So Much Has Happened...

Wow...so, it has been four weeks since I wrote last on Thanksgiving Day. In that time I feel like a lifetime has happened. So much has occurred both in the world at large, and for me personally. First, the personal news.

 I originally came home just for Thanksgiving. However, once I was here, it was determined it might be best for me to stay a bit longer for me to have the second right heart cath I needed to have performed. So instead of flying home the day after Thanksgiving, I went to Vegas with my Mom for the weekend (way fun!), and had the heart cath the second week of December. It's a good thing I went ahead with that cath, as it gave me some much needed information. The last cath I had in September, the Dr botched it. Lets just say things did not go well (a mistake was made and I went into cardiac arrest during the procedure), and the numbers that we were given at the end of it did not make sense, so it was recommended that I have a repeat done. Obviously, I didnt want to go back to the same Dr who made the mistake in September, so I asked the Cardiologist who took care of me before I left CO if he'd be willing to do it. He couldn't, but referred me to his partner, who scheduled me right away. 

For obvious reasons I was a nervous wreck the morning of, but Dr. A was super reassuring, and I knew it was the only way for me to get any answers regarding the Pulmonary Hypertension. For three months now Ive been going through a rollercoaster of it is, it isnt, it is, it isnt, and I was at a point where I just needed to know so that I could get treated and move on. Finally I felt like I was in good hands, and I was. Two hours after I went in I had all the answers I needed. I do in fact have Primary Pulmonary Arterial Hypertension (the most severe form), and they believe it is due to Lupus. The good news is that the chemo I am on for the Lupus is tempering the PAH, so for the time being the pressures inside my lungs are on the high side of normal. This is awesome as I dont have to start on the (sucky) meds for the PAH right away. They will monitor me with echos every few months, with a right heart cath yearly. Should I start having symptoms, then they will do a repeat cath and administer PAH meds during the procedure to determine which meds to start me on. While this news was in some ways devestating, and there were some tears shed in the days following the cath, I am just so grateful that I stayed in CO to have the test done. If I hadnt, I would have stayed on the answer rollercoaster, and the likelyhood is the PAH would have advanced and I would have been much, much, sicker when it was diagnosed. While I know that the likelyhood is that I have an uphill battle in front of me with serious meds, and very likely a lung transplant, the silver lining in it all is I have an answer. And knowledge is power. As long as I know what I might have to deal with, I can handle it. For me, it is in the not knowing, the shadows, where the fear lies. The truth always lies in the light, and no matter what, that is always a blessing. 

The second blessing is that I have decided to move back home to CO. When I moved to FL in the spring of 2010, the recommendation for the move was based on the fact that I would be able to stave off the worst of the PAH symptoms for some time, even possibly 5 years or more. However, in the last year my health has declined pretty rapidly; after my Pulmonary Embolus last summer, my lungs seems to get sicker, quicker. The whole idea behind the move to South FL was that Id be at sea level, and Id be able to put off the most serious of the medical interventions for some time. It did work this way for a short period of time, but now I am back to being on O2 24/7; I cant walk without it, sleep without it, sit or stand without it. If I try to take it off for even just a few minutes, to leave the room and come back, my O2 drops down into the low 80'a with my hear rate soars into the high 120's.  This has definitely made life more complicated, and my O2 concentrator has become my new "best friend" as it goes everywhere with me. However, when I get annoyed or frustrated I just remind myself of how I feel without it (like Im suffocating), and that this little blessing of a machine is literally saving my life on a daily basis. When I think of it that way, suddenly everything gets put into perspective and Im not quite so annoyed anymore. Again, for me it is always about trying to find the positive, the silver lining, the light of it all. This time that silver lining is being near my family and friends once again, it means having an answer that I can deal with, no matter how difficult it gets; and I know the more difficult it gets the more the people I love pull around me to give me the strength to get through to the next minute, the next hour, the next day. This is the silver lining, this is the light, and this is what I turn too when things get really hard.

Shadows and light brings me to what has been happening in the world at large. Just a few short weeks ago, while we were all blissfully getting ready for Christmas, we experienced a tragedy the likes this nation has never known. On December 14, 2012, we learned that a very sick young man took to Sandyhook Elementary School, and for reasons we will never know, or understand, killed 20 children and 6 staff members. All of the children were six and seven years old. No family should ever have to grieve the loss of a child, but especially in such a brutal and unexpected way, during of all times, Christmas. These families said goodbye to their children that morning expecting to see them that afternoon. Many had Christmas festivities planned; several were supposed to decorate their homes when they got home from school that day. Their parents were in the last weeks of present buying, and getting ready to have their kiddos home for two solid weeks. Now suddenly, instead of Christmas planning, they were planning their babies funerals. These families, this community, will never be the same again. But just as the truth lies in the light, so do the souls of these innocent children that were taken before they ever got the chance to even begin. The pain, the fear, the anger, the act itself, resides in the dark, and one thing I know for sure is that the light always overtakes the dark, no matter how dark it gets. It will get light again, it's just going to take some time.

I hope that all of you friends out there had a wonderful Holiday season, and that no matter how hard things get you are able to find the positive side, the light, in your own lives. I know it's not always easy, but when things get their hardest, when you feel like all you can see is the dark, that's when we have to turn to the people who care for us the most; because they will give you the strength when you feel empty, and suddenly what seemed like nothing but dark, suddenly turns to light, and that is the most beautiful blessing of all. Happy New Year all, may this year have in store everything you wish it to be; that it's filled with more light than dark, more love than hurt, more joy than loss, and the happiness that you deserve.

Love,
Heidi