your life 24/7, 365, so you have to come to terms eventually with the fact that
what you’re taking is life sustaining for you and will make you feel better, stronger,
and make you able to do the things that you want to do at your young age. So, again, you
have to incorporate the people that are supportive of you, so they know how you’re feeling, and
also be comfortable with what you have to have in order to feel better and do well with
your PH diagnosis. So some realistic expectations, I think, are to allow yourself the ability
to take maybe one step forward and two steps back. This is not something that everybody
in the United States has to deal with, and as you know, this is not a common diagnosis,
but allow yourself to get to a point where you feel comfortable with who you are and
what you have to deal with going forward. Don’t beat yourself of the breast because
it is a hard thing for you to do and A doesn’t always lead to B. And then you’ll get to the
point where you accept what it is you have to deal with moving forward, knowing that
new therapies are coming into the forefront and so many have been available to patients
within the last 5-10 years and there are always new things on the horizon that may be better
for you as time goes by. The important thing is that you accept what it is you need to
take in order to get through your daily activities. Finding a way to participate in new activities.
One of my patients is on a pump-based therapy and she has been for years. She’s gotten to
the point where she doesn’t let it rule her life anymore, and initially, it was overwhelming
for her and her family members, but she also realized what she could do as a young woman
to just get on with her life. She loves to travel and that was something she wanted to
do, so since she’s on an infusion, she learned to not schedule her travels in the first 5-7
days after she would change her subctaneous remodulin site, because she knew that was
when she would have the most discomfort as her new site settled in. And that became her
mantra, her and her husband travel but they don’t do it under those circumstances. Also,
finding ways to participate in activities by keeping your pump with you, coming up with
new ways to carry your pump. A lot of women have purses that are like backpacks so nobody
really even knows that you have one. Also, when patients use oxygen, they can use Oxyview
which would bring their oxygen through their glasses, and you don’t even have to wear glasses
you can just get window frames, and the oxygen would go around the glasses and into your
nose and if I’m looking at you from across the room, I can’t even tell that you’re wearing
glasses. Again, PHA is a great way to help you find out those things and certainly support
groups so that you can do the things that you want to do. Romantic activities – that
opens a whole new can of worms for people of all age groups that have been diagnosed
with PH. I think it’s important to share your feelings and concerns with your partner, once
you’re comfortable doing that, so they know what to expect from you and they also know
what not expect from you. Also, I think there are three “P’s” to make sure you’re ready
to engage in romantic activities. I think one is Prepare. Take the time to know what
it is you need to do to be comfortable having a romantic relationship. Take time out of
the day or night to know what you need and also what is the best time for you. If you’re
most tired in the evening, maybe that’s not the best time for you to engage in romantic
activities. I think the next P is Pace yourself. Learn what you need to do to get through a
romantic activity that is satisfying for you, and if that means going slowly, and taking
time to maybe enjoy foreplay, then by all means give that a try, and also I think the
last P is Participate. You want to be able to be an active participant in your romantic
activities. So, Prepare and Pace will help you Participate in the best way you can so
that it’s enjoyable and satisfying for you. I think, too, if you and your partner can
come up with a safe word that you both know, so that you can say that word if you find
that it’s getting too much to tolerate and you can continue what you’re doing and you
just say the safe word and then you both know to back off a little bit. Also, the benefits
of working with a multidisciplinary team can’t be said enough. Your primary medical team
for adolescents, certainly there are medical professionals that can help with prepubescents
and certainly getting through the teenage years. I’m an adult program, so I can’t speak
to that specifically, but there are certainly those type of specialists available. Certainly
obstetrician and gynecology specialists should be a part of you maintaining your healthcare
and wellness in PH. The importance of family planning cannot be stressed enough in PH.
I’m going to turn this over to Chris because she has some great information for you regarding
family planning. So I’ll speak about family planning, pregnancy prevention and talk about
what happens when a woman gets pregnant and how, especially in a PH patient, there is
a lot of strain on the heart. So first, pregnancy is not recommended for women with PH. I realize
that that is devastating and I think women do have to grieve and come to accept that
family planning is going to be maybe different than what you dreamed about as a child and
teenager. I think it’s really important that you speak with your partner and have an open
and honest conversation about how you’re feeling and give your partner time to express how
they’re feeling. Like you, they’re also going to need some time to grieve and come to acceptance
that the family you expected to have may not be traditional as what you thought about when
you were growing up. Most importantly, I want you to realize there is a lot of support for
you — your PH nurses and physicians, the PHA has wonderful resources on their website,
there are local community groups and now that we have the internet and are so connected
with each other, there are groups out there for those who struggle because they cannot
have biological children and I think that may be helpful for many. So it’s very important
and we do a lot of counseling to help patients avoid pregnancy. I’m not going to go through
each of these distinctly but there are permanent ways, there are non permanent and reversible
methods, and I do want to speak a little bit about the hormonal method, to remind you that
for patients who are using an oral estrogen, progesterone tablet, for those of you on ERAs,
the effectiveness of the pregnancy prevention will be reduced. So, we have counseled our
patients that they also need to remember to use a barrier method, so you need two forms
to prevent pregnancy. Another thing is that we are really not sure about the role of estrogen
in the development of pulmonary hypertension, so before you get started on this type of
medication, we would recommend that you speak with your PH physician about what they are
counseling their patients. Sometimes we recommend that they use the lowest dose of estrogen
that would be protective. Lastly, using oral birth control pills, patients can develop
DVTs or blood clots in their legs. For those on anticoagulation, they’re pretty much protected,
but again, your choice of pregnancy prevention should be discussed with your PH team to make
sure that it is adequate and that you have all the information that you need. Moving
over to pregnancy issues with women with PH, again this is a very individualized decision
that should be made by the PH patient and husband or partner and speaking with the PH
physician. You need to know that pregnancy has many risks for women with PH and the maternal
mortality, meaning the potential death of the woman, is up to 30-50% in the literature.
So this decision is very critical that if you become pregnant, that if you would continue
the pregnancy, and it is not only such a serious risk to the woman, but it’s also a risk to
the baby. So normal changes that happen during a pregnancy and delivery. During a pregnancy
a woman increases her blood volume by 50% and her cardiac output or the bloodflow through
the heart increases by 35% so these changes cause an increased heart rate and increased
blood flow through the heart. Typically by the second trimester, which is about 4-5 months
in, this increase workload on a woman with PH can cause symptoms of right heart failure
as that right heart becomes more overloaded. Then, if the woman moves more through the
pregnancy into delivery, there are many rapid fluid and hormonal changes, which again cause
further strain on the right heart and can then also result in actual cardiovascular
collapse. So, again, a very serious situation and this increased workload occurs at the
heart not only just at the time of delivery but following the delivery. And actually the
risk of death of the woman is highest at the time of delivery and the first several days
or first few weeks after delivery. We’re talking serious potential complications, including
a pulmonary embolism, an arrhythmia, stroke, and these are really serious things that can
happen to the woman. Managing a patient through a pregnancy is really a very complicated situation.
There is no simple way about it. A patient who becomes pregnant with pulmonary hypertension,
right off the get go, is considered high risk. We really get them a full team and it’s not
just the PH team, but they need high risk OBGYN physicians and nurses, anesthesia, and
we need someone to care for the baby, neonatologists and maybe even a neonatal intensive care nurse.
So patients who are thinking they are going to go through a pregnancy need to know that
they’re going to require frequent office visits and many diagnostic studies to watch over
both them and the baby. Again, it’s not just the ECHOs that we get in our office, but it’s
going to be all the diagnostic studies that the OB physicians and nurses need to watch
over both the baby and the mother. Pregnant PH patients should expect that they’re going
to be admitted early and likely, as soon as it’s felt safe, the baby will be delivered.
They will be admitted for continuous and ongoing monitoring. There is no standard protocol
to manage, but the ERAs are contraindicated due to the risk of fetal defects, so those
would be stopped at the time of finding out the patient is pregnant. Medications that
are used are the PDE5 inhibitors and then typically just before delivery, the patient
would need an IV prostanoid therapy to help get them through the time of delivery. So,
the summary of the pregnancy issues is that pregnancy puts a significant strain on the
PH patient and frequently they have a cardiovascular system that is not able to meet those metabolic
demands. So this imbalance can cause worsening pulmonary hypertension, very serious complications
and even possibly death. I don’t want to forget about this little baby — the baby can have
an increased risk of premature birth and then therefore also the small fetal growth and
birth rate. The risk of stilbirth and neonatal death is elevated at 7-13%. The PHA Scientific
Leadership Council has put out a consensus statement on birth control and hormonal therapy,
and in there, they are really advising patients not to get pregnant if they have PH. While
all of that sounds very sad, there are other ways, and I think you need to be creative
about how to get children into your life. There is adoption, and PHA has resources to
help people and link people towards that. There are many resources on the internet.
You can have consideration to having foster children or even surrogate mother to carry
the baby. So there are ways that you can involve children in your life, and when we originally
presented this material at the PHA on the Road in July, a woman proudly stood up and
shared with us that she and her partner had just adopted a baby the night before the conference,
so that was such excitement for us for her to share. She wanted to come specifically
to our session to share that with us. We were thrilled for her. So Fran is going to go over
menopause a little bit for the older women with pulmonary hypertension and addressing
some of those issues. Thanks, Chris. So we’re moving from pregnancy right on to menopause.
When we did PHA on the Road in Philadelphia in July, this was an interesting piece of
the session and patients said that they really liked some of the information that was presented.
It’s a general overview of what menopause is and perimenopause but people found it helpful.
So some of the basics: what is menopause? Menopause is actually very simply, the point
in a woman’s life when her menstrual period stops. What happens is the ovaries stop producing
hormones estrogen and progesterone. In the US, the average age of menopause is about
51, some women can have it as early as 40 or as late as 55. Some literature says you
can judge when you will go through menopause by comparing it to when your mom wen through
menopause, so it’s just an important time in a woman’s life to take into consideration
what can happen and what cannot happen. Some of the things that can happen are certainly
irregular periods. To truly go through menopause and complete menopause, you have to not have
your period for one full year. So that’s important to know because that is the true definition
of menopause. You still can have some irregular periods in between if you’re kind of in that
transitional period or what they call perimenopause. Certainly hot flashes can be something that
you may be experiencing and they are a sudden feeling of heat usually in the upper part
or all of your body. The face and neck become red, and you may become blotchy over your
chest, your back and your arms. Or you may have heavy sweating and cold shivering that
can follow, so there’s kind of a myriad of things that can happen. Trouble sleeping – you
may find it hard to sleep through the night, you may get sweaty at night and you may perspire
while you sleep. Unfortunately if that occurs you may feel extra tired during the day. Mood
changes are not uncommon either, you may have crying spells, you may just feel generally
a bit crabby, or you can have downright depression. It can also come from stress at this time,
family changes, or overall feeling tired. So remember that mood swings aren’t the same
as depression, mood swings comes and goes, but depression sticks with you. The advice
is, if it is a constant feeling of depression and not having interest in the things you
used to enjoy, you should speak with your family physician. Also, feelings about sex
may change after menopause because what happens is you no longer have your period, so there’s
kind of a two way street here. You feel good about sex because you can’t get pregnant anymore,
or you don’t feel good about it because you don’t have the interest that you used to have
because there is a change certainly in a woman’s libido. So I mentioned perimenopause, the
other definition for it is menopausal transition, that’s the time leading up to a woman’s last
period, and there’s really no way to tell how long that will last, some of the literature
says it can last as long as 2 to 8 years. Again it’s when your periods start and stop
again, but start and stop within that one year period. Also, you can become pregnant
during this time so I think that’s a really important take home message. If you have not
gone through the official menopause and you’re in the perimenopausal period, please remember
that you can get pregnant. Some of the general points about how you can keep yourself healthy
through menopause. Eat well, and eat smart. Sometimes as women get older they feel they
may not need as many nutrients, and that they may need fewer calories, but the important
thing is to eat a balanced diet and you know yourself what you consider to be a balanced
diet to keep your engine up and running. We want you to watch your sodium intake and don’t
take in more than 2grams of sodium per day. Some patients we tell not to take in more
than 1500 mg per day, because we know that where salt goes, water goes, and the last
thing we want you to do is develop water retention and that would be something that we’d have
to treat. Be active, exercise the best way you can. The best exercise, for bone health
as well, is walking. If you can incorporate that and make that a part of your life to
the best that you can. The important thing is to move. Bodies in motion tend to stay
in motion and bodies at rest tend to stay at rest. If you make walking part of your
life, and it doesn’t have to be on a treadmill, or indoors from room to room. We tell some
patients to walk 10 minutes in the morning and 10 minutes in the afternoon, and if they
can combine it, maybe doing 20 minutes non stop each day. Certainly we hope that you
don’t smoke, but if you do smoke, it’s very important that you quit smoking. Smoking can
hurt your general health in so many ways, but it also can damage your bones. We also
want to stress that you should stay away from second hand smoke, and if you feel that you
are still smoking and can’t break the habit, we recommend that you get help to quit if
you need it. Take care of your gynecological health, you will need certain tests like a
pelvic exam after menopause, and most women will need a pap test every three years, but
depending on your personal health history, you may need a pap test more often, so please
check with your primary care provider or your gynecologist. You would need mammograms on
a regular basis and if you’ve had trouble with breast cysts or cancer, that would change
the recommendation for you, so follow the recommendation of your PCP or gynecologist.
You may have some urinary incontinence that comes along with some of the aging processes,
as some of our muscles lose some of their strength. So, if that is a problem for you,
there are ways to address that that are non surgical, and some are surgical, so please
discuss that with your gynecologist. Immunizations and screenings are very important, so keeping
your blood pressure in control, bone density tests should be a part of your general healthcare
as you get older. You may need vitamin B12, you may need calcium, the recommendations
for a woman after menopause, calcium needs can go up to maintain bone health. For women
51 or older, get about 1200 mg of calcium each day. Vitamin D is also an important part
of bone health, so you may need to be prescribed calcium with vitamin D as well. I also
wanted to mention some resources that you can use. They’re listed on the screen. Information on maintaining relationships and establishing
a positive self image can be found at the PHA website. We can take questions, but we
wanted to say thank you, we wish you a happy and healthy holiday, and we wish you the best
in 2016 We have started to receive a couple questions
by chat. The first question is, “Could one of
you speak about having a hysterectomy and
being on estrogen replacement while having PAH?” Sometimes, women do need estrogen replacement.
I don’t know how long that is recommended for but I think that that should be addressed
to your PH physician and maybe you would be on it for a period
of time and it could be weaned down and off. Sometimes women have trouble with vaginal
dryness and sometimes that can be handled with estrogen cream or lubricant to help with
the dryness problem. The next question is, “How early in a relationship
would you recommend that a PH patient talk to their potential partner about their disease and the changes in their life?” It’s very individually based, you have to
come to terms with it yourself and be able to describe it and how you feel and what you’re
able to do and not do with your partner. So as early as you can, and as comfortably
you can, because you want to maintain that relationship with your significant other because
you may need that person in your life. Just to get through the everyday stuff, but
also to have that romantic relationship that carries us through. Even to just be held by
someone. I think it’s very individual and you have to decide how early you want to do
it. The earlier the better but it has to be comfortable for you. You have to understand your disease process
and be able to explain that to your partner. Let them know what makes you feel good, what
makes you not feel good, and then they know what to expect from you as well. I would start really simple, test the waters,
and you decide is this someone that perhaps you want to be committed to for the rest of
your life, and if it’s heading that way, then you may need to sit down and expand a little
bit more on your health issues, maybe start to take them to the doctor with you, let them
know what your medications are, and things like that. As you become more involved and
committed with a partner, I would start to divulge more, as you’re comfortable. They
need to know, too, that your medications are life sustaining for you and you need to take
them, and that you need to take them at the same time every day unless it’s a pump-based
therapy. Those are all things that they may like to learn so that they can better understand
you. Next question, “Are there any specific concerns
or recommendations regarding sex, for example, is there anything that would be unsafe for
a PH patient or ways to manage symptoms?” With any exercise, how we counsel our patients,
is pay attention to how you feel. If you are trying to do something athletic and are starting
to feel light headed and short of breath, that’s too much. Pick the time of day when
you have the most energy and try to negotiate that with your partner, but like regular activity,
you need to pay attention. Some days you may have more stamina and some days you may have
less, so take care of yourself, and that’s why we wanted to do this webinar and support
you all and help you with living with this disease. Sexuality is very much a part of
who we all are and that can’t go away because you have PH. All the things we mentioned,
take them into consideration, and try to incorporate them into the part of the day where you have
most of your energy, and some days that’s not going to happen, but once you get used
to it, most days it can. Also have a little bit of humor, that can be important. Have
a specific term when it’s getting
to be too much. This is your quality of life. Next question, “What do you think the easiest
way, as a newly diagnosed patient, would be to explain what I have to others?” Very simply
I would say that it’s high blood pressure in the lungs, and the lungs in the heart work
together and the heart, at times, will be more strained and can result in fatigue and
shortness of breath. The physician and nurse team of the patient can direct you to materials
— the PHA Survival Guide has a lot of explanations that may be helpful. PHA has many resources.
If you want to bring that special person in your life to your office visit, and it may
not be a husband or wife, bring them, because we can have a conversation as your PH providers,
to help them understand the situation a bit better. If you take your medications religiously,
you will feel better, so they need to understand that we’ve come so far in this disease process
so you will be getting stronger and have more energy as time goes on. Bring them to an office
visit, we would be happy to help them understand better. Knowledge and education will do a
lot. Maybe they’re frightened and don’t want to tell you that. Getting the education and
hearing from the doctor and the nurse what it is about and what is realistic with respect
to symptoms, etc. will be helpful. Next question, “I expect to enter menopause
soon. Should I expect any different symptoms of either menopause or my PH and is there
anything I need to do differently to manage my PH during menopause?” I think knowledge
is power, and get to know as much as you can about the menopausal process. For the most
part, you’ll go through what every woman goes through, because the decreased hormones may
make your vaginal tissues drier and thinner, so sex may be uncomfortable for you, decreased
hormones may reduce your sex drive, night sweats may occur and if you don’t sweat you
feel tired, and so may be emotional changes related to the menopause, but also because
of what you’re dealing with your disease. If any of those escalate to a significant
level and you feel you can’t handle them, make sure your overall health is in the best
shape it can be, and that includes where you are with managing your PH. If you think you
are at a point where any of those escalate, talk to your PH physician and certainly your
gynecologist. Next question, “My 14 year old son was with
my when I first passed out which led to my PH diagnosis. He now has anxiety about me
doing anything. How can I help him relax.” I think it’s important that the 14 year old
goes to the doctor’s appointment and sees that the patient is doing better, we know
that patients can have episodes of syncope which are frightening, and frightening to
see. He needs to know a doctor and nurse are watching over his mother and that this can
happen but they will take good care of her and it’s helpful that he gets to know that
there’s help available. Also if there’s a support group in your area I think it could
be helpful to bring him and to let him know that there are other people with the disease
that are living and I’m sure PHA has resources to help with children understanding a little
bit better about the disease at their level. I think he needs to feel more secure to know
that mom is being taken care of. I saw on the national news that there are camps in
the summer for children who are not only dealing with the death of a parent but with parents
with chronic illness, and I think they’re free. One of the former Philadelphia Phillies
has an organization that does this. PHA could help you with that because then they’re in
their own element with other kids. Not just kids that lost parents but kids with parents
with chronic illness. Sounds like a great resource. Get in touch with PHA if you’re
interested in that. Next question, “The presenters mentioned that
women can experience a change in body image along with their PH. Can you talk about those
changes and talk about how to improve and maintain self confidence and self image?”
I think there are several things. Even though you’re diagnosed with PH, what about you makes
you feel the best about yourself? Is it to keep your hair a certain way, to wear your
makeup a certain way, to dress a certain way, things that really define you. Incorporate
your disease into your life has to happen going forward, but if you try to maintain
that piece of you that defines you, and make sure that you are dressed the way you want
to dress and use your makeup and do the things that make you you, I think will help. The
other thing is, knowledge is power. So know as much about your disease process as you
can, and what your prognosis is, have these conversations with your PH team, what your
prognosis is, what they expect for you, based on the therapies you’re on, and what might
change. That will build confidence in you, I think, if you have a better understanding
of where you’re headed. Don’t lose your individual self. The things that make you you. That identify
you. Your close friends should remain your close friends, I can’t imagine that if they’re
your good friends that they would ever, ever, go away. Do the things that you like to do,
and if you’re tired, then you don’t do them on that particular day, but try to accentuate
the things that make you who you are that make you feel better about yourself, whatever
that is. If you play an instrument, if you like to volunteer, whatever it is that makes
you feel better about yourself. You are not the disease itself, you are a special person
and it’s so important to take time for yourself and you fit in the care that you need into
your life but you still may be a mother, sister, friend, coworker and you want to keep those
relationships. One that pops in my head is Robin Roberts, who had an episode with needing
chemo and a type of cancer, and you remember she lost her hair and she’s in front of the
public all the time and she wore a wig and she still came with her makeup on and over
time she got more confident and even went without the wig and she still beautiful and
I don’t think anyone looked at her and thought about that cancer diagnosis, we looked at
her and thought “wow, she’s really strong.” So I give her credit for inspiring other women,
and I think it’s a really great example. Last question, “Is there a relationship between
birth control and chronic thromboembolic pulmonary hypertension?” Not typically, but sometimes
patients on oral contraceptives can develop clots, so this is something that would be
discussed if this is the right type of pregnancy prevent for you, would need to be discussed
with your physician. It’s not a cause of CTEPH, though. Sometimes other things happen when
women are
on oral contraceptives, like they end up being immobile for a long period of time, if their
plane didn’t take off and they have to sit forever and then they are on a long flight
across the united states. That immobility has caused it. The fact that they were on
oral contraceptives at the time is a side bar, but the immobility is really what caused
it. People have types of factors in their blood that maybe make them more at risk for
developing clots so there’s a whole bunch of reasons why people develop the chronic
thromboembolic, it’s not just from taking oral birth control pills. You should never
take oral contraceptives and smoke, because it’s a really bad combination. That should
have a big circle with a slash through it. Wonderful, thank you for that. I think we’re
about of time for today, so I’d like to thank Chris and Fran for leading this conversation
and of course thank you to all of you for attending the webinar today. I hope you found
the conversation valuable and
that it will be helpful in your life. If you would like to browse PHA’s resources, please
visit www.PHAClassroom.org. Have a great day! Thank you and take care.

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