6 posts tagged “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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France flips the rules on organ donation

Posted February 14th, 2017 by

February 14th isn’t just Valentine’s day, it’s also National Donor Day. Did you know there are currently around 120,000 people waiting for a life-saving organ donation in the United States today? What better time to take a look at some of the measures other countries around the world are taking in order to combat their own long donor waiting lists.

Earlier this year, France made headlines by reversing its policy on organ donations so that all citizens are automatically presumed donors upon their death unless they join an official “opt-out” registry. Before that, unless the deceased person had made it known they did not wish to donate their organs, doctors were required to consult relatives, who in almost 30% of cases refused. The “opt-out” registry has garnered about 150,000 sign-ups so far.

France isn’t the only country to take an “opt-out” stance on organ donation. Countries like Belgium and Austria have also applied similar rules, and perhaps unsurprisingly, they see extremely high organ donation rates that hover around 98% and 99%. The list of registered organ donors in the US sits at around 48% of the population.

So, let’s take a look at some facts from the American Transplant Foundation about organ donation in the United States…

 

What do you think about France’s new law? Share your thoughts below or join the discussion in the forum.

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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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National Donor Day: Changing lives on both sides

Posted February 14th, 2016 by

“Be Mine.” It’s the mantra of Valentine’s Day, but today we’re honoring those who’ve said, “Have mine.” February 14 is also National Donor Day, and it’s all about recognizing the most precious valentine of all: the gift of life.

For every organ, tissue, marrow, platelet and blood donation, there are two sides to the story. Check out how two PatientsLikeMe members describe what it’s like to be offered another chance at a life, and how it feels to give that opportunity…

 

Life after a lung transplant

“I have a new normal now, but that is ok because I CAN BREATHE! It is something most people take for granted until they can’t. I know I did. The first year after transplant is rough to get the meds right … the frequent bronchoscopies. I had a setback with CMV virus and have had GI problems (med side effects) but have gotten it straightened out. In three weeks is my one-year birthday and I am positive I would not be here now if I didn’t get my new left lung.”

–       PatientsLikeMe member

The memory of her father lives on

“When my dad passed away, nine people were given a new lease on life from him!  We received several letters from family members. Most very simple thank yous and a little about the new life the recipient has now. Those letters mean the world to me, even all these years later. It’s like Dad lives on in the joy others now have.”

–       PatientsLikeMe member 

How can you help?

Every 10 minutes, a patient is added to the organ donor waiting list. So what can you do? Register to become an organ or tissue donor, find a local blood or platelet drive or join the Be The Match national bone marrow registry.

And if you have received an organ donation – or are waiting for one – you can reach out to the transplant community at PatientsLikeMe.

 

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Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Posted April 18th, 2014 by

Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at how confident people are in managing their own conditions. More than 1,500 members from 9 different condition communities on PatientsLikeMe took part. They worked with our research partner Ken Wallston from Vanderbilt University to make the tool the best it can be. (Thank you to everyone that participated! This is your data doing good.) Check out the PMCSMS results and keep your eyes peeled for more ORE questionnaire results as we continue the series on the blog.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.


Give the gift of life on National Donor Day

Posted February 14th, 2014 by

Some of us might give our significant others and family members flowers and chocolates on Valentine’s Day, but did you know that February 14th is also National Donor Day? That’s right – in the spirit of love and giving, today is all about celebrating past donors and raising awareness for the five points of life: organs, tissues, marrow, platelets and blood.

There is an urgent need for donors in the world today. According to the U.S. Department of Health and Human Services…1

  • …every 10 minutes, a patient is added to the organ donor waiting list
  • …every day, an average of 18 patients die due to a shortage of available organs
  • …in 2010, there were 2.5 million deaths in the U.S. alone – imagine if all of them were organ donors, because…
  • …right now, there are more than enough people waiting for an organ to fill a large football stadium twice over

So, how can you help?  You can register to become an organ or tissue donor, or you can find a local blood or platelet drive and register for the Be The Match national bone marrow registry.

If you have received an organ donation – or are waiting for one – you can reach out to the transplant community at PatientsLikeMe and connect with members who have received heart, kidney, liver, lung or pancreas transplants, among many other types. You can also check out the extensive PatientVoice report on what life is like after a transplant and share your experience in the PatientsLikeMe transplant forums.


1 http://www.organdonor.gov/about/data.html