"Pulmonary arterial hypertension is a progressive disorder characterized by abnormally high blood pressure (hypertension) in the pulmonary artery, the blood vessel that carries blood from the heart to the lungs. Pulmonary arterial hypertension is one form of a broader condition known as pulmonary hypertension. Pulmonary hypertension occurs when most of the tiny arteries throughout the lungs narrow in diameter, which increases the resistance to blood flow through the lungs," (Medline). Pulmonary Arterial Hypertension (PAH) is what my mom has to live with every day for the rest of her life. She can't do normal everyday tasks without getting winded, she can't swim, and has to take time everyday to ensure that all her 20 medications are taken. This is just a little glimpse into what will be the rest of my mom's life.
BMPR2 is the gene that gets effected by PAH. It mutates it, making it not able to control the number of cells in lung tissue. It can be passed down to your children, but it is usually random. Others names for Pulmonary artilieral hypertension are,
- Ayerza syndrome
- PAH
- & Primary pulmonary Hypertension
Some symptoms of PAH include, chest pain, gradually it gets harder to when doing certain tasks, ankle swelling, heart palpitations, and many more. There is no cure for it, but there are ways to help reduce the affects. You can do any of theses,
- inhaled medicine
- Medicine given through the veins under the skin
- Medicine to reduce swelling in the feet (diuretics)
- Oxygen therapy
My mom does oxygen therapy and a port. The port connects a line into an artery on her chest, it flows medicine continuously through a machine. She does a mix every two days, this is where she adds more medicine into a new machine and re-attaches it to herself. Her medicine is called remodulin and is so potent, that it has a ratio of 2 mL remodulin to 98 mL dilutant.
My mom will eventually need a lung transplant, hopefully she won't have to have that happen for awhile. My mom wouldn't be as well off as she is if it wasn't for the amazing Dr. Zolty at Nebraska Medicine, who specializes in PAH. He saved my best friend's life, and if it wasn't for him, she could be dead right now.
Pulmonary Artilieral Hypertension is not a well know disease, but it should be. PAH is extremely deadly if left untreated and more people should understand that.
Are there any questions that I can try to answer about PAH?
What do you think about this disease?
Do you think PAH should be talked about more?
Replies
Emily,
Super job!! I'm sure it's not easy talking about this so I really appreciate you educating all of us on your mom's condition.
Thnak you!
Thank you for sharing about your moms disease. I really think this should be more known, because I didnt know about this intill you made this post and it seems like a very serious disease. I also really appriciate you showing us the equipment, it helps me understand what your mom has to do to reduce the symtoms.
Thank you, I really appreciate the equipment comment. I really wanted to show people what my mom has to do.
I think that this disease is very serious and isn’t talked about enough for it to be known. I am sorry that your mom has to deal with this every day. I do not have any other questions about this disease but I do think that it 110% should be talked about more so that people are aware if what could happen to them.
I agree, PAH is very serious. I see the way my mom used to be and it is crazy to see her need oxygen for almost everything.
Emily, reading this makes my heart warm. Thank you for sharing your mom's disease, I have actually never heard of this before i read this. I honestly love how you chose this and showed us your mom's eqiuptment. there definitly need more awareness on this topic
I really appreciate you saying that. I wanted to show the equipment so people got a better understanding of it.
Thank you for telling your mom's story. I haven't heard about this disease before. I couldn't imagine living with it, it sounds like a lot you have to go through. It is great that you educated us about this and I think we should talk more about this disease.
It is important to tell her story, I'm happy I got to share it as well. Thank you.
Are you going to have to get tested for PAH in the future? I really think there should be more awareness for this sort of disease and it should be talked about more. It is a really sad thing that your mom is going through this.
-
1
-
2
of 2 Next