I’ve been sitting in the prep room for 3 hours already and just waiting another hour for my procedure. Great news is my husband’s retrieval went very well!!!
Fast forward another hour and a half as I was sitting in the room after my procedure. I was feeling some intense cramping so the anesthetist gave me some anti-inflammatory medication. Then after eating a small bag of animal crackers and water per the protocol, a wave of nausea came over me and I felt extremely flush so I laid back in my chair and the nurse came back with a tablet to place under my tongue.
Driving back home usually is around 2 hours but it was truly an exception due to road construction and bad timing with the lights. I wasn’t up for any food outside of trying a chocolate shake, which tasted good and didn’t cause any additional nausea so I was in the clear. Upon arriving home I felt the need for a nap and was able to catch up on some sleep from the week of log drives and sleep deprivation! Time to relax!
It was a very early morning to get down to IL for my first monitoring appointment to see how I’ve been responding to the meds for the past 4 days. I was a little nervous hoping for decent progress in order to move on to the next step of the protocol – starting Ganirelix. I finally heard back after 1:30 notifying me that things looked good so I was supposed to start taking the 250 IU prefilled syringes tonight. Awesome!
Little did I know that these shots were tough! It hurt the most when poking myself and afterwards the site got red, started welting and itched terribly. You could imagine my concern and need to try and stay calm. But, after monitoring it for an hour, the itch started to lessen, the site turned back to flesh color and a slight welt still remained. Phew.
My biggest signs besides my hyper annoyed nature (my mom and husband have made note of this!) would be feeling so tired. I’d like to combine that with the craziness of work and the fact that I got up at 4am, so either way my exhaustion is amplified. I have had some headaches but nothing too intense to knock me down.
Until next time, breathe easy!
It’s been quite a year since the last time I wrote, filled with many life changers. We’ve had a few CF husbands receive new lungs, one for the second time and celebrating a year for the husband I last wrote about. It’s amazing what a miracle can come out of being an organ donor!
To sum up a year’s happenings would be quite the task so I’ll try and capture it as best as I can. I started RCIA (Rite of Christian Initiation of Adults) to enter fully into the Catholic Church after Labor Day. We had classes almost every Sunday after 9am mass until the Easter Vigil service. I have to say it truly was a great experience entering into the faith and growing spiritually with my husband.
We finally went on our first trip as husband and wife, with a couple of our great friends, to New Orleans in September around our 2nd anniversary. The guys had been there before and thought it would be nice to go back and see how it has changed. We had a great time despite all the rain and humidity, especially since our lovely husbands surprised us with a day at the spa while they toured the war museum. There was a lot of good food and great company and I have to say the best part was the swamp tour full of gators and wild hogs.
In November we welcomed our first nephew, JT, and shortly after my Godson, Eli, was born on Black Friday. As we drove around getting all the good deals, I anxiously awaited more news via mass texts from Boston. It was so nice and refreshing to welcome some boys into our family considering we already had 3 nieces.
We went down to NC in December for Eli’s baptism, which was our second big trip together. It was also a celebration for my husband’s big promotion at work – Category Manager. He had been working so hard for a year and a half to get here, which is exactly why we moved down to IL in the first place. To say I was proud would be an understatement!
January brought amazing news – IVF coverage! Finally, we were offered up amazing insurance benefits which was a dream come true. We waited a few months to go back to the doctor’s office and fully started the process in March with all the initial blood work. Then in April I came back and to my dismay we had to do more tests. For being such a top office, they sure did a terrible job of communicating exact procedures and timelines.
We went back in the middle of May and got my meds ordered along with going over a timeline of the process. It wasn’t until that afternoon when I got a call from my doctor that I was a bit concerned. They now wanted me to do more CF carrier tests because the one I did in 2010 was only a 32 panel and they have a more comprehensive 97 panel. I was furious that they could toy with my emotions when they’ve had all my tests since January of 2011. You can’t possibly imagine the emotional stress preparing for this life changing event to just have it taken away so quickly.
To make matters even more stressful, we fell in love with a home back near my hometown in WI, put in an offer and got it! We picked a closing day of June 7th and were contemplating having to switch that when they initially told us of our IVF schedule. I’m thankful now that we didn’t go through with it because the moving process was stressful enough.
Fast forward one week and we welcomed our fourth niece, beautiful little Sydnee Mae, into our family. We went to visit her a few hours after she was born, after waiting for a big storm to blow through. When walking in, big sister Kenadee was holding her, saw me and said, “Kiki, this is my baby!” They are too cute for words.
It’s been a few weeks and we absolutely love our house and being close to friends and family. I have to sadly admit that we’ve had plenty of issues with our house that I’m still sorting through, but overall being back in the state I love with the people I love is priceless.
Furthermore, as we are pretty much settled in our home and life, I started my stimulation shots yesterday, July 19. The first morning shot, 75 IU of Menopur, stung going in but I was so thankful my mom came to help me. The night shot, 150 IU of Follistim, was just like my husband’s insulin pen so it was a piece of cake and I had him give me the shot just to be safe. This morning I went ahead and took care of the shot myself – it wasn’t too bad!
I can only hope and pray everything goes as planned and in a few months we will be parents! I would be overjoyed with just one baby, blessed with two and God sure would be funny giving us triplets. I’d have to ‘blame’ my husband and mother- in-law who actually is a natural triplet, because he keeps having dreams and she just feels it will happen! Imagine that! :0)
Until then, breathe easy my friends. I’ll try not to be so infrequent with updates!
A lot has happened in our CF Wives group the past few month, full of blessings and a few in sadness. When anyone asks usually they want the good first, so I will follow in that tradition. A CF husband, Nate, got the call he had been waiting for and for the first time in our group that I know of, he didn’t even end up with a dry run – he got pretty pink lungs the first time! He was out of the hospital in less than 3 weeks and is already walking and breaking in his new lungs. What a blessing! You can follow his journey here – http://Nateredman.tumblr.com.
In moving on to the bit of sadness, a fellow wife battled breast cancer since diagnosis in April 2012, just a few short months after losing her husband to Cystic Fibrosis. Many difficult regiments of treatments in between vacations with friends and family to enjoy her final days, it just became too much. On the first of August she passed peacefully in the arms of friends and was joined at heaven’s gates by her husband. We never know the cards that will be dealt our way, but there is some solace in knowing she has joined her true love.
I found it extremely difficult to find words of comfort in her final week but pushed through to share the impact she had on her fellow CF Wives. I was amazed to see the response of other wives outside of our group saying Lisa was the first CF Wife they met and how she helped them through the years. Some people are definitely brought into your life for a reason and He had big plans for Lisa to touch the lives of many. May you rest in eternal piece with your soulmate, Lisa. You will forever be missed. To read more about Lisa’s life visit http://www.yakima-herald.com/obits/2012/08/05/lisa-marie-worthington-brown
Breathe easy my friends…
Today may have started out rough but it sure ended up being a great one. I forgot my work laptop at the office last night so I had to drive 45 minutes round trip to pick it up. Shortly after my husband left for work, I noticed his ID badge was sitting on the counter so he had to come back and get it. Hot messes! So on to the good stuff…
Two weeks ago, a fellow CF Wife whose husband is #1 on the transplant list waiting for a new pair of lungs, had a dry run. A dry run is essentially a heart breaker. You spend so long in declining health and pain praying every day and night for a second chance at a better life. Naturally, when you get ‘the call’ it literally changes everything. Unfortunately that call for Darren ended with a poor pair of lungs. But late last night there was another call, one that had positive news. They rushed to the Baylor University Medical Center and this time the lungs were pink and healthy, meaning time for transplant!
The surgery itself can take anywhere from 6 – 12 hours and we are still waiting on news. I’m sure Dana is just sitting with her husband, making sure she’s as informed by the doctors and praying. I can’t wait to hear about his recovery and I just kindly ask that you lift up your prayers for my fellow CF Wife and her brave, fighting husband. He spent 49 years with a nasty pair of lungs so he truly deserves this fresh new pair for 49 more years! :0)
I leave you with a picture that came across Facebook and is so poignant that is should speak for itself. Please sign up to make a difference today and be sure to spread the word. There is no reason to be afraid of being an organ donor. Be informed!
There’s power in prayer… praying for Darren to finally breathe easy!
May was Cystic Fibrosis Awareness Month and a fellow CF Wife came across this fantastic page on Facebook. A lovely military wife makes inspiring, heart warming and bracelets to honor loved ones. She also makes watches, lanyards, camera straps and pet items with virtually any saying, color combinations and variety of charms too. We were inspired by a purple bracelet with a mini dog tag saying “I love someone with Cystic Fibrosis”.
I know purple is the key color for CF, however I’m more of a black and green person so I opted for something different. Megan came up with the saying “Cystic Fibrosis may have his cells but I have his heart” with the purple awareness ribbon. Then for an everyday bracelet, I wanted something in a green paracord because I saw a 4 leaf clover that looks just like my tattoo. Michael is truly my lucky charm so it worked out really well, plus she was able to put our anniversary on the other side. I’m actually typing this with it on my right wrist and it brings a smile to my face.
A big thank you to Megan for helping us raise awareness in the month of May and forever more to the CF Wives. Awareness is truly a cure for ignorance so this is a great avenue. Now to think of what to get next… I think my auntie needs a bracelet to honor my uncle’s passing from ALS! Please visit Megan’s site and see for yourself. https://www.facebook.com/UnderConstructionSurvivalBracelets
Breathe easy my friends!
What a jam-packed weekend full of celebration and filled with lasting memories, both funny and heart melting. Great friends of ours are getting married in 3 weeks and I was fortune enough to partake in the bachelorette festivities… festivities-a-plenty! Then today was family time to celebrate the fact that two years ago today, our beautiful niece, forever known as our little punkin pie, came into this world (a few days late but definitely worth it). After all this fun it was a scenic 2 hour ride back home only to greet the kitters who clearly missed their mama, run to put everything away, get the garbage out, throw in a load of laundry and prepare hard-boiled eggs for my husband’s salad while he taps away at the keys to run his weekend reports to prepare for the Manic Monday.
I must rewind to capture all the amazing events, personal “firsts” and adventure. To start the bachelorette madness off right, we met up at the local shooting range… yes REAL guns! Now I do claim to be a sharp shooter from my childhood use of BB guns aiming for soda cans in the trees both righty and lefty (ambidextrous, yes), however my dad and older brother are both marksman by trade – hunters and recently my brother made the SWAT squad as a sniper. Sharp shooting clearly runs through our veins, even my mom said that she has shot before and impressed the instructors. From the first shot mere millimeters away from the bullseye on the target’s head in control of a 22, to the last few shots using 45 caliber bullets, it was pure adrenaline, control and amazement of my marksmanship.
One of the shooting range workers who sparked up conversation with my friend and I as we were contemplating the recoil of shotguns, offered for us to shoot his own personal gun. We jumped to the chance and I clearly wasn’t watching all to well considering the bullets were about 4 times the radius of the previous bullets. After the riveting shot right in the target’s chest, the shell smacked me in the forehead! If you haven’t tried out a shooting range, I highly recommend it. Don’t be afraid of guns because the key is being in control and not letting it control you. Not only was my mom and dad highly impressed, the look on my brother’s face as I showed him my two targets was one of hidden pride and according to my dad, a bit of jealousy!
After the shooting, we headed downtown to a swanky hotel to get ready for our night on the town. Lots of laughs with the girls was just what I needed. The move out of state has been a difficult transition, more so to our social calendar. We had an awesome Greek buffet and dry wine (not my fav but at least there was white) filled with salad, a platter of hummus (so much better than the store bought plastic flavored mess), plenty of olives, feta cheese, chicken and lamb open gyros, followed by a rich tiramisu. It’s safe to say over 2 hours we ate ourselves into a semi-food coma, but it was well worth the enriching experience. A short stint back at the hotel, we got a mini bus from the restaurant to take us to a club with our names on the list for $2 drinks. It was only 10:30 so there weren’t many people out, but I was ready for bed! I only made it another hour and knew that my husband needed to get rest for our busy Sunday so we bid adieu until the wedding!!!!
Sunday morning brought on birthday cake baking and decorating with my mom, a haircut and a little shopping, before we celebrated Miss Kenadee’s birthday. As soon as we walked in the living room and she saw us my heart had already melted. Hugs and kisses later, I had to apply my Mango Burt’s Bee’s chapstick and of course share with my little diva. Her independence has truly soared over the past few months so once she sees the stick it’s all about having some, holding it and applying it herself. When one of her 4 (yes, it’s true) great grandmas came by to say hi she softly grabbed my arm and said to her “this is Kiki.” Heart melted!
She had to go down her slide a few times, make sure no bugs were by her and even showed Uncle Bud her garden aka gawden, followed by a mini photoshoot with me! She’s a ham when it comes to our iPhones – kids and technology are quite the crazy combination these days! I was chewing gum and she asked for some but when I said no, sorry honey you can’t she promptly replied “I can when I’m older.” And she’s only two!!! We had a dance party in the basement and “Glad you Came” by The Wanted came on right away and she got very excited because “this is my song!” I was too excited to enjoy dinner because I really wanted to see her reaction to her present and garden birthday cake that was fast approaching. Uncle Bud brought over the Little Tikes Garden Wheelbarrow with flowers and she went straight for it “Ooooohh!” and proceeded to play with it even after her mom tried to reign her in to the other boxes of toys. I also wanted to make sure she had her own mango chapstick that stemmed her shouting “Mango!”
It’s been a wonderful weekend with our little sunshine. Until next time, breathe easy my friends!
I apologize for my absence the past 2 months, however it’s with great pleasure that I can look back at all the milestones that have happened. Where do I begin? Surely, we can start off with a quick update on me and then get into the good stuff. I’m officially down 32 pounds and have remained such for the past month. I’ve got a few pounds left till I’m more satisfied but I’m amazed at how I feel… so accomplished! Now to the good stuff!
Let me start by telling you February was a good month! I know countless people who are due this November, be it family, friends and a few CF wives too. I will admit it stung a little bit at first- the people who would vent to me about their frustrations in trying to start a family were soon pregnant, however amazingly enough I learned to take it more as a good luck charm. My sister-in-law is due with her 2nd on the 7th, dear friends from my college years are due with their first the following day and my best friend, whom I have been given the great honor of being Godmother to “puffin” as she so aptly named baby, is due the 15th. I don’t know the specifics of due dates on my fellow CF wives but oh I am so happy for them. One is even pregnant with twins… oh la la!
These recent developments have actually calmed my need to begin a mom ASAP. Something clicked after all the appointments and investigation – we need to enjoy our life and soak it up while we have the chance. It’s refreshing and I don’t feel guilty buying new music, movies or books now!
My job has definitely been keeping me busy, as I continue to learn the client services side of marketing, and the demanding schedule of hockey playoffs (courtesy of sponsoring Madison Square Garden). I’ve been fortunate enough to be able to also help my sister-in-law on the side to set up her new at-home-salon. We are so proud of her for making this step and the progress looks amazing, with her marketing materials to match! In respect to my amazing husband, he has flourished in his role, managing three demanding desks (categories) in the world of retail. He came home yesterday to announce that he had been requested by the Group VP to move over to a new, larger desk – candy. This move will not only allow him to learn the grocery side of the business, but take on more responsibility and increased exposure. I know he’s ready, willing and able to rock this new desk… but I’ll surely be staying clear of all the free candy!
In addition to creating business materials for my sister-in-law, I’ve branched out to help others with my design work. I revamped my high school logo to be featured on banners throughout the new addition and all elements going forward. It’s nice to leave a legacy! Also, I really have gone crazy in tapping into my crafty side. My Cricut machine has remanded dormant since I got it for Christmas some years ago. I recently became enthralled with the opportunities and expanded my cartridges, accessories and supplies to start putting it to good use. I created vinyl wall sayings for my in-laws, door numbers for my sister-in-law, and HEMI outdoor vinyl quality for my dad to place on his truck. Men!
One of my coworkers, Lauren, who is more like a little sister, got married on May 19th. After discussions of her wedding planning and how everything was wrapping up, she admitted they did not have any toasting glasses. I was going to change that! Her wedding colors were blue and green so thankfully I had green vinyl on hand and searched for nice champagne flutes. I had seen a project when logging into my Circut Craft Room about putting vinyl to make your own champagne toasting glasses and I was excited. I think they turned out great and I know how touched she was to have them. Here they are!
On a cold, rainy Thursday in April, I had the great pleasure of attending the first annual CF Milwaukee’s Finest event. We honored 8 young professionals who dedicated the prior 6 weeks to learning more about Cystic Fibrosis and raise funds to help support finding a cure. One of those honorees is actually our great friend and fraternity brother, Rick. He actually worked with the CF Directors to start the event and beyond being proud of him, his support and involvement with the CF Foundation truly touches our heart. Above celebrating the accomplishments of the 8 honorees, I had been honored to have been asked to speak for the attendees and give them insight from a CF Wife. My words came easier thanks to my preparation and it felt so nice sharing our story and my perspective, one that not many put into consideration. I got a very sweet note from the CF Director who organized the event and it said that a CF mom came up to her to thank her for offering the new perspective. I was touched and besides, now I’m more than just a sidekick to my famous husband!
In other news, I ask that you please keep my fellow CF Wives and their husbands in your prayers. I was able to connect with another wife last week and invited her to our Facebook group, and unfortunately 3 short days later her husband passed away. I know having gotten in touch with her and introducing her to the immeasurable support of the fellow wives is a gift from God, but it hurts my heart to have her go through this so soon. There are also wives who are patiently waiting for pink, healthy lungs to give their husband’s a second chance at life and finally to breathe easy. This week a few also moved up the list and were also just recently listed. CF is a crazy disease. It’s so different from husband to husband but the one thing I’ve learned is to keep an open mind and open heart.
I beg of you to spread awareness and sign up to be an organ donor. You don’t take your organs with you to heaven and we NEED them down here.
Until next time, breathe easy my friends!
I don’t believe I mentioned it before, but I started Nutrisystem in January to get back to healthy. Today I weighted in at 11 weeks for a total weight loss of 25 pounds! Not only is that my favorite number, this is a significant milestone in something I didn’t think was achievable. I’ll leave it short and sweet to exude the happiness and pride I have felt all day. Happy St. Patty’s Day!
I can’t believe there are only 9 days left in February, which marks 2 months since my husband’s cyst removal or 1 1/2 months of waking up every morning and helping him shower and prepare his wound for the day. Clearly I love this man because not only was I extremely scared about doing something wrong, for fear of infection or causing him pain, but to maintain it every single day and see him starting to heal has been pretty rewarding. Keep in mind he has a gap in his butt cheek that did not start off pretty or smelling the best, but as he’s said multiple times – in sickness and in health! I apologize if a disturbing mental picture came to fruition after that brief description, but I can guarantee it’s far worse than what your mind conjured up.
Besides taking care of him, our days have consisted of working ridiculous hours every day and on the weekends to keep up with the grueling demands of our careers. I can say that thankfully I’ve been able to sleep a lot better these past few weeks, minus the few unsettling dreams about work or budgets. I can proudly say last week marked a monumental change in our family and sleep patterns. We finally bit the bullet and bought automatic feeders for our cats, which managed to keep Simba at bay until 6am instead of the usual 2/3 am! Now if only we could erase the monster I created formally known as Nala. I’ve been a loyal customer of TRESemme hairspray (the only brand that can keep my hair where it’s supposed to be!) for years now, and randomly filled the cap with water because she loves to drink water from our sink. Now her habit is to chase us into the bathroom, sit in the tub and squack at the faucet or even us until we play with her. What’s even worse is the fact that she refuses to let me sleep in on the weekend. She’s so determined to get us to play that she jumps in our bedroom window and paws at the wooden blinds, making an irritable sound only to drive her misophonic mother nuts! At least my husband is sleeping well through all of the chaos from our furry babies!
Speaking of babies, I know I can speak on behalf of a few other CF Wives when I say how defeated we feel these past few weeks. Friend after friend continues to post pictures of sonograms, their growing belly, nursery designs, baby shower gifts and announcing their new addition. It’s such a juxtapose because on one hand you are excited for their blessing, but you can’t help but feel some level of resentment considering the cards we’ve been dealt. I realize I never wrote about our appointment mid-January to the IVF specialist because it’s taken some time to recover from the sticker shock to create our family. Great news is I have “amazing ovaries,” however there are still no guarantees, especially when it comes to raising $20,000. Yes, you read that right, twenty-thousand dollars, and that all could be for naut. We have been praying that after my husband endures a painful $5,000 procedure , that there will be enough viable sperm to move forward.
Believe me, I’ve done extensive research and was having a one-on-one conversation with the IVF doctor to gauge our opportunities, or whatever was left of them. We would both feel more comfortable meeting with the top Urologist who specializes in male fertility to see if he can run any preliminary tests before we continue with the mental, physical, emotional and monetarily draining process known as in vitro fertilization. It’s utterly disappointing to now live in a fertility mandated state but realize that our companies do not cover any procedures. I’m at a crossroads of what we can do. Buying lottery tickets and praying for a miracle seems a bit far fetched, but at this point I will continue to stay as strong as I can possibly can. Would it make sense to find a job that offers coverage so we can start a family before going deeper in debt? Do we apply for numerous grants at the chance we can tug at heartstrings for assistance? So many questions and only time can tell what will be our best bet.
I yearn to be a mom and give my husband the once in and lifetime chance to be a dad. For now, I will live vicariously through those around me and enjoy our beautiful and funny nieces. I still might be pouty as I’m preparing shower gifts, upset at the numerous pictures on Facebook, jealous of all the cute ideas as they pop up on my pinterest feed, or get angry at Christina on Grey’s Anatomy for hating the idea of being a mom as she aborted Owen’s baby, but that’s only because I’m human. Maybe there’s comfort in that others yearn to find their soulmate, love of their life and best friend, while I sit here next to mine. Unconditional love is a beautiful thing and I know we will soon be able to feel that for our unborn child. I pray whatever you are yearning for as you read this comes your way as well, providing it’s legal and doesn’t harm others!