My pain.

Well, time with Dad has came and went. I had such a great time! I loved it! And, like always, it was way too short.

We did a lot! And at the same time, we did not a lot too! We went to Banana's, Eme loves the popcorn game. And ate food. Went to Angelo's and painted pottery (I will pick that up Monday or Tuesday). I really am grateful for the time I get to spend with him. We are working out a trip for me to go to Rapid and visit my family there. There are a lot of details to work out, but I am trying!

And I must apologize. I am a bit scattered, and I have been holding some information. I needed to process and grasp it before I could share it.

A few weeks ago, when talking to my nurse, she asked me if we (meaning my doctor and I) talked about a transplant yet. I said I hadn't, but was too afraid to really press her for why. Then last week, when I went up on my meds, she gave me a bit of news I hadn't wanted. The average maximum for patients on Remodulin is 50 to 52 nG. I am at 42. I go up by one nanogram every other week. When we get to 50 we are going to have to start a new plan. We will try adding medicine, like Revatio (Viagra), but we were told at the beginning that it is not likely to work. That means (again, this is as far as I can gather... doctors will NOT give a timeline) I will have to go the transplant route a lot sooner than we were hoping for. In the beginning we were told that PH patients are not given priority for transplant. 2/3 of PH patients on the transplant list die before getting the transplant. I know, scary. We aren't done yet. But take a moment.

The next thing I have to think about, is can I survive a transplant? I read about this young woman who got a transplant and after 3 weeks recovering, she is doing everything that she couldn't before. MY PH is caused because of my autoimmune disease. My disease will be there even after a transplant. SO FAR my lupus has not been able to be put into remission on medication. There is nothing to suggest that it would go into remission if I got new lungs. That means I would end up here again in a fairly short period of time. I have had lupus for 5 years, and my lupus was not attacking my lungs all of those years. We figure that has just been within the last 2 years. Do you remember the SIMPLE surgery I had on my esophagus? It almost killed me. So close (and I didn't know this until tonight) that visitation was stopped a few times. Now breathe, we are almost done.

I am scared. I have been scared, but now I am telling you. I go back to Denver in November, and I completely expect to start the transplant list and prep at that time. It will be hard. I have strength, and I have love. I will do the best that I can. But we need to start thinking about the possibility that I will not make it. I hurt now. Yesterday I worked on a fountain. Grandpa cut a wine barrel for me. Then I had to nap. I lined it with plastic and filled it with a hose. I had to nap. Today I played with my pump and talked to a lady at the store. I had to nap. You, the average person, would be able to do all of that in a 2 hour time frame, and then go to work, and cook dinner, and clean house. I folded laundry the other day. 2 loads. Then I went to bed. I played 6 holes of mini golf. Then I was fighting being sick the next day, and I mean vomiting/over exhertion. And this is on medicine that is still working! I lay down, and if I take a full breath I am in pain. I can't extend my right arm because the joint is inflamed. This is what I don't talk about.

I have not been taking my medication every morning, because it makes me sick. I mean I sometimes vomit, always get a headache, always need to sleep, and sometimes can't move. I have not said how big of a miracle it is when you see me out and about, let alone when I smile. I feel strained. I feel like I have to be strong for everyone. I am related to mom, and like her I can't be weak. So I don't talk about these things. But it wouldn't be fair to you, if I didn't. You need to understand why I am calculating things like "do I make my fountain perfect, or just do what I can so that I get to see it finished?" or "do I take Ryan to Rapid City with me this trip because I may not get another chance to share that with him?" and even "how many classes do I take Spring semester so that I get to feel the sence of accomplishment of completing a degree?"

Some of you will tell me that the doctors can be wrong. And yes. BUT I KNOW MY BODY BETTER THAN ANYONE! And I know how the medicine feels. I know how I feel. And I am the one to pay for it.

But I am scared. Terrified. I am holding onto the hope that before I reach 50 nG I will reach that magic number and that I will coast for a long time. But I know that I won't.