Thursday, March 3, 2011

To hell and back, My Thymectomy...

Yes, it was the scariest hospital stay of my life, and I have had some doozies! I am battling a night of insomnia and thought my faithful readers deserved an update as to why it has be so long since I have posted.

WARNING - This is a long and graphic story but I think the help it may give others outweighs the disturbance it may cause so be warned before reading.

CONFESSION - I am too weak and tired to type this out so I am cut and pasting from my post in my MG support group, but the story doesn't change so here goes...

Thank you all for the well wishes. There were a few errors at the hospital
so I think my story is not the norm but I am an honest gal and hopefully my
story will help others avoid difficulty. With that said, I thought all my
bases were covered prior to surgery. I met with the neurologist and he sent
orders for IV mestinon during the procedure, 24 hours of ICU observation
following surgery, and a neuro and respiratory therapists following me for
the duration of my stay. Here is what really happened.

Day 1 - arrived at 5:30, took my last oral mestinon, spoke with the surgeon
and anesthesiologist and went to surgery at 7am. At 12 noon, I opened one
eye in ICU, the other would not open and I could not speak well at all, the
anesthesiologist and nurse were hovering over me very concerned and I
motioned for them to come close. I was able to get out "put mestinon under
tongue" before I lost the ability to speak. The nurse ran and came back in
a flash with the mestinon. 15 minutes later I could speak. They were
floored by how quickly I turned around. I asked about the IV mestinon and
the anesthesiologist said it wasn't in the orders....urgh!!!

Then they sent me to a regular recovery room on the heart center floor. My
pain was well managed through the epidural. Oh, I had the Da Vinci surgery
by the way.

Day 2 - Had a bad nurse who didn't come on time for my mestinon. The
second time this happened I was headed for crisis and again the mestinon had
to go under my toungue. I was pretty loopy from the pain meds and was
having a hard time assessing my own condition. When the PA from the
surgeon's office came in I inquired about pex and she didn't know what I was
talking about. I asked her to check with the surgeon. The rest of the
evening was uneventful. I even took a few walks. As far as the spirometer
(the breathing tube to keep the lungs healthy) they told me to do what I
could tolerate which was 2 inhales about 4 to 5 times a day.

Day 3 - Really feeling weak in my whole body. I saw the PA that morning and
said I am really concerned and would like to see a neuro. She said she
would relay this to the doctor. 4 hours later I sounded drunk and my eyes
were really going. I told my nurse I was getting very close to a full blown
crisis and something needed to be done.

She checked my chart and saw that the PA typed "pt looks stable, no signs of
weakness, no need to consult neuro" Well I started crying, terrified for my
life, the nurse was ticked, and so was my sister. My sister paged my neuro
at the University and the nurse paged my local neuro. My University neuro called my room and I told him what was going on. He was livid and took the hospital
neuro's phone number and said if he didn't speak with him w/in the hour I
would be airlifted to Ann Arbor.

Before I had the chance to hear back my throat closed off completely and I
could not swallow. They were suctioning my secretions while I communicated
on paper with one working hand and one barely open eye. They put a mestinon
under my tongue and 45 minutes later my throat opened, then the neuro ran in
the room. He was at the other hospital and could not believe how long it
took for someone to contact him. He brought the PA in and chastised her in
front of me. They brought respiratory in and my NIF (diaphragm strength) was 20 (one point above the protocol to ventilate). I also couldn't move my head at all.

The neuro said they were moving me to ICU and would start PEX asap. He said
if I went any further downhill I would be put into a coma and vented. When
I arrived at ICU they said my hemoglobin was 6 and that was too low for
PEX. I had a blood transfusion and they started IVIG.

Days 4 - 5 -
Stayed in ICU and NIF increased to 25, Hemoglobin rose to 9. Four more days
of IVIG scheduled.

Day 6 -
Moved to regular room, NIF at 30, Hemoglobin still 9. They ordered another

Day 7 -
Potassium low, had to drink potassium and developed thrush from the
antibiotics. Feeling much stronger but still 50% of the strength that I
entered the hospital with.

Day 8 -
All numbers normal, got to go home!!! Will have visiting nurses for a
month....boy am I tired!

The pain is getting better every day. My thymus was normal size but
abnormal pathology - Follicular hyperplasia...yeay!!! My neuro says this
gives me a better shot at remission and I will hold on to that hope.

All in all I am thankful I had the surgery but know my neuro was right in
recommending I have surgery at his hospital and not here where I live.

If you are still reading this, thank you!


  1. OH, Jen. I'm sitting here bawling so if there are many typos you will know why. I am so sorry you went through all that! My gosh! What hospital did you go to??? I will not go ANYWHERE but the U of M for anything more than a cold. You and I are too complicated for "normal" hospitals. I hope that PA gets FIRED. They could have killed you!
    Reading all that brought back so many memories of my hospital stay in 2000...I WAS sedated and vented, but I remember the not knowing, the blood transfusions...

    Other than the 2 neurologists there that told me it was all in my head, no one tried to kill me! Good grief. I am so thankful you are okay!

    Thank you for your sweet, wonderful words on my blog post. I appreciate it so much. There are many days I feel like I just can't keep going, and then someone as precious as you tells me that I inspire you. Thank you from the bottom of my heart, Jen. Honestly.
    Stay rested!!!
    Love you. Praying for a speedy recovery and REMISSION!!!!!!

  2. yup i've been tru the same thing as u said ^_^ but thank God there are still my family to hold on me and give me a support.....we just need to fight for it and never think about it to much....btw when were u do ur tymectomy actually?? this year????

  3. Ann Arbor is good place to be most times when in this condition. (used to live in Michigan...born and raised. now in FL). Your experience sounds harrowing, very touch-and-go. I count my blessings as my thymectomy went smoothly. Have excellent neuro and the hospital staff was trained by him in the aftercare of MG patients. All in all, I know you are glad to have this over with. Mine was in 2000 and though CT showed mild hyperplasia at the time, during surgery it was discovered that a thymoma was developing. I am doubly glad I had it done. Mine was transsternal. Had an epidural which immensely helped curb pain. ICU 25 hours, gen. room 4 days and then home. now maintain on 15 mg. q4h (warmer seasons). Have gotten by well on 15mg twice a day during out "winter" months.

    Thanks for sharing, Jen.

  4. Thank you so much for your support everyone. I am having a better week this week.

  5. Wow Jen what a horrific experience. I don't remember a whole lot about when I had my thymectomy but I know I was in the PICU (I was 15) for almost 2 days. I had to have 2 weeks of inpatient Plasma Pheresis before they could perform the surgery...I had a lung capacity of 20% when I was admitted. I am glad you are starting to feel better.

  6. Jen sorry to hear you had such a difficult time. Hope things improve soon. Sending good thoughts your way!