Migraines

I’ve been fighting severe migraines for the past few months.  And I mean severe.

After three trips to the ER last week, I pulled some strings and got into the Cleveland Clinic Thursday morning to see a neurologist.  Dr. Appleby was a genius.  She took me seriously and worked with me to create a true treatment plan.

We added Neurontin/gabapentin, a medication used for all sorts of different pain, and we added Imitrex to take only when I have a migraine.  (I don’t find it works well.)

We also set up a regimen of IV infusion therapies to destroy the headache I’ve had for a few weeks, and an MRI is in the works for a few weeks.

In the ER, they gave me things like Benadryl+Reglan, Benadryl+Reglan+Toradol, and even Benadryl+Reglan+Torodol+solumedrol+magnesium (burns!!)+something else (I was asleep… thanks, IV Benadryl.)

Dr. Appleby said I need to have 5 consecutive days of 5 hour treatments which is impossible with my schedule, so we’re doing what we can.  During my first treatment, things were going well and I was resting with boyfriend by my side when they gave me the DHE – dihydroergotamine.  Within seconds, it was hard to breathe, and my chest tightened up unlike I’ve ever felt before.  The drug causes brain blood vessels to narrow, thus reducing migraine, but as a part of that, blood flow slows down everywhere else.  We were at Medina/Cleveland Clinic (not 100% Cleveland Clinic) and the nurse didn’t know how to handle it. I pretty much had to tell her to call my doctor and that this was a reaction from the DHE.  I then told her she needed to take my vital signs.  It’s not good when an IV medication is giving you chest pain and as a risk of heart attack and stroke and the nurse is just sitting and chatting at the desk.

Needless to say, we went to Hillcrest Hospital today for my second infusion.  The nurses Teresa and Jennifer were fantastic, and the infusion center was very nice.  Teresa was even able to get me a bed vs. an infusion chair because of my back.

We’ve revamped things and removed the DHE, this time replacing it with an injection of Imitrex (burnnnns!!) For those of you who suffer with migraines, here’s what I got today (all IV except Imitrex): 25mg Benedryl, 10mg Reglan, bolus of saline, dexamethasone (steroids – reduces inflammation), Keppra &/or levetiracetam (I fell asleep by the time the Reglan was infusing so I’m not positive on this one – both are seizure medications that work on migraines), 1 gm Magnesium Sulfate, and at the very end, 0.5mg of Imitrex injected subcutaneously (and let me tell you it was the most burning shot I’ve received in my life!!)

I go back Friday again, and I’m praying for relief.  Please join me in that.  If you have migraines, listen to me right now. be persistent.  Go to whoever it takes for your symptoms to be treated.  No one should have to live with migraines!!  No one should have to take migraine medications that give them rashes, hives, or cause weight gain, and no one should have to settle with “second best.”  It’s 2012 and someone can help you with modern medicine – some doctors just aren’t willing to take the risk.

Also, some of you may know that Haylie ingested approximately 1 days’ worth of my transplant pills last Sunday (9 days ago) and was on the edge of fatal doses.  I almost lost her, and watching her suffer like that – having no idea what the prognosis was going to be – was truly agonizing.  We rallied and prayed for my little fur ball, and God confirmed that he cares about even the smallest things.  My baby couldn’t keep her eyes open and had serotonin syndrome and was literally running in circles because she couldn’t walk straight.  They said the Prograf (immunosuppressant) was a major fear and it would take one week to see if she processed it okay.  Praise God, she did.

Haylie is now in the clear, and I want to thank all of you who prayed for her or would have if you had known about it.  It’s unbelievable how nothing in the world matters when your “baby” is sick.

So to all of you who live around here and like me, can you please just join my team already? We have a lot of participants but WE NEED YOUR HELP!!  Check out lots of information here: Team Race for Amanda and clear your calendar for Saturday, August 12.  If you want a unique, amazing (free) Race for Amanda tshirt, you need to register soon so I can get them designed and ordered.  This is going to be a huge day, an amazing family-friendly event, and you are not going to leave feeling disappointed.  I’ll get a video up soon to work on RECRUITMENT.  😉

xoxo
Amanda

Two days later…

It’s been 48 hours since I’ve been hanging out at the Cleveland Clinic.  They’ve given me huge amounts of antibiotics to prevent and treat the pneumonia.  We’re praying they can have me switched to 100% oral antibiotics soon so I don’t have to either 1) remain in the hospital just to get antibiotics in IV form, or 2) get an actual port inserted and have Home Care come to manage it and administer the antibiotics.

But rewind… the night when I arrived at the Clinic, the halls were empty – just like the night I walked in the doorways knowing I wouldn’t exit with my same liver.  It was such a happy time to catch up with previous nurses like Jackie, Kat, and Chrissy, as well as new (to me) nurses like Krystal and David.

That first night, I was up most of the night getting “admitted.”  Vitals, tests, Xrays, EKGs, assessment by the nurses, waiting on doctors to enter orders into the computer.

Then the past two days have been a lot of meetings with my doctors, a lot of new tests, and a lot of consulting going on.

We now know that my spleen is coming out by July.  Unfortunately, that’s because it’s absorbing all my extra white cells and platelets, as it’s done for all of my sick life. This is the only solution out there for the blood cell problems I’ve been suffering from for the last several months. This has to work.  Please pray with me that the right thing is able to be done.

And then there’s the pneumonia-antibiotic thing.   Please pray I can go to oral antibiotics (vs IV) by tomorrow so I can go home very soon!!

Lovve
Amanda 

Biopsy results – Part 1

This morning, I had my first liver biopsy in over a decade. It was pretty much as bad as I remembered it to be, but I got through it. I’m feeling tired from the versed, fentanyl, and zofran they gave me, and I have a massive headache from all the drugs, but that’s not the worst part. It feels like a needle is lodged deep into my side, and there’s stinging and pressure. Dr. Chuck, my interventive radiologist, said to expect it to be around for 2 days.

I had a terrible nurse for half of the day, but for the beginning and the end, I had a sweet nurse named Cheryl. She kept calling me her “little friend” and was so kind, gentle, and could definitely place a mean IV! 🙂 We later found out she shared our faith, and having a nurse like that is so special.  Cherly said she’d be praying for me and encouraged me by saying, despite my suffering, my story is touching so many lives. That makes it worth it.

I had a lot of pain and nausea after my twilight-sedated procedure. I actually remember the entire thing. Anyways, once they were sure I was good on the meds and the pain was better controlled, I went home and slept until about 5pm.

Then within an hour, Haylie somehow got into my room and found some chewing gum, and to make a long story short, I’m typing this from her vet’s office. Now we are relieved she’ll be okay, and we’re just waiting on her discharge.

It seems I’m going to sleep well tonight!

So as for results – the preliminary results of the biopsy showed NO REJECTION, only inflammatory changes which are nonspecific.  The bottom line is, from a rejection standpoint, there is nothing to worry about.

However, one more test is pending as they found a virus in my labs on Monday. Hopefully it will solve the elevated liver enzymes/fatigue issues, but until tomorrow, we will wait and see. If the virus is only in my blood, that’s one thing, but if it made it to my liver, there could be severe problems depending on the details.  My infectious disease doctor, who manages my immune system, started me on Valcyte, an antiviral, to start working on the virus, but everything could change tomorrow once we find out if it hit my liver or not, and if so, how badly.  And so we wait.

Another day over… hopefully a full lifetime to go.  🙂

The LORD is my light and my salvation; whom shall I fear?  The LORD is the strength of my life; of whom shall I be afraid? 

          Psalm 27.1

Love,
Amanda

Biopsy update

Hello sweet friends,

Just an update to say I just got out of the OR. The liver biopsy was very painful, and I’m now in the recovery room. I’m writing this as tears drop onto my iPad as I’m having a deep, sharp, pounding pain in my side. I’m still freaked out as I had twilight sedation, and I felt the while thing. Shots, tissue extractors, the whole bit. This has not been a good experience. Hopefully we (my transplant time and I) will get the results of my tissue samples by tomorrow so we can figure out where to go from here.

Also, my labs Monday indicated I have an inactive virus that can potentially harm my liver. Please continue your prayers. My nerves are so bad lately, I’m trying to resume school in January, and I’m honestly tired of all of this suffering.

Thank you for being here for me. Your emails, texts, comments, visits, cards, etc. give me so much hope.

Love,
Amanda