Category: Health

  • Yes, it’s traumatic…

    Yes, it’s traumatic…

    Once Pulmonary Hypertension was brought to my attention, it’s been nothing but a life altering path I did not choose, but was forced to take. A difficult journey my soul has chosen to take.

    Every disease has it’s own personal baggage, some worse then others, but they somehow can all relate to each other. The load itself of any disease is burdensome, but we never really think about the most important, if not the heaviest burden of them all? The mental struggles.

    Iv been living with PH for, what seems like forever, but diagnosed 10 years. The past couple of months has been exceptionally difficult for me,  with my body, in my opinion, feeling like it’s rejecting my medication which I have been taking up until this point and with me dealing with the side effects of such.  Having fainting ‘episodes’ at random times and while driving- trust me that wasn’t pleasant, shortness of breath, numbing sensations all over my body and striking pains in my chest, it has been quite a roller coaster. My days consisted of calling my husband in a frantic state feeling in that moment that I was dying, to us driving to the emergencies rooms to make sure that I wasn’t dying.

    When it first started it was scary, now it’s just frustrating because I want to get over this phase, fast. I’m so over feeling like this that I would literally do anything to feel ‘normal’ again. Normality comes with a price tag and it’s unfortunately called PTSD..

    “Post Traumatic Stress Disorder: a condition of persistent mental and emotional stress occurring as a result of injury or severe psychological shock, typically involving disturbance of sleep and constant vivid recall of the experience, with dulled responses to others and to the outside world.”

    In my mind, PTSD is something that someone suffers after surviving an attack. Which, now brought to light by my therapist, I did.  It’s arrival was not welcomed, nor wanted but I’m starting to accept it. At least I’m trying to… I had not even given consideration to the fact that PTSD lingered let alone the depression and anxiety that comes long with it. The problem with this is that most of the world have not yet put together that a majority of chronically ill patients are also suffering from Post-Traumatic-Stress-Disorder because being told “you have an incurable and terminal disease” is trauma in itself.

    Suffering from a chronic illness on it’s own is hard. Suffering from PTSD and a chronic illness is just excruciating! Slowly getting familiar with this mental illness means I can identify my triggers and try cope. With PH it’s difficult because if I feel out of breath, is it a sign that I’m having a panic attack or is it my PH giving me a warning sign telling me that my PH is deteriorating? Which lands up giving me more anxiety!

    I have grown up with people who suffer from severe depression/anxiety and I could never really understand how they could be so angry and so sad all the time. I understand now. Completely and utterly. It’s really a dark place that your mind travels to and can be really difficult to get out of it and no matter how hard someone try’s to get your frame of mind into a more positive space, it just makes you sink deeper into the black hole.

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    Mental health is an invisible disease just like PH. Your brain is an organ, and it deserves it’s own upkeep. It’s taken alot for me to talk about this issue, let alone write about it. I’ve found that talking about what I’m feeling and going through really does take the pressure off. Iv learned that I’m not alone is this and that there is a silver lining. It just takes a little time and patience.

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  • 947 MTB Challenge for PH!

    947 MTB Challenge for PH!

    On the 13th November 2016, a group of family and newly made friends, worked up the courage and took on the 947 MTB Telkom Challenge. I, myself , was supposed to join in on the fun but due to some health issues, I waited patiently at the finish line cheering the group on!

    The group of riders all rode for a cause, to make Pulmonary Hypertension known in South Africa and to brighten the lights and lives of those suffering from the disease. My heart filled with pure happiness as each and every rider rode through the finish line and I couldn’t have thanked them enough.

    Life can be tricky and we may sometimes ask why me? , why now? , but there is one thing I know for certain and it’s  that no matter where the path may lead, the big man upstairs with fill your life with the people who are meant to be there to get you through your struggles, to lift you up when your feeling down and to remind you that life is really beautiful if you just allow yourself to feel in that present moment.

    Meet the PH Warriors..

    The PHASA Warriors
    The PHASA Warriors
    Representing and cheering for our team!
    Representing and cheering for our team!
    My Love
    My Love
    My Team of Warriors- In this moment they all gave me their medals to say that they did it for me ( I gave the medals back- promise)
    My Team of Warriors- In this moment they all gave me their medals to say that they did it for me ( I gave the medals back- promise)
    Pulmonary Hypertension Association of South Africa
    Pulmonary Hypertension Association of South Africa
    My hero- Loraine du Bois
    My hero- Loraine du Bois
    My Champ, My Person
    My Champ, My Person

    For more info on Pulmonary Hypertension, click here.

    #PulmonaryHypertension #PHwarriors

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  • Discovering the PH Me…

    Discovering the PH Me…

    This year marks 10 years that I have been living with Pulmonary Hypertension and admittedly, it’s the first time I’ve really experienced my silent killer with full force. If you are a little lost on the whole PH thing, you can read about my introduction here.

    It’s quite a surreal moment for me to reach a 10 year mark. It’s almost theatrical to tell someone that I have been living with PH for a decade because not many people reach the 3 year mark.  I’m the lucky few that can see the light of day just a little longer…This month has been incredibly difficult for me as I have come to realize the circumstances that surround this disease and the intensity that comes with it. Hang on.. I haven’t been that naive to everything that’s happened to me. I am constantly reading up on PH and it’s horrors so I am well aware and informed, but this year has really hit home for me.

    The professionals call it  (PTSD) Post Traumatic Stress Disorder: a mental health condition that’s triggered by a terrifying event — either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.

    Yup- PTSD has surprised me on my 10 year anniversary, in November which is PH awareness month, might I add… So apart from dealing with taking medication, Dr’s visits, pains, deaths of fellow PH suffers that I idolized and constant worry of life itself, now I’m dealing with severe anxiety and depression.. Great! I guess it had to catch up to me sometime. I had a pretty good run the past couple or years so I shouldn’t be complaining but coming to the realization that I could in fact die from this disease is pretty daunting. When I think back to the day that I found out that my heart was double it’s size and I had less then 3 months to live, my state of mind was complete and utter calm. The fear of death did not for one second cross my mind and I was happy, so happy that I would be the one comforting those around me who shed the tears for me. I shake my head is disbelief that I was so disconnected with what was happening around me, to me. The chaotic schedule’s of seeing Dr’s and doing multiple tests at every possible clinic, could of been the distraction but It was possibly the best thing that happened to me out of the whole ordeal.  To be completely disconnected from myself. 

    If only I could feel that disconnect now, to feel absolutely nothing…

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    I’m a strong believer of things happening for a reason, yes I guess I still question why I had to deal with a dreaded disease at such a young age, but I don’t doubt for a second that I am exactly where I need to be. This disease has not only lead me to the right people in  the right places but has also opened my eyes to life.

    I cannot express enough how horrible the feeling of not being able to breath is. Or waking up in the morning and feeling so weak and anxious that you can’t possibly imagine getting through the day. Pulmonary Hypertension is hard enough, but adding severe anxiety to it, is just exhausting! I am constantly reminded that I have gone through the worst and that this is just another hurdle to get over, but why does it feel like the worst is yet to come? For me, It feels like my biggest fears about this disease are coming to life and I cannot bear it..

    My PH roomie has invaded my space and is going nowhere, so it’s about time I get comfortable and get to know it a little better..

    An invisible disease that is dying to be seen, maybe it’s time…

  • Supporting Pulmonary Hypertension.

    Supporting Pulmonary Hypertension.

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    So the month is over and so end my awareness month for PH.

    Lets keep the light of hope alive and reach out and help.
    There is so much to learn about this disease so educate yourself and others. In the end, its all for you.
    The Pulmonary Hypertension Association offers valuable information and have tons of survival guides to help the newly diagnosed. You can find all the information here.
    Thank you you for your support
    #PHaware #PHSA
  • Are you #PHaware?

    Are you #PHaware?

    Know the facts- Be PHaware
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  • Health Management Basics with PH

    Health Management Basics with PH

    Pulmonary Hypertension patients take alot of medications, some more than others, to help manage their disease. Its to help prevent the disease from worsening and to treat the side effects caused from the drugs that arise.

    Taking ownership is probably the most important regimen apart from all the others that come with PH. Its so important to know as much as you possibly can about your disease. Its scary, I know, but the more you know about it, the easier it becomes to deal with.

    Take charge of your health by following these simple steps:

    Learn how your medications work:
    Educate yourself about all your medications and what each is doing for your PH.
    Organize your health information
    Keep your medical information together at all times.
    I started a medical journal from when I was first diagnosed. I write every detail related to my condition, from doctor appointments to decrease in medication, even days where I have felt something other than the norm. It has helped me communicate better with my doctors and in turn help them understand better on how I am feeling and to where my condition stands to it worsening or improving.
    Purchase a Medic Alert Bracelet
    These bracelets are here or a reason- to save lives. A medical bracelet is an indicator to the practitioner to search deeper for the other information they need to treat you adequately. Minutes make a difference.Go to ICE ID for further information
    Be Confident
    A Pulmonary Hypertension diagnosis is a curve-ball regardless of age, medical history of gender. Take a deep breath, ask for help when you need it and, above all, believe in yourself. No one knows your body better than you do. Listen to it.

    Each of the drug classes used to treat Pulmonary hypertension have several side effects and drug interactions. Medical professionals share some of the most common problems encountered by PH patients. Talk to your PH doctor before starting any new medications.

    Endothelin Receptor Antagonists
    This type of medication has been associated with birth defects and liver damage.  Monthly Liver function (LFT) tests have to be taken to prevent irreversible liver damage. Patients on Tracleer must have monthly LFT tests.
    PDE- 5 Inhibitors
    Should not be taken in combinations with nitrates , nitric oxide donors or alpha blockers. Taking these in combination can cause a significant drop in blood pressure, which could result in loss of consciousness or even death.
    Warfarin 
    is designed to minimize blood clot formation in the pulmonary blood vessels, a benefit that can be dangerously enhanced by addition of a long list of medications and supplements, including some antibiotics; over the counter medications like Tylenol, Advil and Aleve; Vitamins and herbal supplements and green leafy vegetables. If you notice any unusual bruising or sign of bleeding- Call your Doctor.

    Remember that you have to look after you- no one else. Its important to keep your medical records up to date and know when something is wrong- When in doubt call your Doc.

    If you would like more information on a specific topic go to PH Association or if you need someone to talk to drop a comment below with your email address and I’ll get in touch. Theres comfort in knowing that your not alone out there.

    #PHaware #PHenomenalHope



  • Awareness Month for PH

    Awareness Month for PH

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    Show your support by spreading the word via instagram, twitter and facebook
    #PHaware and tag it to nicolef_coutinho so that we can make special mentions to our supporters!

  • Day- to-Day Living with PH

    Day- to-Day Living with PH

    Being diagnosed with PH is very daunting. I remember in beginning researching on the disease and being shocked about each new fact that I learnt about it. There is so much to absorb you cant help but feel completely and utterly depressed. Its like you’ve reached your crossroad and have no idea where to go.

    Life with Pulmonary Hypertension  is an ongoing lesson in flexibility. You may need to let go of some of the daily details that seemed to be important to you before you were diagnosed to make room for some of the new responsibilities that come with PH. Simple tasks like  getting out of bed can be the most exhausting task you will do the entire day. This is why we need to find ways to make ourselves feel good about what we can and cant do.
    Here are some tools to help:
    Priorotize your Activites
    Make a list of what is important and what isnt.
    Set Goals
    Make a list of how long it takes you to do a specific task and work around it accordingly.
    Pace yourself- you’ll get there.
    Turn to Family and Friends for Help
    As someone who is quite independent, this one was difficult for me but I had to do it. I always felt that I was a burden but I was constantly reminded that it wasn’t an issue to ask for help if I needed it. A great support system is key to the well- being a PH sufferer, so don’t be scared to ask for help.
    Stay Active
    It is important to pursue activities that are unrelated to your illness. Having things to plan for and look forward to makes life meaningful and fun. Aside from medical appointments, make some time for you and what you love to do.
    It takes time to find your feet but you will. Stay positive- It will only get better and remember that, you may have the disease, but the disease doesn’t have you.
    #PHenominalhope #PHaware PHfighter
  • The Basics of Pulmonary Hypertension

    The Basics of Pulmonary Hypertension

    In short, Pulmonary Hypertension is high blood pressure in the lungs. It is a chronic and rare disease which has no cure. If not treated in can lead to right -heart failure. (Scary right?)
    In most cases, the disease is so often mistaken for asthma and therefore patients worsen due to misdiagnoses.

    There are many different types of PH.

    Primary Pulmonary Hypertension- No Known cause
    Secondary Pulmonary Hypertension – Caused due to other health factors, eg: connective tissue failure, HIV, Liver Disease, Sickle cell disease and or Inherited.

    This is why it is essential to go for your yearly check ups with the doctor to make sure your in check. I have changed my way of thinking completely since I have been diagnosed. I was one of those people that often left aches and pains but I quickly learnt that If your body is in pain, its telling you that there is something wrong, don’t ignore it, listen to it.

    PH displays the following symptoms:

    Shortness of Breath
    Chest Pain
    Dizziness/ Fainting
    Loss of Energy
    Swelling of arms, legs or ankles
    Blue Lips and/or fingernails

    Who is at Risk of PH:
    People of all ages, races and ethnic backgrounds are diagnosed with PH. Even though anyone can be diagnosed with PH, certain risk factors make some people more likely to get the disease.

    Family History
    Obesity and Obstructive Sleep Apnea -Oxygen Levels fall while sleeping
    Gender -PH is more common in woman then in men
    Altitude
    Other diseases
    Drugs and Toxins

    Treatment therapy in South Africa is unfortunately not as advanced as in other countries. With little knowledge of the disease in SA, treatment is either imported or in most cases combination medication is tried and tested until a certain combination drug can  help that specific patient.

    In the beginning of my ordeal, we visited a few hospitals to help motivate the SA Medical board to bring a certain drug for patients with PH into SA. There were 12 patients in my group that were all listed to trial the drug, unfortunately most of the patients had passed as the disease progressed too quickly. I count my lucky stars that I was blessed with a loving family who stopped at nothing to get me the treatment I needed to live.

    More and more cases of PH are becoming known in SA and for that reason we need to make PH known and hopefully get effective treatment for those affected with PH.

    Lets educate ourselves and others and help fight PH.
    #PHaware

     
  • PH Awareness Month

    PH Awareness Month

    The 1st of November marks the beginning of Pulmonary Hypertension month.
    This years Awareness Month theme is ” Lighting the Way for a Better Tomorrow”

    Too often, a pulmonary hypertension diagnosis feels like being shoved into a dark corner.
    Who can see that your sick? Who understands what your’re going through when you’re having a bad “sick’ day? Each time one person tells another about PH, they dispel a little of that darkness. I can certainly vouch for that. The more I talk about it, the better I feel.

    Lets be PHaware!
    Show your support and wear something purple on the 1st November!

     

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