"Would I believe you when you would say
Your hand will guide my every way?
Will I recieve the words you say
Every moment of every day?
Well I will walk by faith
even when I cannot see
Well because this broken road
prepares your will for me"
~Walk by Faith by Jeremy Camp
My last blog post ended with my first day of treatment for minimal rejection.
Day 2 of treatment. Take a look at my face. There was beginning to be a slight decrease in the chipmunk appearance. Hold on, because after these three days of massive IV infusions of steroids, I will return as the sister of Alvin, Simon, and Theodore.
Day 3, and the IV held all three days!
One good thing about having to be in Nashville on steroids is that you don't have to look far to find good food. After my treatment one day, we went to a place called the Butcher and Bee. If you go there, try the whipped feta with honey and green onions. They give you homemade pita with it. I don't even like feta cheese but this was DELISH!
They bring your bill in a book- customers write in the books. So cool!
The weekend after my rejection treatment, we had a girl's afternoon watching "Mama Mia" by the Jackson Theater Guild. Many of the actors/actresses were my colleagues at Union! They did a great job. We followed the show with a trip to Baskin Robbins.
The next weekend was graduation. I was so thankful once again to attend the festivities and to celebrate with our grads. All of the graduates in this picture are receiving doctoral degrees. Go nursing!
Graduation was on Saturday, and orientation for all incoming graduate nursing students was Monday. Orientation week is very chaotic, but I love it. I teach an Epidemiology course in the fall with doctoral students. We begin the class with a field trip to Elmwood cemetery in Memphis. The students read "The American Plague: The Untold Story of Yellow Fever, the Epidemic that Shaped our History," by Molly Caldwell Crosby. Ms. Crosby comes to Elmwood to talk to students and answer their questions, then sign their books. Afterwards, students see the graves of many of the martyrs and victims of Yellow Fever.
During all these wonderful events, I was having labs done quite frequently. For some reason, my potassium was rising. When your potassium is high, you get to take some yummy medicine called Kaexylate. If you have a medical person in your family, just ask them about the fun side effects- I won't mention them here. The bottle in the front is full of powder. I had to pour the powder in the bottle behind, and add water to the top. So it is pretty much like drinking sand. I ended up having to do this five different times.
I was also having some serious migraines. When you are post transplant, you cannot take ibuprofen, aleve, motrin, etc. My only choice was Tylenol, and that was not working. The transplant doctors ordered some sumatriptan (Imitrex) to see if that would help. The next time I had a headache, I eagerly took the sumatriptan, in hopes that it would do the trick. It did a trick, for sure. I ended up at the ER a few hours later with a terrible reaction.
To be honest, the labs draws, med changes, and headaches were not fun. The transplant team planned on discussing all this with me when I went back for my follow up bronchoscopy.
During the second week of August we had an overnight retreat with our leadership team in the College of Nursing. We worked, played, ate, laughed, and cried. I am so privileged to be a part of this team.
After the retreat, I was still having issues with my kidneys, potassium, headaches, etc. I was admitted to the hospital (just for two nights). The nurse who took care of me in the ER is a Union grad! Her name is Natalie Wilson. She is a great nurse.
They changed several of my medications, and I recieved some IV meds - and another dose of kaexylate (yay!) The nephrologist came to see me in the hospital.
The main anti-rejection drug, tacrolimus, was changed to cyclosporine. Tacrolimus made me shake and lose a large amount of my hair. A common side effect of cyclosporine is excessvie male pattern hair growth. So.....bald head, hairy face. Such glamour!
Here is my first bag of cyclosporin.
Why is the bag so large? Because cyclosporine has to stay in individual foil packets- that cannot be opened without breaking a sweat, I might add. Here is a picture of the packets- the large one is a 100 mg dose, the smaller ones are 25 mg. I have to take 125 every 12 hours so that is a large one and three small ones. When you do get the packet open, stand back! You will immediately notice the unmistakeable scent of skunk. I am not kidding.
I have been a nurse since 1985. I have seen many, many pills. I have NEVER seen one that is as large as cyclosporine 100mg. NEVER. The coin below is a quarter. Not a dime. Not a nickel. A quarter.
Walk by faith, not by sight (or smell).
Just two days after my discharge, I went back for my labs, pulmonary function tests, X-ray, and visit with Dr. Norfolk. My FEV1 was 94%- you might remember that last time it was 105%. Dr. Norfolk told me it was normal, but I really wanted that 105% again. Yes, I am THAT person.
I had my bronchoscopy that afternoon. This is my friend Shawnee, one of the best CRNAs I have ever met. She has been there for three of my bronchoscopies, including the first one. As you can see, the prednisone has made my face swell up like Violet Beauregarde in 'Willy Wonka and the Chocolate Factory," but let me explain why I also look like the Michelin man. The paper gown I have on is hooked to a wonderful gadget that blows warm air into it- it's called a Bair Hugger. They even give me the controls to it now so I can be as warm as I want.
My transplant coordinator Elizabeth called me two days later with the best news - the rejection was gone! Woo hoo! They told me it would happen, and they told me they would take care of it. It did, and they did. I will have to have another bronchoscopy in 6 weeks and then I can go back to the original schedule.
During this time, my grand dog Willie B had a mole removed from his eyelid. It was melanoma. My daughter is praying and thinking about options. Here is Willie B with his "cone of shame." We love our Willie B!
Henry is very worried about Willie- from a distance.
So through all of the fun times, and the not-so-fun times, we walk by faith. Pray that the family of my donor is strengnthed by their faith, and by the knowledge that their gift is making a difference.
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