Only Special Patients Get to Wear The Blue Gown

Yep, that's me in that hot little blue number. I wasn't always this cool though. I started out wearing the white with flower print gown just like everyone else. I'll get to how I became so "special" in just a bit. I guess I should start from the beginning. Not the beginning, beginning but, when I was told I could no longer dodge the bullet and needed to be more aggressive with my PH treatment. Like I had stated in my earlier blog, I started to feel real crummy earlier this year and my PH doc wanted me to get an echo. I went in and HOLY MOLY!!! my pressures were 128!! To understand the severity here, normal pulmonary pressures are below 30 and my last echo said my pressures were around 60 I believe. My last echo was also only 9 months earlier. So, needless to say, my doctor was pretty concerned. She has always been very laxed about letting me decide how I want to be treated, however, this time she was rather stern with me and said if I didn't do what needed to be done, I would die and probably fairly soon. This was in April..the week before my daughter's big 1-0 birthday. My doctor wanted me admitted to the hospital for this procedure on my daughter's birthday...why does every major event happen on or quite close to my daughter's birthday? Anyways, we celebrated her birthday with family and later that night I began my week long stay. Now, most people do not need to stay for a week. it's a simple procedure...well...I'm not that simple =) I have a very low tolerance to any medicine..I mean like Tylenol makes me sleepy lol!! So, my doc thought it would be a good idea to have me come in to be monitored. Better to be safe then sorry. So, I get settled in for the night. My family has left and it's just me and the nurses. Oh yea! My PH doc had ICU duty that week so she was able to check on me( I forgot to say I was actually admitted into the ICU). I feel like such a woosy sometimes and I really do not like to draw attention to myself. So, like I said, I'm all settled in for the night, just me and the nurses. Since I can't remember all of the nurses names I will refer to my first nurse as male nurse 1. Male nurse 1 got me all settled for the night. Gave me my white/flower print gown, brown fuzzy hospital slippers, gave me my evening meds and had the IV nurses put in my IV. Male nurse 1 is also, in my opinion, the reason for the awesome blue gown! Apparently when you stay in the ICU they like to have you overly loaded up on potassium since they give you water pills. I was already quite well off in the potassium dept but, whatever, who am I to argue. UGH! I should have argued!! He gave me straight potassium in my IV line...not diluted at all. He said I may feel a slight burn that will go away. Slight...burn?? I felt like my vein was on FIRE!!!! It felt like someone was blowing my vein up like a balloon! Oh man I can't begin to describe the pain. He slowly but surely decided to send some saline into my IV to ease the pain. It helped. The pain gradually moved from my forearm to my wrist and shoulder, oh boy..big frowny face here. I am also not one to complain, scream or throw a fit either so I simply told the guy no problem, it's ok, I'm feeling a little better. LIES all LIES!!! I will now begin the tale of "The Blue Gown".  When I am in a lot of pain my body heats up and my stomach starts to feel all bubbly like I gotta poo and poo NOW! I waited for the nurse to leave and waddled over to the potty. As soon as I sat down I knew I was in trouble. I felt light headed and knew I was gonna pass out and soon! Only problem was, I had already started going potty and I knew there would be no wiping...at least, not by me. I calmly pulled the nurse call line and gently laid myself on the floor...oh the cool floor felt so good. I awoke sometime later to a strange man saying my name and not so gently shaking me. All I could think was "Who the heck is this dude and why is he waking me up?!" Then I hear a female voice saying "CALL DR. DEXTER STAT!" Yes, yes..my PH doc's name is Dr. Dexter hahaha. Dr. Dexter?! Wait, what? Oh man...this is real.....I'm on the ICU floor, with my undies around my ankles, there are strange people smiling and talking with me, another strange girl wiping me with warm sticky cloths and worst of all....there's an awful, horrible smell in my room. Now this beats my past "Most Embarrassing" moment by a long shot. I then hear my doc saying.."Well, at least you did it here." I was finally able to sit up and get back into bed. Female nurse 1 was now dressing me in a blue gown, BRIGHT yellow slipper socks and male nurse 1 was applying a BRIGHT yellow band that said "Fall Risk" Lol...how cool is this! I couldn't do anything except smile and laugh at myself and tell my friends and family about my "mishap". So, thats how I received the special blue gown. it is color specific attire for patients who are in danger of falling. Oh boy!! I should mention that in the whole ICU...full of elderly and open heart surgery patients, I was the Only one wearing "Fall Risk" attire...I even had an awesome sign on my door that said "Fall Risk". I wanted to take it home as a souvenir but, unfortunately, they said no. I will write another blog explaining about the Remodulin and the rest of the hospital experience later. I just wanted to share this funny yet embarrassing tale with you all. Tomorrow I go in for my Groshong placement and that most likely will be another funny story. So, goodbye for now and when next I blog I will tell my tale of Reggie...The Remodulin Keeper=)

Just Getting Started and a Brief? History of Me

I have been hearing about Blogs for years now. I never thought it would be something I would ever even consider doing. Why do I want strangers knowing my life? Well, I find myself telling strangers about my life on a fairly regular basis so, why not publish it? I am an ordinary person. Thirty five year-old(as of 2012) married woman with one 10 year old daughter. I love my family, friends, photography, music, movies yada yada. I think I already put that in my "about me" section but, not everyone reads that so, if you already have, just skip that part. I grew up fairly normal...everyone has at least one or two horror stories from their youth. I graduated high school, got a job, married a jerk..it happens, met a wonderful man at work who made me finally feel like I was really someone special, divorced the jerk...we'll leave it at that, got pregnant, married wonderful man from work, had baby and then thats where my life would change forever. Immediately after giving birth to our daughter, I felt short of breath. I couldn't breath, couldn't think, my chest hurt but, I had this beautiful baby girl and thats all I could think about. Lets back this up a little. I should mention our daughter was 3 weeks early due to complications with pre-eclampsia. My liver had completely shut down and the baby was in distress...time to get her out! She was stubborn and did not want to come out! The doctors were afraid she would not be breathing when she finally arrived so, they brought in the crash cart for her. I, in my own little world of "Epidural", had no clue what was going on. She finally decided to appear and she graced us all with a LOUD scream! Everyone was clapping and relieved..I had no idea why until I was informed of the doctors fears. She was born perfect! I, on the other hand was not doing so well but, like I said, all I could think about was this beautiful little girl looking at me. I was in the hospital for a few days while I recovered from my liver damage, well, mostly from the medicine they gave me to correct the liver damage. I was still feeling really awful but, every assured me I was ok and just needed rest. For the next seven months I was put on inhailer after inhailer and Prozac! Can you believe it?! My doctor had the nerve to tell me that my shortness of breath was due to post partum depression! I was so angry! I felt lied to! I was told..take this inhailer, if it doesn't work then we'll give you a chest x-ray. That went on for almost the whole 7 months. I finally gave up and just quit going to the docs. On November 17th, 2002, my husband, daughter and I went to get our first family Christmas portraits done! I was so excited!! Have you ever been to Sears on a weekend during Christmas picture season? I have! Never again. Our appointment was at 2pm...we got our portraits done at 4! During this time our daughter decided to have the biggest poo-poo a child of seven months could have! Oh, did I mention, she was exactly seven months old on this date? Anyways...while she was having her major blow out she was sitting on my leg! AHHHHH!!! In our family pictures she is sitting on my leg to cover up "The Spot". Don't worry, none of it got back onto her. Thats not even the worst part of the day! we then decided to go upstairs to buy a new dishwasher. My hubby was busy arguing with the salesman so I decided to go sit down in the carpet department with our daughter and the stroller. Oh man! I felt awful. Brent, my husband, came over to say he was ready to go and when I went to get up BAM!! Down I went like a ton of bricks! I don't remember much of this but, I do remember a nice, angelic woman taking care of me while I vomited on the floor. Her daughter was playing with Paige and Brent was, well...Brent was in shock. He initially thought I was making it up for attention. After all, my doctor did put me on Prozac. The paramedics arrived and put me on the stretcher. How embarrassing! The did take me through the back of the store to the ambulance...THANK YOU nice, nice men! Have you ever see the movie Fire in the Sky? You know, the part where the aliens have that poor man on a gurney and they're wheeling him through a coridoor of bright lights and creepy stuff hanging from the ceilings? That's what being wheeled through the back room of Sears was like for me. strange men learning over me, poking me with stuff, clothing in bags hanging from the ceiling..scary! So, now I'm in the hospital and one of the paramedics, an older man, stayed with me the until a doctor came in to see me. I wish I knew who he was, I would give him a huge hug for being so sweet to me! So..onto the diagnosis...there isn't one...yet. I hear the ER doc talking to another doc outside of my room and I all can really make out is Enlarged Heart. WHAT?!! But, I have a breathing problem..not a beating problem?! By this time my hubby has showed up and is even more shock when they say I will need to be admitted for a while and they aren't sure for how long. Just great!! I have things to do, a child to take care of..Christmas shopping to do! Not this year! I was put into the cardiac wing for a week. Oh yea, my room wasn't private! I shared my room with the first 2 nights with an angry woman of about 85. She had no intentions of being cooperative with anyone. She was nice to me, however. I think maybe she thought I would help bust her out hahaha!! She had a problem with IV's and my first night there she ripped out her IV's AHHH!! Thank goodness for screens. The next night she decided to give the doctors a stool sample....without a toilet or a nurse present! If I remember correctly she was muttering.."They want a stool sample, I'll give them a stool sample!!" Oh please get me out of here was all I could think. So, now, we are up to the diagnosis. After days and days of countless testing after testing, I got my prognosis. Pulmonary Hypertension, no cure and terminal! WHAT?!! But, I'm only 25!! I have a 7 month old daughter! I haven't even begun to live yet! I am sent home on lasix(a water pill) and coumadin(a blood thinner)oh yea...and an oxygen tank..ugh how embarrassing, right?! I was told I needed a biopsy on some lymph nodes in my chest. I might possibly have cancer also. Biopsy results...cancer free but, I do have something called sarccoidosis as well as PH. By this time I am feeling like I have been cursed! Possibly by my first mother-in-law? She really disliked me. I was also told at this point that I had roughly 6 months to live. Well...damn! This keeps getting better and better. I was happy though, I would at least make my daughters first birthday. I kept going though. I was determined NOT to let this get me. At the time of my diagnosis there were only a couple treatments for PH. Oh, the sarccoid is in remission. I took prednisone to get rid of that..ugh my poor family! I was angry while on that junk...anyways..Ph at the time of my diagnosis had only a couple treatment options..Flolan(my body did not respond), oxygen, which I was on and transplant. I would need both lungs and a heart. WOW!! I really am special! During the year after I was diagnosed I declined pretty rapidly and I began to get angry. Not at the world but, with my doctors. They were perfectly content in just letting me die. Well..I was NOT! I am a fighter and I refuse to let this get me! I threatened going to the Mayo clinic and then...they did something. Nothing like a possible malpractice suit to get a hospital jumping! They sent me down to Stanford University for transplant evaluation. It went well..I guess. I was still determined not to have one though. This was December 03', a little over a year with being diagnosed. I do need to mention a new MIRACLE medicine was released in this time. Tracleer. After only 2 weeks of taking it, i felt a little better an no longer needed the oxygen tank! So, back to Stanford. I was asked to come back in March 04' to have some genetic tests. They wanted to check for a heart defect. March finally comes and guess what?!! Stanford found a HUGE hole in my heart. I wonder why my clinic couldn't find it?? UGH!! On April 26th, 2004, 9 days after my daughters first birthday, I had open heart surgery...At St. Vincent's here in Oregon. Obviously I survived although, I was sure I would not. I had more then a few good years and then I declined slowly again. During the 6 years I had been doing really well, I had received a new pulmonologist. I love her so much! She is absolutely the best doctor I could have. She has done so much for me! When I first met her I was still doing pretty well. In 2010 both my dad and grandfather passed away. My dad from ALS and my grandpa from cancer. I slowly becan to decline in health after their passing. I really still have not come to terms with either of their deaths. I think it hits too close to home. Anyways, I may talk about them in future blogs but, not right now. The end of 2011 I began to feel more sluggish and not as chipper as I usually feel. Around March of 2012 I was experiencing great amounts of stress and got to the point where simple tasks winded me and I nearly passed out a time or two. This concerned my doctor and she ordered an echocardiogram of my heart. I have them twice a year along with various other tests and usually my results are about the same. Well...this one was BAD!! The right side of my heart was barely functioning. Time for a change in my medicine regime. in April...on my daughters big 10th birthday no less, I was admitted for 6 days to have an IV line inserted in my arm. it's called a PICC line. I have a medicine called Remodulin pumping into my body 24/7. At first I was a little, well, I just wasn't on board with this plan. I have too much to do, too much I want to do to be tied down to this pump and IV line! When my doctor basically said do it or die I had a change of heart I guess you could say. It is now almost 2 months later and I am feeling so much better! It isn't as bad as I originally thought it would be. I go in this Friday and have my PICC line taken out and a central cath called a Groshong put in. It will go into my chest and will be much more manageable for me. Less risk of the line being pulled out and less risk of infection. I am still not "Better" yet and never will be but, i feel better and I am still here. That is all that matters to me. There are a few things I won't be able to do anymore, bath, hot tub, sauna, swimming etc. but, that's small compared to being alive and annoying my loved ones for another day=D Thank you for taking the time to read my first blog. I will update it regularly when I feel the need to express my sarcasm or vent. i promise the next ones wont be as long..well, I can try to promise.