Lungs for Mandy

Photo take 5-16-2009 at the Cystic Fibrosis Great Strides Walk. I am not sure who created the signs for the event. It was so touching to me that I snapped a photo! (There is a puppy’s booty is in the photo though–that was not the touching part)If

If you are interested in getting me a birthday gift….PLEASE just sign your organ donor card or talk opening to others about transplantation!

Your decision affects hundreds of lives. Really! www.organdonor.gov/donor/index.htm

If you are interested in assisting lung tranplant patients in the St Louis area please visit http://www.2ndwind.org/Donate/index.html Organ transplant patients are usually required to have insurance prior to an organ transplant, however in many cases additional medical equipment and services are not covered by insurance. We all hear the horror stories about insurance companies….those controversies often occur to cancer patients and transplant patients frequently.

P.S. If you don’t quite get the above photo….Ladue is a very upscale neighborhood in St Louis. Houses are typically pretty expensive and very lovely.

FYI: I could have bought two houses in Ladue, but I am happy I had two transplants instead; a house is no good without lungs to breathe with!!!!!!!!!!!!!!  

Hello there.

Wow the weather here has been horrible. Every morning this week, we have woken up to really intense rain. It’s so yucky! I hope the weather gets better before my birthday on Weds, but the forecast looks grim.

All is well though. My IV was removed last Thursday (applause please) and I have been running around like a crazy woman since. I hate feeling so stuck with an IV, but I suppose it is better than being locked up in the hospital. I went to my parent’s lake condo Friday night and we had a really nice time. It was nice to spend some time with them alone. We rarely do that! Dad and I went yard-saleing Saturday morning. It was a blast. I found two little plant stands for my balcony which is exactly what I was looking for! Unfortunately for Mom, Dad also found something. It’s a Spanish Matador statue which my Dad decided to place in front of their condo. Mom was NOT happy since it doesn’t match with their lighthouse theme. I wouldn’t doubt if that statue “accidentally” gets broken.

It was a really nice Friday and Saturday. I realized that I really want to spend sometime down there this summer. It is so peaceful! Creagle also had a blast!

Saturday night I spent babysitting my nephews and niece. I hate how fast they are growing up. I wish I could hit the rewind button. Alex is really a teenager! He is already talking about the car he wants to buy when he is 16. I guess kids just do that. I was never really into cars except that convertible Cabriolet VW.

All it was a wonderful weekend. I am really looking forward to next weeked!

Take it easy

This Saturday is going well so far. I mean, I just woke up and it’s 10am. What more can I ask for? I rarely sleep in on Saturdays, but my week has been real busy.

I went to the Cardinals game Thursday night with the Amy’s and Cindy! We had a blast. The Cardinals won which was a bit disappointing! Don’t know if you knew this, but Amanda is not a Cardinal fan. Yes you heard it right, I live in St Louis, but I am not a Cardinal fan. I typically root for any other team so the Cubs or Dodgers can move up in the ranks. After years of watching the Cubs with Scott and naming our dog Sosa, I became a fan! I truly like the Cubs and hope that they win the World Series this year. My choice creates some funny conversations with my neighbor Adam who is die-hard Cardinal fan. When the Cubs and Cardinals play again, I would really like to paint his dog Sophie’s nails cubbie blue! Hey the Cubbie blue nail polish will also signify Dodger Blue..? Double!

I am feeling well. The IV is really interfering with my social life, but otherwise is hasn’t been a big deal plus it comes out Thursday. I’ll be spending a lot of time at the hospital Thursday and Friday — Thursday I see the dermatologist and hopefully get the IV out and Friday I am having a liver scan because one of my liver enzymes is elevated. It shouldn’t be  a big deal though. Let’s hope.

So, I am now going to continue my favorite day again. I’m heading out for complete some errands which include the Farmer’s Market. I am going a little late today. Hopefully they still have those smoked bones Creagle likes –I wish they weren’t so heavy because I know Sosa would LOVE one! My evening is going to consist of watching my favorite movie, Breakfast and Tiffany’s and a new one Role Models! I need to take it easy for a bit…school starts up again on Tuesday.

Oh last but definitely not least my birthday is in exactly 12 days!!!!

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