9 posts tagged “lung transplant”

“I thank my donor every day for this gift”: Member Laura shares her lung transplant story

Posted March 17th, 2017 by

Meet LaurCT, an active 2015-2016 Team of Advisors alum living with idiopathic pulmonary fibrosis (IPF). She underwent a left lung transplant at Brigham and Women’s Hospital in Boston in January and recently shared her experience with us.

How are you feeling these days? 

I am feeling great. I’ve had a couple bumps in the road but nothing that the transplant team hasn’t seen before, and [they] handle it immediately. It was scary for me but the team is great in communicating that these [post-transplant] issues happen to some and not to worry. I like that communication because it sets my mind at ease.

How long had you been a candidate for a lung transplant? 

I was evaluated at Brigham and Women’s Hospital (BWH) in January of 2014 and accepted into their transplant program. At the time, I was classified as too healthy to be listed, however I was being watched and met with them every four to six months. In October 2016, BWH suggested I be re-presented and get listed on UNOS (the United Network for Organ Sharing waiting list) for a transplant. After finishing some additional testing, I was listed in Boston Region 1 on December 16, 2016. I also finished the evaluation process at New York Presbyterian Hospital/Columbia around the same time and about December 8, 2016, I was listed on their regional UNOS list for a transplant.

You shared in the forum about having a “dry run” in December 2016, when you were called in as a backup candidate for a transplant but the lungs went to another person. How did you feel when that first call fell through for you? 

As I said in the forum, my daughter and I went to NY Presbyterian with no expectations. While driving, we were calm and I think we both knew this would be a dry run. We didn’t even really call anyone to let them know we were heading there. It gave me comfort to know that the person who needed those lungs the most got them. Many times the lungs are not usable and these are now breathing in someone’s body, giving him or her the gift of life.

What was it like to get “THE CALL” again, leading up to your actual transplant? 

January 6 was a difficult day for me emotionally. We terminal patients have those days, accept them, then put on a happy face for our loved ones. My daughter made supper (not a usual thing – haha) and we were just about ready to sit down to eat. It was 5:30 p.m. My phone rang and without looking at it, we knew. My daughter got up and went upstairs to get ready as I was answering the phone.

I was a primary [candidate] for a left lung, and we knew in our hearts this was it. We headed to Boston immediately. I headed into surgery at 11 a.m. on January 7, 2017. While I was in surgery, my daughter received a call from NY Presbyterian saying they had a lung for me. That rarely happens, if ever. My journey was meant to begin on January 7 at BWH. That was the day there was a 25-car pile-up on the way to New York. I would have never made it in time [for the transplant there].

Can you share some more of your transplant surgery experience with us?

I know that when I woke up after surgery I did not have any pain – I still have not had any pain. They put me on .5 liter of oxygen after, and when I woke in ICU, I took it off. I was breathing on my own from the beginning. My surgery finished at 5 p.m. (ish) on January 7. I did everything they told me to and was released to go home on January 13. Six days after a left lung transplant. This was meant to be.

 

What has been the most difficult or surprising part of your recovery? 

I had a couple of bumps in the road but those were nothing. I need to stress that the most difficult part is the emotions for me and for my caregiver. We don’t stress the caregiver enough. As my daughter said, the prednisone has turned her 66-year-old mother into an adolescent child at times. That is difficult for any caregiver to handle. It’s a 24-hour job for them. We just need to recover, but we can’t do it without them. I’m blessed to have her and she says we will get through this because the alternative is not an option.

You’ve referred to transplant day as “Miracle Day.” What would you say to your organ donor? And to people considering organ donation? 

I wake in the morning and thank my donor and the donor family every day for this gift. I never thought about organ donation much until a friend of mine needed a kidney and then I needed a lung. Doctors perform miracles every day not only by transplanting an organ but using the right combination of drugs to keep our body from rejecting it. Giving the gift of life to someone else is the most selfless act someone can make, and those of us who need it will forever be grateful. I plan to honor that donor by doing my part in staying alive.

How will you use PatientsLikeMe now that you’ve had a lung transplant? 

I’ve been pretty vocal [asking] about the post-transplant experience when a few of the PatientsLikeMe folks had their transplant. It’s the only piece that we don’t seem to share. I get it – I’m about two months post-transplant and I’m trying to recover. I plan to keep giving back. I will begin posting/blogging again about my experience so others also will know that whatever is happening post-transplant, some others have the same issues. Sharing our experiences and our data is important, and it makes us feel less alone. People like John_R, who I talk to – he says he has had the same experience or experienced something else. It helps those of us who follow to get through it.

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“These lungs are a precious gift” — Member John shares his new “new normal” for National Donate Life Month

Posted April 4th, 2016 by

April is National Donate Life Month, an annual awareness effort to encourage Americans to register as organ, eye and tissue donors — and to celebrate those who have donated and saved lives.

We recently caught up with IPF member John (John_R), who we interviewed back in 2014. At that time, John described what his “new normal” was like living with his condition. Today, he shares his new “new normal” after a double lung transplant.

Below, John talks about how he’s able to breathe more easily and exercise again, and how grateful he is to his donor family: “I think of them often, and strive to honor their gift to the best of my ability.”

John (second from left) with PatientsLikeMe staff at the Stanford Medicine X event.

When we chatted with you in 2014, you talked about how living with IPF and being on oxygen was your “new normal.” Last year, you had a double lung transplant. Tell us what your new “new normal” is like.

My “new normal” has really changed following the lung transplant. First is the fact that I no longer require supplemental oxygen. Oxygen tanks, O2 generators and all that plastic tubing are no longer a part of my life.

My new normal does include a fairly strict routine for meals and taking my medications. I take over 40 pills a day split up into six doses a day. Half of the medicines help prevent rejection and infection, and the other half are medications and supplements that counteract the side effects of the first half. This has all become a routine and is easy to keep up with. I sort my meds once a week and am good to go for the next seven days.

Another important aspect of my new normal is avoiding infection. The anti-rejection meds suppress my immune system which increases my risk of infection. Not only is the risk in catching a virus or infection increased, once I get sick, I get really sick. So I take precautions. During cold and flu season I avoid large groups of people. I grocery shop in the off hours, and take full advantage of the sanitizing wipes that stores are now offering in the shopping cart areas. I often wear a procedure mask if out and about where infection is possible. We take care with food hygiene and sanitation at home. These are all habits that we have developed and are now easy to follow.

The best part of my new normal is that it is pretty much that, normal. I can breathe. I can go for a walk around the neighborhood or the mall without dragging along my tanks and tubing. I can walk over 10,000 steps a day, and I can breathe. My new normal is pretty awesome.

Some of our PatientsLikeMe staff met up with you at the Stanford Medicine X event back in September where you spoke about your use of devices. Can you share with us how using devices impacted your experience?

Pre-transplant, I used my Pulse Oximeter (Pulse Ox) to ensure that I was getting enough supplemental oxygen. I used a data logging pulse ox to help my medical team understand my needs and adjust my oxygen prescription as necessary. As necessary was always more. I used my FitBit to help track my steps and help ensure that I was getting in a daily step count. “Keep moving” is a very important goal for the IPF patient. It is not always easy, but important.

Post transplant my pulse ox helped catch an acute rejection episode early enough that, with treatment, the episode was halted and my lungs had zero damage. Self monitoring is a very important part of an IPF patient’s/transplant recipient’s health plan. Maintaining adequate blood oxygen concentration is very important for the IPF patient, and tracking daily vitals is important for the transplant recipient.

How has life changed since your double lung transplant? Have there been any challenges you weren’t expecting?

Life after transplant is so much better than living with IPF. First, I no longer have an expiration date, I have a future. That wonderful gift provided by my donor family is worth all the issues associated with the transplant procedure.

I am healthier and in better shape than I’ve been in for decades. I climb rock walls for fun now.

Yes, there is a long list of things that I’m not supposed to do, but the list of things I can enjoy is so much longer that the “no” list is insignificant.

My transplant team did a very good job of setting post-transplant expectations, but there have been a couple unexpected issues. My post-transplant insurance plan didn’t work out as expected, but we are dealing with that, and returning to work is a bit more difficult than expected.

I do still, at times, find myself getting short of breath. When that happens I notice that I’ve fallen back into my IPF breathing pattern. It surprised me just how long it took to learn how to breath normally again.

Were you able to reclaim any bits of your old life that you had to give up because of your condition?

I can go for long walks, off the path and enjoy nature. I’ve found an exercise routine that I really enjoy, and I can work hard without worrying about blood oxygen levels.

In a very real sense, life has returned to normal.

The last time we talked, you said you planned on spending a lot of vacation time with your family. Now that you’ve had the transplant, what’s different about making vacation plans and how you spend time with loved ones?

Visiting grandchildren comes with some issues. Everybody has to be healthy, or we just can’t go (or they can’t come). We pretty much have to limit most visits to the summertime. We found a towable RV that would work perfect for us, but can’t afford it at this time. A small towable RV would really help us get out to see family much more often

Is there anything you think patients considering transplants should know?

If you are considering a lung transplant, go talk with a transplant team sooner than later. I almost waited too long. If you are too early, no problem, they will let you know and let you know when you should return. If you are not too early, the sooner you see them the sooner you can go through the process and get on the list.

If you are heavy, lose weight. Seriously, the lighter you are the easier your recovery will be. You will be standing very soon after you are conscious. Also, do your best to maintain or even improve your core strength. While you are watching TV, stand up for every commercial. Keep an eye on your oxygen levels and do what you can to keep your legs as strong as you can.

If you can, go to pulmonary rehab, they will get you moving and help with your oxygen use.

A lung transplant is a scary proposition, and the decision to pursue one is a very personal one. My family and I are all very happy that my sweetie and I made the decision to try for a transplant. We have a new future.

I would like to just take a moment to mention my donor family. We received the call that there may be a set of lungs available to us on December 31, 2014 — New Year’s Eve. NYE will never be the same for this family, it will always be associated with loss. During one of the worst days of their lives, this family made the decision to share the gift of life with my family and others. I cannot thank them enough. I think of them often, and strive to honor their gift to the best of my ability. These lungs are a precious gift and I do my very best to take care of them.

 

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“Stiff Lungs” -Ian’s Personal Journey from Idiopathic Pulmonary Fibrosis Diagnosis to Lung Transplant

Posted March 4th, 2013 by

“Short of Breath? See your Doctor,” said the poster in the pharmacy. I’d been short of breath for some time, but put it down to an unhealthy lifestyle, being 58 and being overweight. The poster encouraged me to visit my doctor, which I did. He sent me for a chest X-ray and I could tell by the reaction of the technician that he’d seen something. He discussed the X-ray with a doctor who then arranged for me to see my own doctor that afternoon.

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My doctor explained the X–ray had shown I had ‘stiff’ lungs and that I should see a specialist a few days later. At this point I wasn’t too concerned. I was still convinced I would be told to just exercise more and take some pills. After seeing the specialist and having more tests, he told me that I had Idiopathic Pulmonary Fibrosis (IPF) and explained what it was. He also told me that left untreated I could expect to live about another 18 months! You can imagine going home and telling this to my wife and kids.

I’d never heard of it before so the first stop was the Internet. Most of the sites you visit frighten you to death. You find out the mechanics of it, the prognosis, but not how people live and deal with it. PatientsLikeMe gives you direct access to other people in your situation. It’s nice to hear from people who have had it for many years, what drugs they take, how those affect them, what they are doing themselves to keep a good quality of life and so on. Everybody is different of course, the illness progresses differently in each person, so it’s interesting to see all the variations in medication.

I have to say, I never believed at any point that I was going to die. I was bloody determined to have a transplant. I wasn’t going to die. I had to meet certain criteria to get on a lung transplant list and one thing was weight. I weighed 118kg (260lbs) when I was diagnosed and had to be 90kg (198lbs) to get on the list. So I started walking. I could only make it half a mile to start, but eventually got up to 5 miles with the help of an oxygen tank. It took nine months, but I dropped the weight. Then, everything happened very fast.

I was accepted onto the transplant list on a Friday, got a 12am phone call on Sunday about a possible transplant and was wheeled in for surgery that same day. They could only harvest one lung, but it was better than nothing. When they were taking me back for surgery I remember saying “bye” to my wife. I could tell she was hoping for something more than that. I probably should have added the ‘see you later.’

There were a few complications with my ribs post surgery and sometimes when I walk upstairs it feels like I only have one lung, but I’m glad to be alive, really. I was and am lucky to have a wife who has worked as hard as me, if not harder, to help make all this possible. Having support around you does make a difference. Sometimes you don’t realize it, sometimes you take it for granted, sometimes it’s frustrating having to have help doing things you used to easily do. And it’s great when you can give things back, like a nice roast dinner or some favorite biscuits that are within your capabilities. I do consider myself to be very lucky.

Ian is a member of the growing IPF community on PatientsLikeMe where people track, connect, and learn how to manage the condition together. Every experience shared by patients about this rare lung condition is also contributed to a data set on PatientsLikeMe that helps researchers uncover new insights about the disease. Do you have IPF or know someone who does? Sign up for PatientsLikeMe and start living better, together.


Living with Idiopathic Pulmonary Fibrosis

Posted March 1st, 2013 by

What is idiopathic pulmonary fibrosis (IPF)? How many people does it affect? Do we know what the cause is? Can it be treated? If you don’t know the answers, you’re not alone. IPF is considered a rare disease by the National Institutes of Health and much of the research surrounding it is not definitive.

© Kempski | Stock Free Images &Dreamstime Stock Photos

So what do we know? IPF is a degenerative condition with no known cause that gradually scars a person’s lung tissue. As more and more tissue scars, the lungs slowly lose their ability to transfer oxygen to vital organs. This can lead to shortness of breath and dry coughing. As the condition progresses, everyday activities become exhausting – just climbing a flight of stairs can be a challenge. It usually affects people between the ages of 50 and 70 years old. More than 100,000 people in the US are diagnosed every year and nearly 40,000 will pass away. The only known cure is a lung transplant.

If you’re living with IPF, find others just like you in our growing community of more than 900 IPF patients. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile and in the IPF forum. If you haven’t read about our collaboration with Boehringer Ingelheim to create this customized IPF experience on PatientsLikeMe, check it out here.

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Give the Gift of Life on National Donor Day

Posted February 13th, 2013 by

Valentine’s Day is all about showing your love for your significant other.  But what if it were also about showing your love for perfect strangers?

February 14th is National Donor Day, a day of awareness about how registering to be an organ donor can give someone a second chance at life.  Does your driver’s license currently indicate that you are a donor?  If not, and you’d like your organs (as well as potentially your tissues, marrow, platelets and blood) to help someone else after you are no longer here, sign up to be a donor today.  In the time it takes you to register, someone with a life-threatening condition will be added to the waitlist.

Wondering if your registration will really make a difference?  Here are a few statistics that help underscore the need for more donors:

  • 117,001 people are currently waiting for an organ transplant
  • 18 people will die each day while waiting for a new organ
  • 1 organ donor can save up to eight lives total

In particular, there is a need for more minority donors.  While organs are not matched according to race/ethnicity, there is a greater likelihood that compatible blood types and tissue markers – the critical elements of the matching process – will be found among members of the same ethnicity.  Thus, a greater diversity of donors could potentially increase access to transplantation, which is essentially the only treatment for end-stage organ failure (e.g. kidney failure, heart failure, liver failure).

Are you awaiting an organ transplant – or the recipient of one?  Join PatientsLikeMe to connect with others like you.  We have thousands of transplant patients among our members, including those with (or still awaiting) a heart transplant, kidney transplant, liver transplant, lung transplant and pancreas transplant. What’s it like to go through organ transplantation? Read our in-depth Patient Voice report on “Life After a Transplant” as well as our insightful interviews with liver transplant recipient Amy Tippins and kidney transplant recipient Michael Burke.


Preparing for Life After an Organ Transplant

Posted April 6th, 2012 by

Last week, we shared our interview with a liver transplant recipient who is living out her dreams post-transplant.  Today we’d like to add the insights of 32 organ transplant recipients who took part in an online discussion hosted by PatientsLikeMe.  Split equally in gender with ages ranging from 25 to 60 years old, our discussion group reported 43 organ transplants amongst them, more than half of which were kidney transplants.  Liver, lung, heart and pancreas transplants were also represented.

What did these 32 patients have to say about life after transplantation?  What do they wish they’d known earlier?  From anti-rejection medication side effects to ongoing expenses, we’ve collated some of the key themes from this eye-opening discussion in a new report entitled The Patient Voice: Preparing for Life After an Organ Transplant. If someone you love is awaiting a life-saving transplant – or you’re a transplant candidate yourself – don’t miss this collection of real-world tips, experiences and checklists.  Also, please share this free report with anyone who might find it useful.

Click Here to Read or Print This Free Report

Do you know someone living with a mental health condition such as bipolar II disorder, alcohol addiction or major depressive disorder?  Check out our previous report about getting the most out of inpatient therapy (hospitalization).


Have a Heart Today. Become a Donor.

Posted February 14th, 2012 by

Registering to Be a Donor Is About Giving Life to Another

February 14th is Valentine’s Day.  But it’s also National Donor Day.

Started in 1998 by the Saturn Corporation and United Auto Workers in cooperation with the US Department of Health and Human Services (HHS), this annual event is focused on five points of life:  organs, tissues, marrow, platelets and blood.  All of these can be donated to help save and/or improve the lives of others.

Here are a few numbers that help underscore the need:

  • 112,945 people are currently waiting for an organ transplant
  • 18 people will die each day while waiting for a new organ
  • 1 organ donor can save up to eight lives

Does your driver’s license indicate that you’re a donor?  If not, and you want to give others a second chance at life, sign up to be a donor today.  Worried you’re too old?  Don’t be.  The condition of your organs is more important than your age, and there are only a few absolute exclusions (such as HIV infection, active cancer and systemic infection).  So don’t rule yourself out when there’s a chance you could help.

Finally, there is a particular need for minority donors.  While organs are not matched according to race/ethnicity, there is a greater likelihood that compatible blood types and tissue markers – the critical elements of the matching process – will be found among members of the same ethnicity.  Thus, a greater diversity of donors could potentially increase access to transplantation for everyone.

A Snapshot of the Organ Transplant Patients at PatientsLikeMe

Are you awaiting an organ transplant – or the recipient of one?  Join PatientsLikeMe to connect with others like you.  We have hundreds of transplant patients among our members, including those with (or awaiting) a heart transplant, kidney transplant, liver transplant, lung transplant and pancreas transplant. What’s it like to go through transplantation? Read our recent interview with kidney transplant recipient and type 1 diabetes patient Michael Burke.


Life with Cystic Fibrosis: Three Teenagers’ Perspectives

Posted January 13th, 2012 by

Unlike most of the health conditions we cover at PatientsLikeMe, cystic fibrosis is one of the few communities where the majority of our members are under the age of 29.  In fact, approximately 60% of our 440 cystic fibrosis patients report that they either fall in the 0-19 or 20-29 age brackets.

A Snapshot of the Cystic Fibrosis Community at PatientsLikeMe

What exactly is cystic fibrosis?  A hereditary disease, cystic fibrosis causes the exocrine (secretory) glands to produce abnormally thick mucus.  This can cause problems with digestion, breathing, body cooling and male reproduction, among other things.  Most people with cystic fibrosis are diagnosed by age 2, although some are not diagnosed until 18 or older.  (The latter individuals usually have a milder form.)

Cystic fibrosis is the most common genetic disorder affecting Caucasians in the US.  It is also the most deadly due to the respiratory complications that can occur.  According to the National Institutes of Health (NIH), millions of Americans – including an estimated 1 in 29 Caucasian Americans – carry the defective cystic fibrosis gene.  To develop the disease, however, a person must inherit two defective genes (one from each parent).

So what’s it like to grow up with cystic fibrosis?  Here’s what three teenagers had to say in a recent discussion in our Lungs and Respiratory Forum:

  • “I had never had any hospitalizations until the summer I turned 16. I was hospitalized for a ‘tune up’ which barely did anything that I noticed. I went back to living life as I normally did. In high school I was on the volleyball team, in two bands and kept up honor roll grades. This past year has been the worst health wise. I have been hospitalized twice and the discussion of a lung transplant has begun. I cannot believe how quickly I went from having an almost totally normal life to living everyday worried about my weight and lungs and health.” – Female, 18 years old
  • “I have some bad days but I’ve never been hospitalized.  This leaves me wondering what the feeling is like to be spending a lot of time in hospitals. I was diagnosed when I was 4, after my mum had tried to convince the doctor for 3 years that something was wrong with me. Without cystic fibrosis (CF), I don’t think I would be the strong person I am today. CF has made me who I am, but I am the only person with CF that I know.  No one in my family has CF so they rarely understand how different I feel, like an outsider sometimes.  But all they say is ‘don’t be stupid, you’re normal.’” –  Female, 17 years old
  • “I was diagnosed at about 3 days old, and I practically lived in the hospital until about 5. Then I was only in once in awhile. The past school year I started to get really sick. And I’m currently in [the hospital] right now. It seems to be every three months I’m admitted, and I always pack a bag on my way to the doc because I know I will be admitted. Life is hard, but I’m thankful it’s not worse. I got to play some sports, and I have my best friend who supports me with everything.  It sucks to see my sisters get up and go to school without worries, and complain about little things. But then again I wouldn’t want any of them to have this.” – Female, 17 years old

This is just a sample of the wealth of experiences and data to be found at PatientsLikeMe.  Dive in today to learn more about cystic fibrosis.


PatientsLikeMe and Novartis Unite to Launch Community for Organ Transplant Recipients

Posted March 9th, 2010 by

Recognized by Fast Company as two of the 50 Most Innovative Companies in the World, PatientsLikeMe and Novartis have united to picture-4launch a new community for organ transplant recipients (including kidney, lung, heart and liver).  In the news release announcement, PatientsLikeMe President Ben Heywood and Novartis CEO Joe Jimenez discuss what impact this community could have for organ recipients.  Ben also discusses the community in more detail as part of our PatientsLikeMeOnCallTM podcast series.  Listen in to learn more about our new programs PatientsLikeMeMentorsTM and PatientsLikeMeInMotionTM.

PatientsLikeMe member dwilliams