Hannah's First Communion

We were finally able to celebrate Hannah's First Communion today. We had originally planned it for Mother's Day, but our move to Pittsburgh forced us to cancel. We have waited all summer, hoping we could do it after my transplant, but decided we needed to do it now. I want to say a special thank you to Father Greg and Sister Regina who helped us put this together on such short notice. I also want to thank the Rowe family for waiting so that Hannah and Alexis could make their First Communion together. Fr. Greg brought along the choir from St. Mary's, which we so appreciated. It truly was a celebration and I am so grateful that I could be there!

Here are some pictures from this wonderful day!

Hannah & Sr. Regina

Father had the children ring the bell before mass began.

Hannah was just glowing!

Celebrating her first Eucharist at the altar with Fr. Greg.

My mom had the honor of actually giving Hannah her first Communion, that was VERY special!

End of IVs

Hello friends,

As of today, I have completed another round of IV antibiotics. I need your prayers. As most of you know, I tend to get sick pretty quickly without the IVs, but I am hoping the infections will stay away for a little while. The current round of IVs has taken a lot out of me, I am exhausted all of the time and extremely nauseous, despite my anti-nausea meds. I am looking forward to a break.

With the holiday weekend approaching, my nerves are on over-drive. Please pray that people choose safety this weekend and don't drink and drive. As much as I hope for the miracle of new lungs, I don't want any families to have to experience tragedy this Labor Day Weekend.

Please stay safe and have a relaxing weekend. All my love! Nancy

More About Sweet Pea

I recently introduced you to our new addition, Sweet Pea, but I wanted to share a little more with you. Sweet Pea was captured by Hannah and her friend Gabriella on Saturday, August 16 to our shock and their extreme delight! Scott proceeded to call a friend who had been looking for a kitten, not at all what Hannah had planned.

On Sunday, we lost Sweet Pea in the basement and she was not discovered until the following day. When she was re-united with us, we noticed a large cut on her neck that seemed to be infected (well, we certainly couldn't give up a hurt little kitty, now could we?). We took her to the vet on Tuesday and discovered that a grub had probably come out of her neck, (YUCK!) but the vet cleaned it well, put on this cute lamp shade looking thing, and gave us antibiotics. That night, Scott gave in and said we could keep her (Hooray!).

So here is the progression:

Hannah captures an adorable little kitten. We wonder what is wrong with her because she seems to be dizzy and falls over a lot!

Daddy says, "NO NEW KITTY!" : (

Kitty starts loving on everyone, especially Daddy! Plus, she is so darn cute!

Kitty gets a new name, Sweet Pea. We find out she is about 7 weeks old. Obviously something bad happened to her mommy, but she was quick to adopt Scott and I as her new parents.

Our cat Jasper, wasn't too sure about this new addition, but he is slowly warming up. He even shares his food with her, what a good boy!

So, everyone is happy at the Matthews house,

even Daddy who had a kitten snuggled up by his

neck all night long.

We love you, Sweet Pea!

Quick Post

Hello!

I just wanted to let you know that I am doing okay. The events of the weekend really caught up with me yesterday and I slept for 19 hours! I think my family wondered if I was still living. I still feel quite tired this morning, so I obviously needed some good sleep.

I am hopeful I will be able to post some new pictures of Sweet Pea soon. She has really brought me a great deal of joy and is a wonderful snuggle buddy in bed!

Love to you all! Nancy

UPMC Update

Hello friends!

We returned from Pittsburgh yesterday, but I have been too exhausted to post. It is amazing how tired I get just riding around in a wheelchair!

We had a good couple of days. My appointment went well. I will remain on the current IV medication for another week, then we will switch to a new antibiotic we haven't tried before to see if I can ward off another lung infection. I was also able to get some pain medication to help with the constant pain I am experiencing in my chest. That has helped me get to sleep at night, which I am thankful for.

According to Dr. Pilewski, I am now first on the list for our region. UNOS is separated into 11 different regions, UPMC's region includes Pennsylvania, Delaware, Maryland, and West Virginia. So, if lungs my size and type become available in this region, I will have first dibs. I think that is a good sign, but we'll see. I will return to Pittsburgh on September 11, unless I get that miracle call.

I was able to catch up with my friends at Family House including Julie and Mary Trahan. Julie looks wonderful! Unfortunately, I didn't have a camera, so we had to make do with a cell phone picture, but at least you can get an idea of how great she looks.

We completed all of Hannah's school shopping, hooray! It is hard to believe they start school in a little over a week, where did the summer go?

I hope you all had a wonderful weekend! Thank you for your continued prayers! All my love! Nancy

I would like to introduce the newest Matthews

I am excited to introduce you to our new little girl, Sweet Pea. We decided today to adopt this little kitty. Hannah and I are thrilled, Scott, not so much, but he will grow to love her as much as we do already.

It was a good day, I had a surprise visit from my good friend Deb whom I haven't seen since January. It is always nice to get a hug from a good friend!

We are preparing for our trip to UPMC on Thursday. Hopefully I will feel up to doing some school shopping for Hannah.

I send my love to you all! Nancy

Pictures from Niagara Falls

A message from Nancy's Dad to those who love her.

Nancy's health continues to deteriorate, but she is keeping a very positive outlook while at the same time realizing that the longer the wait goes on the less chance there is that she will survive until she can receive this transplant. It is agonizing to watch her have to struggle this way, but if anyone can make it, we know she has the will and the determination to do so. Now it is simply beyond our control and we will need to accept whatever fate awaits her and us. Bad things do happen to good people, but it is the way we choose to live our lives, regardless the outcome, that either make us miserable or make us fight and take advantage of every last breath we take to try and make a difference for someone else. Nancy's life and legacy will be one of sharing her joy and love for life and her willingness to serve as an example for others to help them understand that it isn't how long we live, but how well we live that is the most important lesson to be learned from a terminal diagnosis. She has become an inspiration to many, including Ann and me, and we are so very proud of all that she has accomplished in her 33 years. She has lived a productive and full life in spite of her disease and all it's dealt her, and she has achieved so much more than most who have lived far longer than she has. What an example she has set for her daughter, her friends, and her family. We have done all that we know to do to get her to the point where she can have this transplant, and if God or fate allows it, she will have at least a few good years more to enjoy and love all of us and we to love her in return. If that is not meant to be, we will have no regrets knowing that we did all in our power to give her this opportunity and we MUST accept whatever happens as being the way things were meant to be. Nancy is a very religious woman and she has accepted that what ever God's will is she must accept it. And we go on one day at a time making the best of the time we have with her.

Adventures in Kitty Catching

Well, Hannah had quite an adventure yesterday. There was a little wild kitten hanging around the blueberry farm and Hannah decided she was going to catch this little kitty. Neither Scott nor I believed she would ever accomplish this, but yesterday Hannah arrived with a box, shaking and crying with excitement. Her friend Gabby and she had caught the kitty. After some spitting, the kitty finally settled down and realized she really liked the food and love we were giving her. She really is adorable. I don't think we will be able to keep her, but we can at least love on her for a while.

Cracker, our sweet dog, felt left out of the picture taking, so here he is trying to say cheese for the camera.


I hope you all have had a wonderful weekend! All my love! Nancy

The Highlights of my Day

Hello friends!

I wanted to share the highlights of my day with you.

First, I enjoyed a visit with my dear friend Amy and her little boy Davin. They were on their way to run the table at Rally in the Valley and stopped by to say hi. It was so wonderful to see them!

Then, a very special package arrived. Hannah has been saving money all summer for a doll house for her Barbies. She has been picking blueberries for her Uncle Jeff (for BIG bucks, $2.00/lb.) and finally reached her goal of $80. Her house arrived today and the joy on her face warmed my heart. There is nothing like seeing your child happy, especially when she has worked hard and achieved a goal!

Hannah and my parents had a wonderful trip to Niagara Falls yesterday, hopefully I can post some pictures from that adventure tomorrow.

Good night and God bless! Nancy

(Hannah's friend Gabriella is spending the night, so she was able to enjoy this special delivery as well!)

A Much Needed GOOD Day!

I am so excited to share that I finally had a good day yesterday! Although the morning was shaky, by the afternoon, I was able to get a hair cut and color, go for a ride on my scooter over to my sister-in-law's house, and have ice cream with Hannah and my mom after dinner. I had a lot to smile about!



The best part of my day, however, was re-connecting with a friend I have not seen since high school, Becky. She wrote the most amazing things about me on her blog (http://www.domesticbriefcase.blogspot.com/ ) including posting a cheerleading picture I haven't seen in quite a while of the two of us (though she is hidden in the horse costume). I continue to be astounded by the love and prayers that people are pouring over me. It makes all of this worth the fight!



The Internet is truly an amazing tool. Since I have set up this blog, I have had the pleasure of hearing from so many friends who I thought were lost forever. I continue to thank God for these amazing reunions that could only have come through my illness experience.



I also want to send out a big THANK YOU!!!! to everyone who responded to my plea for help and signed up for table time at Rally in the Valley. I guess you guys didn't think the Harley folk could handle the "coolness" of my scooter. I REALLY appreciate it!


Finally, I just wanted to share this cute picture of Hannah. For those of you who don't know Scott, he is a major motorcycle enthusiast and this is wearing off on his little girl. Over the weekend he borrowed this little bike so Hannah and he could ride around the lawn together. I have to say, she looked adorable on that little bike!



My parents took Hannah to Niagara Falls today, so I am planning to get a lot of rest in this nice quiet house.



May you all have a very happy and wonderful day! Nancy

First Day of School?!!

My niece, Amber, and nephews, Brian and Michael, started school today. I wanted to share their first day of school pic with you. Don't they look cute? I don't think the kids around here would be smiling if they were starting school today. When Hannah dragged down at 9:00 I asked if she would like to go to school today and she looked at me like I had three heads!

I hope you have a wonderful first day of school! Love you all! Aunt Nancy

Hello!

I just wanted to check in briefly. I am hanging in, but still not feeling very good. I think some of my discomfort is medication related (continued headaches, dizziness, and nausea). Since the medication changes on Saturday, I have stopped having any fevers, so that is definitely a good sign, now I just need to tough it out until I see Dr. Pilewski on August 21.

My parents travelled to Massachusetts over the weekend for my mom's 50th class reunion. She has been just glowing since she returned. I am so glad she was able to go and have really enjoyed the stories she has shared from this wonderful experience!

I wanted to share a couple more pictures of Hannah and her cousin Jacinda at Darien Lake with you. Believe it or not, Jacinda is actually several months older than Hannah. She is a sweetheart and we have been enjoying the girls' new found friendship!

Another Plea for Help

Hello friends!

I apologize for not posting this week, I must admit, I have been struggling. Although the IVs are keeping the infections somewhat controlled, they are not making me feel any better. The headaches have continued to be an issue and my chest is sore from all of the coughing I have been doing. An antibiotic change was made yesterday that may help, I am crossing my fingers.

Each time my body takes another step down this mountain called end-stage cystic fibrosis, it is difficult to maintain my footing. It usually takes a few days to accept that I am getting sicker and then to adjust and begin to cope with the new level of illness my body has entered. I am just thankful that God gives me the strength to adjust and then make the most out of my new situation.

I am not good at begging or asking for help, (as many of you know) but I need to ask you to please consider helping out at Rally in the Valley next weekend. My friends Ruth and Amy have only received offers for assistance for Friday night. They have done so much for me, I will feel horrible if they have to give up their entire weekend to run a table to help me. I may even have to drive my scooter down to run the table myself, if they don't get some assistance (I am sure my scooter would fit in nicely with all of the Harleys, LOL). I beg you, if you live in the area and have even an hour available to give next weekend, please give Amy Lafler a call at 716-378-7209, I will be forever grateful!!!!

Love to you all! Nancy

I'm Home!

We got home (to Westons Mills) yesterday afternoon and as always, walking in to our home gave me the best feeling! Other than having two middle of the night IVs to do, I got a GREAT night sleep! Today I was able to soak in the tub for an hour (heavenly!).


Hannah had gone with her cousin Jacinda to Darien Lake yesterday, so she did not get home until after 9:30, but when she did get home, I got a wonderful welcome home. She held me as tightly as she could and sobbed joyfully. It is so good to be loved!





I wanted to share a story with you. During my ten days in the hospital, everyone was WONDERFUL, but one of the nurse's aides stood out for her exceptional care and concern for me. On the day before I was released from the hospital, I asked my nurse who the nurse's aides' supervisor was. Her first response was to ask if I had had a problem with one of them. I explained that, actually, I wanted to commend Kelly for her excellent care.

I did not get a chance to talk with Kelly's supervisor before I left the hospital, so I called today. The supervisor seemed so pleased to get positive feedback about one of her employees instead of a complaint. This is the third time in the last few months that I have contacted a supervisor to report exceptional work by one of their employees.

Too frequently we are quick to report our dissatisfaction with the way we have been treated, but when was the last time you actually contacted an employee's boss to report what a good job they were doing? I would encourage you to start doing this, we should all recognize and report a job well done!

Love to you! Nancy

Home Today!

I am thrilled to report I am going to be released today. I started to run a fever again yesterday afternoon and became concerned about my release, but we believe the change in antibiotics over the weekend was incorrect, so they are sending me home on the appropriate antibiotics for three more weeks until I see Dr. Pilewski at the end of the month.

I can't wait to get some good rest. I am exhausted! They really don't let you sleep much in the hospital. I know Hannah and Scott are looking forward to my home coming.

God bless you all! Nancy

Sunday

Hello friends!

Another day at UPMC. The sun is shining and God is good!

We are still hoping I will be released tomorrow, though it may be later in the day. They have changed my antibiotic combination again, based on some recent lab results, but hopefully that won't put a hold on release. According to the doctor this morning, it also sounds like I may have moved up on the transplant list based on my resent testing. I won't know for sure until I talk to Dr. Pilewski, but that certainly sounds like a good sign that I am getting closer to my miracle.

Yesterday was a good day. I was able to catch up with one of my favorite nurses, Pat, who works on this floor in a different unit. I also had a visit from another friend from Family House, Tammy, and her parents. I was able to get to Mass yesterday with my mom. It felt great to get out and worship with others. I was also able to sit in what we call the "secret garden", a beautiful garden patio on the 7th floor here at Montefiore.

I have been making the most of my time here and have even begun my next book, a guide to help others with chronic and terminal illness. I continue to pray that God can use me to help and bring peace to others.

Love to you all! Nancy

Latest Article About Julie

Multiple-organ transplant recipient grows stronger at Family House

By Chris TogneriTRIBUNE-REVIEW

Saturday, August 2, 2008

As Julie Trahan recovers from a multiple-organ transplant, she dreams of the day she can thank her donor's family. "I want to let them know how grateful I am," Trahan said. "It isn't just about me now."

Trahan, 28, of Rodman, N.Y., was featured last month in a Tribune-Review story on Family House, a nonprofit that provides shelter and moral support to critically ill patients who travel to Pittsburgh for medical treatment and their caregivers.

As a child, Trahan contracted post-viral gastroparesis, a condition that prevents people from digesting food. She came to Pittsburgh on April 30 to await stomach, small bowel and pancreas transplants.

Trahan underwent surgery June 26. She left UPMC Montefiore July 23 and is recovering at Family House Shadyside. "The transplant was a larger success than what the doctors had hoped for," Trahan said. "They were really amazed."

Before the surgery, Trahan had not eaten solid food since 2006, and her weight plummeted to 61 pounds. Now she weighs 80 pounds and is working with a nutritionist to develop a healthy diet. Trahan does not know how much longer she will have to stay at Family House. Doctors want her close so they can monitor her recovery, she said.

Transplant patients nearly always experience some level of organ rejection. So far, however, her body has responded well and she has passed "the most critical stage for rejection," she said. "I am doing so well," she said. "I am constantly thinking of the future -- that I have one, that I won't have to go through the pain that I did. It's a relief."

Her mother, Mary Trahan, said Julie still faces obstacles, but that hopefully the worst is over. "I feel pretty fortunate to have my daughter back," she said.

Trahan does not know the name of her donor. She said doctors told her only that the organs came from "a small boy who lived in tornado country." Donor recipients are advised to wait a year before deciding whether to attempt contact with the donor's family, said Holly Bulvony, director of corporate communications and public education for the Center for Organ Recovery and Education.

Trahan said she would write to her donor's family. "I want to let them know that I'll do anything I can to keep their child's memory alive." She dreamed of her donor, even before the surgery, and believes his name is Michael. "He's a blond-haired boy," she said. "He told me in one dream, 'They tell me I have to die, but that's OK because I know you're hurting.' "

Busy Day

Hello!

Today seems like it has been very busy. I had Pulmonary Function Tests first thing this morning, then was taken for an ultrasound of my liver. I have not heard results from the ultrasound, but I did find out that the MRI was normal, so that is a huge relief. I have found that the headaches get worse when I am tired, running a fever, have exerted myself, or am having a sugar low. Based on this, we believe they may be stress headaches caused by my body being taxed. I will not have to have the spinal tap, if anything had been significantly wrong, they would have seen it either on the CT or MRI.

I am very tired this evening, but still in good spirits. The hope is still that I will be able to go home on Monday.

God works in wonderful ways. I have to tell you what happened this morning. The hospital escort who brought me to my ultrasound was obviously new and when we arrived at the waiting room, realized she had left my chart back on the 8th floor. She left to retrieve my file, so I had a few minutes to wait and you will never guess who was laying on the gurney next to mine, Julie! She looked incredible, her face has filled out so much and she just looked beautiful. Her mom has come to visit me a couple of times, but I have not had the pleasure of seeing Julie. We had a few minutes to catch up before she was taken to her test and it was wonderful! Soon after Julie left, my transport arrived with my chart. Come to find out, she had brought me to the wrong waiting room, so they moved me. A mistake on the part of my escort allowed me to see Julie, you can't tell me God isn't working in my life!

Blessings and love to you all! Nancy