New to this site- Hello and my story
I was diagnosed with Hodgkins Lymphoma back in April of this year 2012. I am a single 30year woman who lives in Austin, texas Back pain, 103.5 fever took me to the emergency room. I had a kidney infection. At least that's what the er doctor told me. I knew something was not right. I had never had a kidney infection and I could still feel heat radiating from my right side. He felt comfortable sending me home after 3 liters of fluids and IV antibiotics. My temp was down to 102.7. I told him I was not leaving without an ultrasound or CT scan. He laughed and said those tests would be unnecessary. A few minuets later the nurse came in to discharge me. I looked at her and said again I am not leaving without a ct scan or ultrasound. She left the room, not happy.
Finally a nurse came in and wheeled me into the CT room. After the CT scan and still on the table, I heard them call for the radiologist stat.Then the doctor came back in and said that I had 2 stones blocking my ureter and 4 other stones in my kidney. He said they called an ambulance because the hospital I was at did not have a urologist. The ambulance came to pick me up quick. I arrived at one of the major hospitals here in Austin. I was wheeled into my room by the paramedics. I knew this was serious, and I would require emergency surgery to unblock my ureter. I called my boyfriend, sisters and then was taken to surgery.
When I was recovered and alert I was taken to my room where my sister was. I gave my key to her and told her to go stay at my place and take care of Ellie, my dog. That night I did not do well, I was tachycardic, with a resting heart rate of around 140bpm. My fever returned. My poor nurse thought I was in pain so she pumped me full of every pain med know to man I think. Finally around 4am, she said that if my heart rate did not go down in 10 minuets, she would call in the doctor. I could barely speak, I was so messed up on morphine. I knew I was hypovolemic. I needed more IV fluids and oxygen. The doc came in and did an ecg. Normal. He increased my fluids and put me on a nasal cannula. He actually listened to my chest as well. When he sat me up, I did this deep almost in my chakra cough. He asked how long it had been going on. I told him I had been to the other ER twice in the last 8 weeks for back pain and they had given me muscle relaxers. I had been sleeping a lot and thought stuff had been settling in my chest. I would cough when I woke up. But, once I got up and going the cough would go away. I asked him for a chest radio-graph, just to make sure I did not have walking pneumonia or something like that. They wheeled in the radiograph unit, and took my chest rad. With the increased fluids and oxygen my heart rate went down to 80bpm. I was asleep, finally.
My sister and nephews came to get me as I was going to be released from the hospital. I had a stint in my ureter, my kidney and stones were infected. So I would need another surgery later on to lazer the stones and remove the stint. I felt much better even only on a few hours of sleep. Again, the nurse came in and said that she would be back with my discharge papers. I asked her about that chest rad.?.? She looked at me kind of confused and said she would be back. When she did she said there was an emergency CT scan that had been ordered of my chest, but had been lost in shift change aka "the matrix." Awesome. Sooo... She called an orderly to take me down for yet again another CT scan. Again, I heard them call for the radiologist before I was off the table. Uh oh. Not good. Whats this about?
I go back up to my hospital room and then the phone rings... My nephews and I were looking for it everywhere. I pick up the phone and on the other end is my urologist. He tells me that I most likely have cancer and they will be running more tests, I am not leaving the hospital. He tells me that my oncologist will be in touch that same day.
I am thinking what, cancer? Oncologist? Complete breakdown. My sister looks at my not understanding a word because I am crying so hard. I had no idea what I was in for, but I knew it was not good. I lost my mother to cancer at 18yrs old.
I was in the hospital for 2 weeks. Bone marrow aspirate, lymph node biopsy above my collar bone, midline IV catheter placed, tons of blood work and then my power port was placed and I was moved to the oncology floor. It was then that my oncologist told me that, yes I do have hodgkins lymphoma stage 4. It was in my mediastinum, collar bone areas, arm pits and lower neck. I asked if I would loose my hair? yes Would I be able to have children? No most likely not. I had my first round of ABVD chemo in the hospital.
I have had ABVD chem twice monthly since then. I had another CT scan a few weeks ago showing good progress.
Lungs- Improved, Stable 2-3mm sub-pleural opacities in the right lung, likely post inflammatory
Mediastinum- heart and vessels within norma limits Left chest port with tip at the cavatrial junction
Lymph Nodes- Interval decrease in size and number of discrete confluent lymphadenopathy in bilateral posterior cervical spaces, superclavical, mediastinal and left subpectoral/ axillary regions
Left Axillary 8x7mm, previously 15x14mm
Left prevascular 29x16mm , previously 36x26mm
Right prevascular 27x12mm, previously 42x23mm
No pleural effusion, mass or pneumothorax is noted
So, here I am 4 months later. I am lucky that everything worked out the way it did. So fast. But it's not over. I have become increasingly more depressed. My boyfriend is very supportive, I am lucky to have him. I cry almost every day. I want this to be over.
There you have it my story so far, well the short hand of course.
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