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.

Almost 3 years

Wow, almost three years... God has been so good to us.  Things are going really well at this time.  I just had an unexpected clinic appointment this past week, was doing alot of coughing.  I had a nasal wash, and thankfully the results were negative. 

We have been partnering with the National Transplant Assistance Fund(NTAF) for our fundraising.  Since my 3 year "Transversary" is coming up, we are holding a virtual spaghetti dinner fundraiser to assist with my annual testing.  I am going to attach a flyer to this post that has all of the information on it.  Please feel free to invite anyone.... Remember, its virtual, no real food, no real calories, no real mess, no real clean up.  It is just a way to involve our family and friends who live throughout the USA.  All contributions and donations are tax deductible. Thank you so much.  I'll post more later, as well at the photos from Laura's Run.

Our February

What a good morning it is.  This is Monica, playing secretary again.  Marty had given me the information he wants written, but it will be me that writes, so there may be some of my sarcastic attitude that comes through.  Sorry about that.
There has been so much that has happened since the January post.  The one thing that has had the most meaning to Marty is going in to say hello to Dr.'s Shah and Levinson.  They are the "insurance appointed" pulmonologists that basically kept Marty alive during his Scottsdale Healthcare stay.  When something like a sudden illness happens and you are just given a Doctor that happens to be on your insurance company provider's list, you have NO say in it, no choice.  You just pray and hope that they know what they are doing.  Well, these two Dr's did/do know their stuff.  We just stopped into their office, yes, a mask was worn, to say hello and to say thank you to them.  I could not believe the reception that Marty received from them.  We were taken back into their offices and just chatted like old friends.  Both Doctors had smiles on their faces, and words just didn't seem like enough to express our thanks.  I always wonder if it does the doctors good to see their patients and how their medical knowledge for all intents and purposes saved their lives.  These two doctors were key to saving Marty.... (not to say all of the others didn't have a part  it was a big team effort)   We then had the oportunity to also say thank you to Dr. Manish Patel.  He is the ICU/Critical Care Doctor (although he has partners too) that kept on pulling things out of his sleeve for Marty.  He just couldn't believe that Marty was up walking and living. Dr. Patel is the Dr. that recommended both of the Roto Beds. How do you ever really say thank you to people.  It was strange for me to hear how some of the medical professionals at the hospital say they remember the family of the patient more so than the patient, maybe because at that time, I was a pain in their butts....??? They all did remember Marty, just as the patient in room 238 or the Roto bed guy.  What an amazing group of people we have had the opportunity to meet, yes, people first and then Doctors and Nurses.  In my opinion, they would not be good medical professionals unless they are good people first.

Well, on another note... Marty started getting a different type of cough mid February.  It is just part of life after a transplant, but when things are different with their health, you are supposed to call the transplant nurse coordinator.  So we called, since his vitals, breathing,and  O2 saturation's were all good, we were told to just monitor his cough and vitals, he had a  regularly scheduled clinic appointment on Tuesday and things would be checked out then.  Clinics involve chest x rays, Pulmonary function tests, and blood work.  The only thing that was a little off was Marty was a little more tired, and tired more easily.  So on Tuesday, we went in for the appointment.  His chest Xray was clear, his blood work was good, but his PFT's went down.  Thus a bronchcoscopy was ordered, as well as 3 IV steroid treatments, oh and 2 of his treatments I had to do at home, something I have never done through this whole thing...The IV steroids were precautionary in case the bronch showed rejection...The last time  he had steroid infusions, he was a complete nut case, so hyper, so hungry, his thoughts just couldn't even connect with his speech.. a  horrible thing for me...oops I mean for him to go through.

The bronch results came back negative for rejection, negative for RSV, but positive for the flu and a fungus growing in lungs.  The IV treatments weren't as bad as I thought and his reaction was NOTHING compared to the first time.  The fungus is being treated, he has no more coughing, and he is not as tired.  He is just so incredibly cautious now... that is a big change for him...I am glad he is though.  He is doing what he needs to be doing to take care of himself..finally.
There have been so many people who have been praying for him through this latest bout.. Thank you all,  We have been blessed with many good friends and family.  Thank you God for letting us go through this journey, and thank you for the many lessons we  have learned, and to be honest, for the lessons that we are still trying to learn.
Oh, one more thing... This Saturday there is a fundraiser for St. Joseph's Hospital and Medical Center's Heart and Lung Institute (where Marty's transplant was done).  It is called Laura's Run.  We are planning to go there, not to run this year, but to show support.  More next week about this event.
I was trying to add captions to the photos, but  I could't figure out how to... anyway, the top photo is at home during the IV treatments, and the other photo is Marty "dressed up" the day we saw Drs. Shah and Levinson... Yeah, no black T shirt or Camo pants... I say with a smile.

FEELING GOOD AND THANKFUL

Well, 2011 has gotten off to a good start.  I am feeling well, and am trying to get back into blogging.  I am doing good and enjoying my daily life. I did have some pretty strange head trips to deal with last year.  I guess there were alot of things that were floating around in my head, and they just decided to stick around for a while. Issues that needed to be dealt with, like when you have a zit that needs to be popped.  Well I am thankful that the "zit" has popped, the issues are gone, and I am prepared to deal with any more "zits" that may come my way. I don't want to come across as not being able to handle things, but when you go through a life changing illness and then a major organ transplant, things  are different.  I have learned to enjoy dealing with things that come my way.  I am able to look at life in  totally different way.  I have learned to not stress over things I have no control over,  to not be hesitant talk to someone if I need to, and not to be afraid to share my life experiences with others.
 
I feel that I am beginning to get back to normal, and that feels good.  I am very thankful that I can enjoy things in life that I have taken for granted in the past,  just simple things like sitting on the front porch with my coffee, listening to the birds, and just living. I don't feel like there is a rush anymore.

One other thing I have been really trying to do daily is exercise.   I can usually get up in the morning and get my exercising done.  When I think back to my first release from the hospital in 2007, I had lost almost 95 pounds.  I am not going to say how much of it I have gained back, but I will say that I feel healthy. (I did break a kitchen chair two days ago when I sat down in it).

After our trip to Ohio, I have realize a few things.  One, I wouldn't be this healthy if it were not for my wife.  She says she nags me, but I tell her it is a good nag.  Two, for a while I didn't think I would be around to see my daughter grow into being a woman.  She has more than amazed me, and I am proud of her. The third thing I have realized is that family can be more than "blood family".  We have some pretty amazing friends both in Ohio and here in Arizona who are Family.  Monica and I love you all.

We were looking at some pictures and Monica found one of the roto prone bed that I had to be in for a week or so back at Scottsdale Health Care.  Although it is not me in the bed, it will give you some idea of what the bed looked like, so I am going to try to upload it.. There is actually a funny story about that bed.  I guess when I was in that bed, I was hooked into it with these cushioned arms, then I was turned to the prone position, facing the floor.  I just had my trach and was bleeding from the incision so I couldn't be placed prone at first, at least that is what the night shift nurse told Monica.  When she came in the next morning, all she could see was the flat part of the bed, no sheets, blankets, or even me.   She was a bit afraid to ask what happened to me.  The nurse, tried her best to not laugh, but said that I was able to face the floor, that I had stopped bleeding.  Monica was very relieved to hear that, and not that something had happened to me.  By the way, I think from what I understand, being in this particular bed is what helped my lungs. 

So, Hopefully as the year progresses, I will keep up with the writing.  It seems like we can not say Thank you enough to our family, friends, medical staff, my donor and their family, and mostly to God and His plan.  Thank you for for giving me another chance!