Emotionally Moving Video

I saw this link on my friend Jamie's website and had to pass this video along. It moved me to tears. What a lovely example of a father's love! I would encourage you to watch it.

http://www.godtube.com/view_video.php?viewkey=8cf08faca5dd9ea45513

I had my walk study this morning. It is very telling when you do a physical test like this of the progress of lung deterioration. Today I really struggled to walk 522 feet and had to sit down a couple of times during the 6 minutes. Back in April I walked 900 feet and in October I was able to walk 1200 feet. We are hoping this may increase my lung allocation score to get me closer to transplant, we'll see what happens.

I still don't have results from the MRI, but did receive word that I will need an ultrasound of my liver tomorrow. It looks as though I will be here through the weekend, but I am okay with that, I just want to feel a little better.

Love to you all! Nancy

Still no diagnosis

Hello! We still do not have a diagnosis, but I did have a CT of my chest last night and an MRI of my head this morning, so hopefully the results of one of those will give the doctors a clue as to what is going on; I dread the alternative of the spinal tap, but I will do what I have to.

I don't know how many of you followed Randy Pausch's story, but I had seen him back in September on Good Morning America and had been following him ever since. For those of you unfamiliar with him, he was a Computer Science Professor at Carnegie Mellon University here in Pittsburgh who was diagnosed with Pancreatic Cancer several months ago and gave a "Last Lecture" at his University that spread across the country and world through YouTube. Randy passed away last Friday; I heard the sad news in the car on our way to Pittsburgh. I had been really praying that Randy would beat the cancer, both for his family and for all of the people he touched with his last lecture. Last night ABC aired a final tribute to Randy and when it was over, I just couldn't sleep. I finally sat up, opened my computer, and wrote down the thoughts I was having, I would like to share them with you.

A Message for those with Chronic or Terminal Illness:

Have you ever wondered why so many people are drawn to and moved by a Randy Pausch (The Last Lecture) or a Morrie Schwartz (Tuesdays with Morrie)? It is because these men have lived their terminal illness with dignity and joy. They did not constantly ask, “Why me?” but instead accepted what they were given and made the most of it. We are all going to die, but seeing someone who knows he is dying, yet keeps living life to the fullest, brings us hope and a sense of peace; peace despite the inevitability of death.

In the last several months I have had a lot of time to reflect on, and wonder about, the role chronic illness plays in God’s overall plan. I have come to the realization that we may be misinterpreting the reasons for chronic and terminal illness. So many of us feel like we are being punished or that life isn’t fair, but I would challenge you to re-frame this life experience. Could it be that we have been chosen? Perhaps we should feel honored and privileged. Through our attitude about, and ability to cope, with our illness, we can be a model and inspiration to others, a tool God uses to help them appreciate their blessing of health and grow into better people. What an extraordinary gift we can give by living honorably with our discomfort.

If we can each strive to be that role model for others, our experience of illness can become a better and more fulfilling one because we are living out God’s perfect plan for us. May those of us with chronic and terminal illness strive to emulate brave people like Randy and Morrie, learning to live our lives of illness without anger, but instead delight in the life we’ve been given.


Love to you all! Nancy

I got this picture in an e-mail today from my friend Terry and thought it was too cute not to pass along. It also brings a little fun and cheer to my blog.

Dr. Pilewski was in this afternoon and we had a nice visit (he is such a WONDERFUL doctor!). He is going to order an MRI of my head to see if there are any signs of other problems, but if that comes back negative, I will probably need to have a Spinal Tap to test for Viral Meningitis. The bad news about this test is that it will most likely make me feel worse and there is no way to treat Viral Meningitis, but at least they would understand what is causing my fever and headaches.

All I can say is, please keep praying. Thank you! Nancy

I'm a Medical Mystery!

Well, I feel like I am on an episode of House (luckily, House isn't my doctor though, if he were I'd be in tears all of the time!) We are having difficulty figuring out what is going on with me. Although I do have some signs of sinusitis in my upper sinuses, no one is convinced that is the cause of my fevers and headache. I did have an ENT evaluation yesterday and my sinuses were swabbed, but the results of those test won't be back for 2 to 3 days. The fever has returned, along with the headache each evening. Today they are going to test my CO2 levels and I am going to repeat the 6 minute walk.

So, I really don't have any new news to report, we are just hanging out here at UPMC. I'll keep you posted... Nancy

Sleepy Sunday

Hello friends,

Sorry it has taken me so long to post today, I have been asleep most of the day. I had a very difficult night with extreme head pain and a fever of 101.7. I was awake until after 3:30 am because of the pain, but was finally given enough pain medication to allow me to settle down and sleep.

In consult with the doctors, we have decided that the way I am feeling may be due to Sinusitus and not a lung infection. I had a CT of my sinuses about an hour ago, so hopefully tomorrow morning I will know what is going on. I am not used to such severe headaches.

Despite the discomfort I am in, I look around at others here and realize how lucky I am. Things could be so much worse. The man in the room next to mine is a quadriplegic. As I lay awake last night trying to deal with my own pain, I wondered how I would cope were I him. I have the ability to get out of my bed, walk to the bathroom, feed myself, and the list goes on and on. We don't have to look far to find someone whose suffering seems so much greater than ours; I prayed for God to bring this man strength and comfort and that when I am suffering to let my memory of him remind me how blessed I truly am!

May God bless you all! Nancy

Excellent Article

I have been searching for a good article that gives a comprehensive overview of CF and transplantation. I think this one does a great job. It is from a medical journal, so it is lengthy and uses some medical terminology, but if you are interested in learning more, I recommend you read it.

Title: Advances in Lung Transplantation for Patients Who Have Cystic Fibrosis: Clinics in Chest

MedicineURL: http://www.mdconsult.com/das/journal/view/0/N/19487109?ja=581041&PAGE=1.html&issn=0272-5231&source=

Settled in Pittsburgh

Hello!

What a great surprise to log on today and see so many wonderful and supportive posts, especially from some long lost friends! (Marybeth, Amber, Ruby... how awesome to reconnect with all of you!)

I am settled at UPMC Montefiore hospital and am just hoping the new IV combination will work and will help me to start feeling better soon. We arrived in Pittsburgh yesterday at 12:30 and were taken right to a room in the ER. I was moved to a hospital room by 3:30, so it wasn't a long wait which was wonderful! The crazy thing is that I am in the same room I was in back in April (It's a "small" hospital).

I have been having a lot of head pain, so hopefully they will be doing an MRI to check my sinuses, though I will not be able to have any kind of sinus surgery until after my transplant. I will feel better just knowing what is causing the pain.

I got a wonderful surprise today. I called to find out what room my friend Julie was in so my parents could stop by and visit her and her mom told me she was discharged on Wednesday and is back at Family House. She was in the hospital exactly one month, a much shorter stay than any of us anticipated. Miracles certainly do happen, she is a living example of this!

Please don't worry about me. I am mentally up and ready to scale this new mountain. With God by my side, there is nothing I can't do!

Love to you all! Nancy

To UPMC Tomorrow

Dear friends,

I started feeling lousy on Tuesday, before my IVs had even ended and by today, I am really down. I have been coughing a lot and am running a fever, so the decision has been made that I need to be hospitalized. My parents and I will leave for Pittsburgh first thing tomorrow morning. Please pray that I have not become resistant to the antibiotics I need.

Love to you all! Nancy

Help Needed

Dear friends,

Would any of you be willing to donate some time running a table at Farm City Days or Rally in the Valley?  Ruth Palmquist has reserved a table at these events to sell my book, water, pop, and snacks, all to help with my medical fund.  If you would be interested, the times she needs volunteers are:

Farm City Days:

           August 2 from about 9 to 5

Rally in the Valley:

           August 15 from 5 to 11

           August 16 from 11 to 11

           August 17 from 11 to 6

I would appreciate any help you can offer.  To volunteer, please contact Ruth at 372-6369.

Thank you so much!!!!!!  Nancy

Monday

(Hannah & Me at Icecream Island in Portville taken by Ruth Palmquist)

Happy Monday to you!  I hope you had a wonderful weekend.  We did some partying this weekend with my sister-in-law and her family.  Saturday they had a party for the Olean General Hospital Emergency Room, Jeff is a PA there, and we were invited (that seemed only fitting since I keep them in business).  Leslie and Jeff outdid themselves with the food; I told them they should go into catering.  Sunday, we were invited for a repeat of leftovers that were just as good as the day before.  I was so thankful that my appetite has returned thanks to the IVs.

I took a trip to Walmart with Scott last night and used one of their scooters.  I couldn't tell you the last time I was in Walmart and it seemed so nice to be able to just buzz around and look at things on my own without someone pushing me. 

Today is my last day of IV antibiotics and I must admit, I am dreading what this week is going to bring.  I am just grateful for the few good days I've had to actually feel alive and human again!

God bless you all!  Nancy

So Blessed!

Happy Friday! It is hard to believe another week has gone by. I have been lax in posting this week for a very good reason, I have been too busy. With the IVs finally doing their job, I have been able to function again and it has been wonderful! I enjoyed a "walk" with my family at dusk the other evening through the woods. It was amazing how well my scooter handled the trail.

I had several visitors on Wednesday, my cousin Bridgette and her four children in the morning, they kept Hannah busy while the moms got to catch up. Then my friend Ruth came in the afternoon and took Hannah and me for a ride in her convertible, with a yummy stop for ice cream.

Yesterday, my dad took me out on the town for a trip to Staples, to Sherwin Williams (I finally picked a color for our bathroom) and a stop at Miller's Farm Market to enjoy the flowers. When we got home my sister-in-law and her family came over for a swim, then we all pooled resources and had a cook out together. What a wonderful few days!

Today is my day to rest, my parents are taking Hannah for a hike at Rock City, so I will have a quiet house all afternoon, hooray! It is very hazy and humid today, so the air conditioned house will be the best place for me.

I really needed the IV boost this week. I was very down and discouraged last week. I am often hesitant to share when I am down, but I think it is important for people to know that it is okay to feel sad, discouraged, and depressed some times. It doesn't matter how healthy or great your life is, you will still have times when you feel like this and it is normal and okay.

One of the things that got me through last week was reflecting on my many blessings. When we are down, we tend to focus on all the negatives in our lives, but by switching our focus to what we have to be thankful for, we can change our whole perspective. Believe me, I have much more to be thankful for than to complain about: I am loved and prayed for by so many people, I have a wonderful and supportive family, I have friends who genuinely care about me, I have a beautiful home that is bright and cheery even on the darkest days, I have a daughter who can make me smile when I am grumpy, I have a husband whose hugs and snuggles wrap me up and make me feel special... I could go on and on. I would encourage you, the next time you're feeling low, to start a list of blessings, you can't help but start to feel better!

My love to you all! Have a safe and wonderful weekend. Nancy

Quick Update

Hello!

I hope everyone had a good weekend.  My parents went to Niagara Falls, so we had a quiet family weekend.

My IV antibiotics have been extended another week, to my relief.  I really do so much better when I am on them, even though I feel like all I do is sleep and run IVs.

I spoke with Julie today and she continues to do well.  The major issue for her right now is her liver which has some clotting forming around it.  The doctors are afraid to open her up this soon to remove the clots, so they are hoping her body will absorb them, please pray that occurs.  It also sounds like she is going to need a liver transplant at some point.  When they got in there for surgery, her doctors realized her liver was worse than they had originally thought.  But, one thing at a time.  For now she is upbeat and doing well.  Her drainage tubes were removed today, so she has more freedom and she seemed very happy about that.

Enjoy the rest of your day!  Nancy

I got my smile back!

I am so glad to let you all know that my smile made a return trip to my face yesterday and hasn't left since. The humidity was down yesterday, so I was able to actually go outside and watch Hannah jump on the trampoline and swim in the pool. We even went for ice-cream last evening.

To top yesterday off, I got a call from a friend of mine in CA who is also a mom with CF awaiting a lung transplant at UPMC. We have been communicating via e-mail, but this was our first phone call. It helps so much to be able to speak with someone who is going through the same thing you are and to be able to openly share fears, struggles, and dreams of what is to come. Cammi, you truly brought a smile to my face!

Today, Scott brought home a special treat. He and the guys at his company fixed up this little scooter for me. It is able to drive down our bumpy driveway and all over the lawn. It is so much fun and will give me the freedom to go next door to my mother-in-law or sister-in-law's without having to use the car, hooray for me!

So, I drove happily off into the sunset looking forward to all of the new adventures that await me and my new found freedom to get around!

Love you all! Nancy

So Tired

My dear friends,

I know you worry when you don't hear from me for a few days and I apologize for leaving you hanging.  Although the IVs are making me feel better (no more fever and a better appetite), I have been extremely exhausted and have been sleeping quite a bit.  I have to be honest, it is discouraging spending such beautiful days sleeping, but my body is tired and obviously in need of extra sleep.  I have a hard time staying mentally up when I am so tired, but I pray each day for continued strength and patience.

I wanted to thank you all for the positive responses you gave to my posting on becoming an organ donor.  I am so proud of you for taking this issue so seriously and was thrilled to hear that some of you had also added organ donation to your licenses.  What a beautiful gift you are giving to those of us in desperate need!

I hope you are all well.  Please know that you are in my heart and my thoughts daily!  Nancy

Article

Thank you to my friend Pat for sending me the link to this article, I wanted to share it with all of you.

Pittsburgh Tribune Review

Family House comforts, strengthens patients
By Chris TogneriTRIBUNE-REVIEWSunday, July 6, 2008

Julie Trahan was scared and homesick. She had not eaten solid food in 18 months. Her weight plummeted to just under 70 pounds. Several organs were failing, and she was too weak to get out of the car.

But as her mother went inside Family House Shadyside and signed papers clearing the way for an indefinite stay in Pittsburgh, Trahan, 28, of Rodman, N.Y., got a good feeling. "From where I sat in the vehicle, I could see little lamps and paintings through the windows," she said. "I thought, 'What have I stepped into? This is going to be good.'

"I kept thinking about Christmas for some reason," she said. "I thought, 'Well, if I'm still here, I'll dream about walking down the stairs to a Christmas tree.' We would have a huge tree. I imagined everyone around it, decorating it, putting presents under it. "And then I wouldn't have to miss home."

That's the goal at Family House. Now in its 25th year of providing shelter and moral support to critically ill patients and caregivers who travel to seek treatment in Pittsburgh, Family House is expanding. Officials recently began building a fourth facility, in Oakland.

Family House officials said they aim to create a homelike environment so patients can focus on fighting their illnesses, and to charge as little as possible. Rooms start at $30 for a single and run to $50 for a suite for four people. Prices at nearby hotels are two to three times higher.
The nonprofit was founded in 1983 by doctors and civic leaders who said they were tired of watching patients' caregivers sleep in chairs in hospital waiting rooms. Donations and volunteers help to keep it running.

For critically ill patients such as Trahan, Family House is a blessing. She was diagnosed with post-viral gastroparesis, which prevented her from digesting food. She arrived in Pittsburgh on April 30 to await stomach, small bowel and pancreas transplants.

Trahan did not know where she was on the waiting list, only that she was close enough to the top that University of Pittsburgh Medical Center officials needed her nearby.

She was called in June 25, underwent transplant surgery and is recovering at UPMC Montefiore. "She's amazed the doctors and nurses with how great she looks," Mary Trahan said of her daughter last week. "When she came out of the surgery, she said she's hungry."

Julie Trahan still faces a long and difficult road. She does not know how long she will be in Pittsburgh, only that when she is well enough, she will move from her hospital bed back to Family House for at least six months so doctors can closely monitor her recovery.
Because of the uncertainty around the surgery, her dad and sister stayed behind in Rodman.

Trahan misses them, but said she has found a family here. "You end up acting and doing things like you would in your home," she said. "We have puzzle night in the library, and that's what I used to do with my sister back home. They have built this place for us -- lonely people that are sick and need a place to stay. "This is scary, but everyone here understands. Somewhere else, I'd be isolated and alone. Here, all of that melts away."

Theresa Lewis, 48, and her mother, Beverly Lewis, 68, agree that staying at Family House has helped them navigate difficult times. They travel to Family House every few weeks from Norman, Okla., while Beverly Lewis receives breast cancer treatment at UPMC Presbyterian and Shadyside. "I was willing to go anywhere in the world, but staying at Family House is like staying with an extended family," Theresa Lewis said. "You can talk to strangers here because you're all going through the same thing."

"It's a place of hope," Beverly Lewis said. "People come in here fighting for their lives."
Theresa Lewis said she and her mother are their family's only living members. In 1982, a plane crash in New Mexico killed her father and two brothers. "We're all going to die, but she can't die until I go because I'm the only one left," Theresa Lewis said. "I tell her that the day I die, she can go the next day."

There are three Family Houses in Pittsburgh -- two in Oakland, on Neville Avenue and McKee Place, and one in Shadyside, where Trahan stays, across the street from UPMC Shadyside. The facilities have a total of 115 rooms.

Demand is high: The facilities run at an average occupancy rate of 93 percent, and officials must turn away more than half of those seeking accommodations, Executive Director Christie Knott said.

To meet demand, the fourth facility is being built on the top four floors of the University of Pittsburgh's University Club building in Oakland. That will add 45 guest rooms and suites, Knott said. The $4 million project is being paid for with donations -- half has been raised -- and should be completed by February.

After the expansion, the "turn-away rate" will drop from 54 percent to 28 percent, Knott said.
"That feels more in line with our mission," Knott said. "Turning people away -- it's heartbreaking."

Trahan is thankful she was not turned away. Before her surgery, Trahan said the wait for healthy organs was made easier by the staff and guests at Family House. "In a hotel, I'd be the sick one," she said. "People would stare at me. Here, there are whole days when I don't even think about it. When you're sick, sometimes you just need comfort. It takes your mind away from the aches and pains."

More than comfort, the supportive atmosphere at Family House might actually give patients a better chance of surviving, said Holly Lorenz, vice president of Patient Care Services and chief nursing officer at UPMC Presbyterian. "Cancer patients that have a strong faith or a strong family support system, their outcome, their response to treatment is much stronger than those who don't," she said. "I'm sure that there is that kind of effect going on at Family House."

The 12 full-time and 22 part-time staff members at the three homes try not to become emotionally involved with guests, said Kay Bebenek, manager of the Shadyside facility.
But that's not always possible, Bebenek said. For example, she recalled the day Trahan arrived.
"Meeting her -- it kind of choked me up," Bebenek said. "I had to look away. I try not to get close, but how can you help it? I admire these people. Everyone who comes in here is fighting for their life. Yeah, we lose sometimes. But we have many success stories here."

Even before her surgery, when Trahan did not know if the organs she needed to live would become available, she said Family House had given her the strength to imagine a future.
"When I'm married and have children," she said, "I want my children to see this place that gave me hope and the will to carry on, the place that cared for their mother when she needed it most.
"I think that will be a beautiful day."

A Happy 4th of July!

I hope you all had a wonderful 4th. We had a lovely picnic at my mother-in-law's and then, after a long afternoon nap, I was able to join my family to go and watch the fireworks. As others were setting up camera tripods, I was setting up an IV tripod; I think I was the only one doing IVs at the fireworks, but you know I always try to be unique! : )

Hannah, Simon, & Lydia had a great time running around in the grass before the fireworks. Boy do I wish I could bottle some of that energy! I think we all slept well last night!



This morning I got a special treat, I was holding Hannah's Guinea Pig, Oreo, and our kitty Jasper decided to join us. Normally Jasper is terrified of Oreo, but I guess he decided if he wanted love from me, he'd have to deal with Oreo. Here we are snuggling!

Good News

Good Morning!

For those of you who know me well, you know not getting an update from me for a couple of days is probably not a good sign.  I have been feeling pretty lousy and sleeping quite a bit.  At first I thought it was just the exhaustion of our trip to Pittsburgh, but by Monday I realized I was just plain sick.  I was able to start IV antibiotics on Tuesday, so I am hopeful things will be looking up.  I just can't seem to function without the assistance of IVs.

I do have some wonderful news to report, however.  I had a lovely talk with Julie this morning.  She is doing GREAT and is out of ICU.  She has been receiving Enteral feeds through a feeding tube like mine and has been tolerating that well, so hopefully in the next couple of days she will graduate to a liquid diet.  She told me she was able to get out of bed and walk around her room yesterday.  She sounded strong and happy and I couldn't help but cry with joy for the miracle that has happened for her!

Keep up those prayers, God is listening and is working through them!  I hope you all have a safe and fun 4th of July weekend!  Nancy