My students will tell you that I often play music while they are working on reflective writing assignments. It is remarkable how quickly classroom chatter falls silent and work becomes focused when the first notes of a song drift from the speakers. I find that really good music, secular or sacred, has a spirit that brings clarity and calm when life seems anything but.
After leaving Good Samaritan Hospital most recently, Eileen and I knew we needed some spiritual direction and called Louise Lears, a Sister of Charity whose life has been intertwined with ours many times over the years. Louise was our backdoor and around the block neighbor and a member of our parish's pastoral team in St. Louis. She taught a health care ethics course at SLU and so she served first as a mentor, then more recently a guest facilitator for my PT ethics seminar at the Mount. We are so fortunate to have her in Cincinnati serving on the SC Leadership Council. Given her background, Louise understands health care, and we knew that we could use her wisdom and guidance discerning our transplant decisions.
After a wonderful, tearful and prayerful time together, Louise's advice was to listen to the Spirit's presence and direction in our lives.
Immediately following our meeting, it was time to do a breathing treatment - one of my first since leaving the hospital. Given that my last two treatments at home had ended with ambulance runs, I had incredible anxiety. With Eileen's hands resting on my shoulders and ear buds in my ears, I needed some music to help me stay calm. I clicked on Pandora (the internet music service that plays music of a certain genre based on your choices of favorite artists) and their Over the Rhine station.
OtR is a Cincinnati-based band whose music has frequently filled the MSJ Health Science classrooms serenading my students as they script their reflections and sketch their career aspirations. Apart from the music, the lyrics penned by Linford Detwiler and Karin Bergquist are poetic. (They were ranked the 74th Greatest Living Songwriters by Paste magazine. If my writing is half as good as their lyrics and prose, I am doing okay). The first song on the cue was "Born," from OtR's Drunkard's Prayer album.
The first verse ends:
Intuition, deja vu,
The Holy Ghost haunting you.
Whatever you got, I don't mind.
Then the refrain:
I was born to laugh.
I learned to laugh through my tears.
I was born to love.
I'm gonna learn to love without fear.
Louise's prayer to listen to the Spirit still fresh in our minds, this was pretty powerful stuff. Of course I had chosen the OtR station so maybe that song wasn't played by complete coincidence or Divine Providence. But with the last words trailing off "without fear..." the second song on the playlist begins; it is "When Your Mind's Made Up" from the movie Once.
When your mind's made up,
when your mind's made up,
there's no point trying to change it.
When your mind's made up,
when your mind's made up,
there's no point even talking.
When your mind's made up,
when your mind's made up,
there's no point trying to fight it.
Louise was right. The Spirit was present, very present (in a tear-draining, breath-taking, spine-tingling, heart-stirring sort of way) .
We had our clarity and our calm. Our minds were made up; confident that I was born to laugh and love - to live more, without fear.
Saturday, July 20, 2013
Friday, July 19, 2013
Quick Week Recap
I have a few blog posts rattling around in my head. Hopefully I'll find a few spare minutes to put finger tip to keyboard. In the meantime, this recap of the past week will have to do.
First a HUGE (so big that was a silent "H" as in "UGE") thank you to everyone who has read the blog, left a comment, offered a meal, planned a day with our kids or made a financial gift. We are overwhelmed and humbled by the generosity.
At about Noon last Friday we got a call from the transplant team at Barnes asking if we could come out to St. Louis for a series of appointments beginning Monday at Noon. With the blessing of our bosses and the help of our parents and a few dear friends to stay with the kids, Eileen and I sojourned out west on Sunday night. (If nothing else, the short notice and haphazard circumstances of the trip confirmed that we will do much better to plan our move in advance rather than listing and waiting for lungs from Cincinnati).
On the medical front I did another set of pulmonary function tests (FEV1 of 15-17% - about the same as June) and saw an asthma specialist Monday. Dr. Castro is a pretty big deal in asthma circles so when he said that transplant is our best treatment option it was oddly affirming coming from a physician of his repute. The week also consisted of a bone density scan, some blood work and a pre-transplant education session with our nurse coordinator, Kelly. Our doctors appointments wrapped up with allergy. I still have a milk allergy that is "off the charts," but no reactions to anything else they tested (other foods). The allergists were also a bit concerned about my lowered immune function (this was the reason Cleveland Clinic attempted an IVIG infusion in the fall) heading towards the winter with two little kids. They ordered a few more labs and have some treatment ideas, though there is a cynicism that this would change my lung function any more than serving as a preventative role during cold, flu and pneumonia season.
In between those appointments Monday through Wednesday we toured apartments and placed a deposit at Aventura at Forest Park. It is a brand-new complex two blocks from our old apartment on Gibson, three blocks from Forest Park and only four blocks from Barnes. We also visited St. Margaret of Scotland School to register and pick up a uniform for Adah. She is super excited to start school and already shopped for her school supplies.
View St. Louis Places in a larger map
Thanks for reading. I'll try to post a little more depth this weekend.
First a HUGE (so big that was a silent "H" as in "UGE") thank you to everyone who has read the blog, left a comment, offered a meal, planned a day with our kids or made a financial gift. We are overwhelmed and humbled by the generosity.
At about Noon last Friday we got a call from the transplant team at Barnes asking if we could come out to St. Louis for a series of appointments beginning Monday at Noon. With the blessing of our bosses and the help of our parents and a few dear friends to stay with the kids, Eileen and I sojourned out west on Sunday night. (If nothing else, the short notice and haphazard circumstances of the trip confirmed that we will do much better to plan our move in advance rather than listing and waiting for lungs from Cincinnati).
On the medical front I did another set of pulmonary function tests (FEV1 of 15-17% - about the same as June) and saw an asthma specialist Monday. Dr. Castro is a pretty big deal in asthma circles so when he said that transplant is our best treatment option it was oddly affirming coming from a physician of his repute. The week also consisted of a bone density scan, some blood work and a pre-transplant education session with our nurse coordinator, Kelly. Our doctors appointments wrapped up with allergy. I still have a milk allergy that is "off the charts," but no reactions to anything else they tested (other foods). The allergists were also a bit concerned about my lowered immune function (this was the reason Cleveland Clinic attempted an IVIG infusion in the fall) heading towards the winter with two little kids. They ordered a few more labs and have some treatment ideas, though there is a cynicism that this would change my lung function any more than serving as a preventative role during cold, flu and pneumonia season.
In between those appointments Monday through Wednesday we toured apartments and placed a deposit at Aventura at Forest Park. It is a brand-new complex two blocks from our old apartment on Gibson, three blocks from Forest Park and only four blocks from Barnes. We also visited St. Margaret of Scotland School to register and pick up a uniform for Adah. She is super excited to start school and already shopped for her school supplies.
View St. Louis Places in a larger map
Thanks for reading. I'll try to post a little more depth this weekend.
Saturday, July 13, 2013
... to Do List (Part 1)
I’ll just come right out with it:
After much thought, prayer and discernment, Eileen and I
have decided to pursue listing for lung transplantation at Barnes Jewish Hospital
in St. Louis. We arrived at this
decision for many reasons, but the strongest reasons were these:
June was awful. Between
the lung transplant work-up at Barnes and three admissions to Good Samaritan
Hospital in Cincinnati, I spent nearly half of the month in a hospital. Of the four 911 calls we made from June 2nd
to July 4th, the second one on June 19th was the scariest. As per usual it happened late in the evening,
during my pre-bedtime breathing treatment. My arms and legs went cold, my face
ashen, and I quickly lost consciousness. My blood gas levels were off the charts (PCO2
of 97 and pH of 7.23 for those in healthcare) and required a BiPAP machine in
the ER to help me expel enough carbon dioxide from my body to make room for
more oxygen. After several nights in the
hospital (including a “romantic” 31st Birthday with my lovely wife
on June 22nd), I was discharged on June 23rd only to
return later that night with another more mild asthma attack. (I actually
remember all the details on that ambulance ride!)
I had a pretty nasty cough through that spell and I’m pretty
sure there was some sort of infectious factor at play. I certainly haven’t bounced back from these hospitalizations
as quickly as I have I in the past. I
was exhausted and it took me a while to get back to my work at the Mount. I remain on oxygen for any activity at all,
except when absolutely sitting still. I’ve
struggled mentally with anxiety and panic attacks about my asthma and
depression over my declining function and the sobering lung transplant
statistics. In short, my function at the
start of July is measurably lower than it was at the start of June.
In the face of the sub-optimal transplant outcomes and
expectations, I began to realize that my odds with these ever-more-severe exacerbations
may not be much better. Apart from the lousy
quality of life running back and forth the hospital, I had to come face to face
with the reality that there might be a back to the hospital without a future
forth.
The medical advice given for lung transplant has always been
“wait as long as you can,” “get
everything out of your own lungs” and “every day with your own lungs is one
less day starting your post-transplant clock.”
I had imagined post-transplant life as this stopwatch with some unknown
duration on its face. I had calculated every
day, week, month or year that I put off transplant as time added to my
stopwatch. But I realized there were a
couple of fallacies in this metaphor.
First, if one of these asthma attacks means I don’t make it
to transplant, then the start button never gets pressed, no matter how much
time I have banked. Second, there are so
many variables with transplant - some known and understood and some unknown and
mysterious. Just because I might wait a
week, three months or two years it is not a statistical guarantee of a longer post-transplant
survival. It could be just as well that I
am transplanted sooner and for variables about that donor, that surgical team
on call, that available OR and many, many inexplicable others, my life carries
on far longer than if I wait. The reality
is that none of us know and nor can we calculate how long our stopwatch has
been wound.
And so our family moves onward toward transplant with faith leading
us to the right decision, the right time in the grace of this moment (kairos >
chronos), and the right place.
To-Do List (Part 2)
I would guess that my
post on our decision to list for transplant might generate a bunch of practical
curiosities about the process. I’ll try
to address some of those.
1. I am blessed with a Mount St. Joseph program chair, dean and human resources office that is willing to have me work remotely from Missouri. Much of my work as the Director of Clinical Education occurs at distance anyway, with my students interning all over the country; I have some fantastic colleagues who are quite able and willing to manage the campus-based work; and the coincidence of our accreditation report means there is ample data collection, analysis and writing that can be done online. Likewise, the PT market is such that Eileen should be able to find clinical practice hours in St. Louis.
2. St. Louis is our second home. (We did have to explain to the team at Barnes that our support of the Cincinnati Reds was non-negotiable, no matter where we are living). Between Eileen’s twin brother Michael and his wife Carrie, our Saint Louis University faculty and alumni friends, and our neighbors in Forest Park Southeast, we have a fantastic support network there.
3. Something feels right about transitioning our physical location and daily lives to coincide with this change in the phase of our medical care and our mental and spiritual focus toward transplant.
4. Being able to take our time to plan a move for our family feels like it gives us a measure of control in a situation with very little. Instead of whisking off on a highly anxious, unscheduled drive or flight to St. Louis (and depending on traffic and weather to cooperate) when we get “the call,” we can plan this move on our terms and timeline.
Our “best case” timeline for this process might look like this:
Visit St. Louis to find an apartment, pre-school and complete more pre-transplant testing, meetings and work-up. (Except in the most emergent of cases, it still takes at least six to eight weeks to officially be listed).
September 7, 2013
Celebrate my sister Katie’s wedding to Andrew Wright.
Late September to Early October, 2013
Move to St. Louis.
Summer of 2014
Undergo lung transplant, post-transplant recovery, and rehab.
(The average wait time at Barnes is six to nine months. Given my lower lung allocation score, there is reason to believe my wait on the list could be longer than average, even upwards of two years or more. However, I also have a relatively easier stature, blood type and tissue type to match. Can one be faulted for a tiny bit of optimism?)
Fall of 2014
Return to Cincinnati and slowly transition back to our lives and work here.
Always and Forever After
Follow anti-rejection protocols including daily medications and regular follow-ups in St. Louis.
One of the things about having a confirmed plan and tentative timeline for our transition is that we are better able to identify our specific needs - both practical (childcare, meals, yard work, house cleaning, packing, etc.) and financial (deductibles, travel, rent, utilities, etc.).
Knowing that many, many of you have asked (and asked and asked) what you can do for or with us, my stubborn, hard-headed, self-reliant, independent self has finally relented.
On the blog’s right side you will find one link to “Join Team Mosher” which takes you to our CaringbridgeSupportPlanner calendar with some initial volunteer requests for help this summer.
There is also a link to “SupportTeam Mosher” financially through the online crowdfunding site YouCaring. (I would encourage you to visit our YouCaring site (by clicking on our family portrait rather than the “Give Now” button) to better understand our financial blessings and needs at this time. I also feel obliged to offer this disclaimer that financial support through YouCaring is a personal gift to our family for medical and relocation expenses. It is NOT tax-deductible and IS subject to the IRS annual tax-free gift limit of $14,000. Please consult a tax professional with any questions). For those that prefer, gifts can also be made at U.S. Bank locations to the Peter D. Mosher & Eileen McGrath Mosher Revocable Trust Account.
Thanks for reading, helping with our to-do lists, and for your support in spirit, service, prayer, time, friendship, or financial accompaniment on this journey.
While we might have
lobbied our transplant team to stay in Cincinnati, ultimately we decided that
temporary relocation to St. Louis is the best option for our family.
1. I am blessed with a Mount St. Joseph program chair, dean and human resources office that is willing to have me work remotely from Missouri. Much of my work as the Director of Clinical Education occurs at distance anyway, with my students interning all over the country; I have some fantastic colleagues who are quite able and willing to manage the campus-based work; and the coincidence of our accreditation report means there is ample data collection, analysis and writing that can be done online. Likewise, the PT market is such that Eileen should be able to find clinical practice hours in St. Louis.
2. St. Louis is our second home. (We did have to explain to the team at Barnes that our support of the Cincinnati Reds was non-negotiable, no matter where we are living). Between Eileen’s twin brother Michael and his wife Carrie, our Saint Louis University faculty and alumni friends, and our neighbors in Forest Park Southeast, we have a fantastic support network there.3. Something feels right about transitioning our physical location and daily lives to coincide with this change in the phase of our medical care and our mental and spiritual focus toward transplant.
4. Being able to take our time to plan a move for our family feels like it gives us a measure of control in a situation with very little. Instead of whisking off on a highly anxious, unscheduled drive or flight to St. Louis (and depending on traffic and weather to cooperate) when we get “the call,” we can plan this move on our terms and timeline.
-----
Our “best case” timeline for this process might look like this:
Visit St. Louis to find an apartment, pre-school and complete more pre-transplant testing, meetings and work-up. (Except in the most emergent of cases, it still takes at least six to eight weeks to officially be listed).
September 7, 2013
 |
| The Happy Couple: Katie & Mr. (W)right |
Late September to Early October, 2013
Move to St. Louis.
Summer of 2014
Undergo lung transplant, post-transplant recovery, and rehab.
(The average wait time at Barnes is six to nine months. Given my lower lung allocation score, there is reason to believe my wait on the list could be longer than average, even upwards of two years or more. However, I also have a relatively easier stature, blood type and tissue type to match. Can one be faulted for a tiny bit of optimism?)
Fall of 2014
Return to Cincinnati and slowly transition back to our lives and work here.
Always and Forever After
Follow anti-rejection protocols including daily medications and regular follow-ups in St. Louis.
-----
One of the things about having a confirmed plan and tentative timeline for our transition is that we are better able to identify our specific needs - both practical (childcare, meals, yard work, house cleaning, packing, etc.) and financial (deductibles, travel, rent, utilities, etc.).
Knowing that many, many of you have asked (and asked and asked) what you can do for or with us, my stubborn, hard-headed, self-reliant, independent self has finally relented.
On the blog’s right side you will find one link to “Join Team Mosher” which takes you to our CaringbridgeSupportPlanner calendar with some initial volunteer requests for help this summer.
There is also a link to “SupportTeam Mosher” financially through the online crowdfunding site YouCaring. (I would encourage you to visit our YouCaring site (by clicking on our family portrait rather than the “Give Now” button) to better understand our financial blessings and needs at this time. I also feel obliged to offer this disclaimer that financial support through YouCaring is a personal gift to our family for medical and relocation expenses. It is NOT tax-deductible and IS subject to the IRS annual tax-free gift limit of $14,000. Please consult a tax professional with any questions). For those that prefer, gifts can also be made at U.S. Bank locations to the Peter D. Mosher & Eileen McGrath Mosher Revocable Trust Account.
Thanks for reading, helping with our to-do lists, and for your support in spirit, service, prayer, time, friendship, or financial accompaniment on this journey.
Friday, June 14, 2013
June 2013 Health Update
As many of you know, but some may not, I spent the past week in St. Louis at Barnes Jewish Hospital completing four days of testing for a potential lung transplant. While I began this journey a couple years ago at Cleveland Clinic, they are not a network provider for transplant services with Humana. We still have a grievance pending with Humana and Cleveland Clinic, but decided to keep things moving forward at Barnes (which is also a high volume, top-tier center for lung transplant).
The week felt a little like “transplant camp” as Eileen and I went from meeting to meeting and test to test over the course of four days. Some of the tests included a chest x-ray, chest CT scan, nuclear medicine imaging for lung and heart function, pulmonary function tests, blood/lab work and a cardiac catheterization. We met with a transplant physician, nurse, social worker, financial counselor, pharmacist, respiratory therapists and dietitian. One of the most informative sessions was with a trio of lung transplant recipient mentors who were eight to ten years out from their own transplants.
After all of the tests and meetings we had a final assessment meeting on Thursday afternoon with the transplant pulmonologist and nurse. The short summary is that Barnes will list me for a lung transplant whenever I am ready to be listed. Of course that process and decision isn’t so easy and there are numerous reasons to delay transplant as long as possible. Among the most compelling reasons to wait are the survival rates after lung transplant. Almost everyone survives a year (90%), but only 75% make it three years. You can flip a coin at five years. One in four will live for another ten years and the current data is that maybe one tenth of transplant recipients will see a second full decade after transplant. (Personally, I intend to set the living recipient record some thirty or forty years from now). In any case, we do need to discern the balance and tipping point when my quality of life without transplant is worse off than the risks, side-effects, and duration of life afterwards. I’m not sure that I’m quite there yet and just pray for the wisdom to know when I am.
In the meantime we wait. We know that in order for things to get better they have to get worse (and even that “better” doesn’t come without risks and inevitable complications). I seek some quality in the life I currently live. This means I need to be better about exercising, better about using oxygen, and better at setting limits – even if I hate every minute of it. It also means accepting the help and support that is contrary to my nature.
To that end, people continue to ask and ask what they can do with and for us. I imagine this will be an evolving process and answer. Here are a few things to start:
1. Register to be an organ donor by visiting: www.donatelife.net/register-now/.
I don’t personally want your lungs and if you offer them you’ll be in line behind my mother-in-law who has offered a couple of her lobes already. (A living donor is not actually an option in my case). We’ll try not to dwell on it, but the stark reality is that many people don’t survive the transplant waiting list for lack of donors. Please consider giving someone else the gift of life when yours should come to its end (and tell your loved ones of your wishes).
2. Please continue your prayers, mindfulness and spiritual exercises.
My donor has been at the forefront of my mind lately. Our lives are on parallel paths destined to intersect at some unknown moment in the future. I pray that his or her life be lived full of purpose, love, joy, compassion and fulfillment. I hope that he or she is cherished by those around them today as much as I will appreciate them and their selflessness on that unknown tomorrow. Please be mindful of them along with me.
Likewise, please pray for our family as we discern the inspiration to know when it is time to be listed. We’ll need wisdom and clarity interpreting the signs in dark times with only the faint glimmer of a hope-filled, future light to lead us forward.
Finally, do raise up our team of healing professionals. They have been empowered to perform modern miracles and their gifts are truly blessing.
3. The years before, during and after transplant will be expensive for us. Semiannual evaluations beforehand, the procedure itself, and lifelong immunosuppressant medications mean we’ll always have to meet our annual out-of-pocket deductible. Add to that the costs of travel and eventual relocation (maybe) once listed. I consider it a blessing that Eileen and I are able to continue working for the time-being, but that may not be the case at some point.
We are investigating a couple of avenues for fundraising. One will likely be an account through a 501(c)(3) non-profit for transplant like HelpHOPELive or the National Foundation for Transplant. This option can be tax-deductible and employee-matched for donors, but limits our use of funds for specific medical-related purposes. The other option will be an unrestricted savings account with our bank. (Those donations wouldn’t be tax deductible, but they would allow us to use funds at our discretion for other expenses). Neither of these funds has been created yet, but we will keep you posted when they are.
4. We certainly appreciate gifts in kind or of service. All the same, we do want to maintain some level of empowerment to do and provide for ourselves. If you’d like to bring us something, do something, or spend time with Adah and Eamon, that’s great. Please do offer us the autonomy to decide if and what we need and when. We will work on some mechanisms for seeking and scheduling help as that becomes more and more of a reality.
One important aspect of the transplant evaluation is an assessment of a recipient’s support network. Believe it or not this was a very challenging question because we have so many people supporting us. Between family, friends (from Cincinnati, St. Louis and elsewhere), neighbors, co-workers at TriHealth, Group Health and Mount St. Joseph, my Mount students and alumni, the St. Clare Church community, and others, I’m sure we forgot to mention some of you during that part of the interview.
Regardless, I’m pretty sure we earned a perfect score for that question and we appreciate each and every one of you that supports us.
Sincerely,
Pete, Eileen, Adah and Eamon
 |
| Hanging out with Daddy at the playground outside Barnes. |
After all of the tests and meetings we had a final assessment meeting on Thursday afternoon with the transplant pulmonologist and nurse. The short summary is that Barnes will list me for a lung transplant whenever I am ready to be listed. Of course that process and decision isn’t so easy and there are numerous reasons to delay transplant as long as possible. Among the most compelling reasons to wait are the survival rates after lung transplant. Almost everyone survives a year (90%), but only 75% make it three years. You can flip a coin at five years. One in four will live for another ten years and the current data is that maybe one tenth of transplant recipients will see a second full decade after transplant. (Personally, I intend to set the living recipient record some thirty or forty years from now). In any case, we do need to discern the balance and tipping point when my quality of life without transplant is worse off than the risks, side-effects, and duration of life afterwards. I’m not sure that I’m quite there yet and just pray for the wisdom to know when I am.
In the meantime we wait. We know that in order for things to get better they have to get worse (and even that “better” doesn’t come without risks and inevitable complications). I seek some quality in the life I currently live. This means I need to be better about exercising, better about using oxygen, and better at setting limits – even if I hate every minute of it. It also means accepting the help and support that is contrary to my nature.
To that end, people continue to ask and ask what they can do with and for us. I imagine this will be an evolving process and answer. Here are a few things to start:
1. Register to be an organ donor by visiting: www.donatelife.net/register-now/.
I don’t personally want your lungs and if you offer them you’ll be in line behind my mother-in-law who has offered a couple of her lobes already. (A living donor is not actually an option in my case). We’ll try not to dwell on it, but the stark reality is that many people don’t survive the transplant waiting list for lack of donors. Please consider giving someone else the gift of life when yours should come to its end (and tell your loved ones of your wishes).
2. Please continue your prayers, mindfulness and spiritual exercises.
My donor has been at the forefront of my mind lately. Our lives are on parallel paths destined to intersect at some unknown moment in the future. I pray that his or her life be lived full of purpose, love, joy, compassion and fulfillment. I hope that he or she is cherished by those around them today as much as I will appreciate them and their selflessness on that unknown tomorrow. Please be mindful of them along with me.
Likewise, please pray for our family as we discern the inspiration to know when it is time to be listed. We’ll need wisdom and clarity interpreting the signs in dark times with only the faint glimmer of a hope-filled, future light to lead us forward.
Finally, do raise up our team of healing professionals. They have been empowered to perform modern miracles and their gifts are truly blessing.
3. The years before, during and after transplant will be expensive for us. Semiannual evaluations beforehand, the procedure itself, and lifelong immunosuppressant medications mean we’ll always have to meet our annual out-of-pocket deductible. Add to that the costs of travel and eventual relocation (maybe) once listed. I consider it a blessing that Eileen and I are able to continue working for the time-being, but that may not be the case at some point.
We are investigating a couple of avenues for fundraising. One will likely be an account through a 501(c)(3) non-profit for transplant like HelpHOPELive or the National Foundation for Transplant. This option can be tax-deductible and employee-matched for donors, but limits our use of funds for specific medical-related purposes. The other option will be an unrestricted savings account with our bank. (Those donations wouldn’t be tax deductible, but they would allow us to use funds at our discretion for other expenses). Neither of these funds has been created yet, but we will keep you posted when they are.
4. We certainly appreciate gifts in kind or of service. All the same, we do want to maintain some level of empowerment to do and provide for ourselves. If you’d like to bring us something, do something, or spend time with Adah and Eamon, that’s great. Please do offer us the autonomy to decide if and what we need and when. We will work on some mechanisms for seeking and scheduling help as that becomes more and more of a reality.
One important aspect of the transplant evaluation is an assessment of a recipient’s support network. Believe it or not this was a very challenging question because we have so many people supporting us. Between family, friends (from Cincinnati, St. Louis and elsewhere), neighbors, co-workers at TriHealth, Group Health and Mount St. Joseph, my Mount students and alumni, the St. Clare Church community, and others, I’m sure we forgot to mention some of you during that part of the interview.
Regardless, I’m pretty sure we earned a perfect score for that question and we appreciate each and every one of you that supports us.
Sincerely,
Pete, Eileen, Adah and Eamon
Monday, December 24, 2012
Excerpt from 2012 Christmas Letter
"Many of you know that this has been a challenging year for us. Pete’s respiratory health has continued to slowly decline. We patiently wait as our medical team and insurance company continue the process of considering lung transplant. The outpouring of support, concern, and prayer has been humbling and comforting."
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| This free digital scrapbook created with Smilebox |
Wednesday, October 17, 2012
October 2012 Health Update
First, my apologies to anyone that receives thie message more than once as I'm merging a few different address books. Second, feel free to share this with anyone you think we may have left out of the loop. It has been a little while since Eileen and I gave you an update on my health status (maybe since last Christmastime) and we have had some pretty eventful weeks of late.
The last Thursday in September I had an asthma attack come out of the blue, ironically immediately after completing a breathing treatment at home. My oxygen levels dropped very quickly and dangerously low so we called 911 and the paramedics rushed me to Good Samaritan Hospital in Cincinnati. I came within a blink of being intubated and fortunately pulled through after a two night stay in the ICU. I can say that I stared death in the face that night and at least this time I wasn’t the one to blink. Apart from the seriousness of the whole situation, the fact that we still don’t know what triggered the attack weighs on the back of our minds.
After consulting with my doctors in Cincinnati and Cleveland (Clinic), I spent the first week of October making my first national conference presentation at the American Physical Therapy Association’s Educational Leadership Conference in Connecticut. I “celebrated” the standing-room presentation with a trip to the Stamford Hospital ER, this time with kidney stones which while equally debilitating, were not as life-threatening as the previous hospital visit. (Though the ER doctor’s casual disregard for my compromised lung function made the trip a bit more precarious than it needed to be). I’ve been told that kidney stones are the closest experience a man can have to child birth and that some women prefer labor to passing a stone. At the very least, I know what “10 out of 10” pain feels like and since my stones still haven’t passed yet, I may know it but again.
So this week Eileen and I made a previously scheduled visit up to the Cleveland Clinic to see my doctors there and to trial an immunotherapy treatment to see if it might help my breathing. About three quarters of the way through the treatment my body started into intense shivering/tremors (not an uncommon side effect of this treatment) which were enough physical activity to cause my oxygen levels to plunge again. At least this time we were already at the hospital and I recovered quickly after just a one night stay.
In the short term, these weeks have been very trying for our family. Eileen and I are worn out and Adah certainly has a sense that things are not right, at least in so far as her parents not being around so much the past few weeks. Thank you to everyone who has made a phone call, said a prayer, sent an email, dropped off a meal, or played with our children. We are truly blessed with great social support both near and far from us.
These developments also mean some very practical, but very hard changes to my daily life. I use a handicap hang-tag on my car and take the elevator instead of the stairs. I really need to be using oxygen for any activities above and beyond walking short distances. I need to be much more cautious about my activity levels traveling to visit my Mount St. Joseph PT student interns, treating my own patients in the clinic, playing with the kids, and doing chores around the house. These are not the life choices that any 31 year-old expects to face in the prime of his or her life. I think these sacrifices are that much harder knowing that I was a fairly competitive athlete through college and still look healthy enough that nobody would ever expect me to be as sick as I am. (Even new doctors onto my case tend to do a double-take).
And the path doesn’t seem to get any easier heading forward. The pulmonologists in Cleveland seem just about out of any new therapeutic ideas. I had an official consult with the lung transplant team at Cleveland Clinic this afternoon and my next step is to do the formal testing to see if I might qualify for transplant (whether that would be sooner or later). To be clear, transplant may be my best hope, but it is not an ideal outcome. It is a very risky procedure with all kinds of life-long side effects and the survivor rates for lung transplant are simply not very good.
The other kicker right now is that our insurance company considers Cleveland Clinic “in-network” for typical medical and hospital care, but “out-of-network” for transplant services. Not to get too political, but this feels like a very arbitrary decision by the insurance company which ultimately limits my choice to see the providers I already know and trust. What’s more, with a million-dollar pre-existing condition my ability to pursue coverage with a different employer, through Eileen's employer, or another insurer is precarious pending the outcomes of the election and further healthcare reforms. Cleveland Clinic is literally the world leader for lung transplant both in terms of the numbers of cases they have done as well as patient outcomes. Between those statistics and our growing rapport with our Cleveland doctors, the Clinic would be our far superior preference. However, we may have to cross the very troublesome bridge of trying to fund a seven figure procedure out of pocket or going to another medical center with less experience and lower outcomes. We still do have some other avenues to pursue yet in this regard.
We are sorry to share this news so impersonally via email, but know that people have picked up bits and pieces through the grapevine. We appreciate your support and concern in whatever ways you have offered it. We love you and appreciate your presence in our lives.
Sincerely,
Pete, Eileen, Adah, and Eamon
The last Thursday in September I had an asthma attack come out of the blue, ironically immediately after completing a breathing treatment at home. My oxygen levels dropped very quickly and dangerously low so we called 911 and the paramedics rushed me to Good Samaritan Hospital in Cincinnati. I came within a blink of being intubated and fortunately pulled through after a two night stay in the ICU. I can say that I stared death in the face that night and at least this time I wasn’t the one to blink. Apart from the seriousness of the whole situation, the fact that we still don’t know what triggered the attack weighs on the back of our minds.
After consulting with my doctors in Cincinnati and Cleveland (Clinic), I spent the first week of October making my first national conference presentation at the American Physical Therapy Association’s Educational Leadership Conference in Connecticut. I “celebrated” the standing-room presentation with a trip to the Stamford Hospital ER, this time with kidney stones which while equally debilitating, were not as life-threatening as the previous hospital visit. (Though the ER doctor’s casual disregard for my compromised lung function made the trip a bit more precarious than it needed to be). I’ve been told that kidney stones are the closest experience a man can have to child birth and that some women prefer labor to passing a stone. At the very least, I know what “10 out of 10” pain feels like and since my stones still haven’t passed yet, I may know it but again.
So this week Eileen and I made a previously scheduled visit up to the Cleveland Clinic to see my doctors there and to trial an immunotherapy treatment to see if it might help my breathing. About three quarters of the way through the treatment my body started into intense shivering/tremors (not an uncommon side effect of this treatment) which were enough physical activity to cause my oxygen levels to plunge again. At least this time we were already at the hospital and I recovered quickly after just a one night stay.
In the short term, these weeks have been very trying for our family. Eileen and I are worn out and Adah certainly has a sense that things are not right, at least in so far as her parents not being around so much the past few weeks. Thank you to everyone who has made a phone call, said a prayer, sent an email, dropped off a meal, or played with our children. We are truly blessed with great social support both near and far from us.
These developments also mean some very practical, but very hard changes to my daily life. I use a handicap hang-tag on my car and take the elevator instead of the stairs. I really need to be using oxygen for any activities above and beyond walking short distances. I need to be much more cautious about my activity levels traveling to visit my Mount St. Joseph PT student interns, treating my own patients in the clinic, playing with the kids, and doing chores around the house. These are not the life choices that any 31 year-old expects to face in the prime of his or her life. I think these sacrifices are that much harder knowing that I was a fairly competitive athlete through college and still look healthy enough that nobody would ever expect me to be as sick as I am. (Even new doctors onto my case tend to do a double-take).
And the path doesn’t seem to get any easier heading forward. The pulmonologists in Cleveland seem just about out of any new therapeutic ideas. I had an official consult with the lung transplant team at Cleveland Clinic this afternoon and my next step is to do the formal testing to see if I might qualify for transplant (whether that would be sooner or later). To be clear, transplant may be my best hope, but it is not an ideal outcome. It is a very risky procedure with all kinds of life-long side effects and the survivor rates for lung transplant are simply not very good.
The other kicker right now is that our insurance company considers Cleveland Clinic “in-network” for typical medical and hospital care, but “out-of-network” for transplant services. Not to get too political, but this feels like a very arbitrary decision by the insurance company which ultimately limits my choice to see the providers I already know and trust. What’s more, with a million-dollar pre-existing condition my ability to pursue coverage with a different employer, through Eileen's employer, or another insurer is precarious pending the outcomes of the election and further healthcare reforms. Cleveland Clinic is literally the world leader for lung transplant both in terms of the numbers of cases they have done as well as patient outcomes. Between those statistics and our growing rapport with our Cleveland doctors, the Clinic would be our far superior preference. However, we may have to cross the very troublesome bridge of trying to fund a seven figure procedure out of pocket or going to another medical center with less experience and lower outcomes. We still do have some other avenues to pursue yet in this regard.
We are sorry to share this news so impersonally via email, but know that people have picked up bits and pieces through the grapevine. We appreciate your support and concern in whatever ways you have offered it. We love you and appreciate your presence in our lives.
Sincerely,
Pete, Eileen, Adah, and Eamon
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