Soccer!

Hi everybody! It looks like summer is coming to a close and fall is making its way in. Soccer is approaching and I will be coaching in the fall. I have two appointments this week with the pulmonologist and the scleroderma specialist. I know everyone wants to hear from me

but sadly all the news has been disheartening. Due to everything that has occurred in life

I wish to inform everyone that I am trying to move forward and carrying for my children

is my number one priority. Lately, my hands have been getting worse and my chest has been

aching. I apologize for not writing but there isn't much to say. Please remember that

with everything that is occurring with my disease, moving forward in life is the only thing

that matters. Don't worry I won't wait so long to write to everyone :) God Speed.

super hot day today!

what a hot day today!! this is the first time that i have found it very difficult to breath while working. I was fine in the air conditioning but the minute i stepped outside i lost my breath from the heat and humidity. i am totally exhausted.
Within the next few weeks i will finally be meeting with the lung transplant team at Beth Israel. My lung cd's have finally been received!
I have been trying to keep up with things at home. I have been pushing myself to the max. What took me only 2 hours to cut my lawn now takes about 6 because i try to rest in between. Mikey has been an unbelievable help to me. He is my little right hand man and i have been trying to teach him little things around the house. He has even been there to rescue me a few times during my choking spells. I'm not certain if i mentioned this earlier but the scleroderma has affected my swallowing and everytime i eat i have to keep something to drink close by otherwise i will choke and potentially aspirate my food into my lungs.
well everyone try to keep cool today!

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!