March 17, 2018

I had a recent scare. My lung function had a slight decline due to a resprirtory virus. Any virus I contract can fuel rejection of my lungs. I’m am overwhelmed to report, NO rejection!

However, I am fighting nausea due to gatroparesis. During my transplant my vagus nerve was effected and in return has slowed my stomach function. In addition, I still have acid reflux. This is concerning because it could easily contaminate my lungs and cause rejection. Surgery may be in my future.

Overall, I’m doing fabulous and finally feeling truly grateful! Thank you for your continued support and prayers!

Namaste, Trish

August 6, 2017

I went to Duke this past week for a week of Appointments and tests. All went well. I'm still waiting for results from the manometry and ph probe test. These assess acid reflux. Hopefully the results show the Stretta procedure has been effective.

I return to Duke next month to have appoinmentes and a bronchoscopy. With much luck, it will show my rejection is gone.

I was able to enjoy time with family and friends during my visit and attend a Red Sox game on my return. We were blessed to be given 2nd row seats between the on deck circle and the Red Sox dugout (thanks Dana). Plus, I got an upgrade to a first class ticket and an extra day since my original flight kept being delayed (thanks Mandy).

I am blessed!

June 21, 2017

I'm leaving Durham on Friday to go home!!!!

April 20, 2017

I've been having a bumpy road. As was explained prior to this journey, transplant is not a cure, more like trading one disease for another.

I've been having trouble fighting off a CMV infection. We will try another line of defense called cytogam. Also, I have level one lung rejection. The CMV needs to be controlled prior to treating the rejection. My next bronchoscopy is May 10th. This will evaluate my rejection. Lastly, I'm having a surgery called stretta to control my acid reflux. Reflux can cause rejection and/or infection in the lungs. More will be revealed as we ride this rollercoaster.

Meanwhile, my lease ends in May and I pray I can come home. Otherwise, I will be living in a hotel. I'm certain my next update will be more positive.

Thanks everyone for your continued support. Love, Trish

March 10, 2017

Hi everyone,

I got my picc line removed today. It has been in my arm for what seems like forever! I think it was around 3 months. The CMV blood test has been negative for three consecutive weeks. This means I don't need to do home infusions with the anti- viral medication.

Hence, the removal of the picc line.

If my bronchospy results are good next week, I plan to be home by May 1st.

Forever Grateful,

Trish

January 18, 2017

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!!!

December 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.

December 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.

December 16, 2016

Home from the hospital with my new lungs.

Thank you my angel.

December 16, 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 community at large.

Thank you!!!!!!

October 26, 2016

I am being listed tomorrow!!!!!

October 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 immunosuppressive drug and it has a black box warning regarding lung transplantation.

Thank you for your support and prayers,

Trish

October 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 lung transplant, if a person aspirates (food or liquid goes down the windpipe) it could lead to an infection.

Everyday, I will do swalling exercises to prevent aspiration. Plus, the better my swallow, the sooner I can eat and stay away from needing a feeding tube after transplant.

Pulmonary rehab is five days a week and my most recent CT scan of my kidneys look good. Most of us with LAM have angiomyolipomas,benign kidney tumors made up of LAM cells. If your unlucky, they can grow too large and become a problem. Another reason for the CT scan is to rule out cancer. If you have cancer, you can't have a transplant.

I'm in great shape for the shape I'm in as my dad would say. Feeling grateful!

September 30, 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 beautiful apartment and missing them. With their help and local help from "Anne the Angel" and her neighborhood folks, CARY, NC folks (containment area relocated Yankees) we have everything we need and beyond!

Now I can use my energy for pulmonary rehab starting next week and more appointments and tests!

Thank you to family, friends, friends of friends, strangers, and "anonymous" for your continued support. You are saving me life!

Blessings, Trish

September 2, 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 our apartment in living condition before I begin two months of pulmonary rehab starting October 5th. Then, a few more tests, and I have no doubt I will be accepted to Duke's prestigious lung transplant program.

Blessings to the hundreds of people praying and supporting me. I fight for life in your honor.

June 20, 2016

I've been accepted to Duke!

April 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!

www.dukemedicine.org

March 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 country. Their average wait time for fifty percent of their patients is only two weeks.

If I'm accepted, I'm considering moving in the fall. If it were not for the generous support of so many, this would not be possible .

Thank you does not begin to express my gratitude.

January 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.

November 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 all , near and far, friends , friends of friends , and "anonymous" who uplift my hope with your donations , gift of time, spiritual guidance , prayers, and pure love . These gifts are not just for me . I extend them to all that I can reach . To help another is a true blessing and I will continue to the day I die to share these gifts . Thank you and God Bless.

November 7, 2015

I am officially listed at Brigham and Women's Hospital.

October 6, 2015

Save the Date: Sunday March 13th, Daylight Savings Begins . Dine, Dance, Donate at the Roadhouse Café 1-4pm.

August 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 said goodluck to the cat and bat ; went to bed ! I couldn't deal with that !

Today feeling good and no bat !

August 6, 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 completed then my case is reviewed again by the board for acceptance for lung transplantation. As long as all my tests are normal, I should be given the go ahead to be active on the transplant list.

August 1, 2015

HI everyone, if you are interested in helping out after my transplant, follow this link:www.lotsahelpinghands.com

July 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 time to be announced .

Today the Doctor told me it is time for me to go active on the transplant list .

I will need to update a few more tests and then the waiting begins . The average wait time is 2 years .

June 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 as, living expenses if I need to move out of state to find a donor. My secondary health insurance may not pay for out-of-state transplant expenses. Many transplant centers do not take people only on Medicare, unless they have $10,000-$25,000 "in the bank" . A med-flight to Cincinnati will cost around $10,000. These are just a few examples.

I will continue to fundraise as my life depends on it.

Love, Trish

April 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 The LAM Foundation who fight tireless for effective treatment and eventually a cure for lyphangioleiomyomatosis (LAM). If it were not for them, I would not be stable. Rapamune has stabilized my lung function. However, it is not a cure and it's efficacy for long term is unknown. Eventually, I will have to have a lung transplant.

At this time, it is not necessary to "go active" on the transplant list. Going active means that I would be waiting a phone call at any moment for a donor match.

Due to the grave risks of lung transplantation, it is best that I wait until absolutely necessary to " go active" on the transplant list.I am closely monitored by a team at Brigham and Women's Hospital. My doctors and I keep all of my tests update , so that, if needed I can" go active" immediately.

I continue to fundraise to ensure money is not an obstacle to my lung transplantation. There may come a day, I will need to move out of state for my transplant. As a reminder, all monies are held in the Northeast Transplant Fund. In the event I am unable to use this money, it will be used by others in need via HelpHOPELive. God Bless!

January 2, 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.

November 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 because they allow me to stay on the drug, rapamune. This drug has been keeping me stable for the past three years. I will make the decide at my next appointment in March if I should list then.

Dual listing at Cleveland Clinic, is not a option . Their policy is such that I would have to stop taking rapamune. Doing so would mean my lung function would decline. Hopefully in time ,Cleveland Clinic will change their policy and follow Brigham and Women's example regarding rapamune.

A donor match is determined by my lung allocation score. Many factors make up the Lung allocation score. The higher my score the higher on the list I'll be . Although I don't know my exact number ,I know it is not very high because my lung function is fairly functional compared to other's on the list . In addition, my lung disease LAM, doesn't score very high. This is because LAM overall is a slow progressing disease compared to other lung diseases. This means I could be on the list for years before I get the call.

November 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 !!!

October 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 or at a reduced price. As a chocolate connoisseur, I would love to sell chocolate from a local chocolatier. Thank You for you consideration.

September 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 $50,000. When the time comes, money will be no obstacle. If I am transplanted out of sate , I will afford the $10,000 med-flight thanks to you. If I must live out of state for a year, I will be able to do so because of your support. A denial from an insurance company will not keep me from living. Rest your heads on the pillow tonight, knowing you have been heroic with your love and I will never take it for granted. God Bless, Trish

September 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 Pittsburg Medical Center because they are too far away. They thought I was looking to only list at UPMC. However, I can dual list at Cleveland Clinic because they offer a jet. When the time arrives, I will pursue this avenue. I have faith my insurance will say yes. At his time , I am still stable and do not need to go active on the transplant list! Very good news!!!!

September 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 100,000 men, women and children are on the wait list for a lifesaving transplant in the United States. An average of 18 people die each day from the lack of available organs for transplant." I am trying to increase my chances of finding a matching donor by dual listing in at UPMC and I am told it's not medically necessary! Rest assure my friends , by the time I get to the bottom of this, I will be accepted!

September 20, 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 September 25th. I will keep you posted. God Bless.

August 21, 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 $20 per person or $25 at the door. Cash or checks accepted. Thank You for your support!

August 19, 2014

The kindness of strangers is alive and well my friends, trust me !

August 13, 2014

www.fda.gov

This is for all those people who don't follow me on facebook. I have been waiting for this miracle of science to passed by FDA.

July 1, 2014

I am waiting to hear from University of Pittsburg Medical Center (UPMC) to see if my insurance will cover another evaluation. UPMC has an amazing program. It is considered a high volume center which accepts difficult cases while producing promising results.

Meanwhile, I am stable and preparing for whatever may lie ahead. Each day , more and more wonderful donations are being made for the Evening of Hope! Thank You!

May 7, 2014

I have been accepted to Brigham and Women's transplant program ! The next step is an evaluation process at another hospital so I can dual list and increase my odds . None of this would be possible without your support . Thank you !

May 1, 2014

We are hoping to announce very soon the date and venue for the silent auction event. Your generous donations will help Tricia in countless ways. For example, due to the difficult task of finding a match from a donor, it may be necessary for Tricia to move to another state for an indefinite period of time while being evaluated and/or recuperating from surgery.

Blessings to all of you who have offered your prayers, time, and services.

April 18, 2014

I received great news today. My diaphragm is not paralyzed and the cardiologist has cleared me for surgery. Now my case, will be reviewed again. I will update soon. Thanks for your support!

March 24, 2014

I have been deferred from the transplant list at this time. There is concern that my right diaphragm may be paralyzed from surgery (pleurodesis) I had done in 2010. I am undergoing more tests at this time and then they will let me know if I am going to be eligible for one or two lungs. Thank You for your continued support.

March 6, 2014

Again, thank you to all for your support! I would like to take this opportunity to stress the importance of being your own advocate in the management of your healthcare, or find someone who can do it for you. I am blessed to have doctors who are the best in the world. Yet, the system is imperfect.

It seems I need one more test and then my case will be presented to the board. I have good news, ejection fraction (the amount of blood the heart pumps) was measured to be 45%-50% with my first echocardiogram. The second echo with contrast proved to be 54%. Normal is considered 55%-70%.

I will keep you all updated as soon as I know. Thank You! Thank You! Thank You!

February 1, 2014

For the past five months, I have been undergoing tests as part of the transplant evaluation at Brigham and Women's hospital in Boston. I have one test remaining and should be notified sometime this month with the determination. The results could be as follows: accepted, declined, or deferred. Although acceptance would seem to be the best outcome, in reality, deferred for a future date would be best. The longer I can defer from being on the list, the increase chance of a longer life. Again, I am overwhelmed with gratitude by the generosity of my friends; old, new, and friends of friends I don't even know. God Bless, Trish