2 posts tagged “Coalition for Pulmonary Fibrosis”

“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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It’s Global Pulmonary Fibrosis Awareness Day!

Posted September 7th, 2013 by

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Do you know someone with pulmonary fibrosis? Thanks to the Pulmonary Fibrosis Foundation, today – Sept 7th – is dedicated to raising awareness about this condition and sharing the stories of patients living with PF. It’s Global Pulmonary Fibrosis Awareness Day, and we want to do our part to help raise awareness of this lung condition. Pulmonary fibrosis (PF) causes scarring and thickening in deep lung tissue over time.

We recently announced that the PatientsLikeMe community has grown to include more than 1,000 patients with idiopathic pulmonary fibrosis (IPF). IPF refers to cases where the cause of the condition is unknown, and it affects over 100,000 people in the United States alone.[1] Our collaboration with Boehringer Ingelheim has made the acceleration to enhance our community for PF patients possible. So for Global Pulmonary Fibrosis Awareness Day, we’d love to share what we know about this condition, people’s experiences with it, and the stories behind the people living day in and day out with the disease.

More and more IPF patients are sharing their real world experiences on PatientsLikeMe, monitoring their own health while connecting with others just like them. We’ve done a series of blog interviews with our members, including Lori, Kim, Jeff and Ian, as well as other patients like Sarah and Keith.

Beyond the stories, our members are sharing experiences about what it’s like to live with their IPF. Here’s a snapshot of what we’ve learned about their real-world experiences, including a quote from Lori, an interviewee and amazing individual who was diagnosed with IPF in 2011 and has been connecting with PatientsLikeMe members ever since.

PatientsLikeMe-PF Community

As the PFF says, today is about sharing stories and raising awareness of a condition that affects over half a million Americans. You can help by sharing your story and experience here and through campaigns run by the Pulmonary Fibrosis Foundation and the Coalition for Pulmonary Fibrosis.

Every story, every voice, and every experience matters when coming together to make a difference for pulmonary fibrosis.


[1] http://ghr.nlm.nih.gov/condition/idiopathic-pulmonary-fibrosis