#ipah

[djstumppinz]

*SaVe ThE DaTe ...DoN't MiSs CoNqUeRiNg FaMiLy* *#BoUnTy LiSa* *#JuNioR SpRaGGa* *#SuPeR YuT* *#IpAh yUt* *_HaMeNi_* https://www.instagram.com/p/B0U7tfWhDD1/?igshid=13ani6awm561n

[tegamegadrive]

My bitmoji knows what's up!! So lucky to have so many donations and so many people supporting me. PAH is a progressive disease that has an impact on my lungs and heart. Breathlessness and dizziness are just some of my symptoms. I have very good disease control, but unfortunately this is not the norm. I have a lot of PHfriends who need oxygen, more medications and some who are wheelchair bound. At the moment the only so called "cure" is a transplant. While this gets rid of the disease it isn't without its risk. It also means of still have to take many medications for the rest of my life. But this is something that may be an option in the future. Stay tuned for more fun posts show casing my PH related decorations, food and posters. #breathless #chronicillness #ipah #phna #pah #phsucks #phuckit #phamily #phriends #fundraiser #awareness #veletri #lifesaver #bitmoji #idiopathicpulmonaryarterialhypertension #thankful #alive #donatelife @team_phabulous @itsalungshot https://www.instagram.com/p/BqRFO5WF5Sa/?utm_source=ig_tumblr_share&igshid=1k926pv41kg0m

[mtatva-blog]

Pulmonary Hypertension: Symptoms and Treatment

Pulmonary Hypertension: Symptoms and Treatment

What is pulmonary hypertension? Pulmonary hypertension (PH) is an increase in blood pressure in the blood vessels that carry blood to the lungs. It is a rare lung disorder but a serious health problem. Pulmonary blood pressure is normally a lot lower than systemic blood pressure (delivering oxygen throughout the body from heart). Normal pulmonary-artery pressure is about 14 mm Hg at rest. If the…

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[tegamegadrive]

A charm from each major city I visited during the most amazing time of my life! #adventures #adventure #momentos #memories #beautiful #thanksmum #travellife #chronicillness #kickingit #ipah #proof #ididit (at Earth)

[tegamegadrive]

Making the World PH aware

Today is World PH day. 

Helping spread the word that there are many people suffering through the same illness I suffer through, and most of us look pretty normal on the outside, but a little but weirder on the inside.

According to an American website it only takes 3 steps for a person with PH to feel symptoms. 3 is my favourite number, my birthday date, but this time the number isn’t so nice. 3 steps! 

I am lucky, I know I am. My meds work pretty well for me, maybe even a bit too well...i need a tune up. (Turning them down in the near future!) 

Thank goodness...cos this is a LOT (Only a month of IV meds)

My symptoms don’t bother me most of the time. It’s been so long (only a short 22 years, or 80% of my life), so it’s hard to tell what was puberty or growing or “normal”. It’s even harder to tell which problem is what or if a medication is causing something or my body telling me something or just a normal thing and I should just curl up in bed and have a cup of tea!

Being diagnosed at 5 means it becomes ingrained in your identity, separating who you are from what you have can be difficult, but I like to think I have found a happy balance. 

I attempt to never let my disease or symptoms get the better of me. I don’t let it rule my life, I make it work for me. If you follow this blog back I feel like I fucking owned this disease.

Sadly, for many this disease owns them. 

Shortness of breath, difficulty walking, climbing stairs, standing for long periods of time, retaining water, weight loss or gain, side effects from medications, changes in your hair and skin, blue lips. Again I am lucky.

Side effects can include Jaw pain, constipation, loss of appetite, nausea, headaches, flushing, skin rash, gastric upset, foot pain, leg pain, blood thats too thin, nervousness, vomiting, agitation, chest pain, low heart rate, low blood pressure, dyspepsia, insomnia, nose bleeds, visual disturbances, nasal congestion and many more. 

This is only the short list for the two medications I take for IPAH, there are many more. I only suffer from a few of these, and I manage them well. Or at least I try to or pretend I do. I don’t let them bother me at any rate.

So read up and become educated of rare diseases! 

I’m aware that I’m rare!

As I don’t have a picture of me climbing stairs...which is this years motto! I’ve decided to post my first picture of the AMAZING Northern Lights, which I took MANY steps to get to!