Lungs for Mandy

I often feel like I am climbing Mt Everest. Just when I am about to hit the top an avalanche develops, hits me and knocks me back to the start. That process has been typical through my life.

Yesterday I was given the news that a few of the biopsies taken from my scalp are indeed skin cancer. Luckily, they’re not melanoma but they’re also not benign. They’re catagorized as squamous cells, a mid-grade type of skin cancer that is not typically deadly…..for people with a properly functioning immune system. My case causes more concern since I’m immune supressed. The transplant team doesn’t seem to be overly concerned because skin cancer is common in the special group of us, transplant patients.

I’m not getting overly freaked out because I haven’t seen the specialist yet therefore I don’t know what to expect except surgery to remove the spots. The situation shows me that I should never get to cocky because something tends to push me back to reality that I will never, ever be one of those “normal” people. Wait do I want to be normal????

I’ve often been asked…Amanda how do you take so many pills at one time? My talent for taking pills has developed from years of practice.  I will share some tips that I have used over the years to help those of you who need the help. You know who I am talking to, the people that have problems taking a newly prescribed antibiotic with their daily vitamin. I’m making fun, but only because I have so few talents that I am going to work my perfection of taking pills. (Just let me go with it. okay?) 

How to take two or more pills

1.) I understand that the bottle says that the pill should be taken with water. Each pill needs to be evaluated to discover the best method. I believe liquid, gel - type medication can be taken with water without incident. However, white chalky pills should be taken with something that has some flavor.

Example: If I am taking  a Advil Liqui gel, water will be the way to go. However, if I am taking say, a Vicodin. Milk or juice is the way to go. The reason: Vicodin is white and looks like a piece of chalk. Chalk = melted chalk in your mouth if not swallowed properly. Therefore, something with flavor can eliminate that bad taste. (I am not endorsing drug use, I am simply using my own medication regiment as an example. Any prescription medication should be taken under the supervision of a physician. No prescription sharing… no matter how bad your insurance company is screwing you by not covering medication that may benefit your health. I’ll stop there because that is an entirely different story.)

2.) Now that you have decided on the proper beverage method gather everything you need in an area where you take you medication everyday. I find that keeping everything together, (except the glass of milk due to spoiling) in the same area helps remind you to take those pills. I keep my medication near the coffee machine so when I wake in the morning, it is right there looking at me. However, I still get off schedule sometimes. It is okay - missing one round of medication is not going to kill. Well, I don’t think so.???Remember that even though my mediation taking skills are excellent……. but I’m my only patient.

3.) Take a lookey-look to make sure you are taking the correct medication. In my case I look in the little bin to make sure I have the right amount of important medication such Prograf (4mg am and 3mg pm) It is always important to make sure so you don’t overdose your self and end up puking the day away. Yes, that has happened to me. Now you are ready!

4.) Take a drink of the beverage to get your mouth wet. When you are ready…I know it is a bit step, but you’ll make it, put the medication in your mouth, near the center is best. Don’t throw them way back there otherwise you are going to choke yourself to death over an antibiotic that you only needed for a tiny cough. 

5.) Relax your throat or a better explanation is allow your throat to open.

6.) Immediately take a big drink of the beverage and there you go or should I say, there they go! If it was a chalky white pill you were taking and you begin to get a bad taste in your mouth, take more drinks. If it doesn’t subside, eat a cracker. Crackers are the best way to move the process along the way and elimate the taste.

7.) I understand that this wasn’t easy for you, but with proper practice you can be just like me. You’ll have ability to take up to twenty pills at one time without incident except coffee spillage on your white shirt at 10 am when you have an entire day ahead of you.

Good Luck!

I feel so fortunate to have weekends like last weekend. Sometimes it seems as if I never had health issues and other times I can not think of anything but those times in my life when I couldn’t leave my bed because I was so short of breathe.

Last weekend was spent doing the things that I really love doing. Friday I spent several hours at my parents, just relaxing and eating. Saturday: Yoga. Saturday night spending time with my aunts and cousins. Yesterday was spent enjoying the outdoors.

Saturday night was my second cousin Courtney’s 18th birthday. To celebrate, my 1st cousin Jenny and husband Mike had a great gathering at Annie Gunn’s (yum). Okay the food was delicious but the time spent with family is really the main point. There is rarely a time when a majority of us can get together to have good laughs or in some cases, tears. My Mom has five sisters and one brother (Jay who?). Each of my five aunts has two or more children and in many cases their children have children. Imagine how many people are involved in the family. Keeping up with everyone is no easy task so when we do get together we are all just chatting away, mayhem I tell you! I love it though and hope that we can all spend that kind of time together more frequently.

Yesterday we went to Lone Elk park in Valley Park. I can’t believe this park is so close to my house yet I hadn’t been there. I am glad we decided to go there because it’s a great place especially with the fall colors emerging. The park has a lot to offer whether or not you like to hike or not. We spent most of the day walking and hiking around admiring the landscape. The signs throughout the park indicated that is was elk mating season all visitors should be careful. While in desolate areas,  I had visions of elk approaching me at high speed, knocking me down. Luckily it didn’t happen that way and actually we didn’t see one elk. But I petered out early into the three-mile hike because we had already walked around so much. I guess I made it about a half of mile into the hike and then another half mile on the return. The terrain was pretty intense for me, but I have promised myself that I will attempt the hike one more time before below zero temps arrive. I took some great photos of the scenery and will share them as soon as they are developed. Yes, I took photos with film! People seemed so surprised that film is still actually used.  When I went to buy film it was virtually impossible to find what I needed.

We finally left the park around 5 o’clock. When you exit Lone Elk park you can either take the short cut out or leave through the bison area - I decided to leave through the bison area. I guess 5 is time for the bison to come out to eat and block traffic. As we got closer many of them were grazing near the road and a few were standing in the road. We were finally eye to eye with them and they are really endearing creatures. So big, yet so calm as long as people stay in their cars. A mother bison brought her babies down to graze and they were the cutest things. It seemed as if she were showing off her new offspring like a human mother would do.

All in all it was one of those weekends in which I actually enjoyed living. I have been given the chance time and time again, therefore,  I need to enjoy it! I need to make up for those days, weeks and years that I have spent in bed because I could enjoy nothing but watching TV. To make up for those times when I was so sick I couldn’t eat because I was nauseous or just could not breathe. I suppose that there IS a plan for all of us and figuring it out may seem frustrating but the steps are a lot of fun. To conclude, I suppose this past weekend was “one of those steps”.

I decided that since next semester day classes are the way to go that I would register for disability services. The reason: disability related absences. All of my doctor’s appointments are during the day and I will miss class occasionally. Registering with the disability office will allow me to miss class as an excused absence without being dropped from a class.

Well, the woman I met with was quite a character. Most of the time that we spoke she kept her eyes closed typing on her computer slightly moving her head up and down as if she were listening to music. I don’t know about you, but when I am spilling my guts I tend to appreciate eye contact. When she did open her eyes and speak the questions just streamed out…..How did you do it?, I bet your parents were just devastated., What are your mental limitations?, You are so strong, It’s hard to believe that they could fix your problem twice., I didn’t know that they could transplant lungs. I really couldn’t believe that this educated counselor was acting this way. I wanted to get to the subject at hand and she continued with her disconnectedness.

What an uncomfortable experience!!! Luckily, I made it through the appointment without punching the woman and it is all done and over with. I never mind sharing my story, but come on act like you’re interested.

I would like to thank Patty S.for loaning me Sick Girls Speaks. She brought it to the Lung Walk because she thought I would like it — she was right! I just started it last night and I am already half-way through the book.

Wait, wait, wait first I have to say how wonderful Patty looked Saturday —–I’m not sure if you remember her story, but she is from Nebraska here with her husband Ed. Patty had her transplant a few months ago and seems to be doing very well. Both Patty and Ed are two of the sweetest people I have met.

So, Patty loaned me this book that appears to be stolen stories from my own life and I am demanding a cut of the profits from Sick Girl Speaks. Teasing. The book if filled with stories of Ms. Christensen’s life living with Cystic Fibrosis and two lung transplants. Plus tips on getting the proper medical treatment we all deserve. CF or not we all have to advocate for our own health.

From Sick Girl Speaks by Tiffany Christensen.

When referring to chronic rejection and being listed for a second transplant.                    Just when I was finding my place in this life, I was dying again.     

 Grief is not a linear process and I exprienced  denial, sadness, bargaining and acceptance in many different shapes and forms.

Her thought after surgery an old saying: To whom much is given, much is expected.

Upon being diagnosed with CF. In 1973, the year I came into into this body, the life expectancy for a person with CF was 8 years old. As medicine advanced, I seemed to stay right behind the number. When I was 8, the number was twelve, the number 21 and so forth.