I have been so busy, and 2019 my life was flipped upside down.
Our oldest son, Peter McBride (KING PETER) passed away. He was 19 years old.
As many know Peter was blessed with a 2nd chance of life in 2005 with a heart transplant. The first 5 years of his life were basically spent in a hospital, or sick and not feeling well, tired, blue, and lots of other trial and tribulations. After that transplant he was a new kid. We had 14 more AMAZING years that we thought we would never get with him. He had a few minor bumps in the road, but all in all he had a whole new lease in life!
In June of 2019 we noticed his feet started getting some pretty severe swelling, we took him to his cardiologist several times but all the EKG and labs would came back normal. They would have us increase his lasix, or make sure he wore compression socks, or cut out salty snacks, or drink more water or elevate his feet at night. These measures would help a little bit, but then he would go back to the pitting edema. We went on vacation and noticed he was tired, he couldnt hike as much and as long, and wasnt his usual chipper self.
In August we had his yearly cardiology appointment and biopsy/catheterization. They found that his descending aorta was narrowed to the size of a dime and had to go in and do a stent.
His poor body could barely handle the stress and anesthesia and he was in ICU for a week.
He was finally released and given strict instructions of light activity only, extra lasix to get all the extra fluid off and lots of rest. We did all that.
At that time we were told his heart (which was received in 2005 as a transplant) was going through transplant failure and we would need to hold onto it for as long as possible but it would need to be replaced. We were to start the transplant evaluations and told he had a few hurdles to overcome. He had pretty deep scar tissue from all his past surgeries as a baby and from his first transplant. Because of multiple blood transfusions and immunesuppression medications he has been on since he was a baby, his antibody levels were maxed out. (which means if given a new heart his body would immediately attack it). He was prone to arrhythmia (as was evidenced in his ICU stay).
But we were going to go ahead with the evaluations and see what we could do, all the while taking care of what we had left in the meantime.
September 30th. He had a cardiology appointment. Dr no longer used the word "Hurdles" when talking about transplant approval. He specifically used the word "obstacles". He then mentioned that Peter was at a high risk of sudden cardiac death due to the type of arrhythmia that was common in transplant failure. That was a complete SHOCK to say the least. that was the first time that was even mentioned to us. We didnt say anything to Peter, didnt want him to worry.
(When we started the transplant relisting process I kept getting the nagging thought "What if he isnt approved"?
Every dr visit I would feel more and more discouraged and I would feel like a 2nd transplant was going to be an uphill battle. In the back of my mind I always thought "what if".
I never made that admission out loud except to my husband who would always say "I dont know. Im not going to think about that until we get there". SO of course I felt like the Debbie Downer every time I would think it.)
That cardiology appointment was his last, They had scheduled a CAT scan to see how bad his scar tissue was and then we were going to start the other dr visits etc. I wasnt feeling very well, so That night we ordered takeout, he had a good dinner that he enjoyed. We watched Masterchef together (something we did every night). He hugged me goodnight and went downstairs to his bedroom.
The next morning his brother went to go get him up for early morning seminary. He screamed the most heart wrenching scream, a sound I will never in a million years be able to get out of my head. "Help! Help me! No no no no no! Hellp Help!! Charles rushed downstairs and yelled up "CALL 9-1-1!!"
I said what happened, whats wrong?
"Peters dead!"
Apparently he had passed away sometime in the night. He had his laptop set up in bed to watch videos for a little bit like he did every night, he was undressed. But he was on the ground. When it got hot Peter would lay on the floor and cool off, and it was unseasonably warm that week. He had this little wooden step stool that he would use to get into bed and he was laying on the ground with his shoulder on the bottom step and his head on the top step. He hadnt fallen, he was in a natural, graceful position like he had purposefully laid down. The rigor mortis was such that I assume he passed away very shortly after going to bed that night, maybe 11pm? It was 6am when he was found.
The rest of that day was a total blur. I dont remember much of anything.
We received an email from his cardiologist that he was almost positive that Peter passed away from an arrythmia, and had Sudden Cardiac Death. it would have been painless and fast.
In doing research SCD is fatal if not caught immediately. People who have survived say that they felt super tired and next thing they know they were in a hospital bed. I think that Peter suddenly felt tired and didnt have the energy to hoist himself up into his bed, so he just laid down on the ground like he would do on occasion. I think he just fell asleep and died peacefully.
In the past 6 months I have come to finally accept that he is gone. Sometimes it feels like he was hardly even here at all. I think back and it is hard to remember . He was like an angel that was sent to us to teach us a lesson and then he left and we cant remember him being here. Sometimes it hurts so bad I cant breathe. Sometimes I will find something random that reminds me of him and cant help but smile. I am a jumbled bag of emotions. I miss the king so desperately sometimes. Other times I am okay because I know he is in a better place surrounded by his loved ones.
I look back and I can see the signs. I think I had been mentally preparing myself because I couldnt shake that persistent feeling that he wouldnt be relisted and we were going to lose him. I think Peter sensed something as well. After his stint in ICU we had a month of a completely different boy. He was so loving, and wanted to be with us all the time. He wanted to play games and spend as much time with his family as he could. He was wiser, more serious, took his responsibilities more seriously. He had matured almost overnight. He made sure to hug and kiss and say I love you more often (this was NOT a huggy kissy kid). He made his last month worthwhile.
I miss King Peter more than I can say.
Over the next week or so I will be typing out all the words that were spoken at his memorial service.
RIP King Peter, you are one of the noble and great ones. I love you! Til we meet again.
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