Tonight I have hope. By the time you read this that hope will have been completely dashed or will have been amplified dramatically.
Since being diagnosed with the first of my three potentially fatal illnesses, I’ve had hope about a lot of things. I’ve had hope that my life would get better and it did. I’ve had hope that we’d find a cure for HIV and we’re well on our way. I’ve had hope that I could make a difference in this world and I’m comforted by the fact that I do make a small difference here and there in various ways. But underneath it all, no matter what I say to anyone else, I knew my life was going to be short. There never was much hope that it wouldn’t. Mostly because of my pulmonary hypertension (PH).
PH narrows the pulmonary arterial artery making it difficult for oxygenated blood to go from your heart to your lungs. The pulmonary pressure builds and your heart has to pump harder eventually resulting in heart failure. PH is a rare disease but occurs more often in people with HIV than in the general population.
Early tomorrow morning I’m having a procedure called a right heart catheterization. It’s not a nice procedure. Basically they stick a long wire in your groin that then goes into your heart. I’ve had about eight of these done but this time is different.
About a month ago my cardiologist called to tell me that he found something strange on a Catscan. To make a long story short, I have a genetic abnormality that is causing blood to be pushed off to the side. It’s a very rare defect and he had to do a lot of research and talk to several specialists to determine the importance of this find. As it turns out it may have something to do with my pulmonary hypertension. It may even, from what I understand at this point, be the cause.
So tomorrow we do a right heart cath to determine if it’s a little or a lot of blood being misdirected. If it’s a lot the next step will be to talk to a cardio vascular surgeon. With the risk of performing heart surgery on me with my specific conditions, I can only assume the benefits could be extensive. At least I can hope.
I already have extensive heart damage from PH. If this test reveals that surgery might really benefit me, it probably won’t reverse that damage but maybe, just maybe, prevent more damage. It could extend my life.
Since finding this out I’ve had something I have never had before...Hope. Hope that I can see my nieces, nephew and step kids grow-up. Hope that my quality of life can be a little better. Hope that my husband won’t be burying me in 5 years. Hope that I may have more sunrises in my future than I ever imagined. And it is amazing. Just for this moment, it is amazing.
I’m prepared for this to turn out to be nothing. I really am. If it does then I’m okay with that. I’ll be where I’ve been for eight years now, trying to take care of myself and make the most out of the days that I do feel well. Even if my doctor tells me after the cath results are back, that there’s nothing he can do, I’m really okay with it because I’ve experienced something beautiful. Something I never thought I’d have the chance to feel. Even if just for this short time, I know what it feels like to have the hope of a long, healthier life. And for that, I am grateful.