Lungs for Mandy

Hello!

I apologize for my last post. I frequently mentioned suffering and would like to point out that I am in no way suffering. I’ve seen people suffer with medical stuff and that is not presently happening to me. This website is like my diary and there are many times that I write exactly what’s on my mind as if no one is reading. Well, people are reading and I should be a little more careful with the words I chose. With that being said, I am feeling better about things at this point. The IVs are going good even though they are inconvenient. I spend about an hour and a half twice a day hooked up to IV medications. The IV is pretty visible, but I’ve been wearing scarves which is not pleasant living in St Louis. I still don’t feel physically bad, but the docs say I have gunk in my lungs and I tend to listen to what they say. I’ll be getting the IV out on June 9th or 10th so the end is in sight.

Okay, on to the good stuff. I spent the morning at the Farmer’s Market which happens to be one of my favorite places to shop and people watch. Oh my…the people watching is amazing. There is always something going on!!!! Today I witnessed a little girl trying to explain Jesus to another little girl. Both girls were about 6 years old. Funny! There were about three couples walking out of the market with kittens. Must have been an adoption day–good for those kitties.

Once again the tide has turned and I am not as well as I once was..you know wayyy last week. I had a bronchoscopy last Friday and received the results yesterday. No rejection showed up on the initial report, but two “bugs did appear. After five years of having no CF bugs, I now have two of them. It is common for CF Transplant to carry Pseudemonous and a specific form of Staph. Neither are contagious, but will wreck havoc on me unless I follow the procedures. I am now following the procedure of an IV with two antibiotics.

The IV insertion went fine yesterday. I had a slight panic attack while waiting to get some pain medication, but the panic subsided once the medication was given to me. It’s so strange being in an operating room awake. You are physically there, but everyone just works around you without acknowledgement that you are a person. I suppose they are just doing there job, but I wish they could chat a little bit. It always seems that everyone in the o.r knows about me but I know nothing about them. It just makes it a little uncomfortable. I started to cry and the anesthesiologist stopped to console me right before I got the “good stuff” After that I was awake just not there. My mind was all over the place. Specifically my nephew Jake and Creagle. When I feel like I need to be happy, I just think of some of the things Jake says and I laugh inside. For example, Grandpa and Jake went to the store together. Gramps used his credit card and Jake was just fascinated that Grandpa Bob had the same last name. He made a really big deal about it and everyone around just chuckled. He is such a funny kid. I also had visions of Creagle running after rabbits while her ears were just flapping in the air. Also cute.

All in all things are good. I just have to get through two weeks of antibiotics and I am good to go. I often wonder what it would be like to be healthy. I envy people that say they have never had an IV or never spent the night in the hospital. It sometimes seems so unfair that some people spend the brunt of their life sick while others just go through live with no medical problems. I wish it could be spread evenly amongst the adults. No kids with cancer. Healthy kids and adults with minor illnesses! No more suffering for the adult who has already been given a crappy deck. Really no suffering! Although, if you read anything about Buddhism you’ll find they they believe life is suffering and the more you suffer now, the less you’ll suffer in your next lifetime. I’ll close by pointing out, my next lifetime should be pretty cool

Things have become very calm since the funeral. I am feeling better about all the sad happenings. The funeral for my Aunt Essie went fine. Everyone still seemed shocked about her death which is totally understandable. On a slightly different note, Mickey Carrol the last remaining munchkin from the Wizard of Oz was laid out in the parlor across the hall from my aunt. My cousin Candy couldn’t contain herself and coaxed my Dad into going to Mickey’s parlor. The next thing I knew, all of my cousins and other relatives were heading to Mickey’s parlor. Evidently, there were a pair of red ruby slippers with a photo of Judy Garland in the Mickey’s casket. I didn’t see them for myself, but several people reported the same story……

Oh, I forgot to mention my tumble down the stairs yesterday. I was trying to escape  the puppy we are watching and I fell down the stairs and busted the drywall below…with my head. High heals are for chumps!!!

Last but not least Scott emailed me yesterday to mention Mike and Ike whom I had forgotten. It was May 12, 2004 when I received my first gift of life in Los Angeles. That day seems so long ago and so far from my mind that I totally forgot! How could I forget such a wonderful day? I am so thankful that I received that set of lungs. I hate that I had to have a second transplant, but I am so fortunate to have Mike and Ike to guide me to my new set of un-named lungs. I feel great and I probably wouldn’t be here with out the lung support of Mike and Ike……and the candy is tasty too!!! Thank you Scott for reminding me!

Good Morning.

I hope you are doing well.

Things have been a little crazy lately and I’ve really had a hard time with it all.

It all began last Friday before my math exam. I was so tense about the test and couldn’t relax at all. When the test was given to me I froze….completely! Instead of deep breathing and meditating like I typically do, I cried. The more I looked at the test, the more tears  I shed. I went blank! Every page I turned I felt as if I was trying to read something in a  foreign language. I ended up scoring a 31% on the exam. I could expect that if I hadn’t studied, but I spent hours studying. There were many nights that I studied with the tutor until 9 o’clock at night. What a bummer—

Second, my Aunt Essie died Saturday at the age of 71. It may seem that she lived a long life and that’s just how life goes sometimes. Well, I disagree. Aunt Essie started a few years ago with shingles and suffered horribly!!!!! I’ve heard of tons of people with shingles, but I have never heard someone suffer as much as she did. She sort of got rid of the shingles, well they were controlled with medication. Fast forward to last week when she cut her hand on a door. Simple cut right? No. She cleaned her wound and everything seemed fine until she woke the next morning to a severely swollen hand. Later, Aunt Essie couldn’t be woken up and was taken to the hospital. Evidently she developed MRSA in her bloodstream. MRSA is a medication resistance staph infection. She was put into a medical comma and placed on a ventilator. She was surrounded by her family and friends as they basically watched her pass away. Eventually, Aunt Essie’s kidney and liver shut down and she passed away Friday night. I just don’t understand why people have to suffer so much just to eventually die — She was my Grandma’s youngest sister and was the exact replica of my Grandma. There were times I had a difficult time talking to Essie because she reminded me of my Grandma who I miss so much. Aunt Essie was such a sweet person and I will miss her so……….

The last thing I will talk about it my best friend’s mom. After weeks of headaches and dizzy spells J. finally went to the emergency room. Initial tests showed two to three brain tumors. The doctors wanted J. to go Barnes because of their expertise. Now J is sitting at Barnes waiting for a biopsy on two more tumors one found in her lung and I can’t remember the other place. Thoracic doctors are going to do a biopsy today and we are all hoping the tumors can be removed.. My friend is normally such a strong person and hearing her cry on the telephone to me this weekend almost destroyed me….I seem to always be the one that calls her crying and now the roles have been reversed. I only hope I can help her as much as she has helped me in the past.

You know how sometimes you just have to get things out. Well, that is what I am trying to do. Holding things in makes me crazy!! Thanks for listening. Please send warm wishes in the direction of the people I just mentioned. PLEASE!