Friday was the last test to confirm if I had pulmonary hypertension. I was headed in to have a heart catheretization with exercise. I was told I would be riding a bike. Great, I can ride a bike. Well, take a look at this picture.....It was nothing like this and I certainly didn't look as good as this lady!!
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| This is NOT what I looked like! |
I remember the day I learned to ride a bike. I was 4 1/2 , living in Westford, Ma and it was in Krista Lytle's front yard. We went back and forth in the front yard until dusk. I'll never forget that house or the smell. It was a split level with an addition to the left and every time I was there I felt like her dad was making hot dogs in a fry pan with butter ( and grilled buttered buns). Crazy vivid memory, right? My mom also told me I learned to use the phone at her house. At 4 years old I would call my mom from there and say " Hi, mom, I'll be home soon" I probably learned alot of things I should not have there. Not to worry, we moved to Duxbury 7 months later so I was saved from fried hot dogs with grilled buns.
My dad came with me for the test since my husband will most likely take off many days if I have my surgery so no need to for him use a day for a test, plus I love hanging out with my dad.
So I check in and we head over to the Shapiro Center. This is where the Dr. was tragically shot. My heart still breaks for his family, wife and patients. The Shapiro Cardiac building is amazing and the staff makes you feel at home and comfortable even though you are there for heart issues that can be very scary.
I ran into my friends mom ( Betty) the day before my test and she also had some cardiac issues and we were laughing about how you check in on the lower level in the Shapiro building. When you arrive they ask you your name then on a PA system the woman says " Bay 14 is here, again, Bay 14 is here" What? Wait, what?! Bay 14? What am I? A car? I bust out laughing and ask them if I am going to get waxed and polished before I leave!!! Bay 14 ready for a under carriage care!
This is my second heart catheterization test but this time with exercise. The last one was just to test pressure in the right side of my heart and use the contrast to see where the clots are in my lungs. When the Dr put the cath in my neck it hurt. It really hurt. I was laying there with my head turned to the left, blankets on me and I am covered and blocked so I can't see anything, kinda like a c- section. They clean my neck and arm with a green soap that is cold and stains. I realize a few hours later the green soap is all over my hair, not a good look on anyone! The Dr was awesome but it still hurt and they said my skin is thick so it would hurt even more. No kidding, thick skin but a total wimp.
Warning: do not google image thick skin on neck. I can't un see that. Jeez Erica, think before you google!
This time was the same, no, even worse. When the Dr," Sasha", put the cath in my neck it hurt like hell. His first name was Sasha and he did resemble Sasha Baron Cohen! He said I could cuss all I want and all I could muster up between the tears streaming down my face was " you suck". The room busted out laughing. The Dr said it was the best thing he heard. I was honest:)
So the neck cath was in so he walked over to put another cath in my left wrist. Luckily, he had numbed it prior so it was just a pinch.
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| Neck Cath in and ready to take a bike ride! |
So I am ready to ride the bike! I have my neck cath in, my wrist cath in. Let's do this. Keep in mind, I get out of breathe when I climb a set of stairs or walk in thick sand and I m getting on bike in this get up! Tubes hanging out of my neck and wrist and the neck tunes pull and hurt when I move to much. This is going to be fun.
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| My bike! |
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| Heart Echo machine |
So picture this. I am on the bike. In my leggings and a johnny ( I have lost weight so at least my back rolls are gone and it's not that bad!!) There is a nurse in front of the bike who is telling me what to do. She is also drawing blood from my wrist every minute. 4 tubes per minute. There is a man to my right who is using the Heart Echo machine during the test. He is taking heart echo pictures the entire test. Yes, he is under my left boob with the ultrasound wand while I am riding the bike. Not invading my space at all, nope. Then there are 3 people behind me telling me to stop breathing for 3 seconds 2 times per minute. I can't breathe as it is and now they want me to skip a breath. Good times. The girl in the front is yelling out commands to the team during the test. It's a shit show. All I can do is look down and think how I should have put my Garmin Vivo fit wrist band on my shoe!!!
The girl tells me to only pay attention to the bike and keep the speed at 60 rpms. " Erica, ignore everything that is happening and just make sure you keep peddling at 60 rpm and do as your told for breathing" OK, got it. How hard can it be? Holy Shit. 12 Minutes. TWELVE MINUTES. This was a lifetime.
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| Do I look thrilled after 12 minutes? I look like I am going to pass out! |
8 Minutes go by. I am so thirsty. My mouth is so dry. Have you ever had a teaspoon of cinnamon? Don't. This was worse. 10 Minutes. Girl taking blood " Erica, keep going, your doing great" Does she notice I am about to fall off the bike? 12 Minutes, 48 tubes of blood, a bruised boob and 24-36 missed breaths and I am done. Girl " Can you give me another 2 minutes?" Me: " NO WAY"
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| This is the cath in my neck. Rising a bike with this, not ideal. |
Test is over. I did well. I drink a cup of water. I would have paid $50 bucks for that cup of water.
They said I will have to back to recovery and can go home in a hour! Thank god.
They turn my " chair"around to leave the room and there are 12 people clapping for me. Are you shitting me! 12 people watched me on a bike with a johnny wide open in the back with my leggings and no bra. Awesome. Just awesome. Got to love the Brigham and it's teaching way! I kid. This is the best hospital and the only one I want to be in :)
I told everyone I would have charged admission if I knew they were there.
My dad comes down, the nurse Diane finally takes out my neck cath and my wrist cath, I chug a water and a ginger ale like a contest at a fraternity party and I am headed home! I hope I never have to do that again. Cross that off my bucket list. Check!
So before I left the bike room, the head Dr who runs that heart cath exercise told me that I do have exercise induced pulmonary hypertension that is caused by the large blood clots that are still in my lungs. My Dr will call me in a week or so to have me come in and decide the steps to take to control this as it damages the heart. Surgery to remove the clots is what we talked about before so I am pretty sure it's what the plan is.
For the past few months I have been wearing compression stockings so my ankles and calfs do not swell up since the clots are not letting everything flow and it's causing swelling. This causes my knees to swell which can be painful. I have stopped walking every day and walk a few days a week since it was making it worse. Bottom line is if the clots are gone, the swelling should go away, my deep breathing pain should go away and the hypertension should go away. I vote for that.
So there is is folks. My last test and now the wait to hear what we do to fix me.
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| Headed home and I forgot about the ecko stickers! |
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| Blue hands from soap! |
I went to Brigham and Women's Hospital on August 18th I am still dealing with the clots and the damage they caused. Once I meet with my Dr's, I will post about the next step in my journey.
The best part about going to the Brigham, I get to have coffee after my appointments with my dear dear friend, Miss Laure Wenham:) xoxoxox ( she works there as does long time friends who I grew up with, Suzanne and Julie, the best sisters I know:)
Thank you all....xoxoxox erica
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