Kendra Lynne

Kendra was born February 1st, 1992 with hypoplastic left heart syndrome. She had her first heart transplant on March 30th, 1992. Following her transplant she spent 8 more months in the hospital dealing with serious respiratory complications which included manifestation of CMV (from her donor heart), staph infection, pseudomonas and pneumonia.

After finally being released from the hospital in November of that first year, her recovery progressed very quickly. She came home on 14 medications, oxygen and a g-tube for feeding. She progressed well at home with physical and occupational therapy, gradually weaning down from 14 meds to cyclosporine and Imuran, eventually eliminating even the Imuran.

Kendra enjoyed the next 10 years of her life with no episodes of rejection or any significant illnesses that required any hospitalization. There was definitely some residual emotional scarring though. Kendra spent some time in play therapy dealing with anger issues and phobias. She also had sensory integration disorder and some learning disabilities which required her to be in special education at school. Her transplant was not a focus of concern for her. She had grown up with this way of life since infancy and didn’t know any different, but as she grew older she did begin to understand that she stood out from her peers, and it wasn’t necessarily a positive experience from a social standpoint.

In March of 2003, Kendra had her first biopsy in 3 years. She came through with flying colors. Her cardiologist was very pleased with her heart function and perfect coronaries. He felt she had passed the point of fearing any rejection. So my guard was down when...

On July 9th, 2003 I brought Kendra up to Children's Hospital in Denver because she was having flu symptoms that were not going away as they usually did, and she was exhibiting signs of edema which had been uncharacteristic of her for many years. As she went through all her usual tests in cardiology clinic, I began to notice that all was not well. Her weight had gone up 13 lbs. all of which was fluid weight, and her echo and EKG did not look normal, even to my untrained eye. Dr. Pietra, a cardiologist I had heard of over the years but had never met, came in to view her echo. He ended up telling me that which I never thought I would ever hear, that Kendra was exhibiting signs of acute rejection after 11 years with no problems at all. It was devastating to me, but to Kendra it was horrifying. Dr. Pietra and I were both assuring her that it did not mean she would need a new heart, and she would not die, but technically we would both end up being wrong.

My husband Darren came over from work immediately to be with us as Kendra was admitted to begin her regimen of immunosuppressant meds through IV. She became very ill the first night, trying to throw up (she was unable to throw up as she had a Nissan procedure done when she had her g-tube placed to prevent reflux) and having diarrhea about every 5 minutes. So by the next morning she was taken down to the CICU (Cardiac Intensive Care Unit). She had to be monitored very closely for proper hydration with all the fluid loss, and sedated to make her more comfortable. Her stomach was hurting very badly. She seemed to go up and down over the next few days, but by that Saturday, she appeared to be getting through the treatment and doing better. Her diarrhea persisted. She kept having episodes that were very uncomfortable for her, especially considering her age and concern with the fact that she was growing up, and did not appreciate having male nurses taking care of her most basic functions.

At one point that evening, Darren and I were trying to clean her up and change her as she was going through another bout of diarrhea. The nurse was unavailable to help us, and as we went through four changes of diapers (she was too sick to get up out of bed so they were using diapers), her anxiety levels were getting higher and higher. She finally looked at me and said, "Mom, I am going to die!" I looked at her and tried to get her to focus on me so I could help her calm down when I saw her eyes begin to roll back in her head. Then she just went limp as I held her face in my hands, screaming her name over and over. Darren began to call for help as she flat lined before our eyes. We backed out of the unit into the waiting area and watched as the nurses performed CPR.

Everything seemed to happen in slow motion. After what felt like an eternity I could see them intubating her. I knew then she had been revived, but anxiously waited to hear from the doctor at what cost and why would this be happening?

I don't remember much of what was said, but I know that it was all so precarious at that point. What I do know was that we were told that the heart had sustained some damage. She was still having PVCs but was self-correcting. They didn't know how long she could continue this without having another cardiac arrest, and if she did, they didn't think she would survive.

Several hours later, we were summoned by Dr. Pietra to make a decision that would not be easy. The two choices we were given didn't give us much hope either way. We could either give the OK to put her on ECMO, which is heart lung bypass, to try and give her heart a rest, with the hope that it might recover as she continued on her anti-rejection therapy, or they could transport her to University Hospital where Dr. Campbell, her original transplant surgeon would put in a left ventricle assist device (LVAD). Dr. Pietra didn't think she would survive transport though, and the ECMO was in his opinion, a "last ditch effort" to get her heart to recover. We ended up choosing to try ECMO as we couldn't imagine just letting her go, the same feeling we had when she was born and we were given the option to transplant or bring her home to let her die. She was on ECMO only for 2 days. She kept bleeding heavily and had to be taken back into surgery to find the bleeders, which was one of the problems they said was common with ECMO as the chest is left open, and there was great risk of infection. She came through both surgeries well, but the 3rd time she started bleeding, they were telling us that they felt she needed to be taken off ECMO and closed up. The risk was too great. But the 2 days had given them some flexibility with her drug levels. They felt her PVCs could be controlled with meds for the time being. The plan was at this point to wait and see if her heart had been given enough opportunity to recover now, but talks started about putting her back on the transplant list for a new heart "as a back- up". We had no problem agreeing to that, but felt now that\it was a remote possibility. Of course she would recover now!

But as time passed, Kendra's heart continued to have PVC's. Her pacemaker was continually adjusted down by Dr. Campbell to see if it would function normally without help. But it continued to have PVC's and now V-tach episodes (ventricular tachycardia or multiple PVCs). Kendra would make a small gain in one area but then the next day take two steps back again. Her kidneys were beginning to show signs of failure now. Darren and I began to hear more talk about getting her listed again, which apparently had been held up as the insurance company had to give their OK first.

She finally was approved. On Monday the 22nd of July, we were told by our transplant team, that they were looking at transplant now as Kendra's main option, but because they couldn't guarantee a new heart, they were continuing to treat her for rejection. Kendra was now at the top of the priority list for a new heart. We really hadn't been ready to hear this, but we were glad to get some straight answers. Dr. Campbell, as well as Dr. Pietra, were guarded in their opinions, but both said there was still a chance she could pull through this on her own.

On Tuesday afternoon, I was talking to Chris, our coordinator, when Dr. Campbell came up to me and said, "I think we have a new heart for Kendra". Just like that, one day after hearing she was at the top of the priority list! Darren was brought over to hear the news, and the process began. After hearing from Dr. Campbell that he felt her heart had been given more than enough time to recover and he didn't want to pass up what might be our only opportunity for a new heart, we felt confident that it was the right thing to do, but we still hadn't wrapped our minds around the fact that this was really happening again! It had only been a couple weeks ago that Dr. Pietra and I were assuring Kendra that she would not die, nor would she need a new heart. In some ways I felt I had betrayed her. But Darren and I both knew that Kendra wanted to live. It was the only choice we could make. I also felt at peace with the fact that the heart had become available so quickly. It just felt right, that she was meant to get this heart and that she wasn't ready to go yet.

The transplant went smoothly. We went down to the emergency entrance to escort her new heart up to the OR around 12:35a.m. By 4:00a.m. Kendra was being sewn up and moved into recovery. Her long journey was just beginning, all over again.

Kendra was finally released from the hospital into our care on August 10th to the Ronald McDonald House in Denver, a month and a day following her admittance into the hospital. It was a long and slow recovery process as she has become slowly aware of what had happened to her. Emotionally it was difficult. Physically it was challenging. Kendra had to receive radiation treatments as part of the newer rejection/retransplant protocol. Studies have shown that the risk of rejecting again goes down from 56% to 3% with these treatments.

It took a lot out of her and she was very tired. The Cellcept medication made her stomach hurt, and she was very nauseous while on it, making it difficult for her to eat and re-gain the 10 lbs she had lost. Her white blood count had been down because of the meds and the radiation, so she was taken off of Cellcept one week early, to prevent another transfusion. Her appetite picked up and she began maintaining her weight. Kendra finished her 10 radiation treatments on September 5th. She was home and back in school the week of Halloween.

This experience has made her seem old beyond her years... maybe it has something to do with the fact that her heart came from a 19 year-old this time. It has been over 3 years now since the second transplant and Kendra has done really well physically. She continued to go to counseling to deal with the emotional scars from her PTSD, but we are so grateful that she is alive. We have been given the gift of even more time with her. If you ask her now if she would go through it all over again, she doesn’t hesitate to say “Yes, absolutely, because it has allowed me to stay alive!”