Today is the 2nd Annual PH Blogging Day!

Hi PHers and other fellow readers!

Today is the 2nd annual PH Blogging Day! I am exactly a month away from my diagnosis anniversary this year as well. It is amazing how fast 5 years passes by and I feel awesome! Of course, over those 5 years I have had my ups and downs. And boy, have I sure learned a lot about having PH over the years. Even though I can't possibly list all the things I have learn over the years in this one entry, here are some of the most predominant ones that I can remember:

Drum roll please....

1) Line infections from IV Remodulin are no fun and they almost guarantee you a week long vacation at any hospital of your choice. If you think you have a line infection, go to the doctor's right away. It won't go away on its own, and antibiotics are your friend, REALLY!

2) Do what your PH doctor says...within limits. I really love my doc, but sometimes I have to push the boundaries to show him that I can really do stuff he thinks I can't. Like surfing in the Caribbean with a PICC line, and snowboarding, and backpacking around Europe for 3 weeks...you know, stuff like that. Now he is more lenient and lets ME control my medications and how I want to be treated for my PH.

3) Only email your doctor when there is MAJOR issues. Don't email him/her all the time, because when you really need their attention, then they will respond. If you email them all the time, they will start ignoring your pestering, "junk-mail-ish" crap you send. When I send a SOS email, he knows I am really sick to be writing him and he usually calls or emails me back within an hour.

4) If you don't like your doctor, then switch. PH is rare, but not that rare. There is more than one PH doctor out there. You just need to find the right doctor for your lifestyle. I am 26, my doc is in his 30s. There is no major age gap, so I think he relates better to my lifestyle. :)

5) Not every PH med is right for everyone. I will admit it. I hate Revatio with a passion. Who loves waking up to a red tomato face, swollen sinuses, and headaches?? Not me! So I stopped taking it. It might increase my pressures a little bit more than if I were to take it, but my quality of life is soooo much better now. No stuffy nose (unless I really am sick) and a lot less flushing now (only the flushing from my Remodulin which many people think is a sunburn, even in the winter). I was also on Flolan. The symptoms were horrific for me, so after a week I was transitioned to Remodulin and there are a lot less symptoms. Woohoo!

6) We have a rare disease but there is so many of us PHers out there! We might be years apart in age or a totally different sex, but we still go through the same emotions, anger, etc. My PHriends are like second family to me!

7) Get active with PHA. The first few years I would read the website once in a blue moon and visit the message boards but now I am much more active in the PH community, especially with PHA. At first I didn't know what to think of PHA (I was only 21 years old and didn't know much about having serious medical conditions). But I have come to realize that PHA is here to help us through our PH journey. They are here to fight for us on Capital Hill, they're here to collect information and data to improve our lives, and most of all, they are here to encourage us to keep fighting when we all know that we could easily give up. Now, I am on a super long list of PH activity stuff (Young Adult Advisory Board, Generation Hope, South County PH Support Group, etc... the list could really go on forever), and it has made a HUGE difference in my life. I know more patients that ever, I have new friends (I like to call them PHamily though), and I am constantly up to date about new PH meds/treatments/stories, etc. Plus it just feels good to know, that in some small way, I am helping out all of us, someway or another.

8) Having PH is difficult, but it is just as hard on people around you. I can tell my parents have a hard time with me having PH. I can see it. They don't hide it very well. And sometimes I just have to remind them that I am not "normal" and not to set their expectations too high. But they do push me. Mom encouraged me to go to work full time, and not to give up and just stay home. I really do think that encouragement has what led to me being as active as I am (looking back...in the beginning, I thought she was forcing me but now I know the difference, it was tough love!).

9) People around you can tell when you don't feel well and don't try to fake it. I used to tell my mom that I felt fine, and she would start after me....nag, nag, nag...she can always tell when my dose needs to be increased, when I take my Lasix, when I have a line infection, and there is no way to hide it. Even when I lie and say I'm fine. Mom calls it "mother's intuition"....I think I just don't hide it well.

10) Become B.F.F. (best friends forever) with your case coordinator. I send that woman flowers, cookies, cupcakes, email updates, random phone calls, whatever I need to do to keep her on my good side. When I need an emergency PICC line change she is on it. When I need meds, she is on it. She pushes paper through faster than anyone else I have ever met in the medical field. She can get my referral approved within 10 minutes. I swear that woman has saved my life a million times. Make sure to make your case coordinator your BFF.

11) Learn your own PH tips and then share them (newbies need our help). Over 5 years I have learned a lot of tips. From nurses, to doctors, to my own findings. For example, I know I can't have Hickman Catheters. After 3 Hickman line Infections in my chest, I now know that isn't the answer for me. Now I know PICC lines are the way to go. I have NEVER had one line infection in a PICC, they are quick to replace (10 min in outpatient), no surgery is needed, and with a PICC and IV Remodulin you can disconnect and go swimming. It's not for everyone, put I like them, and they work for me. I now know when I have a site infection and when I have a line infection. Yes they are 2 separate things (I didn't realize this before 3 years ago). Oh and never buy pants without a pocket. I gotta have somewhere to put that Chrono 5 pump. Oh and if you don't like your pump, ask your doc if you switch, you have options. :)

These are just a few things I can remember for now. If I can think of more I will scribble them down. And if someone asks a question, I will try to answer the question on here as well so everyone can see the answer (your name won't be mentioned of course). You can shoot me a private email if you want to keep it between us. I am down with that too!

Happy PH Blogging Day and Happy PH Awareness Month! Keep up the good work my little PHighters!