New Heart, New Life - A Transplant StoryHi. I was diagnosed w/a rare form of breast cancer in 2003 called inflammatory breast cancer (IBC). It is very aggressive and usually misdiagnosed. I was fortunate to catch it early but still knew I needed an aggressive treatment approach to make it. The posted survival rate at that time was only 20% and I had an 8-yr old son to stick around for. I chose to do a clinical trial of a drug that cut off the blood supply to the cancer cells. It took a whole year and had a lot of side effects. I lost my hair twice, my ability to taste all food twice, had my fingernails fall off and my skin peel off from radiation. I also had a mastectomy but managed to work thru it all (except after surgery). That was important to me because I didn't want to sit around thinking about how sick I was and worrying about what would happen. I also wanted to keep things as normal as possible for our son.
In 2004, my husband was diagnosed with his first form of cancer (thyroid). The following year, he was diagnosed with the second kind (colon). It returned every 1-2 years since then but it was colon cancer in his lung.
In 2005, I began developing fluid in my right lung. Everyone feared it was cancer in the lung but it always tested negative. I was referred to cardiology and determined to have congestive heart failure. It's believed to be from the treatment. The clinical trial drug, bevacizimab, was NOT APPROVED for breast cancer treatment because of the damage to the heart. (It was later approved for colon cancer and my husband ended up getting it). I had a heart attack later that year where my only symptom was extreme nausea. I had an 80% blockage and had a stent put in. I didn't even know it was a heart attack until 2 years later. We managed my symptoms through medication at first and then, in 2008, I had a defibrillator put in. (It never went off).
For the next 8 years, we tried managing everything with medication. By 2010, my symptoms worsened and I was put on the transplant list. I really didn't want a transplant and hoped we'd never get to that. I continued to work full-time and raise our son. He did remarkably well in coping and was in the honors program at school. By 2012, I had improved or stayed stable enough that we decided to inactivate me on the transplant list. My doctor was concerned that I might do worse after transplant and we wanted me to be as functional as I could for as long as I could. We stayed in inactive status for almost 2 years and then my symptoms increased again. Our son graduated from high school and went away to college on a 4-year, full tuition scholarship. I was reactivated on the transplant list in 2014 but we didn't tell him. Things continued to go downhill - slowly at first but then more quickly. I was hospitalized in October and December of 2015, then again in January and February of 2016. I was out for March and (just barely) but then had to be back in for May. At that point, I had to have a medication pump implanted and I knew the next step was either an LVAD (which I didn't want due to my tendency to develop clots) or the transplant (which I also didn't want but knew that I needed). I was only home for 15 days after the implant before I had to be hospitalized again. At that time, my doctor said I needed to live at the hospital until I got a heart. Once I was there, I realized just how sick I was and it was a miracle that I hadn't died. I developed a routine for staying busy with reading, listening to music, communicating with people via phone, text, social media FaceTime and visits. I also utilized everything the hospital offered including music therapy, art therapy, wellness massages and aromatherapy as well as spiritual care. I made a mix tape of "Songs While Waiting " which I shared with my family and friends because we all have times where we're waiting for something. I also made a collage of things I was looking forward to doing after I got the new heart. Amazingly, I never got bored and had a lot of fun with my nurses watching the NBA playoffs, Big Brother and The Bachelor. I got to be close with many of them and it really helped. There were also volunteers from Life Banc who came to share their transplant stories. That also helped because I could ask questions about what to expect.
62 days later, a heart became available. That day was a whirlwind. I was scared but also excited. My primary transplant cardiologist was out on medical leave but called me from home to congratulate me, offer reassurance and wish me luck. I came to terms with knowing the transplant was needed and looking forward to feeling better. I'm told the surgery took 9 hours because they also tried to unblock both of my jugular veins which had scar tissue from all of the catherizations. I don't remember much immediately after the surgery but do remember the 3rd day waking up in ICU in pain. Mostly I remember waking to push the button on the pain pump and visiting with my son, husband and a nurse friend from church. It was uncomfortable with the pain and the heat (itching inside the bandages and compression stockings) but not as bad as I expected. I moved up to the post surgical transplant floor on the 4th day after the surgery (which was at 8 pm). On the floor, I was able to use the bedside commode with a walker. I had a lot of tubes and wires everywhere but they started removing them that day. By the fourth day, they were all removed and I could use the regular bathroom. Physical therapy started the second day and by the third day, I was walking in the hall. I was also sitting up in the chair between 6 and 12 hours a day to build my stamina and core strength. We also practiced the stairs because I would need to do them at home. In addition, I had to learn to manage all of my new medication for myself, which they had me set up every morning. This all helped me to get home quicker. I had to learn about diet changes to reduce the risk of infection (e.g. No buffets, deli prepared foods, microwave cold cuts for at least 15 seconds before use, no using cut vegetables after 24-48 hours, etc.). I also have to watch how I handle our cat because of bacterial risks and that's been hard because he doesn't understand. He developed diabetes while I was in the hospital and needs insulin injections twice a day. I was discharged on 9/1/16.
Once home, I slept downstairs in the living room. I opted for a deluxe roll away bed ($300 on Amazon) rather than a hospital bed and an adjustable wedge pillow. This way we could use it afterwards for guests too. I knew I would have difficulty sleeping and didn't want to disturb my husband. I also wanted to limited the trips on the stairs. I had Visiting Nurse and physical therapy for the first 3 weeks and then that ended because I was doing well. I had weekly biopsies before leaving the hospital (weeks 1-4 post surgery) and spreading out further from there. I currently go once a month until next August. We've had to go through my groin because my neck veins are still healing which isn't fun. So far, there's been no sign of rejection and we're looking at possibly just checking rejection through blood tests so we don't create any problems with the veins in the groin. I'm all for that.
The hardest part has been the sensitivity of the incision. The scab had to peel off for it to heal and that has taken 2 1/2 months so far. Now that it's off, the skin underneath hurts from everything including air. Lidocaine patches help. I'm also used to being fairly active and I can't be now because my body won't cooperate. The new heart gives you good energy but the body is weak and traumatized. I have trouble gauging what I can do and when I should stop. I couldn't drive for the first 6 weeks and that was hard. I still need help to go to the grocery store and reaching for things. I lost my job because of the amount of time I was in the hospital so that's been a huge adjustment. It's been a chore switching over insurance (which was through my job) and figuring out how to cover everything until I get an income. I applied for disability (another chore) but don't know how long that will take. My church and family & friends have been invaluable in keeping us afloat. My son chose to transfer to a school near home to help and so he wouldn't have to worry about everyone. He has taken on primary responsibility for the cat and had been great. My husband is in treatment again but I 'm not stressed. We've been through too much to get down now.
But, most importantly, I'm happy and I'm healthy again! I would do it again in a heartbeat. I hope my story helps anyone who may be in the same position.