I know I must really look sad as little kids keep smiling at me. I try to remember that I've left this building many times feeling this way -- scared, sad, disappointed and time after time things ended up not so bad.
Even though they don't always go great, I've always liked coming to New York Presbyterian for my pulmonary hypertension appointments. For years I was seen at the pulmonary clinic. Six month ago I graduated to the heart failure clinic.
There's this little deli on the corner of 68th and York, half a block from the hospital entrance. I stop there most times I come here. They have the most awesome sandwiches named after cities. And the desserts are amazing. I usually stop in after my appointments and get a cup of tea and a sandwich or baklava. If you've never tried baklava you just have to. I made it in 8th grade home ec and have loved it ever since. Even when money's tight it's almost impossible to resist. Then if it's a nice day I sit across the street, eat and people-watch for awhile. Sometimes I take a walk to the church a couple blocks away and stop in for a few minutes. It's pretty much the only time I set foot into a church, being a believer in God but not organized religion (as the niece of a nun, a sliver of good old Catholic guilt hits me whenever I say that!) My little routine makes coming here not so bad, even though I often leave the doctor's office with bad news -- like today.
So as I sit across the street from the hospital waiting for my ride, even the comforting 'are you still smiling' phone calls from my husband do little to make me feel better for more than a few minutes at a time (and he usually can ALWAYS make me feel better). Suddenly the line in the Jett song playing on my iPod, 'I'm happy just to be alive,' makes me burst out in tears. An overwhelming sadness floods in as the tears flood out. But I know it's only temporary. I'll allow myself these few moments of 'woe is me' and then I'll get on with it.
I don't do self pity. I think it's just freaken obnoxious. Sure everyone feels bad for a little while from time to time but to dwell on the bad if you've been dealt a raw deal just doesn't make a lot of sense to me. I mean you have to live with whatever it is that you're upset about, then in addition you spend time feeling bad about it, well then you're just doubling the shit. To quote a friend: 'it is what it is.' We just gotta deal with what life gives us -- good, bad or indifferent, it is what it is.
After all, good can be found in just about anything. For instance, how many people ultimately change their lives after they've been diagnosed with HIV? Facing a life-threatening disease very often gives us the will to fight to be alive. To want to be alive. To want to live and change our lives so we are living, not just surviving. Making something good out of something bad. There is just about always something good that can be found in something bad -- a bright side. But right now, just for these few moments, I feel like my world is crumbling.
My pulmonary hypertension has been getting worse. For about a month now just walking across the apartment gets me out of breath. My heart starts pounding, my arms and chest burn. I had managed to come completely off using oxygen but now I sleep with it on every night and most days have to use it 10 or 20 times throughout the day. Climbing stairs has become really hard, but I do like the piggyback rides I get out of it (bright side)! I can only walk about half a block at a time and inclines and hills are absolute torture. It seems my medication just isn't working anymore, even though the dose has been tripled.
Long story short, a few tests need to be done to confirm but my doctors want me to go on Remodulin, a subQ pump. Basically they insert a tube into the fat in your stomach and attach a little pump that you wear against your stomach or in a belt around you. It's 24 hours a day. So if I wore a tight shirt or dress it could be seen. It's there when I sleep, when I take a shower, when I have sex. Yes, very attractive. Happily I'm lucky enough to have a husband that wouldn't care if I had to drag around something the size of a refrigerator as long as it made me healthier (bright side again).
But a pump -- wow. Not far behind that when Remodulin doesn't work anymore comes the catheter in my chest. I sat listening in horrified amazement to my doctor as he looked at the floor and told me that these things have to be tried before I'll be accepted as a transplant candidate. Whoa, back up. I still believe it's stress making me this sick and my doctor, who works directly underneath one of the best PH doctors in the world and consults with her on every move, just said the word transplant?! Referring to me?!
When you live with pulmonary hypertension you're told and the literature all says that the final stage is a heart/lung transplant, but he's saying this now? Not 10 years down the line or never like I always believed would be the case. I'm at the end of stage 3 boarding on stage 4 he says, the final stage. What the hell?! Six months ago I was fine. I had bad days, even bad weeks and sure as hell would never run a marathon but now he's telling me that I am this sick to where I need a 24-hour pump attached to me? Sick enough to even mention the word 'transplant'?! After all, I'm finally HAPPY. My life is far from perfect but it is good and getting better and better. How could this be happening now?
Okay self-pity time complete. Over, finished. Reality check now:
Number 1 -- there are still tests that need to be done. A right heart cath will tell all.
Number 2 -- I got sick when my stress level became unmanageable. I know from the past that stress really affects the heart. Remove the stress and the symptoms will follow.
Number 3 -- I believe in Karma. I have done a lot of good in the world and I am finally getting some of that back. This too will work out.
Number 4 -- if it doesn't, we'll make the best of it. I have an extremely supportive partner who loves me no matter what. We can get through anything.
Number 5 -- there is a bright side. And that is that there is a subQ pump and I can get it. I could live in another country where I don't have access to it. My heart breaks for those who do. Also, there could have been no such thing as Remodulin. If the company who makes it hadn't of been able to complete research and clinical trials which happens all the time, if the FDA didn't approve it then I wouldn't have this option at all. But it does exist and I can get it. It is there if I need it -- major bright side.
So I am okay now. I will deal with this and get through it. Life is still amazing and beautiful. If I have to wear a pump then I will. And I will, every single day, be happy just be alive.
Send Jeannie an e-mail.