Today I hold Maycen a little closer, Instead of picking up hours this week I am staying home to have some fun one on one time with her. I got some news this week that really made me sad, thankful and bittersweet.
I found out two sad things today. A friend of mines daughter was diagnosed with Ataxia and a viral illness causing her to have trouble walking and vision issues with her eyes. My friend is a nurse and just did not feel right about the answers she was getting and packed her family up and went to Lucile Packard Children's Hospital in Palo Alto where I used to work as a Travel Nurse. She managed to have someone look at her daughter for a second opinion and from the sounds of it almost left there with no further answers, until one doctor looked into it a little further and it was sadly discovered that her daughter has 2 large cancerous tumors and has a cancer called a neuroblastoma. Her daughter is about the same age as Maycen. I am so sad for this family and hope that somehow all my prayers for all these little ones with horrible cancers and diseases can be answered!
My other sad new is about a patient I had, several years back when I first began my career as a travel nurse that stole my heart. He was a great person in every aspect that I knew of and had such hope and will to live that he really made my job feel worthwhile. When I cared for him he was very sick and was almost loosing his battle with CF (Cystic Fibrosis). He wore a pager that the nurses often made jokes about in hopes that something bad happening to one person would make that pager go off and allow something good to happen for him. I was on a travel assignment so four months he basically was on the unit the entire time I was there. It was my first travel assignment but I knew it was one that would leave a mark on me like no other, I cried when I left. When I moved to Hawaii to take a new job I had gotten a few updates from the nurses on the unit that I kept in touch with that he was not doing well at all, A few months later I was working the night shift and I got a call from one of the nurses that his pager went off and he had gone into surgery and they had a donor for his transplant. A major surgery that could easily kill him, or worse that his body would not allow it to take hold. I remember tears running down my face as my friend told me the news, I was so happy for him to get this second chance at life.
Ironically, there also was some controversy at that travel job as well. One of our nurses that worked the floor ended up falling in love with this patient. So much that after she had ended her marriage she basically began having a relationship with her patient. Say what you will about boundaries and crossing the line, let me just say this was not a minor patient. She was at his side throughout the entire recovery. She told me a story about how they went to the top of a mountain and his oxygen saturations were still in the high 90's! Which was amazing for him, getting up to go to the bathroom was a challenge before on oxygen even.
I kept in touch with this patient from time to time after the transplant. He had a new life. He was able to do amazing things with his new lungs that he had not been able to do with his previous lungs from the CF. I still have a letter he wrote to his friend and family and I would like to share with you the note as it is so sincere.
Dear Friends and Family!
What an incredible year it has been! One year ago I was learning how to
breathe with a brand new pair of lungs and who knew this is where I would be
today! This miracle that was given to me from a gracious family kept me
living! First of all I would ask you to please say a little prayer for the
family of my donor, I don't know who they are where they live and really
anything about them, but I know it has been an incredibly hard year for
them. As I celebrate a wonderful year, they mourn the loss of their child.
I have not contacted them yet, I am honestly a little scared to say the
wrong thing, but I am hoping to get a letter out to them soon so maybe they
can see what a miracle they took part in.
So one year ago right now I was in surgery while many of you were
waiting and praying for me and I thank you so much! I know none of this
would be possible without the wonderful support of everyone around me! The
support, words of encouragement, and many millions of prayers that were
lifted kept me alive and has brought me to where I am today! So today many
of you probably don't remember what you were doing a year ago, but I sure do
I was receiving a new life and what a great one I have now!
So now...I just finished my summer classes and I am going to take 13
credits this fall and graduate in December! I am so excited to be done, but
a little scared to find a job (with good benefits :) ) to pay for these
wonderful medications that are keeping me alive! I am going to go on a
little road trip to see family and friends in California and Las Vegas in a
couple of weeks, it is also a celebration of just being able to go. It
would have been absolutely impossible one year ago and that in itself is
enough to celebrate. I have my one year clinic appointment on Monday, which
includes a broncoscopy, hopefully that is going to go good!
So what a year it has been for me and everyone around me...but it has
not been great for everyone, please keep a few of my friends families in
your prayers as they deal with the loss of a loved one including Sarah, Krysta
and Robbie. Each of these girls gave it their all and in the end they were
asked to come home. So for me it has been a wonderful year, but for some
it has not been. So what were you doing one year ago, I sure know what I
was doing I was receiving new life! Hopefully I will have many more years
a wonderful as this one!
Thank you so much for your support, encouragement and continued prayers!
As always...Breathing Easy!
-Mike-
P.S. - Please pass this on to anyone you think may want this I don't have
all the e-mail addresses that I wanted to send this to, so I am hoping it
will get to those people through you!
He went on to live a great life, he married the love of his life in 2005, his Nurse. They had two sets of twin children thanks to miracles of science.
Many of you probably do not know about Cystic Fibrosis or CF or what it does to someones body. CF is an inherited disease of the secretory glands. Secretory glands include glands that make mucus and sweat. "Inherited" means the disease is passed from parents to children through genes. People who have CF inherit two faulty genes for the disease—one from each parent. The parents likely don't have the disease themselves. CF mainly affects the lungs, pancreas, liver, intestines, sinuses, and sex organs.
Basically when CF is really bad, not everyone has the same effects on their bodies but they need high doses of medication to clear the mucous from the lungs, They have trouble gaining weight, have diabetes from their CF, they often need oxygen because it is hard to breath. A lot of the medications have negative side effects as well.
Unfortunately there is no cure for CF, even transplantation does not cure the problem it just allows someone to no longer have diseased lungs but eventually the body will wear on those lungs as well.
Thus the sad part is that I was given word that he was not doing well and had been on the transplant list again, however he just could not wait any longer and had recently passed away. Leaving his wife and children behind. His wife said, " it just wasn't his time yet."
As I walked my daughter the other night I was thinking about all of this in tears, and what an amazing thing it really was, he was given a new life, he was a successful person that contributed to our world and he left behind a legacy. All things that would have never happened if he hadn't had a nurse that loved him, a donor to breath new life into him, the will to continue as some of those same people he mentioned in his letter had truly given up their fight from a nursing perspective. And such unending faith in such an unfair situation.
His wife gave him the most precious gift, loving someone that you know very likely will not walk the entire path with you and the path you do walk will be surely challenging aside from the beginning controversy.
He was so blessed that he was able to have children and impact them and watch them grow but the heartbreak he must have felt knowing that he will not get to see most of their path here on earth must have been so hard.
It just amazes me that some people can truly live in the moment, some people wouldn't even walk down those paths knowing what he knew about his life and challenges that lie ahead. Think of all the people collecting disability that really don't need it, just use it as an excuse to not work and here is someone that educated himself and worked in a career with so many other thing working against him. And what a blessing that he even found love to take him on this journey as so many of my patients that are CF patients are at that age when they question if and who would they ever marry with all the challenges that they face ahead.
I tell his story everywhere I go, to all my CF kids that need hope and inspiration, I even told them to email him until I head the news that he was gone. Some people make a mark on our lives for a moment others for a lifetime, He truly left a mark on me forever.I will never forget you!
If you would like to donate to CF or learn more about it here is the link
Permission to share this story was given by his family and last names of all patients referrenced have been removed for protection of identity.
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