A year ago I was diagnosed with Severe Pulmonary Hypertension. Many people have not even heard of this. But for me it took me by storm. A year ago today.. Sept 6th, Friday. I went to see a pulmonologist. Nervous about the appt cause I had no idea what he did. I went for a 6 min walk, couldn't get very far without feeling like passing out. Dea and I sat in his office as he crossed his legs and told me I had 3 weeks to live, maybe 6 months. I still have the vision in my mind. a total out of body experience. Dea and I cried. The Dr. left the room to arrange for me to have a right heart catheterization and we cried for probably 20 minutes, Dea and I. The Dr. told me I needed to give up school and work. I yelled at him and said he could take work away from me, that was fine, but he won't take school away from me. I will become a nurse!
I remember going into the cath lab, which for me was cool cause being in awe of everythingmedical, he told me I was gonna get a swan inserted in my neck to measure the pressures in the right side of my heart. Anyways, sometime during the procedure, I heard him say "Grab a bed, we're going to ICU". WTH? I don't remember much. I did make a few notes
PATH
Friday Sept 6th, went to dr. Iverster, could only walk 250 ft and o2 dropped to 85 when walking for 6 min. Went to the cath lab, pulmonary pressure was 103/66, normal is 25/15. admitted straight to ICU with a swan ganz in place. art line attempted 3 times no luck. brachial draw for abg's.
Sept 7th art line attempted again for a total of 9 times. Got to see the girls
Sept 8, was told I need a heart/lung transplant. World starting to fall apart, do I need to start writing letters to my family and loved ones? Not a great day at all.
Sept 9th got swan taken out and art line. Little nervous to move to cvtu. had a PICC line, that SUCKED!!!!!!!!! thru SVT at 205 bpm for 10 min, tried to vagal, no luck, they gave adenosine. felt like an elephant on my chest. Not good. stayed an extra night in ICU.
Sept 10 finally moved to cvtu, the girls came and i got to do homework. i was afraid to go to sleep so dea stayed the night with me.
Sept 11, it was announced last night in Kingdon Hall that I was in the hospital, a few visitors came, so nice to see familiar faces. kids came to do homework.
Sept 12, went up on med to 6 ng. makes me feel awful. Its an unexplainable awful. I have jaw pain and absolutely no energy. I'm now that lady who has to drink boost...Chocolate :) I did a little bit more for cardiac rehab, went for a walk around the unit, trying to work up to stairs. The staff has been great, for the most part they let me keep my dignity and independence. I smell awful cause I sweat so much. yuck. I'm angry today cause it's not fair I'm not at school. All I can focus on is how much am I missing and how far am behind I am going to get…
Sept 13. Today is so far a good day. Carl and Holly came and we signed my no blood card. Dea is my #1 and Carl is my #2. I am so relieved to finally have this done. I think for a while I was avoiding doing this because that solidifies me being willing to die or willing to do everything to save my life .But I feel relieved and proud of myself and so very proud of my husband for being my number one. You see Dea has always been my number one, and sometimes I think I forget that.
Sept 17. Went up on the flolan. Super awful headache today. And bad news. Even though my dad is here. I just want to sleep the day away
Sept 18. Remodulin rep is here tons and tons of information to take in. But I'm off the flolan and on the remodulin. I feel a sense of freedom. Hoping to go home Friday
Sept 19 at this point I'm just ready to go home. Had Dea take everything down and start packing it up. Cami came over yesterday and we finished some stuff for school.
Sept 20. Discharge papers are written. I'm so looking forward to getting back to some kind of normalcy. I want to study, sit with the kids and make love to my husband. The Luke Bryan concert is tonight and have decided not to go. Hardest decision because this was Destiney and my night. Feeling a bit selfish but I don't care. Bri and Taylor came with the girls. Made the night a little easier.
Sept 26 Developed a major rash on my chest and abd. Yesterday I went to rehab and were thinking I'm having a reaction from the LED stickers. Went to Ivester, he says I'm clear for the spleen surgery, but if there are any complications that I may loose my spleen, except that the spleen helps fight infection so I'm thinking I need it. He also sent a request for me to go to the U for evaluation for the lung transplant. Oh yea got handicap plates yesterday, now I'm that girl.
OCt 2, had spleen embolism done. Pain was uncontrolled. had a migraine, was admitted
Oct. 9 was admitted in to the hospital for dehydration Marijo came and had me sign off that my psych clinacles are complete. I'm tired. I just want to sleep.
Oct 10 came home, missed another test
Dea and I are closer than ever. We starting building a house, I decided to finish my dream and get my BSN. A friend of mine suggested I write a book. Not sure I want to do that.
I've learned some incredible things in this past year. I take everyday for what it is. I try to be up building and encouraging. I take my time and do what I can.
I want to take this time say thank you to my entire nursing class for being there and doing so much for my family and I when all this happened. I want to thank my family for their strength.
It's a crazy beautiful life.....
