PuzzlePieces's Journal

So, I feel awfully alone in my little head. Understandably, no one else is in my head, so of course I'm gonna feel "awfully alone." It's just that I feel an emotional break-down coming that's long overdue...and there's no one in my life who I feel can understand the depths of my depression and misery over recent health issues (ie DVT and PE).  Being in social work, I live to help others. For a lot of people in my field, that means that we'd rather spend all our time and energy on others than ourselves. My new husband and my parents often refer to me as a martyr. Well, I've chosen this place as my location for me-time to try to put myself together again.

A couple months ago, I'd experienced foot pain and swelling. My doctor diagnosed me with plantar fasciatis and tendonitis. Over the following weeks, I experienced leg pain that would move up my leg--starting from my calf one week...then moving behind the knee...and eventually making its way into my thigh and groin area. My doctor felt all around my leg and said that he didn't feel any areas of clotting and stated that I "probably have arthritis" in my knee, hence the pain behind my knee. He obviously was wrong as the rest of my story will depict...

Over the couple weeks preceding my hospital stay, I had increasing shortness of breath. I thought I had a bad cold or possibly bronchitis. Because I was to be married 10/10, I tried to ignore all health issues and just tried to get by until I started my vacation on 10/3. Well, my body DID hold out until vacation started...but then it all broke down. On 10/3, I awoke in the night coughing and unable to catch my breath for over half an hour. I finally went back to sleep and awoke in the morning to use the bathroom. I sat on the toilet realizing that I could hardly breath sitting up and there were black spots in my vision...and the next thing I knew, I awoke on the bathroom floor drenched in sweat. Obviously I had passed out for some length of time. I got up from the floor and crawled to the telephone, taking breaks to catch my breath as best I could.

When the ambulance came, my blood pressure was 44/66, and I was drenched in sweat and gasping for air still. The ER doctors checked my D-dimer which they said was incredibly high. Chest Xray showed nothing but CT Chest showed 4 pulmonary emboli--1 in each lobe of each lung. I've heard the top right one blocked the largest artery which contributed mostly to my passing out/inability to breath. Later, an US showed that my left leg had "extensive deep-vein thrombosis."

Here I was, a week away from getting married, 28 years old, saying "what the crap is going on?!?!?!?" The next 6 days/nights in the hospital were a roller-coaster of emotions. I was happy that the ER was able to stabilize me; I was stressed trying to finish planning my 100+ person wedding from a hospital bed without my resources that were all at home;  I was freaked out about what had happened and didn't understand any of the diagnoses, treatments, prognoses. Unfortunately, my fiance and I had to cancel our honeymoon trip to the Smokey Mountains where we had booked a one-bedroom cabin with hot-tub. With that news, that was the only time I cried...my fairy tale wedding/honeymoon was being ruined...and screw the importance of my health!!!

I came to accept my fate about the honeymoon. The doctors did numerous blood tests to determine if there were genetic deficiencies since my uncle had been diagnosed with Proten C deficiency. They told me that, if any genetic deficiencies were identified, I would have to be on coumadin for life which would make child-bearing severely dangerous. None of the tests indicated any cause; the only risk factors I had were being on oral contraceptives and smoking cigarettes for 10 years.  And the emotional roller-coaster continued as the hospital took me off oral contraceptives and obviously wouldn't let me smoke. Here I was lying in a hospital bed in the ICU dealing with so much crap--no oral conraceptives to keep my hormones in check, no cigarettes to help me cope with my emotions, and having to carry the burdens that i may not make it out of the hospital in time to get married, i definately could NOT go on honeymoon, and I may not be able to have children without taking a GREAT risk of dying??? What fun!!!

All the while, my family and friends continually told me that I was lucky, that God saved me...did I even want to be saved?? This is a questions I've struggled to answer...and I'm still struggling. Anyway, so my vitals improved with louvinox and coumadin, and I was released from the hospital in the afternoon on 10/8. And despite not having much say in how things were done for the wedding, I did get married on 10/10!! Being married is incredible; I love my husband very much. He's a pastor, and I'm not very involved in my religious convictions. My husband tells me that God will take care of me. Part of me believes it. Yet, part of me is afraid and depressed and still wrapped up in all the emotions I didn't let myself feel while initially going through everything.

But who do you talk with about all this?? Family, friends, everyone just wants to make you see how great it is you're alive, how blessed you are for being given the chance to survive something like this. And as many of you know, every step you take makes you question if it could be a move toward another PE or even death. My INR levels are not regulated; I've stayed between 3 and 4 most days. My hematologist is re-running several genetic tests to try to determine a cause. I'm asking all the questions I can come up with. But I have no one to talk with about my emotional state. Plus I keep reading articles on DVT and PE which then make me have more questions and concerns. I don't know. I just hope this place can provide me more information on DVT and PE and most importantly allow me a place to vent my fears, frustrations, emotions so I can get off this roller-coaster and back on solid ground.