Saturday, August 27, 2011

We did not let Summer pass us by!

Although much of the summer revolved around my hospital stay and beginning this transplant journey, it wasn't all hospitals and transplant...

Summer is by far my favorite season and I was not going to let it pass us by! We enjoyed beach days, pool time, swimming lessons, s'mores, sunburns, being with friends and most of all, spending time with family! Here are some of the highlights!

We started off the summer with a little gymnastics class for Harrison. It was an attempt to improve his coordination. It may or may not have been successful : ) He was the only boy in the class and as you can see, he got a lot of help from the teachers!

We also enjoyed Ward Beach Days. We could only make it to a couple of them but we had a blast!
(All the mom's were so good about helping me and running after Harrison!)

Through a friend, we found the BEST swim teacher ever! She gave Harrison private lessons in my mom's pool. She was so reasonably priced and it was the best money we spent this summer. She was so great with Harrison! And after only five half hour lessons he was totally swimming on his own.
(Of course Lamby watched over all the lessons!)

One of the best things that happened this summer was the birth of my darling angel nephew Drexel. We are all so excited to have him as part of our family!! He is the fifth child of Zak and Kelli.
Harrison and I meeting Drexel for the first time, I couldn't stop kissing him!

It's truly amazing how my family and friends rallied around me this summer and helped not only me, but more importantly, Harrison create several cherished summer memories! Despite the unique health challenges I faced these last several months, we will be able to look back on this summer and remember all the fun times we spent with the people we love! Stay tuned for a few more summer fun posts!

Monday, August 22, 2011

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!

Thursday, August 4, 2011

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.

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Wednesday, August 3, 2011

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!!

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Tuesday, August 2, 2011

Day 2 of Transplant Evaluation

Even though I had less testing today, I was more tired at the end of my appointments than I was at the end of the day yesterday. We were actually done at about 2:45 but I didn't even last the 20 minute drive home, I was asleep practically before my mom pulled out of the parking lot.

The day started with an Esophogram. I have never had this test before and didn't know what to expect. I changed into a gown, (side note: The gowns here are so comfy. They are a jersey material and remind me of a night gown. Much better than the normal hideous, stiff gowns I'm used to! I have to take pleasure in the small things : )) then I got onto a table and was told to drink the barium/oral contrast. I was worried about the taste but I only gagged once! It wasn't too bad, chalky and bland. The technician compared it to Mylanta. They had me gulp it in various positions on the table; standing up, laying on my back, my side and my stomach as they took several different pictures of my esophagus and how it was working.

Even though the actual test wasn't too difficult, I had a bad headache when we finished. I was required to fast for 10 hours prior to the test so I wasn't sure if the headache was due to lack of food or from the contrast that I had to drink for the esophogram.

After we had a bite to eat, we were scheduled to meet one of the transplant coordinators for a transplant education lecture. There was another patient there too so the information was very general. To be honest, because we've gone through this before and done so much research on our own, there wasn't a whole lot of information that was new.

The lecture lasted about an hour and covered things like:
*how to gauge readiness for transplant (the "transplant window" is when you are sick enough to need a transplant but well enough to survive the surgery and recovery),
*how one actually gets listed,
*average wait times for lungs (2 days to 2 years depending on your "score"),
*lung allocation score (the higher your score, the sooner you get lungs),
*the actual procedure (6-12 hours),
*the ICU after the surgery,
*the risks of organ rejection and infection due to being immunosuppressed (there is a fine balance between being immunosuppressed enough to prevent rejection but not enough to risk too much infection),
*the recovery process (1-3 months of pulmonary rehab here at Stanford after discharge).
It was a lot of information and I was still struggling with a headache so my energy level was pretty low by the end of the meeting.

Like I said, I fell asleep in the car and took two Advil when we got to the hotel and slept till dinner. I feel recharged tonight and ready for another day tomorrow. I will meet the whole transplant team and look forward to that. I have been so impressed with everybody I've met so far and feel confident that I will continue to connect well with the team at clinic tomorrow.

Thank you again for your heartfelt messages, comments and prayers. They mean more to me than you can know!

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This is happening...{brave gulp}

Stanford Double Lung Transplant Evaluation

Day 1 --

The day started with 12 vials of blood and a cup of pee : ) It could only get better, right?!

Overall, I felt like the day went better than I expected. I knew today was going to be an extremely long day and I prepared myself to be very uncomfortable during the barrage of tests. There were a lot of tests and they were uncomfortable but I was so grateful for the wonderful medical technicians who took care of me today. They were honestly so kind and considerate of my comfort level. I was pleasantly surprised and felt like so many prayers that I would feel strengthened to be able to handle this day were answered.

After the blood draw I had an echocardiogram with bubble study. I was unclear what the difference between an EKG and an echocardiogram was and today I had both, so I now know the difference. The echocardiogram is basically an ultrasound of the heart and takes images of the chambers, valves and blood flow. The included bubble study meant that they had to start an I.V. and quickly push saline towards my heart. Then they asked me to cough while they pushed it in so they could make sure there was no holes between the left and the right sides of my heart. Interesting. An EKG measures the electric activity of the heart and the heart rate.

The next study was a bone density scan. I learned that from age 0 - 30 we build bone density and from age 30 on, we slowly lose bone density... so I have that going for me : ) They scanned my lower back, hips and pelvis. It was minimally invasive and didn't take too long.

Okay, then I headed down to radiology for my chest x-ray and all I have to say about that is that my technician was seriously Cam from Modern Family. His oozing gentleness and kindness was one of the best parts of my day. I was actually trying not to laugh during the test because he kept telling me how great I was doing and thanking me for who knows what (holding my breath great! ... and positioning my body perfect!) I don't think he knew that I've had literally hundreds of chest x-rays. He was seriously so so nice and I could hardly stand his chubby adorableness!

We broke for an amazing lunch. Holy cow, after the required fasting since 8:00 the night before, I was starving!! My mom and I rewarded ourselves at the California Cafe just down the street from the hospital and it was delicious! I had a trio of yumminess with an open faced steak sandwich, a side of 4 cheese mac and cheese and a Caesar salad. As Harrison would say, it was a great "pit stop" for the "fuel" I needed for the rest of the day.

Next was the meeting with the Social worker and that couldn't have gone better. I really liked the social worker and felt completely comfortable sharing my thoughts, feelings and personal history with her. She answered lots of our questions and was super nice and genuine. It was a two hour appointment.

Then I endured the hardest part of the day. An hour and a half of PFTs (pulmonary function tests) with two failed attempts to draw a blood gas to start things off (a very painful arterial stick as opposed to a vein draw). The stabbing pain that shot up my arm and down my legs when she stuck me almost had me off the chair. Unfortunately, she was not able to get it. She was a sweetheart though and said it was more painful for her to hurt me than it was for me to get hurt and I possibly believe her. I could tell she felt really bad even though I kept telling her it was okay, that I have little veins and arteries and it wasn't her lack of skill.

I was a little amused/bummed when we did the first PFT and she thought there was a glitch in the test. I asked her what went wrong and she said, "well, this can't be right because it shows your FEV1 at 19 percent" Too bad it's my lungs that are malfunctioning and not her machine. I had to explain to her that there was no glitch.

After the PFTs I had my last test of the day, a CT scan of my abdomen, pelvis, chest and sinuses. This required another I.V. for the contrast solution. The tech told me that the contrast would make me feel warm and funny and that I would feel like I wet myself but not to worry because I wouldn't really. I am so glad he told me that because sure enough, when they pushed that stuff through my veins, I instantly had the weirdest sensation that totally felt like I had just peed all down myself! I would have been freaking out if he hadn't warned me!

Tomorrow is another day of tests and appointments and I feel confident that the strength I felt today will stay with me for the duration of this evaluation. I am so grateful for the prayers that are most certainly being heard and answered. I know that the love and support I feel is carrying me through this, and although I know this process will at times be overwhelming, I will continue to be more overwhelmed with the goodness of the people in my life and with the blessings that I feel the Lord pouring down on me.
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