An Article in the Newspaper about My Journey

Grand Rapids Press Writer Terri Finch Hamilton and photographer Emily Zoladz did a phenomenal job telling the story of "my village" (you all included) and myself (as we've waded through the waters of lung transplant).  Check out the article and related videos at http://www.mlive.com/news/grand-rapids/index.ssf/2010/08/lung_transplant_patient_organ.html

I hope that my story can make a difference and result in more people signing up to be organ donors and extend the lives of thousands of people waiting for organs.  But even if it extends the life of one, that would be worthwhile.  I am so honored to be able to tell my story and my feelings about organ donation and transplant.

Thank you for still checking in with this blog even though I don't write often.   Lately, I have not felt as well, periods of 'air hunger' where I am short of breath and have some anxiety, periods of pain in my lungs and my body, periods of nauseousness too, and YET there are still many more times that I am feeling okay.  I am fighting hard and will continue.  One helpful thing is the antibiotic I am on right now because my bacteria in my lungs are not resistant to the antibiotic so it should be able to bring down my current lung infection.  It is the only antibiotic that my bacteria is not resistant to.  We just have to pray my kidneys will not be compromised by the antibiotic because that is a possible side effect that could stop treatment.  However I think it is working well so far and will continue.

I miss my boys so much and my husband too.  I just had to write that because I don't see them as much as I would like and yet its a problem that just can't be fixed.

Thank you all for your encouragement and your prayers if you're of the praying persuasion.

Love you,
Kerry

Update with Pictures! (July 14, 2010)

Hello!! It's often said that timing is everything and that's why I have such a hard time posting on this blog more often.  I just can't find the right time to do it.  But I wanted to do an update and its taken me a few days but here it is.....

A few days ago, the transplant team told me there was another offer of lungs that fit me (blood type and size) but they were not 'good enough' and far away.  To me, it was not a disappointment, but I recognized the search is real and ongoing.  That is what matters most, outside of getting lungs, of course.

I weigh 7 pounds more than when I came here and that is a nutritional milestone and brings a smile to my face each time I think of it.

My white blood count was trending upward a week ago and now is trending downward again.  Hooray!

Pain in my right lung is both improving and better controlled.  Awesome!

Weekends and overnights with both the boys and Hutch are more frequent and bring me great peace to be here as a "family" like old times (which seems like so long ago).  Since a picture is worth a thousand words, here are a few!

I love you all.

And I am still at peace as I wait for the perfect set of lungs for me.  Thank you for all of your prayers and all of your support, whatever form it comes.....

From the Medical Marriott,

Kerry Sue

Still Here. Still Kickin'

The hospital is a busy and exhausting place and I often fall asleep when I start typing on the computer.  But I want to let everyone know that I am strong, I am ready as ever for new lungs and we are all waiting for that special moment when the person who is on-call for transplant comes walking into my room with the exciting news.  In the meantime,  I have enjoyed time with my kids and with my family and friends, and I have so much fun with the staff here-- I can't say enough about my doctors, nurses, RT's, PT's and everyone on staff here and their resolve to keep me healthy until these lungs become available.  While the new lungs can bring me years of life in the future, the staff, family and friends of Team Kerry, including my blog followers, are the bridge that carries me through now and makes the waiting a beautiful experience.  THANK YOU.  Even if I don't get lungs, which I think I will, I wouldn't trade this waiting for the world.

Love, Kerry

Celebrate Life

Hello All!

It is now Day 46 at the "Medical Marriott" a.k.a. University of Michigan Hospital, and I continue on my rigorous regimen of stay-fit till transplant.  I am "hanging in there" with emphasis some days on hanging and other days on there .  Each night I have moments of anxiety where I want to run far and away to home because I just can't see myself continuing to do this and then each day my hope is renewed by my God and His ever-faithful force that lives in me.

I miss my children terribly, they could never come enough, and I have to remind myself that what I miss out on is a gift to those who get to enjoy them.  And I love my family and friends and what an opportunity to grow in our relationships in every way.  Speaking of family,  we have a beautiful new addition.  My brother's girlfriend Erin gave birth to Ryah Christine on June 3 in Missoula, Montana.  She is my brother's first baby and I am thankful for the break in testosterone (finally we can say "It's A Girl!").  Click on her name to see a picture of her.

I also wanted to note that (while I was in the ICU at this hospital) I was interviewed and photographed for an article in the Detroit Free Press.  They finally printed it!!  Click on Detroit Free Press for the link. (Unfortunately, the picture of me walking in the hallway on the vent is not featured online. All you need to  know is..... I look great...LOL).

I guess I gotta go......Hutch and I are now starting a "coloring" war....yes, that involves colored pencils and coloring books, and yes, I will win, and yes, we are bored and getting wierd from too much time in the hospital!

Love you all and more soon,
Kerry

More Updates from Ventilated Kerry

I'll catch you up on the latest and greatest here at the hospital.  I am settling in to my stay here in the step-down unit.  I am no longer in the Medical ICU because I am considered stable on the vent.  I have passed some kidney stones and continue on antibiotics for infection, but have not had fevers/chills in almost a week.  I have a lung abcess in the right lower lobe that continues to fester (for lack of a better term) and I am eating, taking supplements and being tube-fed at night to try to keep up with my nutritional requirements and maintain or hopefully gain weight.  I do physical therapy every day, focusing on strength training.  And I walk around these hallways with excitement (getting out of my room--- WOOOHOOO!) and the great thing is that the walking is a vital part of keeping me healthy for transplant.  We're all working hard and focused on keeping me ready and healthy enough for transplant.

There are some special treatments I've received here and I have to give props to the amazing "team" of staff here.  I have been able to walk outside, use the Wii Fit to play games on the first floor and in my room, and they even brought me acrylic paints and a canvas so I can be creative as my energy allows.  I continue to experience a variety of emotions and a variety of health conditions.  The other night, I was so homesick, I could not stop crying but my breathing was going pretty well.  Other times I am short of breath and I can't quite get comfortable.  I sleep fairly decent.  Last night, especially well.

The biggest obstacle (although I'm pretty good at communicating in spite of it) is that I can't really speak audibly.  My vent settings are high enough that I get short of breath when we're tried the more typical solutions to this problem.  My biggest disappointment is that I wish I could talk on the phone and I wish I could talk the entire time when Aiden comes to visit.  Aiden has been to visit twice and he's only heard my voice about 20 minutes each time, then I had to rest my voice.  On this floor, I talk even less because of staffing.  Its complicated to understand the hows and whys, so I'm sorry I can't explain it.  I'm okay.

The boys visited on Thursday and I wanted to post these pics of that wonderful time (see below).  It was amazing.  I hope Cordell can start coming more often.  Aiden is enjoying time with grandparents.

Last things:  My pulmonologist told me I am #1 in the Region for lungs (Hooray!)
                    Last night, lungs came through to fit me, but they were bruised from a motor vehicle accident, so they decided they were not good enough for transplant.  They did not tell me until this morning but I was encouraged regardless.  Soon lungs, soon.

I am so grateful for each day.

I love you all,

Kerry Sue

A Picture of Me (on the Inside Looking Out)

Smile!

Okay, for those of you wondering what I look like waiting for lungs in a hospital, here is a picture worth a thousand words.  I experience every emotion here, but overall is the sense of peace and of comfort.  

Isaiah 40:31 & Isaiah 41:10

"But those who hope in the Lord will renew their strength,

they will soar on wings like eagles;

they will run and not grow weary,

they will walk and not be faint......

So do not fear,

for I am with you;

do not be dismayed,

for I am your God.

I will strengthen you and help you;

I will uphold you with my righteous right hand."

It's been 3 weeks so far and truly a team effort, so whether you're part of the home-team, online-team, staying at the hospital-team, hospital staff-team, or family/friends/visitors-team,  I am SO grateful for all you are doing for me, that which I can see and probably so much behind-the-scenes I don't know about (prayers, supporting my family, kids, husband, etc.).  I'm going to say one of the corniest things I could probably say, but its true...... You are the Wind Beneath My Wings (Bette Midler song, late 80s)  On that corny but true statement, I will call it a night.

Love you,
Kerry

Happy Re-Activated on the List Day! (to me)

Okay, I'm a little behind in letting you know, but as of yesterday I am officially re-activated on the Lung Transplant List!!!!!!  WooooooHooooo!!!!  My score is high and my mood is too.  Here in the hospital, I am staying busy keeping my body strong (I'm even going to be featured exercising while ventilated in an article in the Detroit Free Press next week)  Maybe I can have my hubby put the article/photo on my blog when it is printed.

Another great thing is I have been able to actually "talk"for an hour each night (due to a special one-way valve that plugs my trach). I cannot explain in words, the joy of being able to hear my voice and talk to the boys, friends and family.  I'm pretty sure the feelings are mutual. :)

Thank you all for your love,
Far Away but close in Heart,
Kerry