Lungs for Mandy

Hello. My 34th birthday is Friday. It seems insane that I am turning that old. Just kidding! It is, however, much older than anyone had planned for me and I am thrilled. Mom bought me Wicked tickets for my birthday and we were planning on attending the show on June 24th. Well, Dr Amazing wants me to have my stomach surgery sooner than I had anticipated. Coincidentally, the date has been written IN PENfor June 23rd, the date before the show. What a freakin’ bummer! We are trying to sell the tickets, but I pretty much think Mom is going to get ripped off on the whole thing since there are plenty of other tickets still available. Hopefully we can get them sold at a reasonable price on Craigslist or Ebay. It’s just WICKED! Anyway, if you know anyone, contact me.

Oh, I have forgotten to tell you all about Dr. Meyers (Amazing). He is the doctor that will be performing my stomach surgery. Can you believe someone is smart enough to do both lung and stomach surgery? When I visited him, I couldn’t stop thinking about how smart he is. Seriously! I wish I had 1/10 of his smarts. A friend of mine had his lung transplant performed by Dr Meyers and he really thinks he is a great doctor. I too received a nice feel from the doc too. So, the surgery will take place next Weds in the hospital, The actual surgery will be two hours and I will be there for another 23 hours unless something else occurs –let’s hope there is not an issue, I’ve done my time in the hospital for the year. I won’t be able to eat solid food for three weeks after the surgery, so I am bulking up this week for sure. I hope the 3 week time frame was an overestimate and I’ll really be eating tacos sooner.

I ended up taking a break from classes, not by choice, but because a financial aid staff member screwed up my paperwork and I missed the deadline to get into a late-starting summer class. Iwas anger at first but then the more I thought about it, the more it sounded good. I hope I will be able to travel after I’m healed from the surgery. I’m not going anywhere when I’m on a liquid diet unless I can have Pina Coladas. 

My nephew Jacob is doing well after his bout with Mono (poor kid). He should be fine by the end of next week, but I think he has to sit out the rest of the summer in baseball. I guess we should all be thankful that he made it through that ordeal okay.

I also wanted to mention the 28+ people who lost their lives in Arkansas. I feel really sad for all the families who were lost in the floods. I can’t imagine how scary that was for the victims. My thoughts are really with everyone involved in the whole ordeal and I hope with time, the hurt will dissipate.

Be Well.

Things continue to move forward like always. I had a doctor’s appointment last Weds and everything is going well. My lung function has increased to 71%- the doctors are quite surprised. I started going back to the gym and that always seems to help increase my lung function. The doctors say that the gym doesn’t help my lung function, but I know better. I recently changed gyms and I’m so glad I made the change. I’m now at the Y and I just get a better overall workout. I signed up yesterday for boot camp and a zumba class. I need to tape myself at the Zumba class because I have NO sense of rhythm and I bet it will be hilarious to watch.

I went to see a surgeon today. It’s a surgeon who works on the lung transplant team, but also stomach surgery. Apparently, I have acid reflux which can cause chronic rejection in a transplanted person’s lungs. I have to get stomach surgery in the next three weeks. It’s a real bummer, but it only makes sense since I’ve already had issues with rejection. The real, real, real bummer is that I’ll be on a liquid diet for three weeks…yes, three weeks. I suppose a positive spin on the whole thing is that I’ll lose a little weight..I guess! I’m trying to put a positive spin on the whole thing, but I haven’t really figured out the positives yet..we’ll except the health aspect of course. I’m sure in time the surgery will happen and I’ll be on my way to my regular life again.

It is hard sometimes to keep my head above water. I think I do a pretty good job at it, but I wonder when I’m just going to give up. I’m sure when I do give up it will be in the winter in the desperation of a major snow storm not during the summer. Summer is really a wonderful time..

Creagle is doing just fine as always. Last night I had to leave the bed because the brat was snoring and kicking. I believe she was having nightmares it’s okay though, I couldn’t sleep anyway and decided to get up for a bowl of cereal!

Unbelievable that it is June already. Grandpa Bob and Carla were in town last week and since it was G’Bob (as the grt grandkids call him) 80th birthday we haeld a surprise party for him. It was great to see almost the entire family aunts, cousins, uncles, nieces. brothers and in laws. It was held in a park in St Charles and we had quite a turnout being it was Memorial Day weekend. Uncle Harvey who has been the official picture taker for 50 years bought some great photos from the early 60’s of B’Bob when he had so much hair it could of been considered an Elvis “do”.

He and Carla departed for home a day early wanting to get back and get an extra day of rest. Amazing that Dad continues to be so active and enjoys life so much. He did get to see all of his sons and managed to stay with three of us during his stay. Hope you had a Happy Birthday Pop.

Since it’s June 1st yesterday afternoon we spent opening the pool. Sophia my fav granddaughter wanted to get in so bad and finally she got her wish. Her enjoyment only lasted about 5 minutes since the water was sooo cold. But she did get in for a few minutes.

Number one g’son Alex starts football conditioning today and it goes for 4 weeks prior to the start of practice. He’s getting so big and grown up. Only 3 more years and he’ll be driving. Of course he still likes hanging out with Grams and Gramps, hopefully that’ll continue for a while.

Jacob, who loves to be creative spent the afternoon rolling quarters, I didn’t have the heart to tell him that 40 quarters made a roll not 30 but we’ll get it straightened out. He wrote us the cutest note and it will be kept and given to him when he gets married or has a child of his own.

Amanda continues to progress and get stronger everyday. actually she goes this week for a checkup getting blood work, a PFT (lung volume test) Hopefully these tests will show that she is getting better and better.

Dad

The weather has been horrible here in St Louis the last two weeks or so. I NEED THE SUN! w. sunscreen of course.

There was a break in the weather yesterday so we decided to head to the Zoo. It’s weird but I have mixed emotions about the zoo. It seems that every-time I visit I forget the way I felt the previous visit. I remember the last time I visited, I vowed not to go back because some of the animals seemed so bummed out and this visit was no different. Don’t get me wrong, the St Louis Zoo is amazing and one of the best in world, but the animals seems so sad to be stuck in their various habitats. For example, we were in the primate house watching some random monkey sleeping when a little girl about 5 decided to start knocking on the window loudly. The signs throughout the zoo say, “do not harass our animals, if you see harassment occurring please call blah, blah, blah number”. Well, the little girl continued to knocking on the window until the monkey finally got pissed and started hissing and grabbing at the window. Everyone was saying, “oh my gosh that monkey looks crazy”. I thought to myself this wild monkey is stuck in the small cage,  alone with some lil’ Bi#t@* banging on the window, of course he is not in a pleasant mood. I eventually turned to the mother of the little _____ and said, “the signs throughout this habitat say don’t harass the animals so I don’t think she should be doing that”.  The mother gave me the dirtiest look, grabbed her daughter and took off. I know she was mad and gave a dirty look every-time we met throughout the day in the zoo, but I really felt sad for that monkey.

Another sad reality about the zoo is that one day the only place we’ll be able to see some of these wild animals in the future. St Louis Zoo does seem to be promoting a ton of different organizations to help some of vulnerable or nearly extinct animals.

The giraffes are probably my most favorite animal at the zoo. Recently, a baby giraffe was born and he/ she is adorable. Even as a baby it is so graceful! As always the sea lions entertained me by just being silly. It was just after their lunch when we passed their pool. One little guy was laying on the concrete with his head underwater. Occasionally he came up for air, but went right back down. I don’t blame him, those kids on field-trips were loud and annoying.

I suppose I’m getting old. I get really annoyed by stranger’s children. Jeff and I were saying that yesterday at the zoo would be a good day to teach birth control to teens.

Things are going well actually. It’s been a little bit of a road but Amanda’s health seems to be returning as fast as can be expected. I just wanted to provide more of an in depth report on how things have been going.

Mohs Surgery Due to being immune suppressed the sun is not very friendly to Amanda. She gets these squamous cell skin cancer which actually have to be cut off using an instrument that kinda works like a biscuit cutter removing layers of skin then they stitch it, cauterize and staple it.  Yes it’s as bad as it sounds. Of course I have never attended one of these surgeries and doubt very much I could. They wrap her head and scalp to a point that resembles how a mummy looks and they send her home. After a few weeks she returns they remove the staples and check for additional cancer.

Her latest PFT was better as was her most recent lung X-ray. Her and her Mom are visiting the hospital at least once a week and most weeks it’s multiple times. Her Mom accomanies her into all procedures even the ones the Doctors or Nurses try to prevent her from attending, but those who know Mom know that is not going to happen.

In reading Amanda’s most recent post I see she says she almost “kicked the bucket” I’m afraid that each of us and a lot of other people had the same thought, but everyone who knows Amanda knows she is not a quitter and continues to amaze all of us.

That’s why she’s known as AA (Amazing Amanda)

Dad