My Stay At Thomas Jefferson University Hospital

View from my room.

View from my room.

As I’m sure most of you already know, I have been hospitalized at Thomas Jefferson University Hospital in Philadelphia since Tuesday, 8/5/14.  I’d love to tell you my exact diagnosis but I don’t believe anyone knows for sure exactly what it is!  I do know that there is an infection in my foot that has caused quite a stir, but the cause and reason behind my other ailments is still a mystery.  I’ll try to give just the facts to keep you all up-to-date without becoming too bored.

I woke up two weeks ago on a Monday to a sore throat and indigestion.  Two days later I went to an Urgent Care to be tested for strep throat because I had noticed a white spot in my mouth.  The rapid strep throat came back negative, but I was put on an antibiotic and sent on my way.  Also that day, I began to feel a pain in my left foot.  The pain was only in the tip of my toe but it was noticeable.  By that Friday, my mouth was full of sores and I was walking with a limp.  I could only eat soup and yogurt and drink just water.  The mouth pain was pretty severe. My eyes were also bloodshot and I had a pain in my left shoulder.

yep, I really did just post a pic of my swollen foot.  Monday, 8/4/14.

yep, I really did just post a pic of my swollen foot. Monday, 8/4/14.

Suspecting my Imbruvica to be the culprit, I spoke with the nurse at my oncologist’s office and she asked me to come in that same day.  My body temperature was around 99.5 degrees.  I was instructed to stop the chemo, begin a mouth rinse for the pain and go to the ER if my temperature rose above 101.4.  Two days later (Sunday), I was in the emergency room at Nazareth Hospital when I awoke with a temperature over 101.

I was triaged almost immediately.  The nurse accessed my port and took 9 vials of blood.  I had a chest x-ray and an ultrasound of my leg to rule out a blood clot in my foot.  When the results came back negative, I was sent home almost 3 hours after I arrived.  I remember being confused about why they didn’t admit me.  I had a fever, red eyes, visible mouth sores, a swollen, painful foot and an irritated shoulder.  Both Shelby and I asked that the ER doctor confer with an oncologist before we left, but he said there wasn’t one available.

Having an oncologist appointment 2 days later, Shelby and I were hoping to talk about when I could begin taking the Imbruvica again.  Instead, Dr Zibelli saw the lab results from the ER and instructed I be admitted into Jefferson that day.  She even called in and set up a bed for me so that I could avoid the ER again.  According to the Nazareth reports, my blood cultures showed a bacterial infection in my blood.  I never should have been discharged from the emergency room.

The Atrium (view from my room)

The Atrium (view from my room)

Being admitted was super easy and I met with a team of doctors and students almost immediately.  Again, the concern was this infection in my foot.  They had a hard time accessing an IV line because I was so dehydrated from not drinking enough with the mouth sores, and were afraid to access my port just in case it was infected.  The third nurse to attempt the IV was finally able to find a vein in my wrist (ouch!).  They took major blood samples, set up a bag of saline, began giving me two antibiotics and gave me Oxycontin for the pain.

Can you guess what happened next?

I threw up violently, had diarrhea and felt major abdominal pain.  It wasn’t long after that I gave myself a full blown panic attack (I’ve never had one before but was told that’s what it was).  It took about two hours of focused breathing and morphine to settle down.  No more oxy for me! I had to apologize to Shelby afterwards for yelling at her during the panic attack.

I finally had an MRI on Thursday and saw the team from Infectious Disease (ID) on Friday.  This is where the story and situation gets somewhat confusing.  Up until this point, they were relying on the blood cultures from Nazareth because they take a few days to incubate and the results from Jefferson had not returned.  The ID doctor was curious because the infection was in my 4th toe and surrounding area. There had been no trauma to the foot nor was I punctured, stung or injected anywhere near that area.  How could I have a blood infection in the toe?  He called the lab at Nazareth, asked them a few questions, determined that their sample must have been contaminated, that my foot was not infected, and was willing to send me home the next day.  After he conferred with Dr. Zibelli, she told me that I would be seeing a rheumatologist the next day (Saturday) and would go home after.

During their rounds on Saturday, I saw the department resident and an oncologist that specializes in CLL.  He took one look at my foot, determined that it was infected, that I could NOT go home, that I would need more antibiotics in the hospital and as an outpatient.  He explained that because I have cancer, I need to be treated differently than if I was not sick.

Fun Fact #1:  The #1 killer for CLL patients is infection. (yikes)

Fun Fact #2:  Rheumatologists don’t work weekends.

So now, here I am – almost 2 weeks after the first symptom began!  The mouth sores

View of Center City from the hospital breezeway.

View of Center City from the hospital breezeway.

are gone and my eyes are almost back to normal. My foot is still swollen and sore, and my shoulder pain continues to plague me.  Also, my arms are lined with bruises from all of the blood draws and my stomach is scarred purple from injections. Hopefully, I will be discharged tomorrow and can receive at-home antibiotics.  I am now receiving a different antibiotic that is known to be useful in joint infections (if that is what I actually have).  The drug is easily tolerated and only takes 30 minutes to infuse.  I may have to fight to get the infusion either at home or close to home but I do not want to have to drive to Center City Philadelphia daily.  Eventually, I would like to get back to work!

Besides the confusion with my diagnosis, the stay here at TJUH has been as good as hospital stays go.  The nurses have been incredible!  Every one I have dealt with have been compassionate, hardworking and kind.  I am very grateful towards them and want to send my gratitude to all the nurses that read this blog.  You are the unsung heroes of the medical world.  Thank you, thank you, THANK YOU!

Fun Fact #3:  The food was actually pretty good!

Fun Fact #4:  The nurses monitor how much you urinate (you have to pee in a ‘hat’)

Fun Fact # 4 1/2:  I pee, on average, 16oz at a time.

Fun Fact # 4 3/4:  That number can double overnight.family and friends

I’d like to send a particular thank you to Shelby for being with me through this whole painful and confusing process.  She has been here daily with me, talked to my doctors and had to deal with the stressors of having a loved one in the hospital.  Also thank you to my big ‘brudder’ Chris, my ‘seester’-in-law Tracey, Shelby’s brother Michael, my cousin Shawn, Aunt Noreen and my parents for your visits.  They made otherwise boring days much more tolerable.

Also a big thank you for all of your Facebook well wishes, prayers and texts.  I’ve read every Facebook post even if I did not respond.  In case you are not aware, they all help.  Every comment and kind word helps with the doldrums of being hospitalized and the depression of sickness. So thank you to all of my friends, family and readers.  I love you all.

 

 

 

 

 

 

 

 

Category: My Fight

2 comments on “My Stay At Thomas Jefferson University Hospital

  1. Jenn: All I can say is OMG! You just can’t get a break no how! I am keeping you in my prayers and am wishing you a speedy recovery from this mysterious issue at hand. Keep your blog going and thanks for the laughs – your fun facts were all too cute!

    Terrie

    • Thanks Terrie. I have an appt with Dr Zibelli tomorrow. If I can, I’ll try and find you.

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