Let me take a moment to thank you. If you are reading this letter, it means that you have taken the time out of your life to share with someone that needs your help. That means that you are honestly a good and caring person.
I would like to introduce myself to you. I am a 39 year old wife and mother of two. I work for the local Sheriff’s office and am a photography student. I enjoy camping during the summers, spending time with my family and friends. I am a cancer survivor: Hodgkin’s Disease.
When I was 15 years old, I was like any other teenager in high school. I was busy with school and friends, worrying about nothing but getting my driver’s license and if someone was going to ask me to prom. Then the sky seemed to fall; I was diagnosed with Hodgkin’s Disease. My first reaction was just like any normal persons, “Why me?”. But my parents didn’t let me think that way. They taught me that I should look at the question as “why NOT me?”. What makes me so special that I shouldn’t have to bear any obsticles in this life. During the next year my days were spent going to doctors, having chemotherapy and radiation treatments. That year was also filled with love and support of a family that never let me give up on myself, even when I felt my worst. Thanksgiving of 1987 I had so much to be thankful for. I had completed my last round of chemotherapy and was given a diagnosis of remission.
For 23 years I have done very well, with no recurrence of the Hodgkin’s. I have enjoyed so many blessings, too many to count. Each summer, for the past several years, I have taken a camping trip with my family to Central Oregon that included my children and parents, sisters and brother and their families. It has become a fun tradition with lots of memories. During the summer of 2009 I was on that camping trip, taking a walk at waterfall with my sister, daughter and niece when I began suffering symptoms of a heart attack. Thanks to Shelly’s “stubborness” we ended up at the ER of the local hospital and after several tests and blood work it was confirmed, I had a heart attack. Within a few hours I had the angiogram that showed 90% stenosis in my arteries – caused by the radiation treatment I had recieved all those years prior. Within 24 hours I was in emergency bypass surgery.
We thought that was the end of that story. Little did we know that became the prologue to an even greater story. Recovery from the bypass was taking so much longer than we expected. I was experiencing swelling in my legs and abdomen and anemia. It became the family joke that I was going to write a book of hospital reviews because I was in a different hospital at least once a month. After numerous tests and surgeries, and several differing diagnosis I was referred to Dr. Mark Drazner at UT Southwestern in May, 2010. That is when all the pieces to my puzzle came together. The damage from the radiation was more than we had thought. In addition to stenosis of the arteries, I was diagnosed with cardiomyopathy, pericarditis and diastolic heart failure. In simpler terms, the muscle of my heart is progressively getting more stiff, not able to relax and fill with blood, causing me to “backup”. The outer layer of my heart, rather than being pliable and expandable like a balloon, has hardened, more like a shell. In August, 2010, I returned for a follow-up visit with Dr. Drazner and his team of physicians to discuss the results from my pre-transplant workup testing. It was at this time I was told that because these conditions are progressively getting worse, my own heart probably would only give me another 6 – 18 months, and my only option is to receive a heart transplant. I was put on the waiting list on October 19, 2010, as a status 2. This would allow me to begin accumulating time on the transplant list, but would not be eligible to get my transplant.
On November 2, 2010 I returned to UT Southwestern for what we thought would be a routine monthly office visit with the cardiologists. My husband, Stephen, and I flew into Dallas with only one “emergency” change of clothes (you never know what accidents might happen on an airplane). We arrived early for my visit, hoping that the earlier I was seen, the earlier we could get back on the airplane. Needless to say, that is NOT how the visit worked out. Because my heart failure had caused so much fluid retention, I was directly admitted to the hospital for what was to be a 2 week admission. On Friday, November 5, 2010 I was admitted to the ICU to begin an IV drip that is required by UNOS (United Network of Organ Sharing) and at 9:49 PM I was moved up to a status 1b. It was a wonderful moment, as I knew I was moving up on the waiting list and that much closer to being eligible for a new organ.
I was discharged from the hospital on November 16, 2010, with my new companion – a portable IV pump. I would have to remain on a continuous IV drip of Dobutamine until going into transplant surgery. The cardiologists would be petitioning UNOS for an exception, allowing me to move up to a 1a status without the use of an LVAD (left Ventricular Assist Device), as it would not be helpful in my situation. I was very thankful that I was going home to spend Thanksgiving with my family. The plan was that I would return to the hospital during the first week of December, after the petition was filed and a ruling was made. As December began, the doctors discussed with me that they were still working on my petition and I would be able to spend the rest of the holidays at home, provided that I rested. Christmas of 2010 was a wonderful time for my family.
The petition for the exception was filed on December 30, 2010. I returned to UT Southwestern on January 3, 2011, with the cardiologists expecting to have all the needed votes back within a few days. I began a 5 day treatment of plasmapheresis to reduce the number of antibodies in my blood in order to reduce my chance of organ rejection. All of the required UNOS votes were not in the following week, so I was discharged to return home on January 11, 2011. My return home was not to be a long visit; 3 days later, on January 14, 2011, I received the phone call that we got the ruling for the exception.
I was admitted back into the hospital on January 21, 2011, and at 5:30 PM that night the paperwork was completed and I was moved to a status 1a. Now here I sit, with my family far away from me, waiting for that much needed call. It’s very difficult being away from my husband and teenage children, not being there and not helping provide and support them, but we have faith that it’s the best thing at this time.
I was discharged from UT Southwestern on Sunday, February 13, 2011 to return home and wait for an organ.
On March 14, 2011 I had an appointment to be re-admitted to UT Southwestern for another heart catheterization and testing. This would most likely lead to an admission into the ICU with an additional isotrope through a Swan-Ganz catheter. I also had an alternate appointment scheduled at another transplant facility 3000 miles away in California, at Cedars-Sinai Los Angeles. The cardiology team in Dallas referred me to Dr. Jon Kobashigawa in Los Angeles because of his expertise with dealing with and treating antibody issues. It was a difficult decision to make, because I LOVE my doctors at UT Southwestern and would have brought them with me if I could. The numbers showed that the chance of transplant in California was much greater than in Texas, so we packed my bags and my parents drove me from Odessa to Los Angeles in their motor home.
I was admitted to Cedars-Sinai on March 14, 2011 for a 10 day regimen to treat and lower my antibodies. On the afternoon of Friday, March 25th my parents and I were packing up my room, preparing to discharge in the morning. Steve, my husband, had had to leave to go back to Texas just 4 days earlier with our daughter. I would stay in the area to wait for a follow-up appointment; but at 2:30 pm I received a life changing phone call from the transplant coordinator that they had found a heart for me! I would be going into prep at 7:00 pm for surgery. I laughed, I cried, I shook uncontrollably, every emotion that a person can feel went through my body. I immediately began calling family and friends, beginning with the love of my life, my husband. Then it was onto my brother and sisters, my friend and Boss, Lt. Roy Gladden of the Ector County Sheriff’s Office. Phones were ringing off the hook, doctors, nurses, surgeons; I can’t tell you everyone that came into my room that afternoon. Then at 7:00 pm I was taken from my parents to the operating room where I was prepped and waited. About midnight, when they said the heart was there, and they were going to sedate me, I said, “OK, anyone that wants to go to Hawaii, tell me know because that’s where I will be for the next few hours”. Little did I know I would be out for 2 days. But when I woke up, everyone was there; Mom, Dad, Steve, my children, and my brother and sisters.
I stayed in ICU for 5 days. On the 5th day, they performed the 1st biopsy of my heart and found zero rejection, so I was moved to a regular room. That’s where life began to change; Pain, learning new medications, learning sterile precautions (because even just a sore throat can cause me to reject this new heart), even just learning to stand and walk again. I had been so weak from heart failure before the surgery, all my muscle had atrophied. Discharge was delayed by a week because of some fluid on my lungs and an increased white blood cell count. So I was given antibiotics and worked on my strength a little while longer. It was a big deal for me to be able to walk 1000 feet and make it up 7 steps. This from someone that used to mountain bike, swim, and river raft.
I was discharged from the hospital on Monday, April 11, 2011. My sister has accepted the invitation to stay with me for the next 6 months as I have to have 24 hour care during that time, and most everyone else has another job or commitment in their life. Family will rotate in and out visiting with me. But for now, I am trying to take this as my time to rehabilitate and get stronger so that I can go home and be with my husband and children.
If there is nothing else, I want my story to make other survivors of Lymphoma aware of the possible cardiac damage before they become fatal. If you have received high dose radiation to your chest for Hodgkin’s or breast cancer prior to 1995, please visit with your doctor regularly and don’t ignore any symptoms of heart trouble. I would also like to bring attention to organizations like HelpHOPELive that help patients and their families raise the money necessary to cover the medical costs associated with an organ transplant.
This is not just my story, but my family’s story. It is very difficult on everyone when a family member is in need of a transplant. Emotionally – Physically – Financially.
We have chosen to fundraise with HelpHOPELive in part because HelpHOPELive provides both tax-deductibility and fiscal accountability to contributors. Contributors can be sure that funds contributed will be used only to pay or reimburse medically-related expenses. For more information, please contact HelpHOPELive at 800-642-8399.
Thanks for your support!
April 25, 2017
I am happy to say that I have enjoyed April and National Donate Life Month sharing the word about the importance of organ donation and registration. It has been 6 happy years since my heart transplant, thanks to an anonymous donor that gave the gift of a lifetime.
Another year on the books means it’s time to make the annual trek to the transplant center for a visit with the vampire (blood work), talk with the mechanics (doctors) and have a tune up on the new engine (angiogram).
Though my family is forever grateful for the second chance I have had at life, it doesn’t come cheap. The ever increasing costs of medications and the annual cost of about $30k for an angiogram can put some financial stress on a family. We are grateful to those that have been gracious enough to support our family by making even the smallest of deductions. They help us out by making it financially possible to make my medical trips and in return, Help Hope Live is a 501(c)3 organization, making your donations tax deductible.
March 5, 2014
It’s that time of year again. I will be traveling back to Los Angeles to have my annual angiogram and check up with my transplant team at Cedars Sinai to make sure that all is well with this wonderful heart that I have borrowed. I always look forward to seeing the doctors and nurses, but there is always a little anxiety about the procedures and results. Crossing my fingers that this report will be as excellent as the last.
April 8, 2011
I got the call; and the second chance at life.
On March 14, 2011 I was admitted to Cedars-Sinai for 10 days, undergoing plasmaphoresis and chemotherapy; trying to reduce antibodies and get me to better accept a new heart. It was 3:30 pm on Friday, March 25, 2011 and I was packing up my room to be discharged the next day when I got the call. All I hear is "are you sitting down"? What? "I think you need to be sitting down. OK, we have a heart for you!" Oh my goodness how 6 words can send you reeling.
March 23, 2011
Transferred to Cedars-Sinai
Transplant waiting time has been transferred to Cedars-Sinai in Los Angeles.
I began this transplant journey with a wonderful medical staff at UT Southwestern in Dallas, Texas. I have absolutley nothing but love and respect for everyone that participated in my healthcare during my time there. Due to issues with my antibody levels and the high chance of organ rejection, I decided to pursue a referral to Dr. Jon Kobashigawa at Cedars-Sinai in Los Angeles, CA.
On Monday, March 14th I had a consultation with one of the cardiologists with Dr. Kobashigawa’s team, and from there I was admitted to the hospital. I began doing plasmapheresis along with a chemotherapy drug, Velacaid, to reduce the antibodies present in my blood plasma. I have done very well to date with the treatments, and was officially placed on their transplant list on March 21, 2011 at 1:00 pm.
Tomorrow I will be having a right and left heart catheterization done to check the pressures in my heart to assess the possibility of moving me to a 1A status. Things seem to be moving very quickly. I have been on a bumpy right through this whole transplant experience, but I am confident that this will be the means to a new beginning for me and my family.
Thank you to everyone that has supported me and my family!
December 23, 2010
Upcoming Hospital Admission
Well, I have been given a lot of dates of the past year and a half, but I think this will be the most significant one. I will be admitted to a lengthy hospital stay beginning on January 3rd. My husband has been so supportive of me, and tries to keep his fear hidden from me, but that just doesn’t work. The more I see him worry, the more I worrry. We have come to the conclusion that we will have to spend a lot of time apart. As he has to work, and the kids have work and school, Grandma and Grandpa are planning on helping keep things in a orderly fashion. Unfortunately, that means that I will be alone or by myself alot in the hospital. But it will all be good. Things will turn out the way that they should and we will all be where we are supposed to be.
December 23, 2010
So, I traveled back to Dallas on December 13th for a visit with Dr. Patel. I was VERY relieved that he has allowed me to return home until after the holiday. Everything is going as expected. We are waiting until it gets just a little closer to my hospital admission date before the appeal is submitted to UNOS.
Thank you all for all your support and prayers.
November 2, 2010
A Day to Travel
Well, tomorrow is another travel day. Steve and I are off to Dallas for a visit to the transplant team. This is the first time that I have been nervous going to the doctor. It’s also my fist visit since being put on the transplant list. Mariah, my transplant coordinator, told me to bring an overnight bag with me from now on each time I come visit because there is always a possibility that I will be admitted to the hospital.
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January 24, 2011
Cindy, I pray that you have strength to keep going, to keep your spirit up, that is a strength that not even medicine can give, only God and our own stubborn will to live!!! Know that you are thought of and prayed for often! Don't ever ever give up!!!
January 21, 2011
Love you and Steve, Cindy you are in my prayers everyday.
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