I'd like to skip leg day, please!

Hi, friends,

We are officially on day 3 of the new subq site and I'm ready to quit and come home.

Day 3 is usually the "worst" of the new sites, but every site is different.  Sites on my leg are usually painful for at least a week, maybe a week and a half.   I'm hoping that this site goes like the rest and I'll wake up tomorrow "over the hump" - meaning the worst will be over.  We'll just have to wait and see.

Right now my skin is awfully red under the site and swollen:

                   

And don't even get me started on the old site I pulled out Sunday:

On days like these I like to use ice pack after ice pack and Aveeno hydrocortisone cream (that brand specifically, though I haven't tried any others.)  On weekends and holidays I like to take a couple Benadryl each night to help cut down on the inflammation as well.  I love sleeping - I don't trust myself to wake up enough on work week nights! The ice packs help numb the area and the hydrocortisone tones down the angry redness and tightness so I can breathe for a few minutes.  Other patients on Remodulin subq take painkillers and use the T cream that they send with your supplies each month - or the PLO gel.  Those don't work as well for me as the hydrocortisone and ice packs.  Alternatively, some people use heat packs and that helps them, too.  Heat works well for me at first then 10 minutes later I'm feeling worse than I did before!  Everyone is different.  The week of a site change is going to be uncomfortable and painful, the key is to find what works for you and use it!

Tomorrow I see my pulmonologist and he will tell me if I'm able to get off my pump and move on to a different - oral - medication.  We've been planning it for months.  I last saw him in July, and he had me get several tests done to make sure my lung function is acceptable and an echo to make sure my heart was doing well, too.

I'm really nervous about it.  I don't want to get my hopes up but...I mean my hopes are up.  To actually shower without having to worry about covering anything? To be able to go swimming without the worry of putting in a new site a couple hours later?  And most importantly, not having to be in excruciating, debilitating pain every month for days on end!  I can't help it, I'm excited!  Just talking about it makes me feel like I'm jinxing it.

I was talking to hubs a couple days ago about it and I think even if my doctor says I have to stay on the pump, maybe he'll say "not yet" and I'll be able to get off it eventually.

"Eventually" is better than "never."

Today is site change day (with pictures!)

**Pictures of subq site changes below - reader discretion advised.**
Here's a completely unrelated picture so the others won't show up on the blog right away:

That's our oldest cat, John. We call him Boo! He likes to lay on my desk while I work on my laptop, even if he's upside down.

The good thing about today is that it's site change day.  The bad thing about today is that it's site change day.

I am taking a medication called Remodulin through a subcutaneous (under the skin) pump.  It dilates the arteries and vessels in my lungs to help me breathe better.  It also makes my skin a lovely shade of sunburned red.

Remodulin works amazingly well for me. I definitely would not be able to do all the physical things I do now were I not on it.  The thing about Remodulin, though, is that it is terrible every time you have to change your subq site.  Since Remodulin is a dilator, it dilates all the arteries and vessels underneath the subq site as well, and it's near unbearably painful for the first week a new site is in. When I was being taught how to use the Remodulin and supplies, the nurses called it "Hell Week."  Friends, they weren't lying.

So I say that it's a bad day because I have to change a site--this week will be hard for me.  Lately I've been putting my sites in my upper thighs and I'm at least able to stay at work and not take a day off.  I only have 8 out of 9 sick days left to last me until the beginning of June and those I have are precious to me.

It's also a good day because today I get to shower without putting on a flimsy plastic cover over my site.  It is definitely one of the best 20 minutes of my month, that shower.

So typically my sites last about a month on my leg.  Sometimes I can push them a bit longer, or sometimes they come out unexpectedly.  This time, I pushed it a little longer than I should have - my site got infected.

It's hard to tell from the picture but it's definitely swollen, warm to the touch, and tender.

When I took the actual site out it started weeping. Fun! (Barf)

Here it is after I cleaned it up a little bit.  Not so gross, huh?

That shower, man.  It's funny because I still stand in the way I normally do to try and keep the water off my leg/site - until I remembered I didn't have to!

Okay so here's what I need for a new site:

Alcohol wipes, skin prep (it makes the skin tacky so the site itself will stick), two Cleo catheters because inevitably one doesn't work or I have to redo the site because it doesn't connect well, a new line, a syringe, a primapore bandage to keep the site clean after I change everything and my actual pump.

The Cleos have a catheter inside that sticks into my skin with a needle.  It pops down when I punch it into my skin.

After I pop the catheter in I hook up the new line and I'm ready to go.  The pain doesn't usually start until the next day (if I'm able to choose when I take out my site I do it in the evening so I can sleep so I don't have to deal with the pain right away).

It's always a guessing game as to where the next site should go.  There are knots under my skin where the previous sites were placed.  It's a delicate balancing act between a "good site area" and "that's going to be way more painful than it should be for various reasons."

Here's to staying alive and breathing the best I can. And the hope that eventually I can maybe move away from Remodulin to something else that works just as well.

-Nicole
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Hello, world. Goodnight, dear void.

Hi, everyone!

There is a movie, You've Got Mail, that is single-handedly my most favorite movie of all time.  I'm sure that I must have been the main character Kathleen Kelly in a previous life.  Or, that had we lived close to each other, we would surely become best friends.  During one particular scene of the movie, Kathleen writes a letter to a friend. A large chain bookstore has been built down the street from her small, independent children's bookstore. She wonders about her life and her business's future and writes:

Sometimes I wonder about my life. I lead a small life - well, valuable, but small - and sometimes I wonder, do I do it because I like it, or because I haven't been brave? So much of what I see reminds me of something I read in a book, when shouldn't it be the other way around? I don't really want an answer. I just want to send this cosmic question out into the void. So good night, dear void. 

This quote resonates so deeply with me because I do lead a small, though valuable, life.  I live with my family in the suburbs of Houston.  We have nine (yes, nine) cats.  I have a day job that both ardently love and can't stand at the same time.  I also wonder if I continue living my life the way I do because I like it or because I haven't been brave.  

You see, I have pulmonary arterial hypertension.  Basically, I have a rare and progressive lung disease that causes extremely high blood pressure in my lungs.  It is a very deadly disease that spans all ages, ethnicities, and genders.  Those whose lung pressures do not respond to medication need a double lung transplant.  In fact, that's what I was supposed to have when I was first diagnosed with this disease in 2011.  A double transplant - two lungs and a heart. Those who are not diagnosed and do not receive treatment typically die within 5 years of developing the disease.

When I was first diagnosed I was 25.  I was eager to find other humans with stories like mine - blogs, youtube channels, whatever I could get my hands on.  I found a few - not nearly enough.  I needed more representation of my story.  Someone who knows what it's like to go through such a life-altering event and live that truth every single day of their life. So here I am, writing my own. Today is the day, friends.

I'm here because I want to be brave and share my heart with people like me.  People who have Pulmonary Hypertension and who are going through this life the best way they can.  I'm incredibly lucky.  So far my body is responding very well to treatments.  I currently take 6 medications for my disease each day, including a subcutaneous medication that is delivered via battery-powered pump that I wear 24/7. I am able to work, to exercise (with a few limitations), to go through my day without needing oxygen. Truly, I am fortunate.

This is my chance to show others what living a life with PH is like. To reach others who have PH and give them solidarity. A voice.  To give myself a voice.

Hello, world.

-Nicole