Lee’s Story

Written by Michaela Coombs


Lee Paul Coombs was born on January 10th 1994.


At 4 weeks of age, he had open-heart surgery to unblock his Aortic valve because of a defect called Aortic Stenosis.
At 3 years it was discovered that the previous surgery had damaged the Aortic valve and further surgery was required.
This is Lee's story.
 

In August 1997 Lee and I travelled to Melbourne where corrective surgery, called a Ross Repair was performed on Lee. This surgery requires removing the damaged Aortic valve and replacing it with the pulmonary valve. The pulmonary valve is then replaced with a donor valve. Lee developed a severe Staphylococcus infection requiring his chest to be reopened for drainage of the sternum bone.

Tests in the week following surgery showed damage to his heart muscle, along with leaking Aortic & Pulmonary valves. Lee returned home in a worse condition than when he had left. A Heart Transplant was then predicted for the near future. Despite the grim prognosis, Lee lived a happy active life showing no signs of his condition. He participated in all school sports and even won champion trophies on occasions.

In 2003 at Lee’s routine cardiology appointment, it was discovered that his condition had deteriorated and the time had come to transplant. I wasn’t seeing any outward signs of this and knowing the dangers of transplant, refused to list him. We then followed Lee’s original Cardiologist into his private practice putting all thoughts of transplant behind us. Lee continued to thrive and developed into a normal teenager full of life and unaware of the seriousness of his heart condition.
Early in 2008 Lee started to experience the odd bit of shortness of breath along with a pain under his ribs on exertion. May’s Cardiology appointment showed Lee was now in life threatening congestive heart failure with frequent arrhythmias. He was fitted with a defibrillator/pacemaker in July, which saved his life in October. He was then referred to the Advanced Heart Failure Unit at Royal Perth Hospital to undergo the cardiac work-up for transplant.

In all the years Lee had been living with his condition, I never felt it necessary to tell him how serious things were. He had never listened as a little boy when the Doctor’s mentioned transplant and I didn’t believe any purpose would be served by telling him. His life had always been happy with no worries for the future, why would I want to change that? Even while he was undergoing the testing he was still confidant that he would be fine.


After the completion of the tests we were summoned to the head doctor of Cardiology at the Advanced Heart Failure Unit. Lee, at 14 was about to have his whole world come crashing down. I had informed the Cardiac Unit on many occasions of my decision to keep the bad from Lee and how I’d prefer to deliver bad news to him myself. After all, I was his mother and believed I had that legal right. That was not to be and the Doctor delivered the news to Lee in the following way. “You are a tough one for us Lee because you are so well, but there is no surgery for you, no miracle around the corner, you will die if you don’t have a transplant ASAP.”



The tears welled in Lee’s eyes and I could have slapped that man. We left for the long journey home with Lee in a terrible state. I still felt that transplant wasn’t right for Lee that there was something else that could be done.

When I arrived home, I went straight to the computer and typed Heart Transplant alternatives into the search engine and my sister did the same. My sister got the result first, Stem Cells. I was aware of the work in this field and had always felt it was hope for Lee but it was in the future and it was looking like Lee didn’t have one! I was completely unaware that there were countries already using them with amazing results.

I filled out the application for a company called Theravitae, which had Doctors performing the surgery in Bangkok, Thailand. I received a call from them straight away and they went on to email me all the details. They requested all Lee’s test results and informed me the Thai Doctors would look at them all to see if Lee could be a potential candidate.
Finally, there was hope. The smile and relief on Lee’s face when I gave him the news was priceless! He dragged himself back up from the hole he’d been put in and went back to living happily with the confidence that he’d be fine.

The next few weeks were busy as I tried to find a way to get my hands on $60000, the fee for the Stem Cell Surgery package. Through loans from my family, the life saving treatment for Lee was looking like a reality.

We left for Bangkok on the morning of January 31st 2009 and the surgery was scheduled for February 10th. The Cardiologist in Bangkok ordered a mountain of tests of their own and in between these we were able to visit some of the tourist’s spots of Thailand. Lee was so happy and full of hope for his future, I on the other hand was fearful knowing another open-heart surgery on Lee’s weakened body was a huge risk. Still, instinct was strong that Lee would make it and this was the only chance of avoiding a transplant.


The surgery went well and 70 million of Lee’s own adult Stem Cells were directly injected into 30 different sites of his heart muscle. On our last visit with the Thai Cardiologist before flying home, he made a statement that was familiar to me. He said, “I think something else has caused this to happen to Lee, perhaps another condition, maybe even another heart condition undetected.” I explained the Doc’s in WA believe the extra workload placed on the heart from the leaking valves is to blame. “Possibly” he said “but I don’t think so.” The Perth Cardiologist who fitted the defibrillator had said something similar and he believed something else was at work. The Thai Cardiologist then went on to tell Lee that he must keep his own heart for as long as possible and that there are new procedures being developed constantly. This was music to my ears and the exact opposite of what the Doc’s back home were saying.


A week after we arrived home Lee started to retain fluid, a common problem after heart surgery but one that I’d forgotten. Lee had lost so much weight while in hospital that I had been filling him with chocolate drinks in the hope of him gaining weight.
Our GP arranged with the head of Cardiology at Royal Perth Hospital to admit Lee that day. In they swarmed, the arrogant Doc’s of the Advanced Heart Failure Unit, confident that now we will reconsider transplant. One asked Lee his diuretic dosage and snapped at him when he looked at me for the answer.
Things turned nasty while Lee was in hospital for those few days. We angered the Doc’s with our refusal to transplant and our belief in stem cells. On the next follow up appointment the Doc told Lee he was close to death and had only a 5% chance of making it to Christmas!
Lee sunk low the following week, the fluid was still a problem and the surgery had taken its toll and left him weak. He saw no future for himself and feared the Doc’s may be right.


We had a visitor that week, a long time friend who had lost a son several years before. She was so happy, telling me she had received confirmation her son was around her. A mutual friend of ours had been given a reading from a psychic medium at the local winery. The psychic was Gypsy Maggie Rose. Maggie was able to connect with my friend’s son with accurate details of his death. My father and brother had recently died and having nothing else but instinct to help with my decision making, thought perhaps she can contact them and Dad will tell me what to do.


Maggie agreed to see us later that week and we arrived late in the afternoon. She had arranged for her close friend Janet to be there, as she believed Lee needed healing and the two together were capable of this. I’d never been big on this sort of thing but I had nothing to lose, at this point I was open to anything!

Lee lay on a bed while Maggie and Janet quietly prayed over him. Maggie asked me if I had I lost a baby and before I could answer, told me Lee had the presence of a baby brother with him. I had miscarried what I believed to be a boy, on Lee’s birthday in 2006. She went on to tell me of the old style nun watching over Lee which didn’t surprise me. I’d been praying to the 19th century nun, Sr Mary McKillop to watch over Lee since I read of her being considered for sainthood years before. She told Lee she felt he’d be ok and that the stem cells were working.

The following week we were back at the Cardiologist for a routine appointment. We were hoping to see signs of the stem cells working but were disappointed. Things had worsened and the Doc attacked me for filling Lee’s head with hope. “There is no hope, he will die.” I walked out on the appointment that day; I didn’t want Lee listening to anymore. Lee was in a terrible state once again and I didn’t know what to do to help him. “They don’t know what they are talking about” Lee said, “God decides if I live or die, not them!” “I want to go back to Maggie, let’s go back to Maggie, she knows what she’s talking about.”

I called and set up another healing session and several more after that. Maggie told Lee to keep the Doc onside by agreeing to go on the transplant list. “You will be safe” she told him “it will be 4 months before a suitable heart is available.” Right again!

Lee came away from each healing session with more confidence each time. He say’s he feels better when he’s been, he can’t explain it. The fluid retention lessened and his body grew stronger until finally it was showing on the cardiac tests. He removed himself, with my permission in August 2009, 4 months after listing!

People have asked me if I really believe in the healing sessions and do they work? I reply, it doesn’t matter what I or anyone else believes, Lee believes in them and that’s the most important thing!
We still don’t know what the future holds for Lee, life with his own heart we hope. We cling to the hope that the two Doc’s who questioned the role of Lee’s valves in his heart failure are right. That gives hope that treating his body with nutritional supplements may restore him to the condition he was before 2008. Our WA Doc’s don’t believe in the ability of stem cells so they won’t believe the role God plays in our healing or the ability of Maggie. I say, the proof is in the pudding, take a look at my Lee today!


Lee is happy and as active as any other teenage boy these days. He once again participates in school sports and is looking forward to starting Senior High School in 2010 alongside his mates. It’s been one hell of a year but made that little bit more bearable thanks to Maggie. Lee’s faith in God is stronger than it has ever been and he believes God healed him through Maggie. I believe my hand has been guided all along in my decisions where Lee is concerned and God was in control of all, taking Lee to healing sessions with Maggie was just one more step in Gods plan.



Sadly .....
Lee Paul Coombs passed away on March 3rd 2010



before Lee's passing...........................




We came home from Sydney in October 2010 with a decision to make.

The Surgery could go ahead but it had never been done before and it was such a huge risk. I left it for a few weeks and then I asked Lee what he wanted to do.

“I want the surgery “he said, “I don't want a transplant and have to live with a clock with the time ticking down. I don't want no immune system so I'm always sick!”

Once again I reminded him of how dangerous it was and he said, "If it doesn't work, Mum, it's just like going to sleep." He then said, "What I am worried about Mum is, if it doesn't work, can you take all the I told you so's?"
We were warned not to attempt it and my boy was worried about me and how the Doc's would treat me afterwards. I told him not too worry about that. If I didn't have him I would never have to see those people ever again!

The surgery was scheduled for February 17th but cancelled because they didn't have valves big enough for his enlarged heart. Eventually it was done on Feb 27 and all 4 heart valves were replaced. Unfortunately Lee's heart failed to restart and he was placed on an ECMO machine and on top of the national heart donor list.

On Feb 29th, Lee's sedation was reduced to access his brain function and he was able to come around enough to look at me and give me a grin. He must have thought that he had done it, he had made it. Once brain function was seen to be undamaged, they put him back to sleep.

On March 1st, they decided to give him a full mechanical heart.

While trying to sleep the day away I dreamed of Lee.

He was standing smiling at me and said, "I'm alright Mum, I'm ok." That night, blood clots entered his brain and he was never to awake again.


On March 3rd... Lee's life support was removed and we were never to speak to our wonderful, brave son again.

 

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