“No oxygen.” PatientsLikeMe member Lori shares about life after surviving idiopathic pulmonary fibrosis

Posted August 3rd, 2014 by

It’s crazy to think how fast things can happen. The last time we talked with Lori, she was telling us about life on the lung transplant list and playing what she called “the waiting waltz.” And now – everything has changed. Just two weeks after we posted her third interview on the PatientsLikeMe blog in mid April, Lori got the call – they had a set of lungs for her. We caught up with Lori one more time, and fifteen weeks post transplant, she’s nothing but smiles. Check out what she had to share and don’t forget to follow Lori on her own blog called Reality Gasps. (Thank you Lori for being so open about your experiences with IPF!)

 

 

What was your reaction when you got ‘the call?’ You mention a whole range of emotions on your blog.

The call took me completely by surprise. I’d been admitted to the hospital a week earlier because we just couldn’t meet my oxygen needs at home any more. I was literally 10-minutes away from starting a procedure to suppress my antibodies (to help increase my somewhat slim chances of finding a match) when the nurse walked in and told me they might have lungs for me.  Actually she said they “might, might, might, might, might” have lungs – normally they wouldn’t have contacted me that early in the process, but they had to cancel my procedure just in case. I felt an initial jolt of adrenalin and couldn’t help busting out in a huge grin. I quickly tamped down my euphoria, though. There was still a long way to go and anything could happen.

An hour later when I heard we were moving forward, I burst into tears. A year’s worth of pent up emotion poured out through those wracking sobs. I couldn’t believe my miracle was so close. But wrapped up in my joy was guilt that my chance to live was coming through the death of another.

Until the moment they put me under, my emotions continued to cycle from near manic joy, to fear that the lungs wouldn’t be right, to anguish for my donor and his family. Everyone says it’s a roller coaster, but like parenthood, you can’t really understand what that means until you live it.

What happens between getting the call and going into surgery?

Since I was already in the hospital, there was no mad dash for me. When the team decided to move forward, I was sent down for pre-surgery testing — a chest x-ray and blood work. Then we waited, and waited for a good 12 hours. Finally I was sent down to pre-op at 2:00 AM to get ready for surgery at 3:00. They inserted an arterial line and an IV. And they checked and rechecked my drug allergies and medical history. I was the only person in pre-op, but I still had to recite my name and birth date for everyone who came by!

My surgeon arrived and told me he’d heard about my surgery early enough to make sure he got a good night’s sleep with plenty of time for breakfast. I’d brought a disposable camera to get pictures during surgery, so he talked me through his typical “shot list”. I couldn’t wait to see those beautiful new pink lungs!

Just before I was to head to the OR, the doc got a call from the retrieval team that we were delayed for an hour. He said this was very common — they had to wait for all of the teams to arrive before they could start. We were delayed twice more as teams continued to fly in. When I finally made it to the operating room, I was surrounded by people and equipment. They explained each step as they got me situated on the table, and then the anesthesiologist placed a big mask over my face. Thankfully, I remember nothing until they removed the breathing tube three days later.

Fifteen weeks post transplant – how’s recovery and rehab going?

Full recovery takes about a year, but I am astonished at how far I’ve come in just three months. I went into surgery pretty weak because I didn’t have the energy (or the breath) to move much.  A lot of people told me to keep my legs as strong as possible and I quickly learned why. Post-surgery, I was on high-dose prednisone, which is very hard on the quadriceps – my thighs felt like jelly. Most people are up and walking shortly after their breathing tube is removed. I ended up needing a trach, so it was about a week before I took my first steps. I walked nearly 200 feet that first day and increased my distance and strength every time I hit the halls.

The day after I left the hospital, I returned for my first out-patient rehab appointment. I walked 15 minutes on the treadmill at a smokin’ 0.5 mph. Within a few days, I was up to 30 minutes and started to increase my speed. Now I’m walking two miles a day around the neighborhood and am working hard toward a 15-minute mile. It’s the hardest work I’ve ever done, but it is so worth it!

The one thing that really took me by surprise was the mental part of rehab. Before transplant, my body worked very hard to breath.  Shortness of breath meant my body needed more oxygen. But after transplant, neither one of those was true anymore. It was difficult to accept that I didn’t need to consciously breathe – my lungs could take care of that on their own.  After a week, I would periodically “forget” to breathe and be surprised to discover my lungs were working just fine. When I was walking laps around the halls, I would periodically get short of breath and start to panic – there was no valve to turn up my O2!  The pulse oximeter showed my sats were well into the 90s. I was short of breath because my body was weak, not my lungs. Thankfully, breathing is once again second nature!

What comes to mind when you think back on everything you’ve gone through – diagnosis to transplant?

I went through the same fear that most people do when they are diagnosed with IPF. The prognosis is pretty bleak: no treatment, no cure, progressive. But I decided early on that I was going to live my life as normally as possible – and do everything I could to prepare myself ready for transplant.

I continued to work for nine months, using oxygen at the office. But after two pneumonias, it was clear that my body was too fragile for the daily grind.  Without work distracting me, priorities and perspectives shifted. Everything suddenly had a sense of urgency. There might not be time “some day” to get back in touch with that friend, or tell my brothers how much they really meant to me. I had to let go of the things that had consumed me, like worry and regret, so I would have time and energy to do work on my life “to do” list.

I worried that after transplant, when things returned to normal, I would soon forget the lessons I’d learned. This whole experience has been a journey toward gratitude, and I realize now I will never be the person I was before – physically, emotionally or spiritually. Every morning I give thanks for my first waking breath. Throughout the day, I find the most delightful surprises – like watching a mama squirrel move her babies to a safer home. And sometimes I just stop and marvel at the air passing in and out of my lungs, lungs that once breathed in someone else’s chest. I spent three years quietly saying goodbye to all the things and people I loved. Now I get to spend the rest of my life saying “hello” again!

Additional comments from Lori

We just returned from our celebration trip to Sanibel Island, one of my favorite places in the world. For the first time since my diagnosis, I was able to walk the beach without tanks in tow. The image of Sanibel’s shell-strewn beaches and the memory of that rich briny air kept me pushing forward as first I struggled to breathe in ICU, and then sweated my way through PT and rehab.

At least once a day while we were there, my husband whispered to me “No oxygen”. It felt like a dream, a wonderful, amazing dream. We’ve been going to Sanibel for 25 years. It’s a huge part of our family tradition, and making it back there was an important milestone for me. A plaque on the wall at our beach condo read “If you’re lucky enough to be at the beach, you’re lucky enough.” That’s pretty much the way I feel about everything now!


10 Comments

  1. What a wonderful and encouraging interview. Lori has been and continues to be a blessing to many, many people. God bless.

  2. […] It’s crazy to think how fast things can happen. The last time we talked with Lori, she was telling us about life on the lung transplant list and playing what she called “the waiting waltz.” And now – everything has changed. Just two weeks after we posted her third interview on the PatientsLikeMe blog in mid April, Lori got the call – they had a set of lungs for her. We caught up with Lori one more time, and fifteen weeks post transplant she’s nothing but smiles. Check out what she had to share and don’t forget to follow Lori on her own blog called Reality Gasps. (Thank you Lori for being so open about your experiences with IPF!)  Read the full interview […]

  3. What a nice piece and very familiar. I’m 3 years out from a single lung transplant and still have days when I stop and appreciate that I can now breathe, even though on cold days I can feel just one side fill with cold air, strange but great. Its at those moments you thank your lucky stars that you made it through what is the start of the transplant lifestyle and of course the family of your transplant donor.

  4. Could you share with me the name of your pulmonologist and the hospital where the transplant was performed? I am an IPF patient. Moderate case for past four years, but now starting to progress into the coughs. I’m on the left coast and in L.A. I’m told the typical transplant is a single lung. I was pleased to note that you received two lungs. Thank you for you comments as I’ve found them quite valuable.

  5. I love your comment “journey toward gratitude”. I am in the early stages of pre-transplant assessment. I was diagnosed with IPF five years ago, and I am still working, although I have definitely slowed down. I am on 4 lpm oxygen.

    It is very helpful to me to hear your experiences and I wish you a speedy recovery and a long life. Thank you for sharing your experiences.

  6. Douglas – I was recently (July 15th) transplanted at Cedars-Sinai and was so impressed with the hospital, the lung transplant team, the doctors, and the nurses. In fact, I don’t have one even little complaint…the whole experience was really impressive. Oh, and I’m doing fantastic! I received a left lung and was out of ICU in 36 hrs and out of the hospital in 8 days. If you have any questions you can email me. ~Deb

  7. Great interview Lori. I am so happy for you. I also was lucky enough to get a double lung transplant 9 months ago. Going forward with gratitude is exactly how I feel about things too. The road to recovery hasn’t always been smooth and I have had a few problems but I am slim, healthy and pretty fit and can now even run for a couple of miles without any problems. I have spent the last week tramping around New York City with my 18 year old agile daughter and the only problem I have had is sore feet. I feel so much gratitude to my donor, my doctors, my family and friends and enjoy my life so much that I am almost grateful that I needed the double lung transplant to teach me how to properly value people and the rest of life’s great gifts. I wish all of you to have the same lucky outcomes that Lori and I have had.

  8. “It was difficult to accept that I didn’t need to consciously breathe – my lungs could take care of that on their own.”

    That is the hardest part of this disease to try and explain to others.

    Thanks Lori for sharing your story with us. I’m in the early stages of transplant evaluation and it is nice to hear stories from the other side 🙂

  9. My mom has Interstitial lung disease we have been trying to manage it since 2013 we thought we had it under control as ridiculous as that might seem till a week ago she cought a viral infection which took her Condition to the worst it’s ever been we thought this was it… after four days at the hospital (Olive View)she is back home at 3_4 Lpm her saturation is at 75~80% without oxygen cannula stable I guess.. its hard to watch her constant struggle with this disease..but through the grace of good and the wonderful doctors,nurses, and ipf community it’s been bearable we met the cedar sinai lung transplant team on Fri. She is being evaluated.. it is a scary process with many test we fear they may put too much stress on her and agitate her condition.. but after reading, researching we feel more at ease with going foward my heart goes out to everyone dealing with this or any type of serious disease I know there are worst things out there I pray for them I pray for you and I hope you all stand strong do not go quietly into that goodnight rage on! Rage on! Hope never dies even after the body is gone.

  10. Dear Community

    We are together and we can be thankful for this site….

    Over the years, medical access has improved for those with chronic illness.

    Additionally a sense of patient rights and responsibilities has become more accountable.

    Regrettably, I am being denied life care by a bully authority.

    Thank you for taking time read this….most of all please pray

    Sincerely

    SNH

    Special Needs Help

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