A Sunny Day

Hello friends!

I am sorry I have been out of touch. I spent the weekend trying to recover from this latest setback. I am still very tired, but my spirits are up and I know I am healing. I have been struggling with swelling again. In the hospital my face was huge with water, but now that I am up and moving around it is concentrating in my feet and ankles. We went to Walmart last night and by the time I got home my feet were enormous and killing me, but right now, I'll take that happily over the other concerns I have been facing.

I am kind of moving in slow motion today, but it is beautiful out (cold, but sunny), so I am loving just sitting in the living room and soaking it all up. I am so looking forward to Spring when I can get out of the house for walks, watch all the flowers pushing up and looking magnificent, and just enjoy the fresh spring air. We heard the peepers a couple of nights ago and that is always a sure sign of Spring!

I wanted to ask a special favor. My friend Cammi is still waiting for lungs in Pittsburgh. She has had a couple of false alarms, but needs the real thing. They are facing some difficult decisions about whether or not to double list at UPMC and Cleveland. Please say some extra prayers that they will get their miracle soon and that God will guide them to the right location. She is a very special woman and is needed by so many! Thank you!

I hope your day is sunny, I send my love! Nancy

Hello friends!

We returned home last night around 8:00 and it felt so good to sleep in my own bed. This past week has been a nightmare. Luckily none of us really understood, until yesterday, how severe my issues were. It turns out my kidneys were failing due to the infection and my anti-rejection drugs. It is a good thing I got to the ER and then to UPMC when I did.

The last few days are a blurr of pain and drowsiness. I was in so much pain both in my back and stomach that they had me on three different pain medications, so I could barely function. The removal of the feeding tube was DREADFUL and done without any soothing medications for me, but it seems to be healing nicely after such a nasty infection, so I am glad it is gone.

My blood counts are still off whack, but are improving and hopefully as the infection totally resolves (I have two more weeks of antibiotics), my blood count will be back on track. They were able to get my kidneys working again without Dialysis, thank you God.

I am tired and sore today, but so glad to be home. Thank you for your thoughts and prayers! Nancy

ON HER WAY HOME!

As of late this afternoon, Nancy was released from UPMC and is now on the way home with Scott and Leslie.  She should be back with her Hannah sometime early tonight.  Give her a couple of days to settle in, but after that I expect she will be back blogging again!  

Welcome home again Nancy...your mother and I are so glad you're on the mend and hope you'll be feeling much better after a few days of settling in!

Love to all!

Dad

Vance

NANCY IS RESTING AND GETTING SOME SLEEP!

Nancy seems to be resting after having had the feeding tube removed and she is sleeping quite a bit.  No definite timeline for when she might be released from the hospital, but it sounds as though it could be as early as tomorrow or the next day.  Scott and Leslie are still there and I'm assuming they will stay until she is released to return home.  At least for now it sounds as though the worst of this episode is behind her and all she needs is some good rest and sleep to regain her strength.  Will post again if anything develops that is worth reporting on.  So, no news, in this case, does mean good news and hopefully she will be back posting on her own once she returns home.  

Thanks again for all the cheerleading you do for her, not to mention the support you provide for all of us as we travel down this road to her new life.

Love,

Nancy's Dad

Vance

FEEDING TUBE HAS BEEN REMOVED!

We know not how or when this happened, but happen it has!  Will give further info as it becomes available.  Nancy was quite groggy when Ann spoke with her so we know nothing more than that the tube has been removed.  

Nancy's Dad

Vance

UPDATE 2

Spoke to Nancy and the word is that the Gastroenterologist has decided that they want to wait a couple of days to see how she does without using the feeding tube before removing it.  Nancy seemed quite disappointed with this decision, but her doctor who wanted it removed has gone out of town, so there is little she can do but go along with the request even though she feels strongly that the tube should be removed now.  She has been given some sleeping medication again for tonight and her doctor has asked that she not be disturbed anymore than is absolutely necessary so she can get some rest tonight.  Scott and his sister Leslie arrived there today though I do not know how long they plan on staying in Pittsburgh.  Hannah is in the able hands of her Grandma Gail, so everything seems to be covered for the time being.  

Nancy requested I encourage you all to continue to keep her in your prayers.  With some rest and some time for the antibiotics to do their job, perhaps the infection associated with her feeding tube will subside and give her some pain relief as well as allow for a final decision to remove the tube as Nancy hopes they will in the end.  

So, for now, all we can do is wait and hope for a resolution to this latest setback in her long road to complete recovery.  As always, I will post again once I know of any change in her situation.  At least we know she is in the best place she can be and is being well taken care of.  That is most important to her mother and me as I am certain you can all appreciate.

Nancy's faith will see her through.

Nancy's Dad,

Vance

UPDATE

Wish I had some news that was more definitive, but at this point all we know is that Nancy's doctor wants to have the feeding tube removed so we are awaiting the final decision by her Gastroenterologist.  As soon as I know the "plan" I'll post.  Nancy had a reasonably comfortable night given the large number of interruptions of her sleep by staff doing what they need to do. This morning she was given a sleeping medication and was struggling to stay awake.  We're hoping that while we are waiting for some definitive plan she does get some sleep so she will be strong and rested for whatever the doctors decide needs to be done going forward.  

Nancy's Dad,

Vance

ANOTHER DIFFICULT JOURNEY FOR NANCY!

Nancy is back in Pittsburgh as I write this.  I don't know many details other than that she was in so much pain from the infection surrounding her feeding tube that Scott took her into Emergency at Olean General Hospital this afternoon and there it was decided that she should be transferred by ambulance back to UPMC in Pittsburgh.  She called us a short while ago to let us know that she was back on the Ninth Floor (lung transplant floor) of Presby Hospital and was hoping they could keep her comfortable for the night.  Hopefully we will know more on a prognosis and the plan for how to deal with the infection once she has been seen by those who can make such a diagnosis.  It appears likely at this point that her feeding tube will  need to be removed, but we won't know that for certain until tomorrow at the earliest.  

Nancy wanted me to keep you informed until she is able, again, to do this blogging for herself.  Her mother and I feel terrible that we are not there as it is much more difficult being so far removed from her after all the long months we spent at her side.  Scott will drive down to Pittsburgh tomorrow morning, so she will only be there alone overnight and I am hoping that she will be given something to allow her to get a good night's sleep before facing whatever decision is made tomorrow.  One way or another, one of us will keep you informed of what we know when we know it.  I know you will all be keeping her in your thoughts and prayers as always and we thank you for that as we always do.  Hopefully this too will pass and she'll be back on the road to less pain and more progress towards living the new life she's gained from her transplant.  I guess I am once again reminded of her inspired belief that "it is in the valleys we grow".  A bit difficult, when you are a parent watching her go through these, but we have little choice but to accept that we must.

Nancy's Dad

Vance

Let's Look on the BRIGHT Side!

Another infection, I am sorry to report, my feeding plug has become infected and once all the other pain was treated, the stomach pain really began. So, I took a visit to Dr. Witte's Office to see my dear friends there. Dr. Witte agreed there is an infection around the skin of my feeding button. He was really encouraging me to consider having the whole thing removed. For now, however, he put me on an antibiotic which will hopeful remove the infection and told me to put wet warmth on the area which does help with the pain.

I see the Gastroenterologist on April 8, so hopefully I will have gained enough weight by then to warrant removal.

It is a beautiful sunny day here today and I plan to enjoy every minute of it. It may feel like I have a knife stabbed into my stomach (I would send a picture, but if it made my PA brother-in-law gag, I'm guessing that is something most of you would care not to see), but that is no excuse to not wonder and glory in this special day God had given us! Nancy

Pain is under control

I was very concerned last night when the pain returned with a vengeance, I almost had to return to the ER, but I was able to talk to my brother-in-law and he suggested I take a second pain pill and that made the difference. I have made sure to be on top of the pain and not let it get so bad again.

Hannah stayed home again today, but I am hoping that she will be able to return to school tomorrow. This is a nasty bug!

I couldn't let Scott have all of the St. Patty's day fun. What do you think, do curls suite me?

Love to you all! Nancy

Happy St. Patrick's Day!

by special request, "Wild Rover" for Scott

Hello friends,



I had quite the eventful day. As I told you yesterday I woke up in pain and just wasn't feeling too well. This morning I was in terrible back pain in my lower spinal area and none of the pain pills were even touching it, so Scott brought me to the ER. We were fearful that I might have a kidney issue, but after several X-Rays and an MRI, the only thing abnormal was a slipped disk (Thank God!) I am still in a lot of pain, but got some relief at the hospital with their high powered pain killers. I came home with two additional meds for pain and I just pray that will give me enough relief to sleep tonight.



On the really positive side, this was the first time in a long time that I was released home from the ER and not admitted to the hospital.



Hannah stayed home again today, but I do believe she is getting better, so that is wonderful!

With two sick girls, Daddy figured he may have to fill in for Irish Dancing, doesn't he look sweet in curls?

May the luck of the Irish be yours today! Love, Nancy

Sick Girls

We are still fighting illness here. Hannah has had to miss three Irish Dance shows, which is very disappointing. At 4 am this morning I woke up in pain, my stomach and body just hurt, so Hannah and I have spent the entire day in bed. Please pray I don't get any worse.

Thank you all! Nancy

Here I am in Pittsburgh

This picture was taken at the Waterfront in Pittsburgh. It is a great place to hang out with lots of outdoor shops and great restaurants. It is lovely on a warm day, kind of deadly on a cold windy day. I enjoyed a wonderful Filet Mignon there and we did a little shopping. This was one of the highlights of my trip!

Hannah isn't feeling well, yet I have to take her to Irish dance in a few minutes. It is that time of the year again, she gets to dance till she drops. I'll post some videos and pictures.

Love to you all! Nancy

No Anxiety Today!

Today was my first anxiety free day since I came home from Pittsburgh. I kept telling myself while we were in Pittsburgh to set small goals each day and once I had reached the goal to stop worrying about anything the rest of the day. Today I wanted to get my living room straightened up, so that is what I did. That was all, it was enough.

I did catch Sweet Pea on the counter and Cracker on the couch, they have gotten used to being unsupervised during the day, naughty animals, but I sure do love having them around!

I still want to share some pictures from Pittsburgh, but I am waiting for Scott to e-mail them to me.

I hope you had a stress free day as well! Love you all! Nancy

Home

We're home! I started feeling better on Monday, so the trip went well. All of my appointments went smoothly and I increased my Pulmonary Function Tests from 66% to 77% which I was thrilled about! I'll post more tomorrow.

I put on a new song from Mamma Mia. Hannah and I have fallen in love with this movie and have watched it over and over. This song really touched me when I heard it, because it speaks to every mother's fears of our children growing up. I know it is kind of sad, but I love it!

I'll be back tomorrow with some pictures and more news.

Love you all! Nancy

Not feeling well

Hello,

I have been out of touch because I picked up some bug and have been exhausted and feeling downright lousy. We head for Pittsburgh tomorrow until Wednesday, so I will be off-line for a few days.

Thank you for your continued support through this current bump in the road!

Love you! Nancy

No one warns you as you head toward transplant about the fear and anxiety that come along with new organs. You are sick and dying and only want one thing, a second chance. When you are blessed with that second chance, of course rough times follow as you recover and heal from surgery. But these physically difficult times pass and suddenly you are a new person with abilities you may not even remember having had before.

I spent the last two years of my life sick. That became the norm and soon health was only a distant memory, one I wished for, but couldn't imagine ever achieving again. My world became dependent on everyone else, I could do very little by or for myself. Over time, this became normal, it is what I was used to, and I learned to accept it.

Last April my mom arrived and I clung to her as I did as a child. She took over all of my responsibilities and I was comfortable letting her.

Now, here I am, back on my own again, and it is terrifying! All I remember is how to be sick, it will be a process of re-learning health again. I am thankful and grateful for all that I have been given and feel horrible that I have spent the last few days crying and low. People tell me, "Now you can get back to normal!" but what is normal, that I just don't know.

I promise you, I have not lost my fighting spirit and will not let this anxiety take over. I have had several accomplishments on my own this week including taking myself to the hospital for bloodwork, driving a movie back to the store, picking up some of the household chores, like laundry and dishes, and unpacking from Pittsburgh.

I know in my heart God is with me and there is nothing to fear. Thank you for the support many of you have shown me the last few days, I have really needed it! Nancy

One day at a time.

As soon as I am up to it, I will try to better explain what has been going on with me the last few days. But until then, just know that I am putting one foot in front of the other and moving forward into this new life. In some ways I feel like I was thrown in head first, but I will eventually stop crying and start enjoying.

I really need all of you right now. I feel scared and alone during the day. Please continue to e-mail me, it helps to brighten my day.

My love to you all! Nancy

Great Strides to Cure CF

Dear friends and family,

I am writing to ask for your help and enlist your support. I recently signed up to participate in GREAT STRIDES: Taking Steps to Cure Cystic Fibrosis, which is the Cystic Fibrosis Foundation’s annual, nationwide walk.

Cystic fibrosis (CF) is a life-threatening genetic disease that affects the lungs and digestive system. More than 10 million Americans are symptomless carriers of the defective CF gene. Much progress has been made toward finding a cure for CF, however, the CF Foundation’s work is far from over, as precious young lives continue to be lost to this disease.

I have been personally affected by CF, as you all know, and have greatly benefited from the research that has helped make our lives fuller and longer.

Though I am unable to walk because of my B. Cepacia, I would like to raise a couple hundred dollars for this cause. If you would like to help me raise money to support CF research, please send a check made out to the "Cystic Fibrosis Foundation" to me at:

Nancy Matthews
P.O. Box 5
Westons Mills, NY 14788

Your charitable contribution is 100% tax deductible. I need all contributions by May 1st, to donate to the May 16th walk in Orchard Park, NY.

Your contribution will enable the CF Foundation to take full advantage of the tremendous opportunities in CF research that are now on the horizon. The path to finding a cure for CF is paved with numerous research opportunities—any one of which could have a profound impact on the lives of those with the disease. The only thing standing in the way of a cure is additional money to fund this life-saving research. Your support allows us to give children and adults with CF the quality of life and future they deserve.

Thank you for supporting this important cause!

All my Love! Nancy

I'm Struggling

Dear friends,

The last two days have been very emotional, fearful, and full of anxiety. It hit me hard yesterday morning when I realized the week was coming and I was going to be all alone for the first time in a year. I have been so dependent and am used to being cared for, so the thoughts of suddenly trying to live on my own again has caused me a great deal of fear.

I know I will be okay and will learn a new normal, it is just going to take some time and patience. Being home with my family is wonderful, but I have to admit, I miss my parents terribly, especially my mom. I will never be able to fully thank them for the time they spent with me so that our family could continue to function. As I reminded Scott when he would feel bad that he wasn't the one with me, "Someone in this family has to work and care for our child."

I have been able to get out and took a nice walk with Scott on Saturday and hit Walmart with the family yesterday (which wore me out!). My girlfriend Rose and her kids came over Friday night and brought stuffed shells. She and I watched Mamma Mia, which was a lot of fun!

If I can just get past this anxiety I am feeling, I will be able to start to enjoy my new life with new lungs. Please pray that I can.

Thank you all so much! Nancy