Tuesday, March 31, 2009

Today we went to Boston to meet with Dr Hasselgren at Beth Israel Hospital.  He was very nice and very thorough.  He answered all our questions and was very reassuring!  Adrenal surgeries are very rare in general...out of the 450 endocrine related surgeries he does per year...15-20 are adrenalectomies.  Of those 15-20, only 2-3 are pheochromocytoma.  Those are good numbers based on our research, even though these numbers are small.

He has a specific team of doctors he works with on these cases and is very familiar with the special needs of preparing for this type of tumor removal!

If all goes well I will be in the hopital for 3-4 days  I will either remain in the recovery room or go to ICU overnight.

Monday, March 30, 2009

Jess made the JV softball team...go Jess.  Our spring is going to be very very busy!!!

Tomorrow we head to Boston to see the surgeon and will hopefully have a timeframe if not an actual date set for the surgery.  The past few days have been good ones.  I have been up around more like myself...but still get very tired!  My sister Melissa was here for a long weekend.  It was great to have here...we went shopping and got my nails done...she wouldn't get hers done...next time!  She helped out a ton around the house too!   She will be back when I have my surgery to take care of the kids for us.  Rob will stay in Boston.  Fortunately his dad's cousin lives 2 miles from the hospital!  Very convenient!  

Tuesday, March 24, 2009

What else happens at the Graff house?  We have a lot happening around here right now.  Jess our 14 year old daughter is trying out for her high school softball team.  She has been playing on the rec league for a few years and is very excited about the possibility of playing for the high school.  The tryouts have been much more intense than she expected but she is hanging tough and pushing through.  She also plays the flute and is preparing for an audition for summer music camp as well as a piece she will play along with for  the high school choir at church.  She is doing great at school and we are so proud of her.  She is a very hard worker, but she is still a teenager!
She is very proud of the fact that she is 3 inches taller than her mother :)

"I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn their darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them."  Isaiah 42:16

Sunday, March 22, 2009

I have been having difficulty sleeping at night.  Last night was my first good night's sleep in several days...6 hours uninterrupted.  I felt good enough this morning to get up and help get the kids ready for church.  My energy level is extremely low, so this was a big deal...especially for the kids!  This evening we will be headed out for my son's Cub Scout Awards Ceremony.  I am conserving my energy today for him!

We have also decided that I will not be staying in Manchester for the surgery.  We will be meeting with a surgeon down in Boston on the 31st, if not sooner.  He specializes in Endocrine Surgery...he is the director of that dept. and he is also a researcher and professor at Harvard Med School!  My endocrinologist did not even blind an eye at our request to go to Boston and immediately suggested this particular surgeon.

Saturday, March 21, 2009

After being admitted to the hospital, I was being aggressively treated for high blood pressure.  After being placed on a cardiac monitor, my heart rate was found to be elevated slightly at rest.  However, as soon as I got up from the bed my heart rate shot up from the 90-100 range to the 140-150 range.  On Wed, the morning after being admitted, the doctor came in to see me.  He ordered a lot of tests, medication, and had a neurologist come to see me as well...a different neurologist :)
I was in the hospital from March 10th to the 16th.  The critical tests that were done required a 24 hour collection period and were send out tests to the Mayo Clinic in MN.  During this time my heartrate continued to fluctuate as did my blood pressure.  During this time an endocrinologist was also sent to see me.  He talked to us in great deal about this pheochromocytoma, a rare type of tumor that forms in the adrenal gland.  The adrenal gland is responsible for regulating blood pressure and it secretes the hormones epinephrine and norepinephrine.  He was quite certain that this was what we were dealing with based on my medical history and symptoms. I had been experiencing anxiety and feelings of depression for about 6 months, tremors (shaky hands),sweats (hot flashes), headaches, and borderline hypertension.  I also have a genetic condition called Neurofibromatosis Type 1 (NF), a predisposing condition to pheo, as well as I had also had two surgeries in the past 6 months...anesthesia can trigger a pheo to react.  

The test results came back positive (normal ranges were below 500, mine were over 6000) and an MRA of the abdomen was ordered to find the location of the tumor.  The tumor was found to be in the left adrenal gland.

I met briefly with a surgeon before discharge on Mon night, as surgery is the only treatment for this type of tumor.
90% are benign with an increased chance of being benign because of the NF.  I was started on medications called Cardura and Labatelol for blood pressure and heart rate control.  I will continue on these meds until surgery.  They will switch me from Cardura to a more potent drug  specific for pheo about 2 weeks prior to surgery.  I am monitoring my blood pressure multiple times a day.  The meds make me feel very tired and weak.  My activity is restricted so as not to stress my body...my job is to "take it easy, and rest."  My doctor is gradually increasing the Cardura (BP med)...I started with 1mg/day and am now up to 5mg/day in divided doses.

This all began on Tuesday, March 3rd. We had just returned from an amazing 10 day vacation in Florida on Sat. night. Tues morning I was getting ready to head out to an appt and Rob was on his way to the airport to catch a flight to Kansas City. As I was shutting down my computer to headout, I had an acute onset of an extremely painful headache, one like I have never experienced. As a migraine sufferer I know headaches, and this was no migraine. My vision was blurry, I was disoriented, short of breath, and vomiting. My head felt as if someone had placed it in a vice grip and was constantly turning it while someone else was whacking me with a 2 x 4. It was the most painful experience I have ever had. I managed to get to a phone and called Rob. He called 911 and came immediately back home. He had been gone barely 10 minutes when this started. My blood pressure was elevated when the paramedics arrived. They took me to the hospital and did a bunch of tests. They treated me with morphine for the pain. They also did a CT of the head and a lumbar puncture to rule out an aneurysm or meningitis. All my tests came back negative and they sent me home with pain medicine and instructions to follow up with a neurologist. On Wednesday we called to make the appropriate follow up appts with my pcp and neurologist. I was still having horrible pain, but not as bad as the day before. The headaches became more positional, which as a nurse, led me to think I had now developed a spinal headache on top of the existing headache. We saw my PCP on Thurs for follow-up, who ordered an MRI/MRA of the brain. My blood pressure was within an acceptable range, and he too felt I had developed a spinal headache. He set me up to have an Epidural blood patch the next day. So on Friday, we went in for the blood patch, which did not work. That afternoon we saw the neurologist. He felt very strongly that this was probably a new type of migraine. He started me on Elavil and gave me more pain meds. We were to follow up with him again on Mon. Friday evening I had the MRI/MRA. The weekend came and I continued to feel horrible. I had been in bed all this time, not able to function normally. Rob was home taking care of me and the kids all week. OVer the weekend my headaches got worse, and I had at least 3 episodes very similar to the first one on Tues. Monday came and we went back to see the neurologist. We questioned him on his thought process and again he very strongly felt it was migraine. He did order a CTA with venous studies of the brain to look for clots as a precaution. He increased the Elavil and started me on Prednisone, appropriate treatment for severe migraine. I felt and looked horrible that day. The headaches were still positional, and so, he went ahead an ordered a repeat blood patch, as sometimes two are necessary. Tuesday (now one week later since the initial attack), I woke up and actually felt better than I had in a week. The pain was much better! Rob called to let the neurologist to let him know that I was better, and did we still need to head to the hospital. He encouraged us to go ahead and let the anesthesiologist make the call as to whether or not the blood patch should be repeated. On the way to the hospital I started to have another episode. By the time I got to surgery dept, I was in another full blown attack...worse than the initial one. At some point in time, and this is where it gets fuzzy for me, my BP was 234/130. The blood patch was repeated, and they were treating my blood pressure with IV medication. I had now bought myself an admission to the CICU. (This just happens to be the floor where I had worked for 2 1/2 years).