Turn to page 6 for more on this story - Western...
20
Turn to page 6 for more on this story PAGE 1
Transcript of Turn to page 6 for more on this story - Western...
Turn to page 6 for more on this story
PAGE 1
Inside this issue....
Spring 2016
Cover Story................................1 Adopt a PH elePHant
The Hype....................................2 Editors update, Birthday Club Notice Board..............................3 Donations, Meetings, Fundraising, Events Calendar, Announcements, Sponsors & Supporters
Spring Sunshine Recipe..............4 Healthy Sausage Rolls
Health Professionals...................5 Medic Alert Foundation
In the Spotlight...........................6 Cover story continued
Good Health...............................7 Misconceptions about PH
PHocus.......................................8 Men & PH - What he won't tell you
In Life With PH.......................9/10 4 things NOT to say to someone with Pulmonary Hypertension
News from the Network............11 Would you wear a PH badge?
Living Better Series...............12/13 8 tips to live better with PH
PH Feature......................14/15/16 Pharmacy - Medications and PH
Letter to my Lungs.....................17 LIFE support group exercise
Flourish Support Group.............18 Guest Speaker Melissa Dumitru
Community Spotlight.................19 Memorial Linda Franklin & Bereavement information
PHWA at your fingertips............20 Contact Details for Home Base, WA Support Groups, Useful Contacts, PHWA Disclaimer
Hello PH family and welcome to the Spring edition of PHan Mail magazine 2016.
It's been an eventful few months for us here at PHWA with the release of the new resources, the PH Patient Pack and Invisible Diseases projects being completed in June and released in July. The distribution to patients within the membership has been completed and the final phase is with the medical health professionals. We have had some great feedback from both arenas and we are pleased that this project has been so worthwhile. Packs remain available online at phwa.info FREE to all patients living with pulmonary hypertension.
Planning is well underway for this year's November awareness month events. See more on page 6 about our gorgeous little baby knitted elephant for the "Adopt an elePHant, and become part of the PHamily", project which is part of the PH Aware campaign, "Don't ignore the elePHant in the room, PH"! The toys come with an adoption certificate and PH public service announcement all for just a $5.00 donation. They are being released at our family fun expo in November so check that out on page 6 too and under Events at PHWA.info.
In closing, we lost a very close friend and PHWA member in July, 2 days post transplant. We have a small tribute to her on page 19.
RIP PH Angel Linda Franklin - PHWA Member & ODAT Liaison Our sincerest condolences to her beloved husband Jeremy, and two sons Riley and Toby, her parents, siblings and extended family and friends for this incredibly sad loss. Memorial continued page 19.
Be kind to one another, your editor Melissa & the PHWA Team
Editor
PAGE 2
The Hype
Proud Sponsors & Supporters of PHWA
Short Break Grants The Carers WA Short Break Grants are offered to carers
(individuals, partners in a caring role and informal or formal carer groups) who
would like to take a short break from their caring role. Metro and rural carers can
apply for a small grant ($55 to $160 per carer) to have a short break. Applications
for the next round of funding open on Monday 3rd October and close Friday 14th
October 2016. For further information or to download an application form, or call
Mary O’Neill on 1300 CARERS (1300 227 377) or email
Donations & Fundraising - Support group gathering raffle June $105.00. PH knitted
baby elephant toys for awareness month to date $25.00.
Thank You's & Shout Out's - Wyllie Arthritis Centre who generously provide their
function room to us for each meeting. This is invaluable to us and we are very
grateful. PHWA Sponsor Gabrielle Worthington from Dependable Laundry
Solutions. She is very generously sponsoring us for the support group "PHan Mail"
magazines to be printed. Tony Beard Business Foundations who advises & guides
us on our future planning. Connect groups who continue to support and guide our
group, Carers WA who are there to offer assistance to our carers wherever they
can, and to our Volunteers, family & friends who work tirelessly to support our
team and its members; we greatly appreciate your assistance, kindness & reliability.
Support Group Meetings - PHWA Please advise if transport is needed we'll do our
best. Remaining Meeting for 2016 - Tuesday's 11.00am - 2.00pm, registration 10.45
DATES: 25th October guest speaker PH Specialist Prof Eli Gabbay, 6th December
Christmas Party & final meeting for the year (price TBC) Catered Lunch support
group gatherings: cost per person $12.00 pp (subject to change, please advise
dietary needs) - Menu will consist of a Roast dinner with a dessert to finish.
Catered by the Nourished Cafe Wyllie Centre. Morning tea and dessert is supplied
by PHWA.
Landsdale Forum Centre
PAGE 3 PAGE 3
Healthy Sausage Rolls
Ingredients
2 tsp olive oil 1 brown onion, finely chopped 1 garlic clove, finely chopped 2 slices (80g) whole meal bread, torn 500g chicken tenderloins, chopped 1/4 cup chopped fresh continental
parsley 2 tbs chopped fresh chives 1 (about 120g) zucchini, finely grated 1 tbs lemon juice 1 tsp finely grated lemon rind 3 sheets frozen reduced-fat puff
pastry, partially thawed, halved 1 egg, lightly whisked 1 tbs sesame seeds
Mixed-herb dipping sauce
200g reduced-fat natural yoghurt
2 tbs chopped fresh parsley
2 tbs chopped fresh mint
2 tbs chopped fresh chives
1 tbs lemon juice
1 garlic clove, peeled
Recipe shared with you by Taste.com
Method
1. Step 1
For the dipping sauce, process all the ingredients in a food processor to combine.
2. Step 2
Heat oil in a frying pan over low heat. Cook onion and garlic, covered, stirring often, for 10 minutes or until soft. Cool.
3. Step 3
Process the bread into crumbs. Transfer to a bowl. Process the chicken until a mince consistency forms. Add the chicken, onion mixture, herbs, zucchini, lemon juice and rind to breadcrumbs. Season. Mix to combine.
4. Step 4
Preheat oven to 220°C/200°C fan forced. Place one-sixth of chicken mixture along centre of each pastry piece. Brush edges with water. Fold over filling, pressing to seal.
Turn pastries over, seam-side down. Brush with egg. Top with sesame seeds. Cut each into 6 pieces. Place on lined trays. Bake for 25 minutes or until cooked. Serve with the dipping sauce.
Suitable for freezing, wrap well in airtight container.
Enjoy!
PAGE 4
Health Professionals
Better than the rest
You may never see her, but chances are that if you are caught in a medical emergency and you’re wearing your Medic Alert medical ID, then Dr Sarah LePage’s expertise could be the difference between life and death.
As our resident clinical expert, Dr LePage assists to ensure that all our engraving meets standard abbreviations and best practice in healthcare communication, General Practitioner Dr LePage says it is critical to have such quality control processes in place.
“What use is a Medic Alert bracelet if it doesn’t have the correct description of a condition or if the wording is not easily understood by emergency responders!?” says Dr LePage.
“It’s my job to oversee what people are engraving on their medical ID’s and to make sure that Medic Alert's membership services staff and all emergency and healthcare professionals understand exactly what those engravings mean.”
While other medical identification organisations allow their members to engrave anything they want, Dr LePage says she is proud to work with an organisation that is committed to ensuring that even a member of the public can understand and act on engravings.
“If someone is lost and wondering in the street and suddenly you see on their bracelet that they have ‘Dementia’, memory loss and ‘Contact details’ listed on their medical ID, then suddenly anyone can act on that situation and help protect that person,” says Dr LePage.
“I guess my other focus is ensuring that Medic Alert membership services staff is also aware of standard medical abbreviations, and also rare conditions and engravings we are confronted with from time to time. Because at the end of the day this level of quality control is what keeps people safe and can give true peace of mind to members.”
While we can’t always avoid an emergency, Dr LePage says it is reassuring to know that first responders are also being taught how to find, interpret and act on the information she oversees on engravings. “That’s the final step of the process that really makes a difference when every second counts – if our products are easy to find and the person’s information is readily available, then that’s going to help a lot,” says Dr LePage.
“I don’t know exactly how many lives we’ve saved, but if it’s even a handful, then that’s something to be proud of, because without this quality control process we have at Medic Alert then perhaps some people would fall through the cracks and healthcare professionals wouldn’t be able to respond as quickly, or in the right way, in an emergency.” Dr LePage is responsible for reviewing all Medic Alert engravings for new members who join and they have not had their application authenticated by a GP. This is a quality control measure to help ensure the safety and protection of all Medic Alert members. For more information about this service or to check that your engraving is up to date call 1800 88 22 22.
PAGE 5
Awareness Fundraiser Expo Pulmonary Hypertension Awareness Month November
2016 - Fun for the whole family!
Saturday 12th November / 10am - 2pm Centre Mall outside Woolworths at the Woodvale Shopping
Centre, corner Whitfords Ave & Trappers Dve, Woodvale
Proudly Supported by
This awareness fundraising expo is a combination of family fun activities, homemade baked savoury & sweet goodies, awareness stands, resources, huge raffle, face painting, balloon animals, Cupakes 4 PH and much more. Come along and participate in the 60 second straw
test breathing challenge. Adopt a PH elePHant and become part of the PHamily! PAGE 6
goodhealth. Misconceptions about Pulmonary Hypertension
Story by Serena Lawrence PH patient and blogger
When I was diagnosed with pulmonary hypertension, I learned that it was a rare disease. I had never heard of pulmonary hypertension before my diagnosis, and I learned that none of the people in my life knew about the disease either. For those who might want, or need, to know, here are some points to keep in mind.
1. Pulmonary Hypertension is different from Asthma
A few of my friends tried to sympathize with me when I was diagnosed with pulmonary hypertension by saying, "I understand how you feel. I have asthma".
I've had asthma attacks, to the point where I was hospitalised for a week. From my experience, asthma and pulmonary hypertension are very different diseases, even though they both cause breathing problems. I am not trying to downplay the severity of asthma. Asthma can be a very dangerous disease, but generally, it is a manageable disease.
People know what asthma is, there are far more medications to help treat it. There are more specialists and doctors available who understand and treat asthma. Although it can be life- threatening, asthma usually isn't considered fatal.
Growing up with asthma, I was never really afraid of what my future might hold health-wise. I was never afraid that my asthma might stop me from doing something. It never prevented me from being physically able to do a routine task, have a career, move out of home, or have children. Unfortunately, pulmonary hypertension has done all of those things.
While asthmas and pulmonary hypertension are both diseases that can make breathing difficult, it is important to remember that pulmonary hypertension is considered to be much more severe and life threatening.
2. My Lifestyle and Diet Didn't Cause Pulmonary Hypertension
Most people know what regular hypertension is. Most people do not know what pulmonary hypertension is, and how it differs from regular hypertension. I found that after diagnosis, many people thought that I had done something "wrong" to cause my pulmonary hypertension. Some thought that my diet must have been bad, others asked if I smoked. (I never smoked a day in my life and I was a vegetarian who tried to eat mostly healthy foods when I was diagnosed).
Sodium can certainly make the symptoms of pulmonary hypertension worse, but my diet didn't cause pulmonary hypertension. Bad karma from another lifetime did not cause my PH, either. (I wish I was kidding, but multiple people have tried to blame bad karma from a past life on my diagnosis).
3. Out of Sight, Out of Mind
I spent over the first year after being diagnosed with pulmonary hypertension on oxygen nearly 24/7. I remember several months after I was diagnosed, I finally went out to a coffee shop with my boyfriend. I was at a point where I could finally take my oxygen off for small spurts while sitting.
My boyfriend took a picture of me sitting without my oxygen and I shared it online. I shortly received nearly 50 messages from friends and family congratulating me on getting "better". That was an awkward conversation to explain to people - especially 50 times. Not everyone with pulmonary hypertension requires supplementary oxygen, and sometimes people only need it for various activities like flying, sleeping, or walking.
The absence of oxygen doesn't mean that someone's pulmonary hypertension has gone away.
4. Just Because You Can't See It, Doesn't mean It's Not Real
Most people with pulmonary hypertension do not look sick. Even when I relied on oxygen 24/7 people looked at me with a puzzled face. I looked the same, minus that oxygen tank I was tethered to. If pulmonary hypertension is so serious, why do some of us look so good? (We're cute, we can't help it!).
Simply put, pulmonary hypertension is an invisible illness. Many people with pulmonary hypertension may look "fine", but the symptoms of the disease and the side effects from the treatments can range in severity from patient to patient. Unfortunately, many people equate how good you look with how good you must feel. Having to explain how serious pulmonary hypertension is just because it's invisible can be very hurtful. Next time you see someone who looks "fine" using a disabled accessible parking bay; don't question their right to park there if they have the proper permit. Not everyone who is disabled requires a wheelchair. In fact, not everyone who is disabled requires medical equipment!
I might look like your average 28 year old, until you need me to bend down to pick something up or go up a flight of stairs. What is the biggest misconception someone has said to you about pulmonary hypertension? Story shared with you through Pulmonary Hypertension News.Com
PAGE 7
PH CUS
What HE Won't Tell You About HIS PH!
July 13, 2016 Guest post by Doug Taylor, leader of Midlands SC Palmetto PHriends support group), PH patient and PHA Board Member -- after a recent discussion with another male patient and attending the men’s medically led session at PHA’s 2016 conference, Doug identified some issues that some men may face after a PH diagnosis. While pulmonary arterial hypertension affects more women than men, men may feel that they face their own unique challenges. If the pulmonary hypertension patient is a man, there may be some things he isn’t telling you. Regardless of whom he is – your husband, your boyfriend, your son, your father, your brother, your nephew, your uncle – he may feel that he needs to keep some things buried. Whether he is single, married, divorced, or widowed, gay or straight, young, middle-aged, or older, here are some things that men with PH may experience:
His diagnosis makes him confused and angry.
He wants to still be “the strong one” in the family.
He doesn’t want to be a burden on anyone.
He doesn’t like to be called “sick” or “disabled.”
He gets angry, sad, and discouraged when he can’t do the things he used to do.
He wonders what he will do now that he is not the bread winner.
He wonders what he will do now that he is on disability.
He wonders how to make ends meet without his income.
He wonders how he can afford his medications.
He wants to see the kids/grandkids/nieces/nephews grow up.
He wants to spend active quality time with you and the rest of the family but is sometimes just too tired.
His PH meds sometimes make him feel worse.
Taking RevatioTM (sildenafil) or AdcircaTM (tadalafil) may help stimulate him sexually, but it isn’t always enough to help him finish the deed, and that can be frustrating both physically and mentally.
He wants to know “how to fix it.”
He is sometimes afraid.
Connect with others living with PH at myPHA, an online community for people dealing with PH, at www.myphassociation.org.
Story shared with you by sister group USA based PHAssociation.org
PAGE 8
Would You Wear a Badge to Let People Know You Have
Pulmonary Hypertension?
Story by "In Life with PH" - A Column by Serena Lawrence
Would you wear a badge to let people know that you have an invisible illness, like pulmonary hypertension?
The Transport for London (TfL) is offering button-on badges to its riders with hidden health conditions. The badge reads, “please offer me a seat,” in hopes of aiding those with conditions that making standing difficult. It will be part of a six-week trial, with 1,000 participants wearing the badge starting on Sept. 12.
TfL is beginning this program to provide more assurance to passengers with invisible disabilities. The agency will also help spread the word about this project through social media and customer information, in order to encourage passengers to be courteous toward those with the badges.
I think that raising more awareness for invisible illnesses, such as pulmonary hypertension, could really help educate the general public on what disability and illness can look like. Disability, illness and pulmonary hypertension can look like anyone!
The public buses where I live have signs displayed stating that certain seats should be served for people with disabilities. The sign, along with the reserved seats, both have a photo of a wheelchair. This symbol is used for any kind of physical disability, and displayed on bathroom stalls, parking spots, and even my accessible parking badge. The issue is, I don’t use a wheelchair. The general public sees me come out of a car in an accessible parking space and looks confused, even outraged!
By continually using the symbol of a wheelchair to depict all illnesses and disabilities, we are reinforcing the idea of how disabilities should look. By using a wheelchair as an umbrella symbol for health conditions, we miss an opportunity to help educate the public about the validity of invisible illnesses and disabilities.
I personally would feel a little uncomfortable wearing a badge that indicates that I am disabled, but I also know that sometimes the badge doesn’t make a difference. When I wear my oxygen, my badge is placed around my face. Standing on a bus driving over a bumpy road with nothing to hold onto sounds like it would be a little difficult for me to do with my condition. I would be more inclined to take the bus (something I haven’t done since diagnosis) if I knew that I could secure a seat.
I would be concerned that strangers would still be cruel about my condition, as they have been in the past, if I wore a badge asking people to give me their seat because I have pulmonary hypertension. What if I had the badge on and was met with the same kind of comments and stares I get when I use an accessible parking space? It can feel pretty disheartening, and thinking about being trapped on a bus with someone who could potentially do that also sounds like a nightmare.
In an ideal world, we wouldn’t have to wear badges to get a seat so we could ride public transportation safely and comfortably. People would just be kind enough to offer if we asked, because they would understand that disabilities and illness can often be invisible.
Perhaps we could change the way society views disabilities by the changing the symbol we use to depict them.
Source: http://www.bbc.com/news/uk-england-london-37222554
PAGE 9
Serena Lawrence graduated from the University of Waterloo 2012 where she earned an honors degree in Fine Arts. After she was diagnosed with Pulmonary Hypertension in 2013 she started the blog called The PHight or Flight Project where she began freelance writing and curating guest writer content. Serena enjoys a good cup of tea, little adventures and her Boston Terrier named Sammy.
I found that after I was diagnosed with pulmonary hypertension, I received a bunch of off-brand advice. I realize the majority of what I heard from others was an attempt to make the situation better. Unfortunately, some of the words I received at times have been hurtful despite the well intentions behind them. I began to find it quite difficult to feel like I was biting my tongue in an attempt not to hurt other people’s feelings, even though their advice felt like it was minimizing what I was going through. As a blogger, I also became scrutinized online by strangers who tried to give me unsolicited advice and “words of wisdom” that simply do not apply to my situation.
Below are 4 things not to say to someone with pulmonary hypertension. What would you add to the list?
Can you tell I have pulmonary hypertension?
1. “At least it’s not cancer.”
Pulmonary hypertension was recently upgraded to a rare disease, after being considered an orphan disease for quite some time. What does this mean? Pulmonary hypertension affects only a very small percentage of the population. For example, I have idiopathic pulmonary hypertension, which only affects about 1 out of a million people. In Australia, about 1 out of 200 people will develop cancer, and 1 out of 3 Australians will die from cancer, based on 2016 estimates.
Based on these statistics, we can see that cancer is a more prevalent disease, meaning more people are aware of how devastating it can be. However, many pieces of literature about pulmonary hypertension state that it is worse than cancer. There is no chance of remission or a cure with the current treatments available for pulmonary hypertension. Treatments for pulmonary hypertension have advanced within the past decade, but unfortunately, it is still considered a progressive and fatal disease. Many of the treatment options also cause terrible side effects, and can be very invasive.
2. “You don’t look sick.”
Pulmonary hypertension can be both a very visible and an invisible disease. Some people with pulmonary hypertension may require supplementary oxygen, a mobility scooter and/or visible medication such as Flolan, which is administered 24/7 directly to the heart through a rather large pump. Other people with pulmonary hypertension may not require oxygen, or may have less discreet medication (like oral and inhaled.) Even when I needed to use a mobility scooter and oxygen, I found that people still questioned the severity of my diagnosis because I was rather young and still looked OK. I think society has this vision of what a sick person should look like, and it is often someone who looks ill due to the side effects of chemo and radiation. Some of us may look totally “normal” on the outside. Pulmonary hypertension affects each person very differently. You know that quote “be kind; everyone you meet is fighting a hard battle”? This rings especially true for people living with pulmonary hypertension, which is both very taxing physically and emotionally. It is difficult to adapt to such a heavy diagnosis. I was diagnosed over two and half years ago and my physical limitations still feel foreign and frustrate me to the point of tears. Feeling like I have no stability in terms of my future is also very confusing, and, well, devastating.
What most people assume being
sick looks like.
PAGE 10
3. “Eat, pray, love.”
A lot of people who have never faced pulmonary hypertension will try to offer advice. I believe that most of the advice that I received (no matter how insulting or useless) is coming from a good place. People want to help. People want to be problem solvers. One of the most infuriating pieces of advice I have received over and over again from strangers online and even people I know in real life is that I should go on some “eat, love, pray” mission. Dozens of people have told me that if they were me, they would travel the world and try all the exotic foods of the world before the worst of the worst happened.
Some people with pulmonary hypertension might be able to travel the world, others unfortunately may not. Why? Well, travel insurance would be very difficult to get. The whole nightmare of traveling with medications and supplementary oxygen. The chance of getting ill. Flying can be dangerous for some people with pulmonary hypertension because of the altitude. Oh, and many people with pulmonary hypertension have to be very careful with sodium intake. Too much salt can actually cause heart failure! Trying a new restaurant in town can be very scary; I can’t imagine trying to order a meal in another country. Traveling is expensive, and so is having pulmonary hypertension. And one more very important point…
Movies and books have a tendency to romanticize having a serious illness. It is important to remember that not everyone with pulmonary hypertension may be physically able to travel. Simply put, many people may not feel well enough to travel. The side effects of medications can be disabling, and this is without the physical limitations the disease may cause.
4. “Do this”
After diagnosis, I found that a lot of people who had never even heard of pulmonary hypertension tried to give me advice on how to get “better.” I believe that most of the strange advice I received has been from a well intended place. People want to be fixers and problem solvers, but sometimes, advice can come across as very hurtful (despite the well intentions.)
For example, many people associate the word “hypertension” with an unhealthy diet. Friends and strangers alike started offering me diet advice. I do believe that eating right can help with your overall health, but at the same time, pulmonary hypertension is very different than regular hypertension. There is no evidence that a certain diet can cause pulmonary hypertension. By the same account, going vegan and drinking green juices probably won’t be the magic cure I dream of. I was actually vegetarian before I was diagnosed and ate pretty healthy, minus the occasional poutine (did I mention I am Canadian?). You should probably leave the diet advice to a professional.
If someone wants your advice on something in terms of diet or spiritual guidance, let them come to you. It is OK not to have all the answers. Sometimes listening is the most helpful thing you can do!
PAGE 11
Pulmonary hypertension (PH) is a rare lung disease which refers to an increase in blood pressure in the pulmonary arteries. PH is a chronic disease that can lead to a poor quality of life. PH can also lead to right heart failure if left without medical intervention, a serious complication that can lead to death within just three years. According to Everydayhealth.com, here’s a list of eight tips to help you cope and live better with your pulmonary hypertension.
1. Get yourself a support group. Don’t try to deal with everything on your own. Finding other people who are going through the same thing as you is a great help. That’s why one of the things you should do is find and attend a support group. If you want to find one close to where you live, talk to your doctor and ask for information; if not, you can find a lot of support groups online at (Connect Groups) where you can relate to what other people are experiencing.
2. Look for a specialist Pulmonary hypertension can be a really tricky and difficult disease to live with. It’s hard to diagnose, which can lead to being misdiagnosed several times along the way. It’s also a difficult disease to treat, which is why it’s extremely important you find a specialized physician who knows how to diagnose, treat and help you through the development of your condition. The best choice is to look for a good pulmonologist (lung doctor) or cardiologist (heart doctor) who are specialised in pulmonary hypertension.
3. Be prepared for any emergencies You can’t always predict what is going to happen in your daily life. So preparing your own emergency kit is pretty much essential. You should be prepared for any kind of unpredictable thing that may happen, so carrying medical notes and/or medications around with you is a must. If you’re taking medicine regularly and you stop for whatever reason, your symptoms could get worse. So always be prepared for the worst, but expect the best.
4. Take care of your catheter - ( Hickman Line) A lot of pulmonary hypertension patients take their medicine in an intravenous way. So they’re required to have a device called a catheter implanted in their chest. This device is what helps the medication to be delivered in a continuous flow. If you live with a catheter, you should take care of it to avoid any risk of infection. Ask your physician for the best tips on how to keep it infection-free. Washing your hands and putting on sterile gloves before doing maintenance tasks (such as changing your medication, tubing, or catheter dressing) are some of the things you should always do.
PAGE 12
5. Involve your family and your friends in your daily life Keep your loved ones close is always good advice, no matter what. That’s why you should be surrounded with friends and family. Not only to help you feel good, to make you smile, and to love you but also to assist you whenever you may need help. It is also important they help you through the diagnosis and evaluation of the disease, and they keep updated with important information about it.
6. Keep your medication info at close reach Some medications used to treat pulmonary hypertension are rare. So, as a result, emergency medical responders and even hospitals might not be familiar with how to work with patients taking these drugs. For example, if you take continuous medicine through a catheter, health providers could trigger an emergency if they do the wrong thing to the catheter. As a result, be sure to keep information about your medications handy to share in an emergency.
7. Maintain a backup medical supply If you use medications which are delivered continuously through an infusion to treat your pulmonary hypertension, it’s important to keep a backup emergency kit containing the medicine on hand, Schmidt says. Interrupting the flow of a medicine, even momentarily, can be fatal according to the Pulmonary Hypertension Association.
8. Always stay positive Although living with pulmonary hypertension is no walk in the park, that doesn’t mean you have to go to the dark side of life. It’s true it can be hard, but adopting a positive attitude towards life and the condition itself is – without a doubt – a great way to help you deal with the situation and to improve your life. Remain productive and active, and with a smile on your face (whenever you can!).
PAGE 13
August Support Group Gathering Guest Speaker Ravin Pashpu, Pharmacist Guardian Pharmacy Landsdale spoke to us about the pulmonary hypertension medications we take, any contraindications, and side effects along with things to avoid or look out for. (Extra Info courtesy- PulmonaryHypertensionNews.Com)
Let's talk about Medications
Medications for treatment of pulmonary hypertension can be grouped into 5 major groups.
Prostacyclins Endothelin receptor antagonists Phosphodiesterase 5 inhibitors Soluble guanylate cyclase (SGC) stimulator Calcium channel blockers
The main effects of these 5 types of medications is to increase vasodilatation which widens and relaxes the blood vessels, allowing blood to travel through the lungs, become oxygenated and carry that oxygen to the heart.
Prostacyclins (Epoprostenol, Illoprost, treprostinil) prevent platelets sticking together - reducing the risk of blood clotting as well as relaxing the arteries allowing increased blood flow.
Epoprostenol is commonly known by its trade names Flolan & Veletri, which are administered via infusion. After a dose has been determined patients can receive treatment through a continuous infusion through an indwelling central venous catheter (Hickman Line) using a portable infusion pump. Treprostinil (Remodulin) is also administered via an infusion pump however Illoprost otherwise known as Ventavis is the only prostacyclin that is administered via nebuliser. Although it is less invasive than an infusion, care must still be taken to avoid contact with the solution.
EXPLANATION - PulmonaryHypertensionNews.Com
Pulmonary hypertension is a disease which narrows the blood vessels, so using blood vessel dilators as a treatment will help since they work to open narrowed blood vessels. Epoprostenol (Flolan) is one of the vasodilators for PH most commonly prescribed. However, as this is a medication whose effect only lasts a few minutes, Epoprostenol needs to be injected over and over again via an IV through a pump which PH patients have to wear in a pack on their belt or shoulder. Like all medications, it has its side effects which include jaw pain, nausea, diarrhoea, and leg cramps, among others.
Common side effects of Prostacyclins include vasodilatation, dizziness, headache, jaw pain and GIT symptoms such as nausea, vomiting, diarrhoea. If you are prescribed this medication do not suddenly stop as this can lead to worsening of PH symptoms.
The second group of medications are known as endothelin receptor antagonists. Which include drugs such as ambrisentan (Volibris), Bosentan (Tracleer), Macitentan (Opsumit).
EXPLANATION - PulmonaryHypertensionNews.Com
Endothelin is the substance that causes the blood vessels to narrow. Endothelin receptor antagonists are medications that reverse this effect. Bosentan (Tracleer) is one of these medications; whilst taking it, pulmonary hypertension patients may see their energy levels improved and their symptoms relieved. If you’re prescribed this medication, you will need monthly liver monitoring since this drug is very strong and can cause damage to your liver. A similar medication to Bosentan, which also stops the narrowing of your blood vessels, is Ambrisentan (Letairis).
Endothelin receptor antagonist work by blocking Endothelin-1. In the body endothelin-1 causes narrowing of blood vessels as well as a number of other processes that lead to increased damage. Blocking its effects using medication causes the desired result of vasodilatation and improved exercise capacity. It is an effective medication in many patients.
Side effects of endothelin receptor antagonists are related to its vasodilator effects. As the blood vessels open up and more blood flows through causing flushing, headaches, nasal congestion and swelling of the fingers and toes. Some patients will also experience abdominal pain however it is less likely with Bosentan (Tracleer). However, if you experience vomiting, severe abdominal pain, jaundice, fatigue or dark urine you must tell your doctors immediately as these are signs that the medication is affecting your liver.
PAGE 14
Macitentan is a new drug so there is currently not a lot of data available. Patients are advised to report any side effects to their doctor.
Phosphodiesterase 5 inhibitors are drugs such as Sildenafil and Tadalafil more commonly known are Viagra and Cialis. They work similarly to the endothelin receptor antagonist however instead of blocking endothelin-1 they block phosphodieterase-5. Blocking of this receptor leads to relaxation of the smooth muscle increase blood flow and reducing vascular resistance. The most common side effect - prolonged erections. Some cases have been reported the male patients experienced this 'side effect' for over 4 hours - in which case immediate medical treatment is required.
EXPLANATION - PulmonaryHypertensionNews.Com
Sildenafil (Revatio) and Tadalafil (Adcirca) are sometimes used to treat pulmonary hypertension. Sildenafil and its compounds have been found to improve exercise ability and reduce clinical disease progression in patients with pulmonary arterial hypertension (PAH). Tadalafil, marketed under the name Adcirca, is used to treat patients with PAH as it also can improve exercising ability. Both of these medications are used to open the blood vessels in the lungs and as a result, they allow blood to flow through more easily.
Many patients experience nose bleeds on these types of medications so to treat this I recommend a product called CoPhenylcaine which can be obtained without prescription. The active ingredients in this spray are lignocaine and phenylephrine. Lignocaine helps to reduce pain by numbing while phenylephrine tightens the blood vessels and helps to slow the bleeding allowing the body to naturally clot and stop the blood flow. As this medication is in the form of a nasal spray it works directly on the area to rapidly stem the bleeding, while having no side effects on the rest of the body.
Calcium channel blockers are the 4th type of medications that are sometimes used at high doses in patients who respond favourably to an acute vasodilator challenge. However, less than 10% of patients will respond to or tolerate them long term due to their extensive side effect profile.
Another new drug on the market is Riociguat known by its trade name Adempas.
Riociguat is a soluble guanylate cyclase stimulator or GSC stimulator for short. In many patients with PH there is a malfunction in the pathway that stimulates SGC to produce nitric-oxide. Nitric oxide In turn causes the much needed vasodilatation and reduction in pulmonary artery pressure. Thereby taking medication to stimulate the SGC to produce more nitric-oxide improves outcomes for patients.
This medication however is affected by tobacco smoking so it is not recommended for smokers and it cannot be used in conjunction with phosphodiesterase-5 inhibitors or angina medication.
Let's talk about Treatments
Surgery is an option for patients where medication is not able to adequately control PH symptoms. However, they are used as a last resort due to the risks involved with heart surgery. The two procedures that are available are atrial septostomy and transplantation.
Atrial septostomy involves creating a new opening between the upper left and right chambers of the heart to help relieve the pressure on the right side of the heart. While transplantation of a lung or in some cases a heart and lung may be an option for younger people. However like all transplantation surgeries there is a risk of rejection and infection as well as lifelong medication with immunosuppressant's to help reduce the chance of rejection.
EXPLANATION - PulmonaryHypertensionNews.Com
Diuretics are used to help eliminate excess fluid from the body. They are usually known as water pills and they reduce the work your heart has to do. They can also be used to help your lungs limit fluid build ups.
Remedies to help manage pulmonary hypertension
Medications aside there are many other lifestyle and home remedies that can help improve your quality of life. Firstly stay as active as possible and maintain a healthy weight. Reducing weight reduces that load on the heart as it doesn't need to pump as hard to get blood to circulate through the body. Secondly quit smoking and avoid second hand smoke - this is the single most important thing you can do for both your lungs and heart.
PAGE 15
There are currently a wide range of smoking aids available in pharmacy from homeopathic remedies to nicotine replacement therapy in the form of gum, patches and inhalers. Sometimes there is so much choice that it can be overwhelming so have a chat to the pharmacist on duty and they will be more than happy to help you find something that is suitable for you.
Monitoring your salt intake is another important measure to help mange PH symptoms - try to use low sodium salt or avoid salt altogether because of the obvious risk to your blood pressure.
If your prescribed medication causes nausea and vomiting manage these side effects by eating small amounts of food at a time, drink plenty of liquids, avoid greasy and fatty foods and limit high carb foods such as pasta.
Limiting your caffeine and alcohol intake is also important as this can change your blood pressure.
EXPLANATION - PulmonaryHypertensionNews.Com
As people with pulmonary hypertension have difficulties breathing, something they will always need is oxygen. It’s possible your doctor may suggest you breathe pure oxygen – a treatment known as oxygen therapy – to help treat this PAH.
What are things to avoid in patients with pulmonary hypertension?
Patients taking phosphodiesterase-5 inhibitors should avoid angina medication in particular glyceryl trinitrate which comes in the form of a spray called nitrolingual. Pseudoephedrine is another drug that must be avoided. Pseudoephedrine is available over the counter in pharmacies and is often found in cold and flu preparations such as Codral cold & flu. It is extremely important that you tell the pharmacist that you have PH and they will select for you products that are pseudoephedrine free.
Over the counter ani-inflamatories such as ibuprofen and aspirin should also be avoided as there is a risk of increased blood pressure with these types of medications. In the instance where you may need pain relieving medication it is best to use paracetamol based products, topical rubs and hot or cold packs.
Sounds strange but avoid sitting in hot tubs or saunas or taking long hot baths or showers - these situations can excessively lower blood pressure which in the average person is a good thing, however as many of the medications for PH already reduce blood pressure a further drop in blood pressure can lead to fainting.
Another measure to help you manage is to avoid flying or travelling to high-altitude areas. In some cases this is unavoidable, in which case speak to your doctor who may recommend extra oxygen during air travel.
Any respiratory infections can have serious consequences in patients with PH so it is highly recommended that patients have annual influenza and pneumococcal vaccinations which is recommended every 5 years. It is important to ensure daily supplementation with immunity boosters to maintain healthy function. Herbal supplements containing Vitamin C, zinc, Echinacea, astragulaus or even olive leaf extract are all beneficial to maintaining a healthy immune system.
For those of you that don't know, 80% of you immune system is controlled by your gut - so maintaining a good healthy gut flora is vital. If you are already taking a probiotic, that is great, however there is a specific probiotic strain for boosting immunity which you may benefit from using particularly during the winter months when you will be more susceptible to picking up an infection.
On the topic of respiratory health, a few years ago one of my patients asked me to look into salt therapy for maintaining healthy lung function. In my research I came across a machine called Saline Plus. It is a dry salt air purifier which aids people with both allergies and other respiratory issues. This machine is left on overnight and tiny salt particles are inhaled which helps to inhibit bacterial growth by disintegrating the protective layer surrounding bacteria particles, as well as breaking down mucus, making it easier for the lungs to clear.
I have one of these machines at home for my own son as he often has mucus congestion and have found it to be extremely beneficial. My wife now wants me to get one for our own bedroom as she heard that it can also reduce snoring!
We hope this information and given you some new knowledge on how to better manage your condition. If you have any further questions for our pharmacist please let us know. Your PHWA Editor (Check with treating PH specialist first before taking any new medications or over the counter remedies). Information supplied by: Guardian Pharmacy Landsdale - Sponsor to PHWA - Pharmacist Ravin Pashpu NOTES section Graphics and explanation shared with you through PULMONRYHYPERTENSIONNEWS.COM
PAGE 16
Article shared with you by sister group LIFE support group Spring Edition "Breath of Life"
A part of the UK Life of Breath Project the Letter to MY Lungs, a project facilitated by Elspeth Penny, and arts, health and communication specialist. Elspeth runs a project called Scent, aimed at reviving the lost art of handwritten letters. She facilitated a group of people with chronic lung conditions at the Forest of Dean Breathe Easy Group, in Gloucestershire, near the Welsh border. What would they write to their lungs or their breath? Here is an example from Clare aged 85, using a feather dipped in beetroot ink:
' My Dear Breath, I have lived with you for 85 years, the first 23 were good! but you have been unkind' Clare has had asthma since she was a child. ' I used to wonder if I' d wake up dead' . As a warm up exercise the Forest of Dean Breathe Easy group did some breathing exercises and wrote five short messages to their five year old self. What would you say to yourself as a child? A participant later wrote about the letter writing workshop: Our workshop last Tuesday gave our Breathe Easy members food for thought and a creative outlet not experienced often enough...I hope you agree that the varied response, in words and images, is proof of the value of the afternoon to those present, not least the fun of it. The procession of exercises led me to realise that I could rise above negativity and begin again to enjoy life.
What would you write to your lungs? Find some interesting material to write on and writing implement that suits you.
What do you want to say to your breath - or your lungs? What do you feel? Anger, frustration, fear, gratitude, acceptance, something else?
What will you do with your letter to your lungs? Pin it up, hide it, show someone, or destroy it? If you'd like to share yours with PHWA readers (anonymously, if you prefer), we could publish it here in a future edition of PHan Mail. Or maybe we'll have our own letter writing workshop at one of our future PHWA support group gatherings? Let the editor know if this is what you would like to do.
PAGE 17
A story from your PHan Mail Editor Melissa Dumitru
I had the pleasure of speaking at the Flourish Support Group who is part of the Baptist Church and College in Mt Pleasant, Booragoon, in July this year.
Their support group leader Jenny Miles had seen the new PHWA Invisible Diseases car decal while I was parked nearby months before and stopped me to ask about it. It seems so many of us share this "Invisible Disease" tag and I offered to come and share with her group about the experiences pulmonary hypertension patients have had and talk about our invisible disease's project.
I arrived on a freezing cold blustery day with my gorgeous hubby Rom and we were warmly greeted and thrilled to be included in morning tea which was themed "Christmas in July".
We gathered together with support group members of all ages and backgrounds and I got to share with this amazing group of people about our PH struggles, my own journey and how important it is to support each other, and most importantly to find something you are passionate about and get on with life and do not become your illness. This support group caters to anyone with a disability or chronic illness and are very inclusive. They are based at the very impressive Mt Pleasant Baptist College. I was pretty gob smacked at what an impressive set up it was as I had no idea I would be meeting at this kind of location. Flourish support group are all about life, colour and inspiration for living well with your chronic disease and it was a pleasure to spend the morning with them.
The colleges purpose built training facility is located in Booragoon, 15 minutes south of Perth CBD. They have a large variety of hand on learning environments including: Performance and rehearsal spaces for music students Red Wall Recording Studio for music and technical
production students Film studio and editing suites for their media students A modern commercial kitchen to facilitate college life
and events Their staff members are drawn from many fields of specialisation. They have film makers, graphic designers, musicians, music directors, live and studio audio engineers, biblical studies, teachers and pastors. Every staff member is passionate about teaching; they are focused on the learning needs of their students, they are highly motivated, and they are eager to share their experience and knowledge. All of their trainers have appropriate formal educational qualifications as well as extensive practical experience in the area in which they teach. I would urge anyone who is interested to contact them and check out all they have to offer. [email protected] www.mpc.wa.edu.au 9329 1777
Melissa with Flourish Support Group leader Jenny
PAGE 18
Memorial for PH Angel Linda Franklin
Linda Franklin was an original PHWA Coordinator way back in early 2010 who worked with our team to bring about the new patient operated independent support group, the first for Western Australian patients living with pulmonary hypertension. As the Secretary to ODAT (organ donation transplant Foundation) and our liaison we got to see the world of transplant in a way we perhaps would not have been privy to without her involvement.
We went through the highs and lows with her as she waited patiently for her precious new lungs. She was unlisted at one point due to being so stable, a time she relished and cherished. She knew every minute she had was important. Her whole family are great advocates of organ donation and that has not changed since her passing.
Linda's family had to say goodbye to her two days post transplant. She was surrounded by those she loved the most and her extended family and many friends and colleagues felt her loss enormously as the news was shared.
Her fragile body just couldn't cope with the enormity of the operation despite the incredible efforts from the medical team caring for her at FSH, one of the leading transplant teams in the world. Their loss is as sad as ours as they knew her and loved as we all did. Linda is free of all her pain and illness now and she is truly a beautiful and glorious angel watching over her loved ones. You will be missed dear friend, from all your PHriends at PHWA.
Bereavement Tips: Some Do's and Don'ts to help you through the process
DO:
Seek support from those who are able to give it. A hug can go a long way.
Talk to others who have experienced loss. Talk or journal about the meaning of loss to you and
the things you're going to miss about the deceased. Find a routine and stick to your new schedule, even if
you feel you're just going through the motions. Recognise your feelings for what they are rather than
why they are. Acknowledging a feeling can help you work through it.
Use writing, art and music to express and explore your feelings and thoughts.
Be forgiving and patient with yourself. It's alright to make mistakes or lose your concentration.
Be good to yourself. Get the rest you need, do things you enjoy, and offer yourself small rewards for meeting your daily goals.
DO CONT: Give yourself time. Time does heal, but just how long
it takes to heal varies considerably from person to person.
Seek guidance from someone you trust who can offer both wisdom and empathy.
DONT Try to make major life decisions too quickly. Numb your pain with depressive chemicals such as
alcohol or other drugs. Deny your feelings. Isolate or hide out from yourself and others. Expect every day to get better. Accept ups and
downs. Feel guilty if you find yourself enjoying an activity. Additional Resources www.PHAssociation.org/Patients/Bereavement
PAGE 19
PHWA at your fingertips
Pulmonary Hypertension Western Australia Home Base: 144 Hellfire Drive, Darch WA 6065 T: 08 9302 3078 - M: 041 893 0291 E: [email protected] FB: facebook.com/pulmonaryhypertenisonwa Web: phwa.info
Lung Health Support Groups in WA All affiliated with Lung Foundation Australia - www.lungfoundation.com.au
NAME OF GROUP CONTACT PERSON - TELEPHONE & EMAIL TYPE OF GROUP Lung Information & Friendship for
Everyone (LIFE) Support Group
Jenni Ibrahim - Coordinator 9382 4678 - [email protected] (Facebook)
All Respiratory Diseases
Pulmonary Hypertension Western Australia (PHWA) Support & Information Team (website coming soon)
Melissa Dumitru - Coordinator & Patient Educator 041 893 0291 - 9302 3078 - [email protected] [email protected] (Facebook)
PH Idiopathic PH related diseases Transplant/Rare disease
Altone Improvers Michael Lim - 9224 1651 [email protected] Respiratory
Bentley Bronchiatrix
Mike - 9359 2025 [email protected]
Respiratory
Rockingham Respiratory Support
Jan - 9528 2965 [email protected]
Respiratory
Heavy Breathers - Midland Walkers! Bernice & Greg - 0418 415 200 - 9250 4091 [email protected]
Respiratory
Huffers & Puffers Meets at RPH, contact Sandra, Respiratory Educator T 9224 2903 E [email protected]
Respiratory
Northern Easy Breathers Support Group Meets Heathridge Leisure Centre, Contact John M: 0412 017 789
Respiratory
South West Impaired Lungs Support (SWILS)
Support Group meets at Bunbury Library - contact Janelle & Barry M: 0429 631 559 E: [email protected]
Respiratory
Wheat belt Wheezers
Geraldton
Australian Online Groups
Search for group at groups.yahoo.com
Contact Colin Easther 0468 452 962 [email protected]
Contact Liz Whitehurst T 99561989 E [email protected]
(Use free Yahoo email account) Lungaroos (Aus & NZ) Bronchiectasis, Alpha 1 Antitrypsin Deficiency, Ozlung
Respiratory Respiratory
Respiratory Online
Useful Useful ContactsContacts
NAME OF ORGANISATION CONTACT DETAILS Carers WA T: 1300 227 377 - www.carerswa.asn.au Arthritis Osteoporosis Foundation WA T: 9388 2199 - www.arthritiswa.org.au - Scleroderma Support Group Health Consumer Council T: 9221 3422 - Freecall: 1800 620 780
E: [email protected] - W: www.hconc.org.au Lung Foundation Australia T: Toll Free 1800 654 301 - www.lungfoundation.com.au Silver Chain T: 9242 0242 - Country - 1300 650 803 - E: [email protected] Connect Groups Support Group Assoc. T: 08 9364 6909
Disclaimer & Advertising Policy Statement
Products and services advertised in PHan Mail magazine are not necessarily recommended by PHWA. Some readers may assume that anything that is advertised in these pages has been cleared, vetted or in some way approved by the organisation. This is not so in some instances. PHWA is not equipped to test and approve products and services that are available to the general public. Please exercise your own judgement about whether the item, service or information advertised is likely to help you personally and, where appropriate, obtain professional advice from your doctor or specialist. The information contained in PHan Mail magazine is provided in good faith and believed to be reliable and accurate at the time of publication. However, the information is provided on the basis that a reader will be solely responsible for making their own assessment of the information and its accuracy and usefulness. PHWA will be in no way liable, in negligence whatsoever, for any loss sustained or incurred by anyone relying on the information, even if such information is or turns out to be wrong, incomplete, out of date or misleading. We act as an information and support team only. Our logo, slogans & articles cannot be used without prior permission.
PAGE 20
