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Monday, March 5, 2012

Just when life seems to be coasting along...

Inevitably, along life's journey, you are going to come across things that derail your train from the tracks. This blog started with such an event and things seemed to have turned around for the better over the last 3 years. If trials come as a way to help you grow to your full potential on Earth, I guess it's time for a growth spurt. By now, I'm sure you are saying "Get to the point."


I'd first remind you that patience is a virtue (one that I am still grappling with for sure) but I will get to the point. I was diagnosed with pulmonary hypertension last week. I've been meaning to blog about it but couldn't find the words. For those of you who this or any of my other blogs, you know I was diagnosed with Lupus SLE in 2005. Since then, there have been many ups and downs but I got a good handle on my health with the assistance of a wonderful doctor and the right meds in 2008. I've been in remission for a while now and my health was seemingly better than ever thanks to a combination of the loving and supportive family/friends, the right foods, the right meds and a new job (i.e., significantly less stress). I had an appointment scheduled for Monday to talk to my rheumatologist about the necessary steps for planning for a high risk pregnancy but honestly, in remission, I felt strong. I didn't think it would be too high risk. Then on Wednesday night, everything changed.


I was sitting in the living room and noticed a little heartburn and some heart flutters. I'd eaten already and my heart has been beating faster than normal for several years now. I'd attributed my high pulse rate to my lack of regular exercise (ok, barely any exercise). I blamed the heartburn on dinner and eventually made my way upstairs. By the time I fell asleep around 1:00 am, the heartburn was gone and my heartbeat felt normal. I will say I was extremely conscious of all thing heart related because I lost a high school/college classmate (same age) the week before to a heart attack. Since it was heart disease awareness month, I'd seen numerous articles and TV segments on heart attacks having different symptoms in women. At 3:00 am I woke up with a sharp pain in my chest, radiating pain in my left shoulder and on my left side. I jumped up quickly and woke up Hubby. We were both in a full scale panic so my rapid heartbeat and light headedness could have been from that but I was determined to be safe rather than sorry. I decided to go to the ER. By the time I got there, my left side and shoulder were still hurting but the dizziness and rapid heartbeat had gone away.

They took me back to the ER admittance area and gave me a nitroglycerin patch. Then, they began running tests. The EKG was first. The doctor on call literally patted me on the head and said "Awww. It will be ok." after telling me that my EKG was "abnormal." That "Bedside Manner for Pediatricians 101" moment started what would be a series of eye rolls and comments to my husband about wishing I'd just stayed home. I know he meant well but I am not one for coddling. Just tell me what's going on without all of the fake affection. That said, if he had any indication of what my diagnosis would be based on the EKG alone, I see why he was having such a "you poor thing" moment.


After the EKG, I had a series of seemingly unending tests. CAT Scan, Radioactive Isotope Breathing Test, Echocardiogram, Ultrasounds of my legs and neck to see if I had blood clots, Chest X-Ray and they took no less than 20 tubes of blood (and blew out several veins in the process). After all of that, they admitted me to the hospital. I've never been admitted before. It's a scary thing when someone tells you that you are too sick to leave. I actually had the pulmonologist on duty tell me that I had pulmonary hypertension and my heart could give out at any minute so I should plan on staying in the hospital for the long term. Clearly, I am typing this now from outside the hospital so that didn't happen.


After not sleeping for 2 nights in the hospital (and catching a cold from the woman I was sharing a room with), I checked myself out. I spoke with the specialist who I would be seeing on Monday and she said I could see her as an outpatient. She did explain that my disease is rare and it sparks a response in doctors who don't specialize in the area that is often over the top. That gave me a little sympathy for the doctor who told me my heart would give out if I walked out of the hospital. In any event, I walked out. I did follow doctor's orders and take a portable oxygen tank with me. I also got an oxygen hookup in my house and filled a prescription for injectable blood thinners that Hubby had to inject in my stomach (not as painful as it sounds minus the burning--of course getting a shot at this point for me is common and pretty close to painless).


I also got a pep talk from a wonderful nurse (the heart failure nurse to be exact--scary title right?) before leaving the hospital. She told me not to look on the internet because most of the studies online are outdated and new developments are happening all the time. She also told me that it's not about where I start but where I end up when I start treatment. I didn't have the heart to tell her I'd been on the internet on my phone from the moment I heard "pulmonary hypertension." That ended with me shutting down my phone and setting it at the edge of the bed like it was the bestower of the disease. After talking to her stayed away from articles that had the terms "fatal" and "low survival rate" in the first paragraph. I did read about new studies, potential new treatments and descriptions of the disease and related complications. Can you say daunting?


Monday, I had a pre-op appointment and was comforted by the doctor (not because she kissed my forehead, which she did) but because she was honest with me and broke down the treatment options in plain English. She talked to me like a real human being. She wasn't overly optimistic but she was indeed optimistic because of my lack of symptoms. I didn't look at the internet that night. I had a good dinner with Hubby and prayed for a successful procedure.


Tuesday, I had a right heart catherization. Afterwards, my doctor told me that my numbers weren't quite as good as she'd expected based on the lack of symptoms but that we were still in an early enough stage to treat me with pills (as opposed to a pic line or an IV). I had to sign a consent form and join a group to get the medication I'll need (Tracleer) because it can cause liver damage and birth defects. So much for the plans to talk to my rheumatologist about getting pregnant. Now, each month, I will have a liver function test and a pregnancy test to remind me of the void where my baby should be. I know that choice of words is better suited for a soap opera or a bad television drama so excuse my lapse into the super dramatic. I also know that there are many options for women who can't carry a baby and I haven't ruled any of that out yet despite the diagnosis. That said, I am still working through the gut punch of it all. In the work out phase, I'm allowed a few phrases that seem to need their own sad, dark theme music.


So here we are. Life is still moving forward but I've picked up extra baggage and for the moment, it's in the form of a small oxygen tank on wheels. I keep saying I will take this all one day at a time (as if there is another option) and not drown in the what ifs. I haven't started the medication yet and today, I have had moments (walking into the office from the parking garage) where I felt short of breath. I think part of that is Lupus, which is mildly active during certain times of the month (sorry if that's too much information but it's true) but part of it now has another name. Leave it to me to get something rare and incurable with no family history of the disease and no history of smoking. By the way, did you know there is a Rare Disease Day? It's on Leap Day, which coincidentally was the day after my full diagnosis--gotta love that irony. Let's raise awareness for the rare disease crew every 4 years. Anyway, I digress.


And that ends the lament. Overall, I am strong and I am breathing, which is apparently something I can say when people ask how I'm doing without an ounce of sarcasm. More importantly, I see this is as an opportunity for mental and spiritual growth. I worked on having faith last year and banishing worry and doubt from my life. They are the great detractors from a positive focus/outlook. I thought I was pretty solid on that front despite the fact that it was never really tested (last year was pretty great in general--all I worried/had doubts about was getting a permanent position at my current job). I did stress about it for a while but then I gave it God and just did my best in each interview. I was eventually offered the job and decided (rather swiftly) that I'd successfully run the faith race and earned my unshakable rank. Now, I am standing in front of a much bigger hurdle (make that a pole vault) and here I am all out of shape and unprepared to run or jump. Guess it's time to get in shape. I should tell you that despite the current science, I plan to clear that jump against any odds that exist. Enough metaphors (and don't ask why this couch potato is using all this track and field jargon...for some reason--maybe that I have to start doing mild exercise when I start the new meds--anyway, it just seemed to fit).


It's time to put all that new me stuff to the test and then keep growing. My New Year blog entry and my 6 goals hit home in a whole new way now. I'll be blogging about the journey here (peaks and valleys) as usual. I hope you'll join me along the way and if you have PH, I'd love to hear your story. If you read my other blogs, I'll still be cooking and writing about my life with Lupus (for some reason, that sounds like a TV show where Lupus is my long lost Eastern European cousin a la Perfect Strangers). Hubby and I are still continuing our new business venture and there's lots of excitement there these days. I'll be keeping up with that blog too. Ultimately, life moves with or without you. I'd rather be moving and that's where I am today.

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