Tuesday, May 25, 2010

London!

This is not going to be a very exciting post, as I don't want to take much time to write it.

We arrived in London at 10:30AM on Monday. After the 12 hour flight my legs were swollen like they were after my surgery in February. I guess my lymphatic system has not fully recovered! Mental note, get up and walk around the plane on the ride home.

We arrived at the Marriott Maida Vale hotel around noon or 1pm, I can't remember. It was the middle night for us so we were tired. We pretty much passed out until 5pm when we got up for dinner. Turns out several of the Maida Vale area restaurants are closed on Mondays. Who woulda thunk? We ended up going to a steak house near Paddington before the big game. We made our way to Wembly stadium just in time to find out that 10 minutes before the football starts, they STOP selling beer. Poor Paul.

The game (England v Mexico) was awesome! The fans are amazing, chanting and singing the whole time. I couldn't figure out exactly what they were saying most of the time, I had to have my british husband translate for me. We were also part of a new world record for the largest human flag. Each of the 90,000 fans were given either a red or white t-shirt depending on where your seat was located. There were then two flags of England on either side of the stadium. Quite a sight! I have to admit, the crowd looked pretty awesome and it was fun to be a part of it.

This morning we slept in to get over the jet lag and finally got out the door in time to find some lunch. We started out in Covent Garden and walked around after lunch all day long. We found Leicester Square, Trafalgar Square, Picadilly Circus, Oxford St, Regent St (and the largest Apple Store on the world!) and of course ended with Wagamama for dinner.

At the Apple store we video chatted with the twins. It was 4PM in London so they were just getting up at 8AM and having a good time with Uncle Sean. There we were in the middle of the biggest Apple Store in the world and the twins changed their background to "roller coaster" (those familiar with iChat will know what I'm talking about) so they were raising their arms and hooting and hollering "whooo wheeeeeeeeee!" as we chatted away in public. (It looks like they're on a roller coaster in the background, instead of just the background of the room they are in) Good times.

Something I don't remember from my previous trips to London are the hills. I don't know if we found the only hills in London, or if they are everywhere, but this time around with only 42% lung function and a very weak body I've had so much trouble keeping up. Poor Paul has to walk at "Tara's pace" and I cannot carry on a conversation and walk at the same time. My legs are sore and aching but we made it through today.

Tomorrow I'm hoping to see more sights by sitting down. We plan to get an all day River Roamer pass and just spend time on/off the Thames taking pictures and eating of course.

Well that's what we've been up to so far. One more full day in London and then we're off to Grantham on Thursday for Mark and Sarah's wedding!

Wednesday, May 19, 2010

Nine Years

Without this there would be none of these.

I love you babe! Happy Anniversary!

Sunday, May 16, 2010

A Day in the Life of Cystic Fibrosis

May is Cystic Fibrosis awareness month. In the spirit of spreading the word I'd like to share what my day looks like in terms of Cystic Fibrosis maintenance. Keep in mind this is my "healthy" schedule. It is far more rigorous when I have an active lung and/or sinus infection.

8AM First pills!
800mg Motrin (to control inflammation)
180mg Allegra (to control grass allergies)
40mg Nexium (to control GERD -Gastroesophageal reflux disease)
8:05AM Prepare/mix and warm sinus rinse
8oz distilled water (to decrease risk of exposure to harmful bacteria)
1 packet NeilMed salt
1 vial Pulmicort Respules (steroid to reduce nasal polyps)
8:10AM flush each nostril with 4oz of prepared warmed sinus rinse.
8:15AM Nasal sprays
Patanase 2 sprays each nostril (reduce nasal inflammation)
Nasonex 1 spray each nostril (steroid to reduce nasal polyps)
8:20AM First Vest treatment of the day
Strap into the SmartVest for 30 minutes of pre-set settings as follows
5 minutes, frequency 6, pressure 100
5 minutes, frequency 8, pressure 100
5 minutes, frequency 9, pressure 100
5 minutes, frequency 18, pressure 70
5 minutes, frequency 19, pressure 70
5 minutes, frequency 20, pressure 70
8:20AM Simultaneous first nebulizer treatment of the day
Xopenex 1.25mg/3mL (bronchodilator to open airways)
5mL 3% Hypertonic Saline (expectorant)
8:40AM Reconstitute inhaled antibiotic
500mg Meropenum/3mL sterile water (reduce pseudomonas aeruginosa in the lungs)
Inhale mixed Meropenum solution
This antibiotic is alternated 28 days on and 28 days off. During the off month I inhale Cayston (Aztreonam Lysine) They are rotated to reduce the chance my bacteria in the lungs will build a resistance.
8:50AM Vest is done, continue inhaling Meropenum
8:55AM Meropenum complete
8:55AM Rinse and wash all nebulizer pieces and parts, let air dry
9AM 2 puffs Advair HFA 115/21 (long acting bronchodilator combined with steroid)
9AM Breakfast
3 Ultrase MT20 enzyme pills (to digest food)
600mg Calcium
1000mg Vitamin C
1 ABDEK (prescription vitamin high in fat soluble vitamins)
3 PB8 (blend of 8 probiotics to reduce yeast growth)
11AM Small snack
2 Ultrase MT20 enzyme pills (to digest food)
mix 1-2TBS Miralax powder with 6oz Orange Juice (Laxative)
12PM Lunch
3 Ultrase MT20 enzyme pills (to digest food)
1:30PM Second Vest treatment of the day
Strap into the SmartVest for 30 minutes of pre-set settings as follows
5 minutes, frequency 6, pressure 100
5 minutes, frequency 8, pressure 100
5 minutes, frequency 9, pressure 100
5 minutes, frequency 18, pressure 70
5 minutes, frequency 19, pressure 70
5 minutes, frequency 20, pressure 70
1:30PM Simultaneous second nebulizer treatment of the day
Xopenex 1.25mg/3mL (bronchodilator to open airways)
5mL 3% Hypertonic Saline (expectorant)
2PM Vest and nebs are done.
2PM Rinse and wash all nebulizer pieces and parts, let air dry
2:30PM Snack time!
2 Ultrase MT20 enzyme pills (to digest food)
800mg Motrin (to control inflammation)
5:30PM Dinner
3 Ultrase MT20 enzyme pills (to digest food)
600mg Calcium
1000mg Vitamin C
1 ABDEK (prescription vitamin high in fat soluble vitamins)
3 PB8 (blend of 8 probiotics to reduce yeast growth)
6:45PM Prepare/mix and warm sinus rinse
8oz distilled water (to decrease risk of exposure to harmful bacteria)
1 packet NeilMed salt
1 vial Pulmicort Respules (steroid to reduce nasal polyps)
6:50PM flush each nostril with 4oz of prepared warmed sinus rinse.
6:55PM Nasal sprays
Patanase 2 sprays each nostril (reduce nasal inflammation)
Nasonex 1 spray each nostril (steroid to reduce nasal polyps)
7PM Third and final Vest treatment of the day
Strap into the SmartVest for 30 minutes of pre-set settings as follows
5 minutes, frequency 6, pressure 100
5 minutes, frequency 8, pressure 100
5 minutes, frequency 9, pressure 100
5 minutes, frequency 18, pressure 70
5 minutes, frequency 19, pressure 70
5 minutes, frequency 20, pressure 70
7PM Simultaneous third nebulizer treatment of the day
Xopenex 1.25mg/3mL (bronchodilator to open airways)
Pulmozyme 2.5mL (thins mucus)
7:20PMReconstitute inhaled antibiotic
500mg Meropenum/3mL sterile water (reduce pseudomonas aeruginosa in the lungs)
Inhale mixed Meropenum solution
7:30PM Vest is complete. Continue inhaling Meropenum
7:40PM Meropenum complete
7:40PM Rinse and wash all nebulizer pieces and parts, let air dry
7:45PM 2 puffs Advair HFA 115/21 (long acting bronchodilator combined with steroid)
9PM Last pills!
500mg Zitromax (Mon, Weds and Fri only)
Lo Ovral Birth control pills (an unintended pregnancy could jeopardize my lungs)
50mg trazodone (sleeping pill)
10mg Singulair (to treat asthma component to Cystic Fibrosis)
800mg Motrin (to control inflammation)
40mg Nexium (to control GERD -Gastroesophageal reflux disease)
9:05PM Fire up the oxygen concentrator. My lungs don't exchange gases well anymore at night when I breathe shallow in my sleep. My oxygen saturation levels drop into the 70's so I have to sleep with 3 Liters of continuous flow oxygen through a nasal cannula to keep my oxygen sats in the 90's.