Hi everybody just wanted to update you on our soccer team. We finished winning the last 4 games in a row! making our record 5 wins and 3 loses. The kids achieved a lot and were playing super towards the end. couldn't ask for anything more. Our last game we won 3-0 and played great. I think this might be my last year coaching:( God speed.

Hello everybody today our soccer team won our 4th game. We're playing better than ever. I am so proud of our kids who have accomplished a successful year. The only thing that bothered me today was that the other teams kids did not shake our hands with sportsmanship. I can tell you that every game we played our kids have been respectful with taking a loss with a win, and I am so proud of them. God Speed.

Hey everybody just wanted to tell you about soccer. As of November 1st our soccer team is .500 and we've come a long way. I'm looking forward to my my appointment on December 2nd. It took about three weeks to get my blood work back. Which there three weeks behind ha ha... They just got back to me. God speed.

Fall

hey everybody its soccer season so I have been incredibly busy. I wanted to let everyone know that this will be my last year coaching soccer. So far the kids have been trying hard and it looks like it is going to be another great season. The other day I went to see the scleroderma specialist, however, I got the day of my appointment mixed up and they wouldn't see me. They scheduled a new appointment for December 2nd, my birthday! There has been no change in my condition, just that my hands have been hurts worse. I am still functionable and still getting around but I get tired easily from the disease progressing. God speed.

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!

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....

Some good news and not so good news.....

Hi All, well let's start with the not so good news first.... We met with the cardiology team today and it seems that there is an abnormality on my cardiac MRI. The concern here is whether or not my heart will be strong enough for transplant. Evidently,this was not an issue three months ago, but with my disease progressing there is a concern now. The team is going to meet with Dr. Burt and evaluate the situation. I told them that I am fully aware of the risk involved and i am ready and willing to take it....if you know me well enough, you all know that I am a risk taker and at this point this is my only chance... I am going for it!
The good news is... All tests are finished and we are leaving tomorrow morning! I miss my kids and I can't wait to get home, and yes, I even miss Mylo, our beagle.. I would personally like to thank everyone for your posts to this blog, your emails and the many phone calls. Everyone has been so supportive and it means a great deal to both Donna and myself... see you all back in Jersey!

National Foundation for Transplants

Mike Adams - Flemington, NJ
	Donate Today Donate with		Transplant Type - Bone Marrow Mike, a husband and father of two, first suspected Lyme disease was the cause of swelling and pain in his hand until further testing showed he suffers from Systemic Scleroderma, a rare autoimmune disease causing the tissues of various organs to become very hard and eventually stop functioning. Doctors have told Mike a bone marrow transplant is his only hope for a second chance at life. Mike was once very active, spending time with his two children, jogging five miles per day and playing softball as often as possible. However, his condition has forced him to stop the activities he once loved. An active coach in local Readington Township athletics, Mike has coached his children's athletic teams for 15 years. He is thankful that he has still been able to coach and hopes he remains healthy enough to continue helping. Mike looks forward to playing baseball with his son once again and walking his daughter down the aisle someday, and he hopes a lifesaving bone marrow transplant will allow him to do those things. A bone marrow transplant costs approximately $300,000. And that's only the beginning. Mike faces significant medical expenses related to his transplant. Because Mike's insurance will not cover a large portion of the transplant costs, his hospital has estimated that Mike will be responsible for approximately $170,000 out of pocket. You can help! To make a donation to NFT in Mike's honor, click the link below his photo. If you'd prefer to send your gift by mail, please send it to the NFT New Jersey Bone Marrow Fund, 5350 Poplar Avenue, Suite 430, Memphis, TN 38119. Be sure to write "in honor of Mike Adams" in the memo line. Thank you for your generosity! Patient Health Institute: Northwestern Memorial Hospital

Day 3 down and one more to go!!

Hello all, well another day down of testing... yesterday I had an adenosine stress test followed by a visit to the vein clinic. We received a tour of the area where they will be harvesting my stem cells and a brief overview of the machine that will actually be extracting the cells from me.
Today I had a cardiac cathetarization. This is the third one i have had done, so It was almost routine for me. The Cardiologist said my pressures looked good and that he was going to give the thumbs up for transplant.
Donna and I took a short tour of the Museum of Science and Industry this afternoon. This has been the only time we have had an opportunity to see a little bit of Chicago. The highlight of the afternoon was actually when we were waiting for a taxi back to the hotel... an ice cream vendor and a cab driver got into a heated argument about the prices being charged for an ice cream cone. It was something right out of Comedy Central!! At one point the ice cream vendor threatened to throw the cone at the cabbie... only in Chicago!! It has been several hours later and Donna and I still can't stop laughing about it. Tomorrow is the last day of testing. I have an MRI in the morning and a consult with the cardiac team in the afternoon. Piece of cake!!

tests, tests, and more tests....

Hello all, well the day has finally come to an end and what a busy day it was...most of the morning tests were fairly easy. I had 20 vials of blood drawn and felt dizzy afterwards, I was in need of a glass of juice or something sugary... just when i thought the worst was over, the afternoon rolled around and i had an MRI. Now I have had an MRI before, but this particular one looked like a medieval torture device! They literally strapped my arms down to a table and put me in this tube. You know you are in trouble when they hand you a panic button and tell you to press when needed. I treated it like i was a contestant on one of those reality t.v. shows... How long can Mike Adams last in the tube without pressing the panic button?? It was hell. I had to stay in there an hour! My prize....Donna handed me a snicker bar. I'll take it! haha. My visit at the dental clinic didn't go as well as I hoped either. Apparently I have a tooth with an old root canal that is failing, so when i get home i have to visit a specialist to have my root canal redone. They have to do this because once i get the transplant, my immune system will be nonexistent for a while and if this tooth should decide to suprise me with an infection it could actually be life threatening Lucky me, a root canal to look forward to upon my return home! . Hopefully all will go well tomorrow.

Finally my deep dish Pizza!!

Hello all, well we have finally arrived here in Chicago where the weather was a cool 65degrees and sunny. A very big difference from the 80degree weather we are having in Flemington. Our flight was wonderful... except for the fact that they no longer give you a snack, not even a little bag of peanuts!! Well, that's our great economy I suppose.
I am happy to say that after our check in at the Seneca, we went to the famous Gino's East for a delicious deep dish pizza. Ahh, finally!! I have to say that it is very different than the deep dish pizza at pizza hut. The crust is unusually sweet and the mozzarella cheese is on the bottom of the pie not the top. It was fantastic!! Well, i am going to rest up tonight because tomorrow is a big day.

This is a test....This is only a test!!!.

Happy Memorial Day everyone! Well, it seems that I will be travelling back to the Windy city on May 31st for 4 more days of testing. It seems that my insurance company is requiring me to undergo several more tests before they give final approval for any type of payment. If you think that you have a full schedule, check mine out....
Monday June 1st..8:30 a.m. EKG. 10:00 a.m. Labs/Virologies. 12:15p.m. cardiac MRI with contrast. 4:00p.m. Dental Appointment for xrays and cleaning( no, they won't let Donna who is a Dental Hygienist, clean my teeth!).
Tuesday June 2nd..8:00 a.m. Adenosine Thallium Stress Test ( for my ticker).. 3:00 Vein Check ( for my port which will administer my chemo) .
Wednesday June 3rd.. Right heart Cardiac Cathetarization
Thursday June 4th.. 8:00 a.m. CT Enterography of abdomen and Chest, and Chest xray.
1:45 Consultation appointment with the Cardiology team.
Geez, I hope i get a chance to taste a Chicago deep dish pizza, but with this schedule I may have to settle for peanut butter and jelly!

Amanda's graduation from TCNJ

A very special moment with Nanny....
Me, my wife Donna, my son Michal, my daughter Amanda and mom
Congratulations Amanda!

A very Proud moment in my life....

Friday was the College graduation of my daughter, Amanda. She attended the College of New jersey. She graduated in the top 1/3 of her class! It is so hard to believe how quicky these 4 years have gone by. Other than witnessing her birth, this was the proudest moment of my life and I am so thankful that I was able to be there. It was certainly a day filled with Adams pride!!! I want to mention a very special person in my life and that is my mother in-law. Those of you who know her know how ill she has been over the years and yet she manages to always bounce back. Her reason for this, she tells me, is the love of her family - Even though she is in a rehab recovering from yet another illness, she managed to make it to the ceremony!! She is an amazing woman. I draw a lot of strength from her.
My Dr. started me on a new medication it is called Tracleer. This is supposed to help preserve my heart. My skin is starting to itch like crazy, but I don't think it's from the medication. I think my body is getting tighter. Donna bought a new cream that seems to be helping a little. Anyone have a back scratcher??

New News!

Today we heard from our insurance case manager as well as from Kristen, our Nurse coordinator at Northwestern( Let me just mention that Kristen is wonderful). It seems that our insurance company wants Northwestern to conduct further testing (exactly 12 more tests). They were very specific about the tests being performed by Northwestern only. Kristen told us that they usually either approve or deny payment for the transplant after the first 3 tests which i had already completed. What does this mean? We are headed back to Chicago for 5 more days of testing which means a further delay in my treatment. They may be slowing me down, but there is no stopping me- I'm a man on a mission I have a lot of living to do!!

Rainy Sunday....

Well, our soccer game was cancelled today because of the rain. This weather is really bad for my joints. The pain is sometimes unbearable. On a lighter note, our good friends Penny and Billy paid us a visit yesterday. We haven't seen them in a while and it was just so great to finally get together. Billy has now become a professional ATV rider! Penny has known Donna for almost 27 years now so I would have to say she is more like family. She and I could just sit for hours and just laugh and banter. Hopefully we will get in one more visit before I leave for Chicago. No news yet.....

Don't call us, we'll call you....

Hello all,
Well, I finally received a phone call from my financial liason ( after many unsuccessful phone calls instantly transferring us immediately to voice mail). Basically, we are still in negotiations with our insurance company. Dr. Burt has to submit further test results to them and i will possibly have to return to the hospital for further testing. Lucky me.
I came home this afternoon to find my backyard had been landscaped! John and Susan came over and worked in my yard all afternoon. It has been difficult for me to hold garden tools with my hands and cutting down shrubbery is almost impossible. I don't know how to thank them enough!
I gained two pounds this week, now i only hope i can keep this up.

good game, good food, great friends....

Well, Sunday was our first soccer game of the season and we were defeated 6-1. Not a good start to the season, but these things do happen. My team showed a lot of heart, it's only the first game. I have a good team. Mikey played inside on offense and he did a great job.
I felt exhausted as usual and it seems like it's increasingly getting worse as the days go by, but I'm holding strong. Susan and John payed us a visit. It's always great to see them. They truly know how to make you forget your troubles. I was feeling pretty depressed about my condition and they really boosted my spirits ( as I often do for John. I always tell him there's no charge for my therapy!)
Still waiting to hear from the hospital. hopefully Donna will give them a call on Friday.

coaching Readington baseball 2008 season

the sick house.....

Well, it's official, my kids have the stomach bug. Amanda was up all night. I'm just waiting and wondering when it's going to hit me and Donna. Donna is really great about sterilizing everything. I think she sleeps with that can of lysol next to her! Ironically though, she is always the one that ends up getting sick and I always seem to dodge the bullet. I hope I'm that lucky this time I don't think my body can handle anymore weight loss. I'm down to 155 and I would really like to put on at least 10 more pounds before I leave for the transplant. I have always been the same weight for as long as I can remember, a fit 175. I was alway a jogger and would run almost every day when I was healthy.I played sports and at one point i was playing softball almost 6 nights a week. When Dr. Burt examined me in Chicago he told me that I was very fortunate i was athletic, because i have incredible lung capacity compared to the extensive damage that I have in my lungs. Thanks everyone for your posts, emails and phone calls of support they really do mean alot to me. Sorry these posts are so spread apart, (as i was reminded by Paul) but as soon as I hear anymore news from the hospital I will be posting more frequently. p.s. Paul have a great trip and stay out of the sun!

I loveeeee black jelly beans

Easter was a great day. It was filled with family and lots of good food. This was the first year that I couldn't participate in our annual Easter egg hunt because I wasn't feeling up to it. My children are extremely competitive and were actually relieved that I would not be participating (I always win), but wait until next year watch out. The highlight of the day for Amanda was tossing black jelly beans at me while I scooped them up and ate them like a chipmunk. mmm those black jelly beans. We are still waiting to hear from the financial liaison. We received an e-mail from the hospital with her name but were told not to contact her for at least two weeks. She probably wouldn't know anything yet anyway. Mikey and I are getting extremely excited for spring soccer season to start. Practices have been a challenge for me. I come home exhausted. Our first game is approaching rapidly and it looks like we have a great team this year.

April get warm!

Today was a good day. Donna made about a million phone calls and finally settled on a condo,the Oakwood apartments, a block from the hospital. We still haven't heard from our financial liaison, who will be fighting our insurance company for some sort of payment. We are supposed to know something in the next few weeks. My daughter's friend, our neighbor, started fundraising at her college, West Chester University. I was so humbled when she gave me an envelope donated by the students. Even though its April its still really cold here in Jersey, and it snowed today. It makes it very difficult for me to function fully with my hands because of my raynauds. Hopefully we will have nice weather for Easter.

My first post

My family and I received wonderful news this past week that I am a candidate to undergo an autologous stem cell transplant. As I prepare for this journey to Chicago, I invite everyone to join me through this blog site as I kick Scleroderma in the butt! I am a fighter and I never give up.