I'm going to start this and see how it goes. I have 5 wonderful children, 3 from my first marriage, Nikki, Phil and Mimi. Nikki is 18 and will graduate from high school this comming wednesday. Phil is 16 and typical teenage boy, and Mimi is 13, she is a handful, but I wouldn't trade her for the world. I also have 2 great babies. Lexie is almost 2 1/2 and she is my little angel. She's soo smart and soo funny, just a great joy to be around. Jordan is 13 months and he's mama's little man. Loves his hugs and his kisses. That's my background, life was great .... till this past April. Maybe by writing this out, it'll help me get past the feelings of desperation.
April 23, 2006, I was feeling like crap, so decided to go into the walk in clinic. The doctor listened to my chest and told me I had walking pneumonia, ordered a chest x-ray and prescribed me some anti-biotics. April 24th, went to work but was feeling progressively worse, could not walk any distance or stand for any length of time. Went to bed that night, and every time I would lay down I felt like I was drowning. Bout 2 am, I woke DH and had him bring me into the Emerg. I got there and told them that I had been dx with pneumonia but could not catch my breath and felt like I was drowning. Nurse took my pulse, b/p and temp. Temp was fine but BP was low and pulse was 142. She had me sit still a few minutes and took it again. BP still low and pulse still 130 something. Instead of the usual "Have a seat in the waiting room and we'll see you soon as we can" ... I got the "Come with me now" and DH got "You can see her in about a half hour, we are gonna get her set up" ... into the Emergant Care Centre I go, and set up into a room with 1 nurse per 2 patient care. Hooked up to monitors and blood work ordered.
Doc came in ... listened to my lungs and sent me for chest x-ray ... came back with evidence of pneumonia. Blood work came back with elevated WBC's so they were convinced was just pneumonia at this point, but could not explain why my heart rate was soo high. He decided to do more blood tests ... looking for the posibility of blood clot in my lungs. The D-Dimer test, if positive, is indicative of possible clot. Under 500 is negative, mine came back at 516, just barely positive, but still enough that the doc was not comfy sending me home without further testing. Off to CT I go for a dye contrast scan. 2 hours later, results come back no clot, but lungs do show a pulmonary effusion. Doc still can tell my why my heart is racing and tells me I don't actually have pneumonia, I have fluid in my lungs and he doesn't know why. He gives me 3 days of a diuretic, and says he's gonna set up a cardiology consult for me, but to follow up with my family doc in a few days.
Few days later, I see my family doc, and he's concerned that my heart rate is still high. He gave me some more diuretics as well as another antibiotic as my WBC's were still high, and wants to see me again in a week.
So... a week later, it's now May 11. My heart rate is still elevated, anywhere from 120 - 130, and the cardiology consult from the hospital has been scheduled for June 12. My family doc just isn't happy with this, as he's now convinced the problem wasn't with my lungs in the first place but with my heart. He wants me to see a cardiologist ASAP, and since I've been a patient of his over 20 years, he knows me quite well, he told me he was gonna see if he could pull in a favor for me. Now I'm only 37 at this time, and my doc is wanting me to see a cardiologist ASAP ... talk about scared.
Next day, May 12 (Mimi's 13th birthday), the cardiologist office calls me, they have an opening at 2 on Monday, the 15th, could I be there then. Talk about calling in a favor. Turns out this guy is not only one of the best in the city, he's also my family doc's own cardiologist, as well as a med school friend.
Monday comes and off to see this new guy. He listens to my symptoms, my history, and finally my heart. He tells me that what he suspects is 1 of 2 possibilities. 1 being that there is heart muscle damage, causing my heart to beat faster to be able to pump the blood throughout my body. 2 being a blod clot in my lungs ... even though none was seen a few weeks earlier doesn't necessarily mean there isn't one. He decides I need an echocardiogram and I'm not leaving the office till I see his tech to have one done.
Echo comes back and the news isn't good. I have what's called a Dialated Cardiomyopathy, with congestive heart failure and mitral valve regurgitation. He explains that this could be caused by several different things but we will probably never know the true cause. Could be a viral chest cold that attacked my heart, or could be a peripartum (postpartum) complication. He told me my ejection fraction is 20 % ... in a normal heart it's 50 - 60%, and that he wants me admitted to the hospital, NOW ... no time to go home and get ready.
Into the hospital I go, 4 days on different meds to try to make me feel better. He told me that I'll probably never come off the meds, but that we are gonna try to optimize my cardiac status.
That's where I'm at now, since comming out of the hospital, we are adjusting my dosages of my heart meds, trying to get things under control. I have been doing a lot of research since my diagnosis. I have found out that an ejection fraction under 20% puts you on the transplant list .. yikes. I have found out the survival rate for my diagnosis is not great. I have gone from wanting 1 more baby desperately, to wanting to live to raise the babies I do have. At this point I don't care if I ever have another baby, but my babies that I already have need me. I have spent many nights crying desperately over the loss my family would feel should anything happen to me. I would not be aware, as I was not aware of before I was put on this earth and I will not know when I leave, but it's those I leave behind that will suffer.
I think that's enough for now, having a hard time going on, will continue later.