l.o.v.e.

One thing that has always been of interest to me is love. I grew up watching Disney movies (and still live on them!) and like to believe that there really is a Prince Charming out there even if you have to kiss a lot of frogs to get there! The thing is, there was never a Disney princess with a transplant…..maybe I could suggest it? The princess was never faced with that fact that her life could very well end at any time and it’s hard particularly as a girl to find a guy that is understanding and realizes that life is precious and no one is garunteed tomorrow.

I found him.

I met a boy named Tim and he is like the piece my soggy, broken, misshaped puzzle has been missing. He makes me feel like a woman and not like a victim or a trophy or just some girl he wants to get with. This is the most real relationship I think I’ve ever had and it gives me hope that there are still beautiful souls in this world. He makes me feel immortal and although I’ve come to terms with the possibility I could get sick in no time, I feel like if I did get sick, he’d be there to bring me back to life.

My lungs are fresh and yours to keep,
kept clean and they will let you breathe. -Brand New

I feel the most alive I’ve felt in a long time. This is the air I was meant to breathe. I’m so lucky to be alive to feel this.

<3 Ashley

I’m back!

Hey everyone!!

Ashley here. Sorry I haven’t written in a while but I’ve been going through a lot lately. I’ve been touched by the death of my grandmother, my cat…the list goes on. Every time I end up questioning my own mortality and reason for being alive. I think about why my donor is gone and why I’m still here. Last night my mom and I were watching something on TV and she told me that when I was less than 24 hours away from no longer being alive, my surgeon told her that my death was imminent and I was showing the signs of someone who was very close to dying. How scary is that?! It makes me question so much including the afterlife and all that. It’s been a mentally draining couple of months for sure.

Thank you to Marty and Monica for their entries…they are good people and I hope all who read this blog enjoy and take in all they have to say. I’ll write again soon!!

<3 Ashley

Birthdays

A much healthier Marty.

Hi, this is Monica, Marty’s wife.  I just want to express my gratitude to the many people who have been a part of our lives these past 4 plus years.  The people who have given us support; family, friends,  the medical staff at each facility and each Dr.’s office.  There are way too many to name, but you all have been so important to us.  We have been blessed to have physicians who have been totally honest with us about Marty’s outcomes, which have not always been good, and have been there to hold us up. (the photo is a picture of Marty in Scottsdale Healthcare in June 2007 on his birthday.  The Dr. in the picture is Dr. Alpa Shah.  She made the referal for his lung transplant.  She also sang Happy Birthday to him that day.  I sure wish I had a video of that.)

All of this to say that because of everyone,  Marty has another birthday to celebrate today.  One we were not sure would ever happen.  We also, as people who have been touched by transplant, celebrate Transplant Birthdays, or Anniversary’s, or Transversary’s.  What ever you may call them, it is a cause to celebrate life.  There were many times when I thought my life as I knew it was soon to be over, due to Marty being so sick before his transplant, or just worrying after the transplant.  But that just didn’t happen, Thanks to a selfless donor, Marty and many others have the opportunity to celebrate their birthdays.  Thank you to all people who are organ and tissue donors. 

So if you are reading this and have had a transplant or if you are waiting to be evaluated, or if you are on “The List”, be hopeful, be strong,  question your doctors, and trust them.  Celebrate everything in your life, especially the birthdays you thought may never happen.

Good Morning

Hello, I’m Marty and I am a St. Joes double lung transplant person.  That sounds a bit like the beginning statements of another well-known support group.  I am going to try to assist Ashley with this blog, although I am not real consistent with my writing.  My wife just might help out with some insights from the “caregiver” point of view (but to be fair and upfront, she doesn’t really like the word caregiver for our situation).

A little background about myself would seem like a good thing to start with.  I am from Ohio originally and moved to Arizona back in 1979, you know to show my independence.. Well, I ended up liking it here and staying.  I led a pretty normal life for a bachelor in the 70′s and most of the 80′s.  Some of that is a bit lost though.  I had a daughter in 1988 and raised her pretty much on my own, married Monica in 1998.  We led a pretty typical life as a blended family until I got what we thought was just a cold in Nov. 2006.  I am attaching a link to my personal blog to take it from there.  Again,  I am not real consistant with my writing, but it accounts my/our journey through my illness and double lung transplant.

      www.martysnewlungs.blogspot.com   if you have some time to read it.

We have gone through so many things since my illness and transplant it is hard to know where to begin.  I will just say for now, that April is National Donate Life  Month and Easter happens to be in April this month.  Both are ways for people to experience a second chance at life.  How can words be enough to say thank you to those who have made the ultimate sacrifice so others can live.  From what I have heard and understood from other organ and tissue recipients, this is a very common feeling… words are not enough,  the best way to show our gratitude is to live our lives fully, with respect to those who gave the gift of life.  Please sign up to be an organ donor with your state’s  Organ donation agency..

Happy Easter Everyone!

tiffany

I wanted to take the time to congratulate a friend of ours, Tiffany Tate. She FINALLY got new lungs and they couldn’t come soon enough! Here is a link that tells you a little bit about her….

http://www.azcentral.com/sports/preps/se/articles/2010/11/27/20101127seton-catholic-coach-tiffany-tate-team-tiff.html 

She has fought for so long for transplants to be covered by AHCCCS (Arizona’s version of Medicaid) and I completely commend her for her actions. Because of her passion and so many others support,  those in need won’t have to feel like the were given a death sentence. Tiffany is hanging in there post-surgery and we are all so happy for her that she can breathe on her own again. This is soooo exciting and not to mention a great way to celebrate Organ Transplant Month!

We love you Tiffany!!

pick your poison

Medication. Pretty much all of us take something or another these days and after transplant we become self-made experts in pharmaceuticals. Some people want nothing to do with pills but when you get something like a transplant it’s unavoidable but it gets easier as time passes. When I first started taking my medications after my surgery I was given them in little paper cups by the nurse. Eventually, they taught me how to do it on my own and watched me carefully to make sure I was doing it right. It all seems so overwhelming at first but you soon learn to get the hang of it. As you get further and further out from surgery the medications wean down a bit and you might even feel normal.

Side effects are different for everyone but one of the scariest ones for me was when I got peripheral neuropathy. My legs would go numb whenever I walked to0 far (15 feet+). After a bunch of tests and physical therapy I just realized it was my body’s reaction to one of the meds. My doctors switched it up and now I’m able to walk again which is a great feeling!! Keep in mind that we are given these meds for a reason but if there is something you feel is off, let your doctors know. You know your body better than anyone and if they can’t figure it out don’t just give up! You were given a chance to live again so live it up!

love, loss, and other such nonsense

Today’s topic that I chose is something that is a bit of a downer but I’ll try to make it a little light-hearted when possible. This is mostly for my post-transplant friends but I invite those who are pre- and searching for answers to read as well.

Today’s topic is….. *epic silence* Death. Don’t worry though, we’re not talking grim reaper and pain and suffering . I’m talking about the concept of loss and dealing with the thought of death itself. As transplant patients, we must come to terms with our own death which is something that is hard for many people of many different backgrounds and faiths. Once we get the transplant it’s like, “Whew, I escaped that insanity!!” I personally went through a stage before I left the hospital after transplant as well where my doctors told me the statistics of patients after-surgery. I started crying  thinking that I had to again see myself on a short timeline. I couldn’t help but thinking, “Why did I even do this if I’m not going to live that long?!?!?!” I was angry and felt that way for sometime afterwards. It’s still at the back of my mind but now that I’m 6 years out, no one can take that hope away from me. I AM NOT A STATISTIC!! That is important for all of you to believe—Never  compare yourself to other patients, everyone is unique!!!!

Why am I talking about this?!?! Well, recently we’ve had a few losses of friends and for some it is harder than others but everyone we’ve lost is special in their own way and will never be forgotten. Not all have happened as a result of complications due to transplant which is important to remember. I think it all has to do with your lifestyle and we all have different ones. Just be yourself but be cautious too. That was really hard being a 18-year-old at the time of my surgery. No more tattoos because of the low immune system, no more lying around in the sun with the skin cancer risk etc etc. All that said though, ask anyone of us and I’ll bet you they will say it was worth it. We have been given a second chance at life and every day we get after is one more little miracle. What will you do with your miracles?

As individuals, we’ve all had different goals but as a group we’ve all had some common goals such as spreading the word of organ donation and it’s importance, talking to transplant people, and overall just have fun!! Goals don’t have to big……but make a list of things you want to do and go for it!! Support each other, support yourself, and stay strong everyone!!I figured I’d throw some pictures in here of  some of our little escapades:

  xoxoxoxoxoxo Ashley

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about us

Hey everyone! Ashley again. You might be looking our blog wondering, “Who are these people and why are they doing this? Simple, we’ve all been through a transplant or know someone who has and we understand what it’s like to be in those shoes. We want to give back.

Let me start out with a litte about myself:

http://www.ucsfhealth.org/patients/ramirez_ashley/index.html

Above is a link to a story that was written about me that pretty much says it all. Well, it says my medical side that is but everyone knows that there is more to a story than just the cover. One thing I am passionate about within LTSO is to find a place to stay for those who may be coming from out-of-town and don’t have anywhere to go. This is what happened to me when I got my transplant in San Francisco. Granted, if I had to pick a city to be stuck in, San Francisco was pretty darn beautiful but it was hard not knowing how long I’d have to be there and how we could possibly afford it.

I was lucky to have the help of a place called the Koret Family House in San Francisco and I stayed there a total of about 5 months in and out of the hospital and to have that place to call home and to go to after a hospital stay meant more to me than anything in the world. The first time I came home after my transplant, I sat on the bench outside the house and started crying and told me mom, “I can smell the flowers.” Flowers were always growing outside the house but I’d never been able to smell them because I always had an oxygen cannula up my nose, not to mention I didn’t have enough air capacity to be smelling much of anything.

Meeting other sick children at this house was uplifting and it showed me that I wasn’t the only one going through a tough time. Needless to say I was forced to grow up pretty fast with everything I’d been through and am a better person because of it, I believe. When I met the people of LTSO we started throwing around ideas about what we could do for those going through the transplant process. I brought up my idea about the housing and someday we hope to make that come true. For now, we are trying to help families not only financially but emotionally as well and we are available to anyone who needs to talk, patients and caregivers alike. With donations, we hope to be able to give back to those in need during such a stressful time. That is our vision and we hope to see it happen.

Stay tuned for more about us!!

Ashley <3

first real blog

Hello everyone, Ashley here. On behalf of our group LTSO (Lung Transplant Support Organization)  I wanted to start-up our first blog. There will  soon be others who use this to discuss their experiences with transplant as well. Once I get a feel for the site we can maybe set it up where we have different fonts or colors to write with so you can tell the difference between who’s who. We’re all here to give support to people who are going through a lung transplant pre or post and also the families, friends and caregivers going through everything that transplant involves. If you’re reading this, know that you’re not alone and that you’ve now got a mini-transplant army on your side. Stay tuned and keep reading as we add new posts and stay strong!

Ashley