May 3, 2014
Well, I had my six week checkup with my surgeons. It's taken me over a week to get this written, for some reason. All is going well. All my medications are still the same. In fact, my main immuno suppressant, prograf has increased. I had a good immune system which makes that the case. I hope to be able to go back to work a little sometime in June. I can hardly wait. We still have to be so careful about germs. We need to buy stock in hand sanitizer. We buy it 2 gallons at a time! I am eating out if there is a patio and I Lysol wipe the area, & I have gone into a store or two, but have others touch things for me.
I do get to come off of some of my insulin, which means that the fact that I am diabetic will likely be short-term. So, I am looking forward to that. I've started physical therapy to strengthen my back without harming my abdomen. I am still exercising with walking. I can walk about 3.5-miles at a time. I am active for four hours before I need to take a big break. In a whole day, if I break it up a bit, I can be up & about for a total of about 8hrs. I am now able to be without a companion & can drive a little!
We had a fabulous Easter. Jim and I renewed our vows (pic attached). Our girls were recieved fully into the church, and our families came to see it all. I was only able to be at the vow renewal (dang germs!), but was so happy it was a great celebration.
I am so thankful to my Mom, Jim's Mom & Bill for uprooting their lives for weeks and weeks for me and for our family. I know that I thank Jim a lot too, but seriously...he honestly and truly amazes me. Taking care of the kids, basically alone, for 6+ months before transplant. Oh ya, and took care of me! Then, just stepped it up, over the last 7 weeks.
I think we are both excited that I am more and more like 'me' every day. We are headed in the right direction and see a light at the end of the tunnel. My whole families life has been on hold for almost two years. I can't wait to make it up to the kids and Jim, by being able to bike and run, and play. No more cancelled activities! That is what motivates me.
Thank you for the continued meal support (takethemameal.com). I have started to cook a couple times a week, so please know that the meals you are providing are so helpful, and REALLY make a big big difference to our family. Also, a huge thank you to my co-worker Teresa (& several other co-workers) who planned and carried out, and incredibly successful, silent auction to benefit my non-profit (m.helphopelive.org during an annual party for Better Homes and Gardens Real Estate Gary Green.
Lastly, the national Transplant Games, happen to be in Houston this summer. I am not eligible to participate as a competitor...yet! In 2016 in Cleveland I will be kicking booty! However, there is a 5k in Houston on July 12th (www.transplantgamesofamerica.org that is open to transplant recipients, living donors, family and friends. I will be doing that 5k with my family and would love it if you'd join us. I'm thinking of trying to come up with a team name! Please consider running/walking with us. It would be so fun. Let me know. Thank you for all the continued support. Although we are seeing light at the end of the tunnel, this is a marathon fight, and we have just begun! Love and hugs to you all!
April 4, 2014
Three weeks! Hard to believe. We still sometimes are still shocked we got the call, and that I actually had a liver transplant. Although our wait on the list was long, I was only diagnosed with PLD, less than 2 years ago. Most transplant patients have had liver disease that has progressed for years and years. The idea of when to get on the transplant list is one they ponder over the course of 5-10years. Then their wait begins. We were told I needed a transplant on my first Dr's visit, in which I thought maybe I had a hiatal Hernia. That was our worst cast scenario! So, what a surprise that a liver transplant was in order.
I walked one of the lakes near our house. The whole lake in one shot. It's not that big, but it was a goal and I reached it yesterday. I saw my transplant team yesterday morning. I keep wanting to be 100%, but it's taking time. A long time when your going through it. That has caused a bit of a set back. More emotional than physical. I tried to take back too much responsibility, and insisted I could. It just wiped me out. However, we "hit reset" a few days ago and we are back on track.
So many of you have asked how Jim and kids are doing. They are good. Jim truly amazes me every day. He deserves many more thank you's and blessings than I can give. He does all parenting duties without skipping a beat. Can you believe our kids get hot breakfasts every day? He really deserves father & husband of the year! The kids are doing great too. It's standardized testing season here and they are taking it in stride. They are the most excited that all they cousins, aunts, uncles, and grandparents will be here in 2 weeks. Jim and I decided that would be a good time to stay at a B&B (stayat7.com) . Avoid the germs and get some time together on the weekend we renew our vows. So excited!
I'm adding a few pictures too. Some of the hospital ones and then one of my new-fangled med alert bracelet that my mom ordered for me. I think it's actually, not too dorky. Lol. Thank you to everyone who has pitched in, driven kids, brought meals, sent cards, pick me up gifts, and donations. Every single one is appreciated more than I can really express. To have somewhere to turn when the lovely checkbook seems to only have checks made out to pharmacy and hospital, is a gift I can't even describe. A gift that blessed our whole family. Love and Hugs!
March 25, 2014
I'm feeling pretty good! The pain is definitely still there, but regardless, I still, overall, feel good. I feel Happy! That is so huge for my whole family. That horrible Hepatic Encephalopothy was so horribly depressing & mind altering. I don't wish it on anyone. It is GONE, praise God! Blood work in the med center today showed my new liver continues to get stronger. So, my meds changed a little. Two less pills a day. Which is kind of a joke when your taking 100+, but the reason behind it is excellent. Still walking and moving as much as I can, which still isn't a ton, but working in it. The kids were back to school & Jim back to work today. I missed them and it brought about new concerns about germs & "crud" kids carry. Masks are my new bestie. Thanks Stacey for the first meal, what a blessing, Valerie& Debbie for adult sitting & breakfast so my fam could go to church yesterday, Nancy for being my early morning ride to the med Center, Jim for continued savior behavior, Amy for the awesome fruit arrangement (highlight if the day!), Pam for muffins, Sandy for the ride to see Penny to wash & dry my hair, and Rosie for picking up Faith up for ortho in the morning. Thank you to those who have signed up on www.takethemameal.com (snyder-costigan pswd:77433). You really cannot know the stress this relieves. Love to all!i
March 22, 2014
Hi! Day 9 complete. Oddly, my incision is just starting to hurt :-/. I feel better today than 2 weeks ago, hands down. Each day is a roller coaster, but I'm on the ride!!! My new liver is functioning well. I go for blood work 2 times a week minimum in the med center. I am trying to stay active and walk as much as possible. My mom leaves tomorrow. She has been amazing. Cooking and helping me all along. She will be back in 2 weeks. My mother in law and Jim are amazing each and every moment too. Jim has a lot to do with all my meds, shots, blood, etc. Nancy (Jim's mom), along with the kids local grandparents, Gerry and George are making sure the kids get lots and lots of attention. I am so pleased that it seems my daughter Sarah is becoming more confident that I am on the mend. It has taken her a bit longer to come around. Which I can completely understand. My mom and Nancy took the girls to the museum district and then to the Galleria today. Jim and I will be convalidating our marriage with vows in our Church on April 19th. That evening Faith will be baptized, and Sarah and Faith will recieve Eucharist and be confirmed. I am so excited to celebrate our Catholic faith, my amazing and loving marriage, family, and my health over Easter weekend with all our family. 25 Costigans and Snyders will invade Houston in a few weeks. So, the girls got new dresses at Nordstrom today! Life is so good. I am so blessed in so many ways. Thank you for all the love. Thanks for help with meals. (Www.takethemameal.com snyder-costigan password: 77433)
Being diabetic all of a sudden is overwhelming, particularly when you can't really prepare meals yet. I really need the help and am thankful.
March 18, 2014
An update is definitely an order! Last Tuesday evening at 7:30 PM we got a call from St. Luke's medical Center in Houston. We were told there was a possible liver offer and could we come right away. Shock, surprise, disbelief, apprehension and fear...all at once. We were admitted Tuesday night and still were not getting our hopes up to high. At 8:30a on March 12th I rolled into surgery!!!! The donor, a 48 year old healthy male, is all we knew. After 6 hours of surgery, a 43 pound liver was removed and replaced with a healthy 11lb liver. I can say that I am healing and so thankful. I cannot say that it has been easy, or painless. We hadexpectations of 3-4 days in the ICU and a total hospital stay of 7-10 days. Amazingly, I came home yesterday! I am walking as much as possible, and keeping germs at bay. I am getting used to many MANY medications. Like, I am guessing, 100 pills a day. I'm not sleeping well yet and still fighting the pain of being cut in half, but again...I am so blessed and thankful. Jim has been a champ through it all. My mom and Jim's mom and her husband Bill were here to help within hours. The kids Grandparents Gerry and George were here as we left for the hospital and were amazing the whole time. I will write more soon. Please pray for sleep, rest & comfort for me! Love & hugs.
March 8, 2014
Backstory time...I want to fill in a few gaps on my "about Tracy" section. You may have guessed from our picture that we are a wonderfully God blended family. Our four children are with Jim and I full time. Faith & Christian having me 24/7 for years, and Sarah & John's mother passed away several years ago. These four kids would impress you, like you can't imagine! They've been through a lot, but cherish and appreciate the loving stable family we have. They all love each other and both parents to the ends of the earth and more. Sarah and Faith are both Honor roll students, & both boys have improved grades and social progress over the last few years.
Now Jim...I know people brag on their spouses, but he HONEST AND TRUE deserves it. The day I found out I needed a transplant, he proposed to me. He had spoken to all four kids to make sure this was a marriage that they wanted too. For Jim to take on an enormous health issue is way more than most people could do. Considering what he had already been through, he took on me & my bum liver along with 2 more children (& a dog). He is almost always (like 99.8%) positive. Totally supportive, encouraging, & compassionate. The Hepatic Encephalopothy takes away parts of your personality and leaves behind some, not so great traits. He hugs me all the way through it. He loves me totally and completely and is the best father I could imagine for our four children. I am very blessed!
March 8, 2014
I just wanted to celebrate 3 full weeks of feeling pretty good. That is a record in the last 9-12months. I really am feeling more alive. I am very thankful to be able to move & be out and about a little more. I've been able to restart yoga classes. We went as a family, along with the kids PaPa (aka George) to a fish fry at church last night. Post fish feast, The boys all headed out for Cub Scout camping while the girls & I did a little shopping. I hate sleeping alone, but managed the whole king bed overnight and today the girls and I had a day of prayer at church. 8:30a-3:30p of prayer & reflection. I had to lay down once around lunchtime & was completely wiped out after, but did it. The girls & I are preparing to receive sacraments at Easter time. We have worked very hard, committing about 200hrs over the last year. The next few weeks include many rites & additional work, but we are completely fulfilled & are very excited to reach these milestones. Faith will be baptized, then Sarah, Faith & myself will receive Holy Eucharist, and be confirmed. Jim and I will also enter a sacramental marriage in convalidation. Potentially, this will all happen the same day (4/19). However, our greater hope, is that we will be in New Orleans recovering at Easter & the other items may need to wait a little bit longer. Regardless, both of our parents, and most siblings and families plan to be wherever we are for Easter, and for that, I can hardly wait!!! I love out families and miss them every day. Thanks for continued prayers. My listing will go active in NOLA in the next few days. The anxious waiting for the phone to ring, but scared to death it will. Here we go!
March 7, 2014
Wow! I'm humbled by everyone s help! Thank you so much.
The hospital review board met yesterday and I was accepted into the transplant program. Yay! Nice to make steps forward. I spoke with my transplant coordinator yesterday and today. Step 2, insurance, is in process now and should be complete tomorrow or Monday. Step 3, paperwork to go active on the UNOS list, is ready to go and waiting for the insurance. They will request 22 points. We have mixed feelings on this. Every region is different and we are used to Texas. I have 33 points in Texas and haven't gotten a single call for an organ offer. However, in NOLA they transplanted two people with scores in the teens last week. The head of surgery and my nurse, assure me it will still be quick and to move forward with plans.
We are planning to drive the kids to NOLA for a little visit very soon. We feel like the girls really need some additional information to relieve some of their fears and anxieties. If you know our family...who can blame them! The hospital has child life specialists that they have offered, & we plan to take them up on that. For eleven year old girls, this is all tough stuff. Actually, for a forty year old and a forty something husband, this is tough stuff. We are planning on the same trip to bring some items that, when I have to stay long term, will lower other costs. The apartment that we found, which is by far the most economical choice, is unfurnished, but we have some stuff to take. So that will all help! Thank you again for all your help and support. Feeling very blessed!
March 5, 2014
Happy Lent! I received a very cool email this morning. It may seem very silly, but Chris Klug really is my inspiration. Most people who receive transplants are under 12 or over 55. So, I've had a really tough time finding inspiration in this bizarre world of transplant. I ran accross Chris Klug's website a few weeks ago. He is a snowboarder, who in 2000 found out he needed a liver transplant for a rare disease. He too was surprised. He commiserates with those on the waiting list and claims it is the hardest part. He received his transplant, and was committed to not just living & surviving, but thriving. 4 1/2 weeks post transplant he was biking with friends on a road bike up the mountains in Aspen. He was back on a snowboard in 4 months. Winning events 6mo post op. in 2002 in Salt Lake City, he not only
Competed in the Olympics, but stood on the metal podium! I wore him to say he had inspired me, and this is what I got today...
Tracy,
I'm way healthier and stronger than ever before my transplant and you can be too. Thanks for your kind message and support and for sharing your story with me. Best of luck to you.
CK
Chris Klug Foundation
March 4, 2014
I heard from my transplant coordinator in NOLA, and she confirmed that I am on the agenda at tomorrow's medical review meeting. So, that will be step 1 in a 4 step process. Each step has a potential for delays. However, if you know me well it will not surprise you that I advocate well for myself. I keep the ball rolling. Step 2 will be insurance approval. Which should, truly be a formality because I am already approved for transplant in Texas. Step 3 is activating on the Louisiana UNOS list. Step 4 is requesting and receiving exception points for liver size, percent of total liver volume that is cysts rather than liver tissue, etc. that last one is actually the one that will be the big, huge, hold your breathe, pray, and cross fingers decision. Best case scenario, this takes 10 days for all the steps. In Houston when I was evaluated and listed, the process took 6 weeks. So, we wait!
In the good news category, we did find very reasonable accommodations that we can activate when the time comes.
Meanwhile, in Houston :-)...my score moves up again on March 10th. My "MELD" will be 33. The people in NOLA cannot comprehend that a score can ever get that high before transplant, and do not understand why I haven't gotten any offers. I respond with...welcome to Houston, medical capital of the world! Happy Fat Tuesday! The family is headed to a pancake dinner and had Ponzcki for breakfast. Love to all!!!
Thank you to those who have donated. It makes a really big difference. I really can't thank you enough.
March 1, 2014
Just a little update. The review board at the hospital did not review my case on Wednesday. It is a delay, and of course, that is disappointing. However, pretty common. There are 8-10 people that go through the eval process each week. The coordinators prep their case to be presented. Mine wasn't ready to be presented. I was assured yesterday, that it will be reviewed next Wednesday. I'm sure you can put together that everything else is delayed a week now as well. They have potential for delays also. So, we hope that it is quick and simple, but Jim reminded me of when I was listed in Houston, it took 5 weeks after the eval to finally be active on the list. We wait patiently. I feel pretty good at the moment. We had some really rough road for a while, but the past 2 weeks have been much better. I took a walk tonight around the lake with my daughter Sarah. I restarted yoga this week as well. Thanks for all the support!
