Pink, Shiny and Perfect!

post-tx

Look Ma, no hose!

Seven weeks ago today on April 15, I had a double lung transplant at Barnes-Jewish Hospital in St. Louis. And what an amazing, confusing, awesome, scary, thrilling, crazy, frustrating, inspirational seven weeks it has been.

I will dedicate a series of posts to my transplant experience. And yes, I will be giving you all of the gory (and not so gory) details.  On this, my first post following my transplant, let’s dive in at the beginning — the Call and the Surgery.

A little background first:

I’d been in the hospital for about a week, trying to stabilize after an exacerbation of my IPF. I was on the Optiflow, a special machine that heats and humidifies oxygen, at a flow equivalent to 20 liters. Moving required the addition of another 15 liters via E tank.  The Friday before transplant, my doctor had basically given me 3 to 6 months. In short, I was fading fast.

At the same time, we were discussing plasmapheresis, a procedure that runs the blood through a machine to remove and temporarily suppress the production of antibodies. My heavy antibody load, which ruled out 78% of the general population as potential donors, was making it difficult to find a good match. Pheresis was a 50-50 shot, but it was the only option we had left to try to improve my chances for transplant. When I think back now, I wonder why we agonized over this decision — it should have been a no-brainer!

The Call

As it turned out, I never went through pheresis. About 10 minutes before I was to start the procedure on Monday, April 14, my nurse Leann came in and told me, “We might, might, might, might, might have a donor for you.” (Yes, there were 5 “mights”. I counted them.)

The moment I heard there might be lungs for me.

The moment I heard there might be lungs for me.

When Leann walked in, I was finishing up pulmonary rehab and Yvonne, my therapist, had just quipped, “Either I’ll see you tomorrow or you’ll be getting new lungs.” Yvonne was just one of many little Divine Messages that came through during that life-changing 24 hours.

The news sent an electrical current ripping through my body, from the top of my head to the tips of my toes. My first comment was, “Really?”, followed by a huge grin. Not exactly the brilliant statement I’d dreamed about, but I was caught completely off-guard. I looked over at my husband in disbelief, then quickly took a deep breath and reminded myself we had a long way to go before those five “mights” became the real thing.

An hour later, Leann announced we were moving forward. I burst into tears and made a soggy mess of my husband’s shoulder. Though we were far from a solid “Go”, we were on our way to finally realizing what we’d been working toward for so long. At the same time excitement and emotion overwhelmed me, my heart broke because I knew someone had died suddenly and their family was wrestling with one of the most difficult decisions they would ever face. I bowed my head to pray — for them, for my donor, for my family and for me.

Waiting_1

Homework helped pass the wait.

I went down for pre-transplant testing — blood tests and a chest x-ray.  And then we waited. About 10 p.m., I learned that I would be going down to surgery at 2 a.m.  It was a go.  Another miracle. They’d found a donor who had almost no antigens — my antibodies suddenly were a non-issue.

The next four hours were a blur of texts back and forth to my family on the West Coast, as well as prayers and good wishes from my Facebook friends across the country.  Two a.m. finally came and we headed downstairs.

 

The Surgery

pre-op

Waiting in pre-op. The family is sitting in front of me, munching away!

I was the only patient in pre-op, so my family was able to sit outside my cubby and chat with me. What I remember most is the sound of munching — they were chowing down on chips and soda. I, of course, had had nothing to eat or drink since around 2:00 that afternoon. My stomach rumbled mercilessly. But the mood was upbeat, and when my surgeon arrived, he announced that he’d had a good night’s sleep and a full breakfast.  He was ready to go.

Surgery was delayed three times as more transplant teams arrived at the donor site. The generosity of my donor family cannot be overstated. Because of their selflessness, they turned a profound loss into a second chance at life for many others. I am eternally grateful!

All the instruments, prepped and ready!

All the instruments, prepped and ready!

I went into surgery sometime around 6 a.m. on Tuesday, April 15. I’m a little fuzzy on times and details because by then they’d given me a happy shot.  I remember sliding over from the stretcher to the operating table. One team member read off the names of everyone there and what their job was (they tape the entire procedure). And then they placed a mask over my face and in seconds I was out. I’d sent a disposable camera into the OR with my surgeon, the amazingly gifted Dr. Bryan Meyers. The photos below are from my surgery:

Heart/lung machine

Heart-lung bypass machine

The heart-lung bypass machine.  In some transplants, they can let one old lung do the breathing while the other is removed and a new lung transplanted. My old gaspers were in such bad shape they had to use the bypass. I received my very first transfusion because the bypass requires extra blood volume. Technology is simply amazing!

Crappy lung

Crappy lung

My diseased right lung. It’s amazing that something this dark and shriveled could process any oxygen at all. Can you say “God’s perfect timing”? I couldn’t have waited much longer.

Warming Up 2

Pink, shiny and perfect new lungs!

My shiny new lungs! The one at the bottom is still covered in its protective cloth. They’re so pink they almost glow! Angie, my scrub nurse, said she’d never seen lungs so pink!

Dr. Meyers performing magic!

Dr. Meyers performing magic!

Dr. Bryan Meyers implanting my shiny new  lung. This photo brought tears to my eyes — at last, no more gasping. This moment marked the beginning of a brand new life for me!

Thumbs Up!Angie gives us the thumbs up — all went well!  I know this is me because I recognize the feet!

Old lungs packed for research

Old lungs off to the research lab.

My old lungs, ready to go to the research lab. I donated them in hopes they will help researchers discover better treatments or even a cure for pulmonary fibrosis. The small container at the top includes unused pieces from my new lungs. Since my donor was 6 feet tall and I’m 5’4″, Dr. Meyers removed the upper lobe of my new left lung and did a wedge resection on my right. The day after my transplant, Dr. Meyers went back in to remove some packing and clean up any blood clots or incidental bleeding. This is standard procedure at Barnes in many lung transplant cases. He saw that my right lung was still a little too big, so he removed a second wedge. I’m happy to say that they fit perfectly now and are working beautifully.

By 1:00 p.m. I was out of surgery. The whole thing took about 6-1/2 hours.  I remember nothing until they removed the breathing tube on Friday, April 18 — Good Friday! But that’s a story for another post…

Before I go, I want to thank everyone who prayed for me, sent me notes of encouragement and positive energy, and offered advice and insights from the perspective of “being there.” I couldn’t have done this without you. And to my donor family, thank you for giving me life. You are and will remain in my heart and in my prayers forever.

 

 

 

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55 thoughts on “Pink, Shiny and Perfect!

  1. I cried reading your post, beautiful! My dad was diagnosed 3 weeks ago so this is all so new to us. One thing we do know is he is 2 yrs past the transplant age.
    Thanks for sharing your story.

    • How old is your dad, and where is your transplant center? If he thinks transplant is an option he really wants to explore, take a look at other centers. They all have different criteria — especially when it comes to ages. Good luck, and blessings to you and your dad. Stay strong!

      On Wednesday, July 22, 2015, Reality Gasps wrote:

      >

  2. I love the way you told your story. I just celebrated my 4th (second).birthday on May 24. I had my double lung tx at the Cleveland Clinic. They are amazing there too and have an excellent survival rate as well! I also had IPF. I was diagnosed in 2005 and has my TX in 2010. I was on the list for 40 days (Cleveland has one of the shortest wait times in the country, on average) Your description of the emotions you feel when u get the call were spot on. I knew from the second they told me the found a potential donor, that this was it. It would happen that day. Intuitive maybe? I just never had a doubt! I only live about 35 miles to the south of Cleveland Clinic and it was a crazy drive to be sure! I thank the Lord that they found your donor in the nick of time. I pray for your complete recovery and pray for your donors family that they found some peace in helping others get a second chance! Please keep up the great blog!! Ps. I didn’t have pics taken during the survey but made my husband take pics a long the way following surgery! Your damaged lung pic is unbelievable!!

    • Hi Monica
      I guess my first question to you is. Did you have to lose any weight before you could have the Transplant? If so I need to know how anyone can do it? I can’t walk very far at all. and I need to lose 30 pounds, I talked to my doctor yesterday and I asked him what am I suppose to do since I really can’t walk? His reply was I guess you have to starve yourself. Well what kind of an answer is that? If I don’t lose the weight soon I really don’t think I am going to much time left to worry about it. My IPF is moving very rapidly. But like I told Lori before I am a fighter and I am trying to lose the weight.
      Thanks for listening have a great day and Congratulations on your Transplant.
      Bonnie

      • Bonnie,
        Are you doing pulmonary rehab? As bad as I was, I still did rehab. That’s important to prepare you for transplant and it will give you some activity. Check out my post “A Weighty Issue” for the plan I used. I got a set of pedals that sit on the floor so I could pedal periodically throughout the day. They can also be put on a table to recognize your arms. Good luck.

    • Monica,
      Congratulations! Four years out is fantastic! I take my inspiration from stories like yours. Cleveland Clinic is a wonderful center – and you are blessed to live so close. We live about 30 minutes from Barnes

      We took photos of all my milestones as well. The next big one will be Lincare loading my LOX bases and concentrators into the truck. Can’t wait to kick those tanks to the curb!

  3. Congratulations, I am happy everything went so well for you! How were you feeling leading up to the surgery? Was there a chance that they told you that you may not survive the surgery? How are the anti rejection drugs? Any side effects so far?

    • Hi Kelly,
      Thank you! It’s uncanny how far I’ve come in 7 weeks — but then again I can say the same thing for everyone I see at rehab. Give the body a decent pair of lungs (and be willing to work hard) and it’s amazing what can happen.

      Before tx I was starting to fail. I was.admitted to the hospital a week before my transplant because my sats kept dropping into the 60s at home. I was on 20 liters in the hospital, 30-35 when they got.me up for rehab.

      We met with the surgeon when I first went on the list to go over the usual disclaimers as well as answer questions. Barnes has something like a 96% survival rate on the lung tx surgery itself, so I wasn’t worried. Their one year survival is 88% — better than the national average and.one of the best in the country.

      As for the meds, I am lucky because I haven’t had any major side effects — stomach and GI are fine. My sugars are ok, too. I do have mild tremors (i gave up knitting and my handwriting isn’t the best), but I can raise a glass just fine and have no problem feeding myself 🙂 I use a 4-compartment, 7-day pill container and alarms on my phone to make sure I take my meds on time.

      I had some pain with the chest tubes and my chest got sore in the hospitall from working to cough up gunk. Beyond that I’ve mostly had soreness.from weak muscles, which is getting better as I rehab.

      Talk with your center about their stats — and with your surgeon about his/her experience. I’m sure you will find that the people who work in these centers are exceptionally trained and highly experienced. If you don’t get that sense from your center, find another one!

      Are you listed yet? If so, where?

  4. Lori, thanks so much for this fascinating write up about your surgery. And the doc even agreed to pictures? I think they really love you at that hospital….like all of us do! I have printed a copy and will let anyone I meet who is interested read it.

    The picture of those lungs with the contrast of color was just unbelievable. If I didn’t know better I would think you had been a smoker. I know how thrilled you were to learn that your donor family will be saving lots of other lives with additional transplant organs.

    A Prayer for Lori–Thank you Lord for giving Lori the gift of life a second time. She was willing to do the hard work, and with you walking beside her every step of the way, she is alive and well today. And thanks for putting together the great team of people at Barnes who were there every time they were needed and made it all happen. I praise you Lord for what I know was a true miracle from you…a gift to Lori, Rick and the kids as well as a gift to Lori’s West Coat family and all of us who LOVE HER! Amen

    • Joe,
      I pray that your call comes soon and all will go well. Dry runs are frustrating, I know, but they are also a blessing. Those weren’t the right lungs for you. Blessings to you and your family — and to your future donor’s family, too.

      • My second call came June 29th. I received two recycled lungs June 30th.
        Five days in ICU, nine days on the transplant recovery floor. Then six weeks staying near University of California San Francisco medical center for followup and tests.
        I’m back in Pismo Beach now with my wonderful caregiver wife enjoying walking on the beach without carrying oxygen.
        My three month CT scan, PFT, and bronchoscopy all came back good. I’m a happy camper.
        It took me almost two months to get my digestive system in balance. I still have tremors in my limbs and core. That should lessen as I build my strength and regain some of the twenty pounds I lost.

        Joe H, IPF diagnosed by biopsy 1/10/12 at UCSF, UNOS listed 3/27/2014, double lung transplant 6/30/2014

      • Joe! I’m so excited to hear your second call came and all went well. You truly live in God’s country — how wonderful to have daily walks on the beach as.part of the rehab. I have my 6-month clinic and bronch next week. I feel awesome, so I’m not anticipating any issues.

        I still have a slight tremor in my hands which is worse when I’m tired. I will be dropping g to 5 mg pred soon and I hope that helps.

        Keep walking everyday. Hand weights, core exercises, it all helps. Post a picture — I’d love to see your miracle!

      • Heading to the operating room, non functioning left lung removed, first good lung going in.

      • My October 7 reply was in response to your October 4 comment about a picture.
        I attached three pictures:
        1. Heading to the operating room
        2. Pic of bad left lung
        3. Pic of new lung.
        Without the pictures, it sounds like I’m heading back into surgery. Not the case.
        I’m doing well and progressing with my recovery.

  5. Lori I have told you this before and I will tell you this until I die. you are my Inspiration, Your the one who keeps me going on. but I am telling you, I just wish someone will magicialy swish their wand over me so I can lose this stupid weight. I want to look like you. NO more hose hanging off my face. I want to get to go to my Granddaughters High school graduation that I promised her I would be at. but I also have 7 more grandkids after her to attend to also.
    Thank you for sharing everything I was very impressed and pushing myself even more.

    • You can do it, Bonnie! I have faith in you! My daughter’s graduation was a big motivator for me too. Does your tx center have a dietician you can work with? That helped me a lot. You are in my prayers — and you will get there!

      • Lori
        I don’t know if my Transplant U.W. place has a dietician or not I am sure they do, but I live to far away but I do have a dietician that I am dealing with at my clinic.
        I am trying and seeing you with out the hose on face. lol (cordless) and the huge smile that you have. you look fantastic, I guess that is what inspires me about you the most. I am so happy for you. and I am a very stubborn and I am going to fight this till I just can’t fight no more but I will win.
        take care
        Bonnie

      • Bonnie,
        You have a true Warrior attitude and that is why I am certain you will succeed. UW is an incredible center, so you are in great hands! I used an online food tracker which helped me keep a close eye on everything, prepacked snacks and preplanned meals for the week. You can do it girl! I can’t wait. to see a picture of YOU, cordless and grinning!

  6. Thank you for sharing your story! It is motivating me to start to loose the weight and get lung transplant. I know it is not easy since I saw you step by step but seeing the smiling face with no hose connected to you. And looking healthy! I know you still have road ahead but sharing this really helps us Pf’ers. Glad you are strong enough to start writing in your blog. God Bless you ❤

    • Many blessings to you, Susan. It’s hard work, but there is such joy when you finally reach your goal (whether that’s weight loss, getting listed, transplant, etc.) This is an ongoing journey and it’s wonderful to know that I have such special people joining me. Good luck to you! I will keep you in my prayers.

  7. Hi Lori!
    We are thrilled for you and your progress-keep the updates coming! We miss you and we are so glad for your news and we know you’re right where you are supposed to be. Keep it up, friend! Your Pulmonary Rehab Friends at St. Luke’s Hospital.

    • Shari,
      Thank you to St. Luke’s rehab for your support from day one. You guys took great care of me and played a huge role in getting me ready. I miss you all and hope to be in to say “hi” in the next few weeks!

  8. What amazing story Lori!!! You described the experience to a tee. I wasn’t in the hospital but the excitement was the same. The testing was the worst part was the waiting but the words “IT’S A GO” was like a party!! Thanks for sharing

    • It’s impossible to adequately describe what it feels like to finally know you have a second chance. It’s a good thing I was in the hospital — my husband and I were so overwhelmed by the news we probably would have crashed on the drive in!

  9. Thank you for sharing your story.I am awaiting a dbl lung transplant,was listed 17 months ago.April I was on life support for a couple weeks,and also like yourself have an antibody issue.Now they have decided to go ahead with or without the antibodies in new lungs.Can you suggest what I need to take with me when I get my call? Best of luck and breathe well 🙂 Thanks for the read,reminding me there’s still hope.

    • Brenda, I am praying your new lungs will arrive soon. All you really need are the basics — a robe, toiletries, brush or comb, lip balm. I’d say also bring your phone, camera, and something to keep you occupied (i brought my kindle so i could read, do email, facebook). You will be totally out of it for a few days until they remove the breathing tube. My focus was on comfort, so if you have a soft blanket you really love, wash it well and bring it along. If you want pictures from surgery, ask your sugeon what their policy is. I provided my with a disposable camera still sealed in its foil pouch. Good luck to you! Where are you listed?

      • Thank you.I am listed in Edmonton,Alberta.Its about a 5 hour drive from where I am.I will repack once again lol.Did pick up a disposable camera,hope they will take a few pics for me.The best to you and your recovery.I cant wait to be tubeless myself :). Look forward to an update on your journey. Brenda

  10. Thanks for sharing this amazing experience! I am thrilled for you and have learned so much about this whole transplant business thru your journey….bless your heart AND your lungs!

    • My brother-in-law is a cardiologist and even he is amazed by the miracles of medicine and medical technology. I am so blessed to live in a time and place where all of this is available!

    • Thank you, Linda. It is simply amazing to be able to walk down the hall and breathe on my own — without tubes, tanks or machines!

    • It’s the hardest thing I’ve every done, but I can’t stop smiling! My husband and I say I am now “cordless”, and that is a very amazing thing!

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