3 posts tagged “Sarah and Keith”

Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”

Posted June 22nd, 2013 by

Over the last few months, Keith and Sarah have been sharing their journey with us. In this final interview of our three-part series, they talk about how he got on a transplant list and their “phones at the dinner table” policy. If you missed our first two interviews with Keith and Sarah, you can find them here.

align="right"

What did you have to do to get on a transplant list? Did you have to meet certain criteria?
[Keith] The transplant assessment process is an intense and very time-consuming one. When you are contacted about being assessed for transplant, you are sent a large envelope listing out a weeks worth of testing, doctors visits, and appointments in Toronto at Toronto General Hospital. The hospital evaluates you on many things, and ultimately if you are deemed “healthy” enough (because you can actually be too sick, or too healthy) as a result of this testing, you are placed on the list. There were psychological assessments, nuclear cardiac testing, liver testing, kidney testing, pulmonary function testing, physical testing, blood tests (LOTS of blood tests) to name a few.

Can you talk about your “phones at the dinner table” policy and how it changed?
[Sarah] Phones allowed at the dinner table. Most families discourage this, as it is always nice to have the family come together at the end of the day and talk about their day. The one time when people are tuned to each other as opposed to their devices! Once Keith was placed on the list, we were waiting for that call to come which would signal the next phase of our life. This meant that our phones were even MORE attached to us, and yes, were placed on the dinner table until that call came.

SK$

How are you doing post transplant?
[Keith] I feel fantastic! Being able to breathe with deep breaths every minute has been the most life changing experience for me. I am still sifting through a bit of a fog with some pain medications but as they are reduced, I find myself feeling more and more enthusiastic about what lies ahead. Each day is a gift, and I am enjoying my “bonus round.” The realities of transplant are such that we never know what tomorrow will bring, so I am living my life to the fullest every day that I am here.

What’s the one thing you both think every rare lung disease patient should know?
[Sarah & Keith] There is hope. With awareness we can educate people on the necessity to be organ donors, which can ultimately get rid of the list! The transplant program at Toronto General is exceptional and if you do what they tell you, take care of yourself and do your physio…there truly is hope for a better life with new lungs. The hospital’s goal is to help you through your disease in any way possible, and transplant is the last option, but if you need it, this is the place to be.

Sarah and Keith are part of our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness and change healthcare for good. Sarah started blogging about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath.


Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”

Posted May 22nd, 2013 by

In this second interview of our three-part series, Keith and Sarah talk about how their daily lives changed and the importance of connecting with others. If you missed our first interview with Keith and Sarah, you can find it here.

S-K 2

What were the most noticeable changes you had to make in your daily life?
[Keith] My ability to enjoy time with family was impaired because I could no longer be active with my children or my wife. I could not work because when I tried to do the simplest task, I became out of breath. I could no longer carry a toolbox, go up a set of stairs, or do everyday tasks at home without becoming winded and requiring rest. I wanted to rest all the time and was never comfortable.

As a caregiver, what things could you do to help Keith the most?
[Sarah] Keith eventually got to the point where he needed me for many personal tasks as well as taking care of all of the home tasks. I showered him, and took over our business, and we hired a cleaning service every two weeks to try to keep the house in order. Keith really needed to know that I was there for him. I made lots of special food for him because he needed to gain weight in order to be active on the transplant list.

How did you connect with other transplant patients and why did that help?
[Sarah & Keith] From the beginning, we began to seek out others who had received lung transplants. We found one in our town and eventually met many others through our many visits to the hospital. The lung transplant “family” is a tight one and it really helped to have others to talk to who were waiting, as well as those who had received their transplants and could offer hope and advice. Facebook became a good way to find people through other friends from the hospital, and eventually we developed a close group of “lungies” that we keep in touch with.

Besides PatientsLikeMe, what would you suggest to others patients who are trying to connect with someone like them?[Sarah & Keith] Finding groups on Facebook that relate to organ donation / transplant and beginning conversations with others is a great way to find people. Starting your own Facebook group or blog to raise awareness about your situation is another excellent way to let people find you.

Sarah and Keith are part of our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness and change healthcare for good. Sarah started blogging about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath.

 


Keith & Sarah’s personal journey with rare lung disease. Part I, “Fine”

Posted April 18th, 2013 by

As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Sarah and Keith. Sarah started writing about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath. In this first part of our three-part series, Keith and Sarah talk about why they started blogging, and the difficulties of finding the right diagnosis.

Keith:Sarah1

What prompted you to start blogging about Keith’s journey and what’s the reaction been? 

[Sarah] When Keith’s health took a turn for the worse in the winter of 2011, I asked him repeatedly if he would allow me to share his story, knowing that we were likely going down a very difficult road, and selfishly wanting lots of support while we (I) went down that road. He wasn’t comfortable sharing until the day we drove away from his respirologist’s office, after an appointment where the doctor said that Keith was “fine,” wasn’t a candidate for transplant, and didn’t need to be on oxygen. We knew different. I blogged, we got a second opinion, and Keith was on oxygen within 4 days, and referred to the transplant program at Toronto General Hospital (TGH) within 2 weeks.

At what point did you know that something was not right? What was your first symptom?
[Keith] I got a cold that wouldn’t go away, and it turned into a pneumonia. I was hospitalized in the fall/winter of 1997. I never fully recovered.

What was involved in finding a diagnosis? Did Keith ever receive an official diagnosis?
[Sarah] Keith visited various specialists and respirologists and was misdiagnosed with various diseases (BOOP {bronchiolitis obliterans organizing pneumonia}, COPD, asthma) before the final diagnosis of diffuse panbronchiolitis (DPB) was given. It was a strange diagnosis since the disease strikes people of Asian descent, and Keith is Caucasian. DNA testing was done to see if there was Asian blood in his makeup, but there was not. Interestingly enough, in the final pathology of Keith’s old lungs after removal – this diagnosis was confirmed.

What advice do you both have for patients that are struggling to find a diagnosis? 
[Sarah & Keith] Ask as many people as you can who have experience with lung disease, or know someone who has it. Find out doctors’ names, get referrals and stick to your guns. If you don’t feel right, tell someone!