Its been a while

Hi everyone! Just wanted to say hello and and give you some updates. It has been tough to continue my days normally with such a disappointment on my shoulders. After the news I came home, I went to go see my regular doctor, and they informed me that I should continue taking my pills and wait to see if anything else pops up...I'm in limbo right now. We are waiting for the cd's from my lungs to be mailed from Chicago back to my home doctors; I can not see a doctor here until they come. Any day now they should come in and I can go ahead with being evaluated for a lung transplant. It is still a major disappoint and there is still no cure. The only thing at this point that is aiding in my disease is my hot tub which allows me to emerge my body in water and aids in the pain. For everyone out there, there is still hope. Live long and live life to the max.

A Very Big Thank You.....

I would like to take this opportunity to thank everyone who attended the fundraiser at applebees last night in my honor as well as Maureen Bielecki for hosting a fundraiser at her home for me. Donna and I are so humbled by the outpouring of generosity and kindness from all of our neighbors, friends and family. I want to also thank Danielle Taroff for cochairing the Applebees fundraiser along with my wonderful daughter Amanda.
Donna came home today to find a card in the mail from the wonderful girls in Dr. Pecoraro's office ( by the way, if you need a great periodontist in jersey, Dr. Melissa is the one to see). They all know that she is going through a very difficult time right now. Her mom is staying with us recovering from a bought with pneumonia. Donna has been caring for her full time as well as dealing with my illness and holding down a job. The girls chipped in to have a cleaning lady come to our home several times to help out. It means so much to her as well as to myself. Again, I can't say thank you enough to everyone.

A Father's Day to remember....

i am usually not an adventurous kind of guy. Donna has more than enough adventure to make up for both of us. She enjoys camping and any or most outdoor activities. My idea of camping is a room at the Marriott!
To commemorate Father's day, I decided to do something a little crazy ( at least by my standards) and took the family ATV riding in the mud!! I have to say, it was one of the most memorable Father's day we have ever had. I will never forget their laughter and looking at my wife and kids covered in mud from head to toe. I am certain that they will never forget it either!

Happy Father's Day!

I would like to wish all you dad's out there a very Happy Father's Day! take the time to really enjoy your children on this very special day. Donna is preparing for family to come over and as always, is cooking a fabulous dinner.
I would like to thank everyone on my Soccer team for a tremendous job this past season and for attending the end of season picnic. Thank you for your gifts... I am truly humbled by everyones generosity. A very special thank you to my team mom, Janice for her help throughout the season. I am looking forward to coaching in the fall and hope that all of my kids will be returning.
I saw my Rheumatologists back here in Jersey on Wednesday. We are going to move forth with plans to be evaluated by a lung transplant team in mid July. Donna has been busy faxing info over to the Dr.'s at Beth Israel. We recieved a 40 page report from Northwestern on all of the testing that had been done there. My skin is worsening and the Tracleer that i have been taking for my heart has now been increased to double the dose. I will be increasing my visits to Robert Wood Johnson Hospital as well, from 6 months to every 3 months.

I will continue the fight!

Through the advice of my family and friends, i have decided to keep this blog and continue to post. It may not be daily postings, but I will try to keep this going. I have been feeling this past week that in some way I have let everyone down, particularly my Scleroderma brothers and sisters who are fighting this fight with me. This stem cell transplant was not only for myself but for all of the other men, women, and children (yes, even children are afflicted with this disease)who suffer and struggle every day of their lives. I was hoping to bring us one step closer to a cure. If I could have been a subject for this clinical trial to help science find that cure I would have. I will continue to fight this disease with dignity and Donna and I will continue to look for alternative methods. I am optimistic that someday there will be a cure. If any of my Sclero brothers and sisters out there are reading this, please consider taking that chance to help find a cure not only for yourself but for others who suffer like us. Dr. Richard Burt should be commeneded for his work in stem cell transplant therapy. He is a compassionate human being who believes in his work and he was heart broken to give me the news that this would not be a possibility for me. If anyone wants more information on his work and Northwestern Memorials program, please email me. We have sent people to the moon, I know we can find a cure for this! Remember that June is National Scleroderma Awareness month. Stay strong to live long!

A Disappointing Day...

I received a phone call from Dr. Burt yesterday with very disappointing news. It seems that there is new damage to my heart that wasn't there at my initial visit back in March. The right ventricle of my heart is enlarged from the disease which is making it work harder. The transplant would stress my heart and ultimately put me into heart failure. I stressed to Dr. Burt that I would be willing to sign all waivers not holding anyone accountable, but he explained that ethically he could not proceed with the transplant and told Donna and I that if I were to go forth with the procedure I would definitely not survive it. I think it is extremely important at this time to consider my children and the precious time that I do have remaining.
Donna and I want to thank all of our friends, family members and neighbors for all of your support both emotionally and financially by donating to the transplant fund in my honor. The money that has been collected will be used to offset the expenses incurred while traveling to Chicago for these evaluations as well as all medications that have not been fully covered by my insurance.
What's next you ask? I am going to follow up with my rheumatology team here in New Jersey and possibly be evaluated for a lung transplant. I am not certain that i will be a candidate for this either but I am not going to give up. Winners never quit and quitters never win. I will be following up with future updates as soon as i see my New jersey Doctors. BE STRONG TO LIVE LONG!

Home sweet Home.....

Hello All, well we are finally back home and enjoying this beautiful weekend. What a change from 48degree Chicago. The kids managed to do very well without us... Mikey even managed to do his own wash a few times times this week! I just can't thank our neighbors and friends enough for all of the phone calls and visits to check on the kids. It meant a lot to them and even more to Donna and myself. Mikey has a soccer game this afternoon. I am looking forward to coaching my team again. They are a great group of kids.
Hopefully we will hear some news this week from the insurance company as well as from the transplant team.. I am hoping for only positive news. Please say an extra prayer or two or three this week....