James Gradient Increased

[Janet McClure]

I have been having a lot of trouble with James the last couple of weeks. We did find out that he has mono and has had it for a few weeks. We also went back to the doctor yesterday because he has not been sleeping at all and having dizziness and other issues. They did another echo yesterday and determined that his gradient has gone from 25 to 60 now. So they have put him back on the Toprol, also on Fludrocort to help with fluids in his body and also Atarax to help him relax and sleep at night. I am hoping with these three medicines he will settle down some and we will see some normalcy. They also put an event monitor on him and we have sent a couple of transmission to the doctor's office. We were suppose to go to Washington D.C. next week but they have decided it would not be good for him. He is getting tired really easily and I don't think he could handle all of the touring, walking and going. We also decided he would not play ball either. Just throwing the ball around was making him extremely tired as well.

I think his sleep issues could be from stress. I know he seems on the outside to handle things pretty good, but I feel that when he gets in his room alone and settles down that it weighs heavily on his mind. I know I am almost 40 and would upset me. He is only 12. Anyway, just wanted to let you know what is going on with James.

Thanks, Janet

[Laoshur]

Janet,

Thanks for updating us. Mono is enough to knock most people for a loop. HCM with obstruction knocks most people for a loop. Getting an IDC is a psychological blow. So, no wonder James is having a hard time. I pray that the meds will help him get some sleep and that he will feel much better soon.

Rhoda

[Linda]

Janet, I hope James has a better week and things improve quickly for him. He's been thru a lot, and so have you! Linda

[Pam Alexson]

Janet , yes you and James have been through a lot in a short time. I remember the " shock and awe" of first hearing everything that I was told about my HCM. It was a time of overwhelm , grief , anger , saddness and many, many more feelings as my brain was flooded beyond capacity and unable to cope at times. It is a process like any other and unique to each individual and their loved ones.

I hope I am always able to remember my experience and the feelings it evoked so that I will always be empathetic to what others are experiencing.

Over the years there have been many reconciliations to be made. Each one has taken time , energy, care and thought in order for me to find proper perspective and to always be able to strive to keep a positive outlook throughout the process.

I am sure James will benefit from validation and check-ins with you and perhaps if needed a professional as he deals with how HCM fits into his life. No one should ever have to keep this silent and put it in a box. James is lucky to have you as his mom and that you are so attentive and invested in his care and well being. For some individuals, the silent ,take it to my room coping , goes undetected by loved ones. You are on top of it and continue to use your instincts as you help James adjust and learn about his life.

My best.

Pam