Lately…

Posting this from October 1:
It’s been awhile!

September was a busy month but I did have my annual checkup with my transplant/spleen surgeon. I had my CAT scan and tumor marker labs and I am tumor-free! Not a trace in sight! My liver is doing so well that we reduced my anti-rejection medications by 0.5mg. I got a clean bill of health, considering the grand scheme of things.

I had some migraine infusions throughout the summer and then found a neurologist who works mostly on headaches and migraines. She changed some meds and scheduled a procedure, so let’s see how that goes later on. I’m very hopeful about her. She is a Cleveland Clinic doctor, as all of mine are.

Now it’s October – my, how time flies! I’m currently at my second ketamine infusion. Ketamine is an anesthetic agent but studies have shown that it can have nerve pain-relieving qualities. At an appointment in September, my pain management doctor and I agreed we had exhausted all options. We have tried everyone and everything and I still live in pain. So she explained ketamine to me and told me we could to try it. I eagerly signed on.

Last week, I had a ketamine infusion and another today. I lay down and get an IV of ketamine with Versed (midazolam) to counteract its side effect of anxiety. It IS anesthesia so I do get dizzy and tired, so I mostly sleep and sometimes work on my phone/iPad when I’m not too dizzy to read. I find it helps if I close one eye. Things don’t blur and spin as much. ūüėČ But the great news is that these treatments seem to be effective so far. My doctor is highly regarded and esteemed, and I’d trust this one with anything. She says ketamine can be uneffective, or work for weeks to months. Hey, I’ll take whatever I can get! I’m very hopeful about this one. Pray for me, friends!

I came home and meant to post that for you all but of course, I was too tired and the iPad didn’t seem to want to sync with the iPhone or laptop.

Since then, more ketamine good news. ¬†I go back in 2 weeks for another, and I’m excited. ¬†It’s really taken the edge off of my pain which is SO. NICE. I am exited to see how the third one helps as they supposedly build on each other. ¬†The only downside is I need 2 days off each procedure. ¬†One for infusion day and the next for sleep-off-the-anesthesia day. ūüôā

I’ve been busy lately, especially trying school for the first time in over a year. ¬†I’ve added a Bachelors of Science in Public Health with a focus on Health Promotion & Education to my Nursing major, so I have extra work to do now! ¬†The good part is that all of the Public Health courses are online, so I can work on it while I’m trying to get the stamina to return to Nursing and clinicals. ¬†Please pray that I can get there by spring. ¬†Then I’ll graduate with two degrees and move on to whatever God has out there. ¬†Something I still have yet to learn. ūüôā

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. ¬†ūüėČ

xoxo
Amanda