APRIL IS DONATE LIFE MONTH

APRIL 19TH IS BLUEAND GREEN DAY

SHOW YOUR SUPPORT FOR ORGAN, EYE AND TISSUE DONATION BY WEARING BLUE AND GREEN.

 I must admit that I don't have a lot of blue/green clothes, but I am going to give it a shot on the 19th.  Anything to get the important message of organ donation out there.
Sometimes, I think, there are so many health and medical "causes" out there that are being promoted.  Mostly all of them are very worthy causes, and their word needs to get out there.  There are huge organizations that back up and support these causes both in the media and financially.  Please don't misunderstand what I am trying to say.. I am thankful that these non profit agency's are getting the word out, promoting research, finding cures, fundraising, and making donations.. The medical field would still be in the dark ages if it weren't for these amazing people and organizations...

But since I am fairly new to this transplant journey by comparison, I am still learning.  It seems to me that  people are hopping less on the bandwagon to promote donation;and sometimes I wonder if it is because it appears less glamorous. I must say from living with and loving someone who is or was in need of a life saving transplant, it is an amazing, glamorous miracle to see them be filled with life again. And glamor can come in many forms, it is in the eye of the beholder... To me one of the most glamorous things I have seen after a person has been through transplant is the pink in their face, the smile on their family's face and just the plain simpleness of taking that first walk down the hospital hallway with out any extra medical attachments.. All because a selfless choice/decision was made on a card or drivers license application.  Sometimes that decision has to be made by a family member, and that may not be an easy thing for them to have to do at such a sad time in their lives.   Bless their hearts.

There are many amazing volunteers who are with the Donor Network of Arizona, The New Life Society,  Lifeline of Ohio, and all of the other states Donate Life Organizations. They do an amazing job of educating people, supporting people, manning the booths at all of the "sign up to be a donor" drives.  Just go to the events page of your local Donate Life Organization and look at their calendar of events.  Almost everyday there are events all over the United States...Volunteers do this.  There are not many news stories,  National news coverage, or T.V.commercials out there.  Maybe that will change soon.. But the need and the word is getting out there anyway...

There are local groups in each city that work hard to get the word out about donation.  The Lung Transplant Support Organization,
is a non profit agency based here in the Phoenix Valley.  They not only promote and support donation, they support the people in the valley who have had Lung Transplants.  They do this is so may different ways, check out their website www.gotmask.org   to learn more about them, what they do, and where they want to head.  They have a fundraiser golf tournament on May 11, 2013 at Longbow Golf Club in Mesa, AZ.

James Redford, Robert Redford's son promotes organ and tissue donation as well.  He has an annual event ( I believe), Share the Beat and James Redford Institute for Transplant Awareness based in California.  His sites are www.sharethebeat.org
and  www.jrifilms.org/. Both sites offer some good information.  I guess I am just trying to do my small part to get the word out there.
As you may see, I am not putting alot of information here, but am posting links in hope that if you are reading this, you will check out these sites and do some research on your own. Please do what you can to learn and become informed, maybe even promote the need for organ donation, and living donation... (Yes, you can even be a live donor in some cases..)  I am sure that as you do, you will come to realize that the people who have had organ, eye, and tissue transplants, are some of the most appreciative and greatful people you will ever come across.  Each day is a gift thanks to the selfless decisions of donors and their families.
Like the Hallmark slogan says:
                "LIFE IS A SPECIAL OCCASION"

 

Today, March 23, 2013 was the Annual Laura's Run.  This event directly benefits the Lung Transplant Program at St. Joseph's Hospital and Medical Center in Phoenix.  It is always amazing to see the amount of people that are impacted by transplantation..There were people there from all over the valley and for that matter all over the state.  Laura, whom the event was named after, did not have her lung transplant here in Phoenix because at that time, there wasn't a thoracic transplant program available..Laura received her after transplant care in California.   Six years ago, St. Joseph's began their transplant program.  The proceeds from this 5K, run/walk/doggie trot/ and kids dash, go directly to the transplant program at St. Joes.  An amazing amount of time and effort goes into this event.  The weather this time of year is always so nice, not too hot, and the sun is shining.  I just stand in total awe of God's creation as I watch, feel, and experience the emotions of everyone at this event.

As this event approaches each year, it is always a time of reflection for me. Some of our friends are no longer with us at this event, it is a strange feeling. I know they too, were thankful for being given this second chance in life. Just a chance of life again...Two of our friends have been blessed with a second (and Third) chance of life twice.   They are both doing well after their second lung transplants..Yes, that is right, their second one.... I think of the new friends we have been able to make too. People who are just now experiencing breathing without lugging oxygen tanks and tubes all over the place and the joy they have is a wonderful sight.   As the race was beginning, the announcer was giving a brief history of the transplant program at St. Joes.  I was totally shocked when it was said they have completed 188 transplants, and that St. Joes has one of the highest success rates in the nation.  It is an amazing team of medical professionals.  It is ever growing, so much so that us "Old Timers" sometimes can't keep up with the changes.   Where we were 6 1/2 years ago to where we are now has been miraculous journey.   The things that Marty has been able to do because of his transplant are unbelievable compared to what his medical condition was in November 2006 through half of 2008.

Thank you to all organ donors.  If you could just see the gratitude and joy in the people's lives who have had an organ/tissue transplant, it is worth signing that little card to register.  Thank you also to the Donor Network of Arizona and the New Life Society for having your Donor Registration booth set up today.  These people volunteer their time going to events to get the importance of donor registration out there.  Most of the people who work these booths are transplant recipients or members of a donors family.  These are some amazing people too...

Thank you Laura Hart Burdick Foundation for all you do for St. Joseph's Lung transplant program..
Check out

www.laurahartburdickfoundation.com   for more information regarding Laura.

DON'T FORGET THAT APRIL IS 

NATIONAL DONATE LIFE MONTH.....

December 11, 2012

Well as you can see, we put Christmas lights up this past weekend.  It was about 70 degrees, sunny and not a cloud in the sky.  We took our time, enjoying the beautiful Arizona day.  There are about 6 houses on our street that have also put up lights, not too many lights, just the right amount.  They all look nice.  Putting up the lights did provide somewhat of a challenge for Marty, since he has been wearing a walking boot cast to help stabilize his ankle.  It helps him tremendously as he walks, but going up and down the ladder was something he had not yet done with the boot.  But the lights are up and look great.

It is also flu season, so that seems to mean I turn into an overbearing "nurse type" person. "Do you want a mask?  Did you bring your hand sanitizer?  Are you sure you want to go there, there will be a lot of people?, What is your temperature?, What is your O2 saturation? Your heart rate?  Your BP?   etc..."  Marty always answers with a kind word, and I try to not be so overly cautious.  The truth is, any little bug/virus/bacteria, scares the heck out of me.   Marty has NEVER shown any signs or symptoms of illness after is original onset of his lung disease 6 years ago.  The few things he has been ill with, he hasn't had any symptoms, even the Swine flu.  Just have to keep on trusting God...He has been and continues to be right here with us.

Today we got our Christmas gifts wrapped and sent to Ohio.  Marty did some of the wrapping, and of course I let him do all of the totally weird shaped packages.  So Ohio family, if you get a package with tons of tape on it......I'm not going to say anything else.

Today on Facebook I got an update from Help Hope Live, formally National Transplant Assistance Fund, with a suggestion for a fundraising idea for tomorrow, 12/12/12.  We thought it was a pretty unique idea, so we are passing it along... the idea is that since 12/12/12 is a once in a century date, to post on blogs, Facebook and Twitter asking for your supporters/followers/ friends to contribute $12.00 to your fundraising campaign. So that is what we are doing.  Just go to www.helphopelive.org and in the section that says "Find Patient" type in Marty's name.  Thank you for considering this.

Well, it is getting late,  so I am going to close for now. More later when it is not so late.

November  29, 2006....
I know, the wrong year is posted.  I am not crazy (no smart remarks here please).  But on this date in 2006, Marty was sent to the ER at the Scottsdale Healthcare Osborn campus from his PCP.  He was at the PCP for a follow up from an Urgent Care visit 3 days prior.  At his point we are thinking "ok, this is more that an upper respiratory infection like the Urgent Care said".  After we arrived at the hospital, it is kind of hard to describe.  Things moved so slowly from the standpoint of Marty needing care immediately, to moving so very quickly that I couldn't keep up with what was being said regarding his health.  At this point, all I could gather was that He was very sick, that he was going to be admitted (and it didn't sink in that he was going to the ICU yet), and that his coloring, which was purple, was getting a deeper shade of purple as time went on.  
He was hooked up to a pulse oximeter (now fondly known just as a pulse ox), heart monitoring machines, blood pressure cuffs, and the obvious.... oxygen.  This was all happening all at the same time by various ER staff.  I heard one nurse say "HIS O2 is 72"  I had no idea what that meant.  Now we both realize that it was bad... anything above 90 is "normal".

He was taken to his room in the ICU.  Room 238. I was asked to leave him while they assessed his condition. An hour later, I was allowed to come back in to his room.   A pretty scarey sight I must say/  I had never seen so much medical equipment attached to one person before in my life. Little did I know how much more equipment  he would be needing the next day.  

As Marty was intubated the  next day, That is when our new reality slapped me in the face.  In some previous posts there is some history and photos of his journey through this.   

So this day holds some very strong emotions for me and as I have related the day to Marty, strong emotions for him as well.  Everytime we pass Scottsdale HealthCare, I can look up and see the window of his room.  I am very thankful for the memories, although some are pretty scarey, I have from him being in that room.  How many people prayed for us, and his healing.  How God used this time in my life to draw me closer to Him.  You have to have faith... 

From this date on November 29th, 2006, our lives were forever changed for the better.  Long struggles with health, but God has been so good to us.  There are so many things that the world would view as lost or impossible in our situation, But we view them as blessings from God.   So in a weird way, This date has become "the first day in the rest of our lives"   Every day is a special occasion, a gift from God.  Use it wisely, and be the best you can.

This Christmas Season, the best gift you can give to everyone is to become an organ donor.  Without this gift given, Marty and countless others have received the gift of life.  Please consider contacting you states Motor Vehicle Department or Donate Life Organization.

Thankful

November 2008

November 22, 2012

I know, I know, it has been over a year since anything has been posted here.  I have had some thoughts about sharing too much personal stuff on the net... but if someone wants to find out something, they will anyway.

First off, Happy Thanksgiving to everyone.  Thanksgiving should be an everyday thing a verb.... an action we express and act on. 

It is also a time of reflection for us.  Six years ago Marty couldn't even finish his Thanksgiving dinner.  We were pretty sure he just had a bad cold.  You can read previous posts to gain some history or to refresh your memory if you so choose. That was the beginning this journey we have been on.   I am so thankful that today Marty was able to finish his dinner including seconds and desserts.  We were invited to a friends house for dinner, so I didn't have to prepare any food.  She wouldn't even let us help out with the dishes.  She just wanted all of her guests to have a restful time visiting, and we did as we sat outside eating our dinner. A nice time was had with friends, old and new.  It did feel a bit strange not having any family around this year though.  Phone calls were made to family back home, as well as Facebook contact, so we did get to spend some time with family. What in the world would do with social media, Face Time, and Skype...???

Marty is 4 years and 4 months out from his transplant. His annual testing was in July and he had good results. He is doing well; with the expected issues and complications that occur with a lung transplant. We just deal with them as they come up, and are thankful they don't come up often. His lung function had decreased consistently for awhile, but has been stable now for a year.  His complications are no where near what some of our transplant community of friends have experienced this past year.  The thing that is limiting him most right now is his ankle.  It is bone on bone and because of some blood clots in the same leg, treatment of the ankle is on hold.  He was given a walking cast to help stabilize the ankle and give him a feeling of what an ankle fusion would feel like.  So hopefully his clots will clear up so the ankle can be treated...

We are enjoying the beautiful weather here, the air conditioning hasn't been on now for over a month.  After 14 years, it is still strange to me to have such beautiful weather during the Thanksgiving and Christmas season.

Well, that is it for now... We are so thankful that God has been with us and has provided all things for us (because by all human reasoning, Marty shouldn't be here;  and we should be so down and out-but that is a totally different subject for a later post date), But God had/has different plans...

                                             

4 year testing at St. Josephs!

                 

Desert Botanical Garden 11/13/2012

                   Like the Hallmark slogan says "Life is a Special Occasion"

Fundraiser Flyer

Well, thanks to the wonderful people at NTAF (National Transplant Assistance Fund), I was able to get this flyer posted.  I am not very computer literate at all, so a HUGE thank you to Joni and Kathy.

It is a difficult thing to have to do fundraising, but as most of you may know, it is costly after a transplant.  I have pretty good insurance with a Cigna Medicare plan.  Just this year, as with many insurance plans, coverages decreased and co-pays increased.  I am thankful though for having medical coverage.  We decided to have a Virtual Dinner because so many of our family and friends are scattered throughout the United States.  This way, if they so choose, they can participate with out having to travel...We would love to see everyone though!  So if you are able to participate in this fundraiser, we would appreciate it. Thank you so much.

Well, it is getting pretty hot here, most days the temperature is still under the "normal" temps.  We have even been able to keep the doors and windows opened.  We still have the real hot months to look forward to.  Last year, we spent some of the summer in Ohio, the temperatures were not as high, but the humidity was real high.  I have been in Arizona for 30+ years so the heat hasn't really ever been a factor for me.  Until after my transplant.  It seems as though the summer heat just drains me now.  So, we are enjoying the cooler temps for now,  they will be gone before we know it.  I just realized it sounds like complaining, but it is not.  It is just a fact of my life now.  Yes, my life, I am alive and am so very thankful for that.  There is not a day that goes by I don't think of my donor and their family.  What a blessing they are to me.  Thank you to them and all organ and tissue donors.