Good morning! Today is Tuesday May 10, 2016. I'm sitting in a recliner at the cancer center at Duke. I come here once a month for a 3-4 hour infusion to receive a drug called Gamunex (sp?). It's to fight or reduce antibodies. They pretreat with Tylenol and Benadryl. Warm blankets, pillow, TV and a snack if requested. Not a terrible way to spend half a day except that I had to get up earlier than desired.
This past weekend Kela and I decided mid Friday afternoon to visit Asheville. It ha been over a year and a half since I had been there. It was very nostalgic. Friday night, quite late we managed to get reservations at our favorite Spanish tapas restaurant. With the two little guys in tow we had a wonderful dinner. Delicious!!! Thank you Kela! In fact she paid for about 90% of this whole weekend...maybe more. On Saturday we went to visit a friend in Weaverville about 10 miles north of Asheville. It is a charming little town. Lake Louise is a great park with a terrific kids area. Elliott had a ball. We met our friend Marcia there who lives near by. Later she and her husband and our gang had lunch on them at a local, all organic, freshly cooked Italian restaurant. Yummy!! The rest of the afternoon was spent looking at houses and apartments for rent. We are thinking about moving back sometime in the future. I still have lots of appointments coming up in Durham so we will still be here for a bit.
In the evening we met a friend of Kela's whom she met ten years earlier in NYC. Now relocated in Asheville and coincidentally from WI. It truly is a small world. Had some vegetable sushi...sure do miss my salmon but no more raw anything for this girl;(
For Sunday...Mother's Day we had made reservations in advance for Stone Soup in Landrum, SC. This is a place we fell in love with while living at my daughter-in-laws parents home near by for 8 weeks while being evaluated at Duke for the transplant. Torin and Miles joined us. We weren't initially expecting to see him as we thought he was still traveling but they had returned just the day before from Spain. And thank you Torin for treating us. Miles and Elliott later got to run around and reconnect at a small local park.
From there Kela and I headed to Greenville. Another lovely place. Walked in the Park and had a light dinner at a local hamburger place. We would have liked to spend more time there but we had to be back in Durham for this early morning appointment. We will definitely revisit Greenville. So many kid friendly things to do.
Before heading home we went back to Asheville to check out a couple more apartments. It was well after 8 pm before we got home. Friends from our extended stay here had come into town for clinic visits. We have entrusted them with a key and a room to stay when they are in town. Always so great to see them. Richard had a lung heart transplant all ironically related to a spider bite. He had worked for his families extermination company. Thankfully he is doing well so he can enjoy his 3 children.
So that was Mother's Day. A memorable weekend. That's what life is now about. Enjoying everyday and living it to the fullest while making beautiful memories. As always I am so thankful for this 2nd opportunity to embrace the sunshine, splash in the puddles, marvel at the moon, hold, hug, kiss my grandchildren (#4 a girl is due in August) and breathe easy. What a blessing.
Mar 27, 2016
Today is Easter Sunday. It is long overdue for an update. I'm so happy to say that on January 27th I got the call. It was my 4th one, but somehow from the very beginning something felt different. It was mid morning. I was at rehab doing our floor exercise class. My phone was only inches away. When it rang I picked it up and was asked the usual questions. Is this Kathleen? How are you feeling today? We are happy to say we want you to come in. I stopped the class and blurted out "I just got the call!" Everyone clapped and offered well wishes. I called Kela to come pick me up. They wanted me to check in within an hour. They also asked if I had eaten anything. Contrary to what I was expecting next she suggested that I grab s bite to eat before going in. One of the clerks walked in from her lunch break and I teasingly asked what she had in the bag. It was a half a hamburger she was going to take home. She offered it to me and finally I said thank you and that was my last solid food for almost a month. Torin was notified and came as quickly as he could. Kela and I took Elliott to the babysitters and off to the hospital we went. Once admitted they had me go down for a chest X-ray ruling out any pneumonia. Labs and then the wait. Torin came from Asheville about a 3 1/2 hr drive and joined us on the surgical holding area. It wasn't until about 10:00 pm when they came in and said it was a "GO!" At about 10:30 they wheeled me down the hall toward surgery. I was calm. At peace! Unafraid! Ready for s new lung. Surgery didn't actually start until early in the morning of the 28th so that is the transplant date. I received a left lung which we heard came from a very tall, healthy young man. The actually had to cut the lung down to fit in my chest. Most importantly it was a perfect match to my high antibodies. Surgery was about 5 hours long. Dr Haney was my primary surgeon. Dr Hartwig assisted! They were both strong advocates throughout the entire process. I was in ICU for 4-5 days. Already nobody can agree on exactly how many days I was there. All together though I was in the hospital for two days shy of 5 weeks. Small bumps. Blood clot in both lungs. Needed to get a feeding tube. And that over the next couple of weeks became the Bain of my existence. It was replaced 3 times before I was discharged. Came home on the evening of the 22nd. Pretty smooth sailing since with the expected routine and clinics and doctors appointments. Went to rehab the next day to be reevaluated. Started classes on Wednesday. Need to complete a minimum of 23 sessions. The morning routine took some time to get used to. I was still on 12 hour tube feedings at night. Torin would get up and disconnect and flush the tubing. Checked blood sugar. I am a temporary diabetic due to the high doses of prednisone. Also on a regular schedule for insulin. Daily weight. Temperature. Blood pressure. Eat breakfast and be at rehab by 8:30 am. It was all so overwhelming and took some time. Much faster now plus the feeding tube (I am thankful to say) is out. 8:30 is still too early and at least once a day I start at 8 am! Ugh ! I feel good, but I am weak. Rehab is hard but oh so necessary. I am so grateful to have been given an extension on my life. I'm excited to be able to breathe without the support of oxygen. I'm thankful to the donor's family for unselfishly giving their sons organs to help others live. I have been blessed!!!
Dec 27, 2015
Just a week or two ago I wrote an update...then I had a problem with my phone which resulted in replacing it. Apparently what I wrote got lost in the transition.
Anyway I am hanging in there....
Dec 11, 2015
Can you believe it has been 421 days since I was originally listed. It has been and continues to be a long wait for lungs. At about the one year mark it was suggested by my transplant team at Duke...
Aug 15, 2015
We are coming up on 1 year in Durham, waiting for "the call", making my mom one of the longest-listed lung transplant candidates at Duke. While we remain positive and find joy in every single day...
Mar 26, 2015
You may have noticed that we have decided to raise our goal amount to $50,000. This was such a tough decision and we didn't make it lightly but between the rent and relocation expenses, the money...
Mar 19, 2015
5:16 pm on Sat. Dec. 20th I received a phone call from my transplant coordinator to come to the hospital. We arrived at the hospital at about 6:15 to 6:30. Discharged home about midnight.
Feb 16, 2015
On Tuesday, Feb 10th I was scheduled to begin the plasmapheresis at 8:30 am. I was getting ready for the appointment when the phone rang. It was 7:22 am. Hello! Is this Kathleen? Yes I say. This is...
Jan 07, 2015
Yesterday I met with one of my Drs. It wasn't a routine visit...it was arranged to offer me an ongoing treatment of a combination of two to four drugs. The purpose of these drugs is to lower a...
Jan 05, 2015
Happy New Year. Welcome to 2015! The year is still young but it brings renewed hope and faith that lungs or a single lung will be found. Several of my lung buddies were granted their prayers and...
Dec 22, 2014
On Sat. Dec 19th I had what we call a dry run! Kela, Elliott, Torin and I were out for an early dinner. Kela gifted me an early Christmas gift with a beautiful handmade necklace shaped like lungs...
Nov 07, 2014
Greetings to all of my friends and family. I hope you are out enjoying the beautiful fall foliage as it dresses the woods in vibrant reds, oranges and yellow splashes in preparation for winter....
Oct 17, 2014
On Wednesdsy, October 15, 2014 I was finally listed on the National Register for a lung transplant. I am humbled to think that when someone's life ends I will be given a second chance to live. I am...
Sep 24, 2014
Half way through rehab. 11 more mandatory sessions to go. I also still have about 4-5 lbs to lose. I think that is harder to do than the rehab. They want me to eat between 1000-1200 calories a day...
Sep 10, 2014
Kela and I have successfully moved to Durham, NC. We have a great apartment with space for Elliott to spread his wings...and he has! What a delight he is to watch everyday. I started pulmonary...
Aug 15, 2014
Today I finished a full week of tests, labs, doctor consults, pokes, prods and you name it!! Most results were good. My heart cath showed no coronary artery disease, no pulmonary hypertension....
Aug 11, 2014
We are back at Duke for a week of final transplant evaluations. Today is day 1 of 5 or more. We can only hope that everything will come out well to move on to the next step in this lengthy process....
Jul 30, 2014
I'm headed into the next round. One week of tests, more labs...3 weeks ago they took 23 tubes of blood...and they still want more! Also have a right heart cath scheduled, a carotid echo, consults...
Jul 18, 2014
My mom has just been given the green light to move forward with the transplant process, a rather lengthy one. The doctors said that without a transplant, she has about a year to live. We are not...