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.
Wednesday, June 1, 2011
Wednesday, March 9, 2011
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.
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.
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.
Friday, January 21, 2011
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!
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.
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!
Monday, November 29, 2010
4 years...
Hi, this is Monica, Marty's wife. Today is a day of reflection for me. There are so many things going on in my head. First off, 4 years ago today, Marty was admitted to Scottsdale Healthcare for what we thought was a bad cold. He came home 6 months later, only to be readmitted a day later for another 3 weeks, and then admitted another two times before the end of Sept. 2007. If you are interested, you can read about his hospitalizations and his health journey written in previous posts.
I guess I just want to again say thank you to EVERYONE who had a part with his healthcare, his rehab, his transplant, just everything. Thank you all so much. So many people worked to save his life.
Thank you too for the prayers and support, I always knew that God was going through this with us, but as I look back today, I am even more aware of it. He has a plan!
In a way, it has been such a long journey and then again, time seems to have flown by.
Thank you all for your love and support given to us these past 4 years.
I guess I just want to again say thank you to EVERYONE who had a part with his healthcare, his rehab, his transplant, just everything. Thank you all so much. So many people worked to save his life.
Thank you too for the prayers and support, I always knew that God was going through this with us, but as I look back today, I am even more aware of it. He has a plan!
In a way, it has been such a long journey and then again, time seems to have flown by.
Thank you all for your love and support given to us these past 4 years.
Monday, July 26, 2010
Two years!!!
Sorry I haven't posted in a long time. Things have been pretty crazy at times.
Today is the two year anniversary of my lung transplant. I am so very thankful to have this second chance at living. Today I think of and say a prayer for my donor and their family. What a selfless decision that my donor made. As my life continues, the donor family may be experiencing many different feelings today. If you are reading this, please say a prayer for that family.
Right now, I am going through my two year medical testing, full PFT'S, blood work, CT of the lungs, dermotology, eyes, colonoscopy(yuck), and and EDG. I am very happy to say things are going well so far. I am realizing that the heat is a bit more difficult to handle though. Thank God for A/C.
It has been a very busy year for us, we have done some traveling to visit family in Kentucky and Ohio, taking a road trip. We were able to drive on some of old RT. 66, seeing some of the landmarks. I will try to upload some photos, but the comupter is not really cooperating.
So, at this two year anniversary, I am thankful to God for allowing me to continue on this planet, I am thankful to God for putting such wonderful people into my life(Dr.'s, St. Joseph's hospital, church family, friends, support group family, my wife and family) Everyone has been so supportive with words of encouragement, prayers and financial support through the NTAF.
Thank you all, especially a big thank you to my donor.
Please register to be an organ donor.
Today is the two year anniversary of my lung transplant. I am so very thankful to have this second chance at living. Today I think of and say a prayer for my donor and their family. What a selfless decision that my donor made. As my life continues, the donor family may be experiencing many different feelings today. If you are reading this, please say a prayer for that family.
Right now, I am going through my two year medical testing, full PFT'S, blood work, CT of the lungs, dermotology, eyes, colonoscopy(yuck), and and EDG. I am very happy to say things are going well so far. I am realizing that the heat is a bit more difficult to handle though. Thank God for A/C.
It has been a very busy year for us, we have done some traveling to visit family in Kentucky and Ohio, taking a road trip. We were able to drive on some of old RT. 66, seeing some of the landmarks. I will try to upload some photos, but the comupter is not really cooperating.
So, at this two year anniversary, I am thankful to God for allowing me to continue on this planet, I am thankful to God for putting such wonderful people into my life(Dr.'s, St. Joseph's hospital, church family, friends, support group family, my wife and family) Everyone has been so supportive with words of encouragement, prayers and financial support through the NTAF.
Thank you all, especially a big thank you to my donor.
Please register to be an organ donor.
Sunday, February 7, 2010
HAPPY NEW YEAR A LITTLE LATE
Hello everyone... this is Monica, Marty's wife. It has been such a long time since he has posted anything, I thought I would help out a little bit. Usually he dictates, and I type, but not tonight. We Hope that everyone had a nice Christmas and New Year. Ours was pretty uneventful. We did get to watch Jonathan open his Christmas gifts via Skype, very different, but at least we got to see him.
Marty is doing pretty good, just trying to keep healthy and live life. He is having some rollercoaster blood pressures that are not cooperating with the medications. This is keeping him home more than usual, he doesn't want to get light headed or dizzy if he is out. But other than that, his transpant clinics, lungs, breathing and everything else is going well.
Yesterday we went to Tempe Town Lake, they had a fishing thing going on. There were community organizations that had booths set up giving out information. The reason we went is to show support for Donate Life Arizona. It was pretty encouraging to meet the three people working at the booth. Two were a married couple, she is a 10 year double lung transplant survivor. The other lady is the mother of a young man who was an organ donor, her son died as a young adult. She was so encouraging to us, and even had a look of happiness and joy on her face, at meeting another "transplant person" It just took me off guard. I have never knowingly met a family member of a donor. I was not expecting for Marty and I to have the reaction that we did. As we walked away from the booth, we both were a bit quiet and had tears in our eyes. God has truly been so good to us though this whole experience. He has placed so many wonderful people into our lives, so many people we would have never gotten the oportunity to meet.
Some other things have happened to bring the reality of how precious life is into our lives. A dear lady, who may not even know how much she and her husband have been a support and encouragement to us, lost her husband this past month. We met them though St. Josephs Transplant Support group, We are so thankful for the wonderful family we have there. The reality of how precious life is, has become so real to both of us already in this new year.
Oh, I kind of got off track with the rest of our fishing day... As we were walking around looking at things, Marty heard drums. For those of you who don't know, Marty plays the drums and hasn't really gotten back into it since the transplant. Well, that changed yesterday. The drums he heard were from a drum circle, set up as part of one of the informational booths. He looked at me and said,"do you mind if I join in?" He ended up playing different drums for about 30 minutes. I have not seen him smile and look that happy in a LONG time. I was having so much fun watching him have fun. It was great. God had us be there, originally just for the Donate Life Booth, but also blessed Marty with playing the drums again. What a great day. Maybe a little too much being in the sun though.....but worth it.
Marty is doing pretty good, just trying to keep healthy and live life. He is having some rollercoaster blood pressures that are not cooperating with the medications. This is keeping him home more than usual, he doesn't want to get light headed or dizzy if he is out. But other than that, his transpant clinics, lungs, breathing and everything else is going well.
Yesterday we went to Tempe Town Lake, they had a fishing thing going on. There were community organizations that had booths set up giving out information. The reason we went is to show support for Donate Life Arizona. It was pretty encouraging to meet the three people working at the booth. Two were a married couple, she is a 10 year double lung transplant survivor. The other lady is the mother of a young man who was an organ donor, her son died as a young adult. She was so encouraging to us, and even had a look of happiness and joy on her face, at meeting another "transplant person" It just took me off guard. I have never knowingly met a family member of a donor. I was not expecting for Marty and I to have the reaction that we did. As we walked away from the booth, we both were a bit quiet and had tears in our eyes. God has truly been so good to us though this whole experience. He has placed so many wonderful people into our lives, so many people we would have never gotten the oportunity to meet.
Some other things have happened to bring the reality of how precious life is into our lives. A dear lady, who may not even know how much she and her husband have been a support and encouragement to us, lost her husband this past month. We met them though St. Josephs Transplant Support group, We are so thankful for the wonderful family we have there. The reality of how precious life is, has become so real to both of us already in this new year.
Oh, I kind of got off track with the rest of our fishing day... As we were walking around looking at things, Marty heard drums. For those of you who don't know, Marty plays the drums and hasn't really gotten back into it since the transplant. Well, that changed yesterday. The drums he heard were from a drum circle, set up as part of one of the informational booths. He looked at me and said,"do you mind if I join in?" He ended up playing different drums for about 30 minutes. I have not seen him smile and look that happy in a LONG time. I was having so much fun watching him have fun. It was great. God had us be there, originally just for the Donate Life Booth, but also blessed Marty with playing the drums again. What a great day. Maybe a little too much being in the sun though.....but worth it.
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