Great news today! The CMV is responding to treatment! I'm feeling great and the weather is gorgeous here today. I should be able to stop my IVIG infusions sooner than expected because I'm responding well to that too.
Made possible by all of you!!!
Dec 31, 2016
My blood work showed positive for CMV. In order to treat this virus I had a picc line inserted yesterday. Marci and I will need to administer the IV medication twice a day. My bronchoscopy showed slight rejection but it may be from the CMV infection. In addition, I'm receiving IVIG infusions because my anitibodies are high. They call it a bump in the road but it feels like a sink hole. I'm looking forward to saying goodbye to sterile water so I can have a shower and drink whatever I want! Thank you everyone for all you cards. I re-read them when I am feeling discouraged. I think I will be doing some reading today.
Dec 31, 2016
My blood work showed positive for CMV. In order to treat this virus I had a picc line inserted yesterday. Marci and I will need to administer the IV medication twice a day. My bronchoscopy showed...
Dec 15, 2016
Home from the hospital with my new lungs. Thank you my angel.
Dec 15, 2016
I was discharged from the hospital today! I'm so grateful to be back in the apartment with all the comforts. I could have never done this without the support of family, friends, and the whole...
Oct 25, 2016
I am being listed tomorrow!!!!!
Oct 18, 2016
I did not see this coming.... I am coming off rapamune and in a week will be listed! Rapamune is the drug I take for LAM, my lung disease. I have to come off of it because it is an...
Oct 11, 2016
Today I had the FEES test performed and passed with flying colors! There was some concern about my swallowing so they put a camera into my nose, down my throat and had me drink and eat. After a...
Sep 29, 2016
The love and support I have received from so many, makes this journey almost one I would choose. Billy and Marilyn went back to The Cape last night. Marci and I are settling into our...
Sep 01, 2016
Billy, Marilyn and I will be leaving for Durham, NC Thursday, September 22. They will be doing me the honor of helping Marci and I move. Marci will join us on Sunday. The goal is to have...
Jun 20, 2016
I've been accepted to Duke!
Apr 24, 2016
In June, I'm heading to Duke University Hospital for an evaluation. Thank you to the hundreds of people who have made this possible!...
Mar 16, 2016
Thank you to everyone who came out and supported me this past Sunday! I'm going forward with getting evaluated at Duke, in North Carolina. Their program does the most lung transplants in the...
Jan 20, 2016
Hope you can join us at the next event, Daylight Savings Day, March 13th, 1-4. Click on the link below, Dine, Dance, Donate.
Nov 26, 2015
I'm grateful I have lived a blessed life surrounded by family and friends who have loved me even at times when I was not easy to love . I have been afforded gifts , I have not earned . Thank you to...
Nov 07, 2015
I am officially listed at Brigham and Women's Hospital.
Oct 06, 2015
Save the Date: Sunday March 13th, Daylight Savings Begins . Dine, Dance, Donate at the Roadhouse Café 1-4pm.
Aug 29, 2015
Yesterday was not fun . I woke with a headache , had to fast for the esophageal motility test( horrible test) , headache pain worsened, and then a bat was in the house . I just opened all doors and...
Aug 06, 2015
Next Thursday, we are going up to BWH to update some of my testing and to meet with the transplant team. I have a few schedule appointments locally in the beginning of September. Once these are...
Aug 01, 2015
HI everyone, if you are interested in helping out after my transplant, follow this link:https://www.lotsahelpinghands.com/c/726238/
Jul 15, 2015
July 11 at the No Way Open Golf Tournament was another wonderful success . I am eternally grateful for the love and support ! The next fundraiser will be held at The Roadhouse Cafe , date and...
Jun 24, 2015
In need of donations for a raffle on July 11th for a Golf tournament. Please and thank you.
May 25, 2015
Dear friends, I am need for raffle item donations for a golf tournament on July 11th. Email me if you can help out. Fundraising monies will be used for unpaid medical expenses. As well...
Apr 30, 2015
At my most recent doctor's appointment, I had great news. My lung function is stable, and I improved on my 6 minute walk. I owe this miracle to all of my lam sisters, physicians , researches, and...
Jan 02, 2015
Thank you to all the wonderful volunteers for another successful event. I am eternally grateful to all. We had a wonderful time at the Christmas Cider, bake , and bonus event.
Nov 29, 2014
After my most recent doctors appointment , I will be going active on the list sooner than I hoped.I don't want to miss the opportunity for a match. I will list at Brigham and Women's hospital...
Nov 19, 2014
In need of bakers and lottery ticket donations for the lottery wreath raffle. If you can help out , please call me 508-776-1733. Thanks !!!
Oct 20, 2014
I am looking for volunteers to help sell candy bars for the holiday season. If you would be willing to sell a box, please let me know. In addition, I am looking for the chocolate bars to be donated...
Sep 29, 2014
Dear family, friends, friends of friends, and complete strangers. I happy to announce that after The Evening of Hope my $25,000 goal has been reached! I have decided to raise my goal to...
Sep 26, 2014
I went to BWH to the transplant center for a check-up and to keep my tests updated. Somehow there was a misunderstanding between BWH and myself. Apparently, I can not dual list at University of...
Sep 23, 2014
I wanted to let everyone know that I was denied the ability to be evaluated at The University Of Pittsburgh Medical Center. The reason: it is not a medical necessity. It is laughable. "More than a...
Sep 19, 2014
Hi everyone, Thank you for all of the love and support at The Evening of Hope. We surpassed our goal for the night. It was an amazing evening ! I have an appointment at BWH in the transplant center...
Aug 20, 2014
For those of you not on Facebook, there is an event page An Evening Of Hope. We have been posting the many wonderful donations. There is something for everyone! You can sign up on the link below...
Aug 18, 2014
The kindness of strangers is alive and well my friends, trust me !