2012 - Miracles and Memories (Part I)

Part of me regrets not blogging this year because it was such a momentous year for our family. However, I just wasn't ready. The thought of articulating my feelings about everything that was happening was too overwhelming and I needed time to process.

I don't know if I'll ever be able to fully process the events of this year though and I miss blogging so I've decided to start fresh and continue the tradition of a "Year in Review" post. I feel like this will give me a fresh start and allow me to continue recording our family's experiences without worrying that I have so much to catch up on!

One of the last posts I published before my Double Lung/Heart transplant in February was my 2011 "Year in Review." I ended that post with this sentence:

"I truly love my life and am so grateful for the experiences I'm having. I feel like even though we faced some tough challenges this year, we didn't let those challenges prevent us from really living and enjoying our lives. Actually, the challenges we faced this year made the precious moments even more precious and brought our families and our friends together in such a special way. Here's to 2011 and looking forward with hope and faith for an amazing 2012! Blessings!"

Well, we couldn't have hoped for a more amazing 2012. Here are TONS of pictures to tell the story from January to the end of May when we returned home from Los Altos...

Jan. 2011- We didn't know it then, but these visits in January would lift us and prepare us for what the next month would bring!

Best buds!

Watching the seals off Pier 39 after a day at the Exporatorium

Girl time with my adopted little sis's

More Girl time with these angels

Feb. 2011- We celebrated Harrison's 5th birthday and Valentines Day...

He was spoiled and he totally deserved it : )

Harrison and Mrs. Sarah at Kinderprep

Big thumbs up on Suedy and Alfonso's gift, a KEN BLOCK car!!

Feb. part II- Operation Lungs and Heart!

Minutes after getting the call from Stanford on Feb. 15th, talking with family.

First moments after double lung/heart transplant...

A few days post tx with my surgeon in the ICU.

March 2011- Recovery and HOME!!

Harrison's first visit to see mom post tx. "Mom, is this a snowmobile mask from the X-Games?!"

Sneaking outside for some fresh air. Harrison is an expert at steering the I.V. pole!

Trading slippers for running shoes, I may have cried when I put them on...

Home with my mom and boys, grateful beyond words for so many answered prayers.

 March part II- Birthdays we'll NEVER forget...

On my 33rd birthday we said goodbye to my well loved and well used heart and lungs and thanked them for fighting so hard to keep me alive.

The next day we celebrated Ryan's birthday by exploring!

March ended with another wonderful visit from Suedy. I honestly lost count of how many times she traveled to Los Altos to visit/help. I love her so much!

April 2011- A visit from Merzy, Easter in San Diego, celebrating 8 years of marriage with Ryan and making the most of our time in the Bay Area...

So fun to have Merz come for a visit! I don't get why everyone was staring at me?!

Reunited with everyone at Grandma's for Easter!

Easter Egg hunt at Grammy and Grandpa's!

Celebrating eight years married to the love of my life and my rock!

A Glorious Day in Muir Woods

 

Another Day Exploring!! (Lands End)

May 2011-  Saying Goodbye to our Beloved Los Altos

A day in Santa Cruz

Harrison's Kinderprep Class performing at the "Spring Sing"

Walking across the Golden Gate bridge for CF!

 

My mom treated Ryan and I to an amazing trip to Carmel. Our first trip together post TX!!

Hiking the "Dish" was something I desperately wanted to do post TX. We drove by it every time we went to Stanford. I could not have survived 2012 without my angel mother. She was with us every step of the way...

Harrison clinging to his best friends the night before we left.

AND ...we're home in San Diego after 9 months!!!

The Mother of all Updates...

Not to be confused with "the mother of all hot wheels tracks" which is the current internet video that is requested daily from Harrison!

Well we've been here about two months now and it has been a full two months! We have tried to make life here as normal as possible and we have a pretty good routine. We obviously miss home dearly but are doing our best to make this waiting time an "adventure!"

Los Altos is a charming community and we are within walking distance of the library and the adorable, quaint town center with yummy restaurants and cute boutiques.  My brother Dax described the beauty of this place better than I could. He wrote about his time here on his blog. He traveled here to help us move in and as much as I appreciated his help lifting heavy boxes, setting up our computers, setting up my treadmill, and making yummy meals for us, I appreciated even more his calming brotherly presence. That presence, with his gentle shoulder squeezes and his ability to make me laugh, started our time here in the right spirit.

When we first got here, I was just off a "tune-up" (otherwise known as a three week stay in the hospital), so I was feeling relatively good. My lungs felt clear and I had a refreshing energy which was I'm sure part due to the fact that we had taken this step towards transplant and the burden of "not knowing" had lifted. 

I met with my surgeons and also met the CF team here for the first time. I was encouraged by my meeting with the surgeons who would be preforming my transplant. They were very professional, yet down-to-earth. They answered all of my questions without making me feel rushed. Ryan recorded most of our conversation and I will summarize my questions and their answers in a separate post. The bottom line is that I felt very comfortable with them and had that reaffirming "good, peaceful" feeling while talking to them. Despite that good feeling, after talking to them, the reality of everything hit me very strong, and I couldn't help crying the whole way home.  Ryan just held my hand and let me cry. I knew he understood.  When I got home my mom hugged me and said something to this effect, "crying doesn't mean you're weak or afraid, it just means you are letting yourself feel this experience." It was comforting because I didn't know exactly why I was crying after having a good, positive appointment and I realized I was just allowing myself to "feel" the enormity of the situation without letting go of the peace and hope that is so prevalent.

These last few weeks have been a little bit rough as I got a cold that started out as a sore throat and quickly turned into fevers and congestion. Unfortunately, I am resistant to any oral antibiotics that could help and I couldn't bear the thought of going back in the hospital so I just tried to deal with it on my own by upping my treatment schedule, getting lots of rest and increasing my supplements. When the CF clinic found out I hadn't called them as soon as I started getting sick, they were NOT happy. They scheduled an appointment and then admitted me once they saw me. I am used to going into the hospital on my own terms and I felt like they were putting me in because they didn't trust me so it was very hard.

Being in a new hospital with new doctors and nurses who didn't know me was discombobulating and my physical and emotional well being spiraled downhill quickly. I wasn't sleeping well or eating well and the miscommunication was frustrating to say the least. After two days of being physically exhausted and emotionally overwhelmed, I did something I've never done. I asked my doctor to let me go home. There had been a failed PICC line attempt so I still just had a peripheral I.V.. I told him that I thought they had jumped the gun on admitting me and begged for a week to prove that I could get better on my own without committing to three to four weeks of I.V.'s plus more hospital time. He let me go on the condition that I would come in if there was any decline and that I would come to clinic in a week so he could reassess the situation.  It was such a VICTORY! I continued what I had started at home before they put me in and although I am not back to baseline, I am gaining strength every day and am so glad to be home healing with my family.

That follow up appointment took place on Friday and although I was a little nervous they would think I hadn't improved enough, I felt confident in the progress I had made. Fortunately, they could also see the improvement and didn't feel I needed to be readmitted. What a relief!! I am a very compliant patient and need to work on being assertive and advocating for myself, so this was a very good lesson for me. I knew what my body needed and even though it was challenging for me to voice it to my doctor, he listened and trusted me in the end. I know that experience was good for my confidence in communicating with my doctors and will serve me in my future encounters with them.

I am so grateful for the prayers that have continued in my behalf and am certain that they played a big part in me being able to endure these past few weeks and get home from the hospital quickly.  I am so so grateful for your love, support and prayers always!

Happy Halloween!

Stanford Update

It's hard to type when tears of gratitude keep blurring my vision. What I have been fervently praying for, came to pass tonight. To quote my mom, "I feel another miracle coming on!"

During the first week in August I traveled to Stanford to undergo their Double Lung Transplant Evaluation. It was four days of extensive medical tests. Although it was physically (and mentally) draining, I felt a sure sense of peace and calm that was very reassuring. For the duration of the evaluation, I knew many prayers were being heard and answered in my behalf because of the strength and hope I felt. I connected very well with the team there and despite a few concerns they mentioned to me during our clinic appointment, I felt extremely confident that the following Monday (August 8th)I would receive the great news of acceptance to their program.

I did receive a call on August 8th and was initially shocked when the doctor explained to me that after looking at the results of all of my tests, the surgeons would not consider doing a double lung transplant on me. Because my right lung collapsed in 1996, all of my organs had shifted and were stuck together with the sticky scar tissue and remnants of my damaged right lung. Ryan and I were on the phone together and we nearly crumbled with fear and uncertainty when we received that news. However, the doctor went on to explain that there was a slight possibility the surgeons would consider doing a double lung/heart transplant. They needed more information and wanted to request all my CT scans and X-ray's from 1995 on to try and track the progression of what happened to my right lung and to my heart. They gently told me to be patient and that they would be in touch when they got the information they needed.

We were with my whole family when we got that call and what we thought would be an evening of celebration, turned into a somber evening of tears, hugs and comfort. By the end of the night, we, as a family, had resolved to remain hopeful and start working on Plan B by researching centers who may be more familiar with my unique situation and/or more willing to take high risk patients. I still felt like even if Stanford would not do a double lung tx, but would do a heart/lung tx, they would be my first choice. We decided to pray specifically for that but also that we would continue to be guided and led in other options as well. After the initial disappointment wore off, the calm reassurance that this was in the Lord's hands returned fully and I was gently reminded to keep trusting.

My last request that night to my family was that we have the time of our lives the next few weeks while we awaited further notice. Chels and her whole family were here and I wanted to enjoy our cherished time with them. I did NOT want to perpetuate fear and worry but wanted to celebrate the love that exists in our family and have FUN!! Have fun we did and I have the pictures to prove it! I guess they took my request seriously because my mom drew up quite the itinerary....look forward to an upcoming post with all the details of the BEST two weeks of my year so far!

In the mean time, my mom and Ryan's dad Terry both immediately started extensive research and were both very impressed with Duke as they do over 100 lung tx's a year and despite the fact that they accept the riskiest patients who have been denied at other centers, have a very high success rate. We went ahead and started the process to get evaluated at Duke as well. I am scheduled to be evaluated there on Aug. 29th.

As you can imagine, it was quite a feat for Stanford to get all of the records they needed, let alone review them (there were likely nearly 200 films to look at!) After finally receiving all of the films, they presented my case at their meeting again tonight and I got a call from them letting me know that after careful consideration, the surgeons feel confident that a heart/double lung tx will be successful. They have accepted me to their program. I was so choked up after the news that the tx coordinator said, "are you still there?" I was there, I just couldn't talk with a lump of gratitude and relief in my throat!

Stanford was aware of and respectful about my desire to pursue Duke as another option and in fact, they sent Duke all of the results of my evaluation. After a lengthy discussion with my family tonight and following the impressions of my heart, I have decided to cancel the appointment with Duke and move forward with Stanford. I cannot discount the peaceful feelings I had there and the connection I felt with their team. I am 100% confident that they want me to survive and have only had my best interests in mind.

There is much more to discuss but I will update again soon with our next steps on this journey!

So many prayers of gratitude have already been said in our home tonight. We have expressed gratitude to our Heavenly Father for not only this outcome but also for the wonderful people in our lives who have held us in their hearts and remembered us in their prayers. We have asked that blessings will be poured out upon you for your love and goodness! Thank you, thank you!

Day 4 of TX Evaluation -- Heart Catheterization

The prayers worked. Seriously, thank you, thank you. Today was a little rough and long but could have been so much worse. Again, the nurses and Doctors who attended me today were so kind and gentle...always a reminder to me that I am being watched over and blessed during this process.

I got to the hospital at 7 am and was prepped for the right heart cath. There are a few different approaches to this procedure, the best being going in through the neck and threading the scope down to the heart. The most difficult approach is going in through the groin and threading up to the heart. In that case, you have to be laying completely flat (which is a difficult position for me to breathe in) and the recovery is about 6 hours as opposed to a 2-4 hour recovery if they can go through the neck. Needless to say, I was praying the Dr. would decide to go for the neck and to my great relief, he said he would attempt that first.

After I was all prepped, they let my mom come into the big waiting area and wait by my bed with me. They were very busy and I wasn't wheeled back to the operating room until 10:00. Because I was nervous and a little restless, I decided to pass the time by saying a prayer for each person who was wheeled out of the waiting room before me. It honestly calmed my nerves and I eventually fell asleep until it was my turn to be wheeled back. My mom snapped the above picture of me right before I left and to quote my Grandpa, I am only smiling because "I didn't understand the situation!"

I was given an aspirin and a Valium orally, and a sedative in my I.V. They also gave me a local anesthetic in my neck and then proceeded with the catheterization. I was awake but felt very foggy. I had a wonderful nurse with me for the duration. He maintained eye contact with me and reassured me through the whole procedure. It was not painful but I did feel pressure in my neck as they inserted the catheter and thread it down. The entire procedure took about 45 minutes to an hour but then I had to recover in the bed for 2 hours. They brought me some fruit to snack on and then I slept. Finally they transferred me to a chair and let my mom come back to sit with me for a while until I felt stable. I felt pretty strong and was able to dress myself and walk to where the car was waiting out front.

I was so relieved they were able to go through the neck and although my neck is swollen and sore now, I know it could be worse and I am so grateful it's not!

My mom and I head home tomorrow. I am anxious to be reunited with my family, get some good rest for a few days in my own bed, process this week in more depth and get as ready physically and emotionally for what is to come.

- Posted using BlogPress from my iPad

Day 3 of TX Evaluation...I am not a number!

Well today was the big day. I met the "team" and found out if they thought I would be a good candidate for this procedure. The whole team meets every Monday and discusses the patients who they think are ready to be listed. They let me know that they would indeed be presenting my case on Monday and that I would hear from them soon after.

I felt reassured when the TX coordinator came in to take my picture. I wondered aloud why she was taking a picture of me and she replied that to this team, I am not a number. I am Sharlie. They will use my NAME, not a medical record number, when they present my case and will refer to me as Sharlie throughout the entire process. It reminded me of Sanoviv and the holistic approach they take with an emphasis on treating the whole person and it was refreshing and comforting to know that at Stanford too I would not be "a number." I continue to simply feel good about Stanford; the facility, the staff, and last but not least, the Transplant team.

There is one possible glitch and if you are praying, this is something specific that I will be praying for and would appreciate your prayers as well. In 1996 my right lung collapsed and is basically just a mass of scar tissue now. The only issue the Dr. talked to me about that could prevent the surgeons from accepting me as a patient is if they believe removing the base of the right lung with all the scar tissue will present serious complications. If that is the case, Stanford will not accept me to their program. Although that conversation made me feel a little uneasy, I am not focusing on this issue. I will deal with this only if and when I need to. However, I will be praying that this will not prevent me from being accepted and that when the time comes, the surgeons will be able to remove my lungs without any complications.

The day ended with another round of blood draws and again, it was a struggle. My poor veins decided to go on strike and it took two lab technicians, a cup of water, two heat packs and three attempts to get another large 12 vials of blood. My mom rewarded me with a trip to Whole Foods where I picked out my new favorite Fage Greek yogurt and a few perfectly ripe nectarines for dinner.

Tomorrow will be tough and I may not have the energy to do an update after the heart catheterization. I have to be at the hospital at 7 am where I will be prepped and sedated for the procedure. I was told that it takes a while to recover and come out of the sedation. I should be released at about 3:00 in the afternoon.

Thank you for your positive energy and prayers for a smooth procedure tomorrow!!

- Posted using BlogPress from my iPad

Urgent Prayer Request...

This is the story of a fellow C.F. mom and her loving husband. I feel so intimately connected to them even though we have never met. Tricia has just received new lungs and her Miracle Baby girl is fighting for her life in the NICCU.



I had a sleepless night last night as my thoughts and prayers were unceasing for this amazing family. Please join your prayers with mine and overwhelm our Heavenly Father with love and hope for Tricia, Nate and precious Gweneth. I know, as Nate and Tricia do that God is a God of Miracles. I have certainly experienced that powerfully in my own life.

Go to: http://cfhusband.blogspot.com/2008/02/fast-track.html to read their story and get updates on Tricia's transplant recovery.