Copied from Another BLOG

So I am about to copy & paste a post from another heart Mom's BLOG. I thought it was so interesting and encouraging that I HAD to share. I hope you will find it informative as well. Although this boy's diagnosis is HLHS (Anna Grace's is HRHS) it is very similar. So... here goes....

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I'm sure several of you watched the ABC show BostonMed a few weeks ago when the episode featured a family expecting a baby with HLHS, right? I watched it. And honestly I was disappointed that it didn't provide any time lapse information so viewers had at least a little clue as to how long the Peerless family was in the hospital with their son, Sam. In my opinion, it went from birth, to an emergency surgery to discharge and then suddenly showed video from their home. It never once indicated how long the family was in the hospital, the fact that the baby had a second scheduled heart surgery (the Norwood) and didn't show any obstacles or struggles with feeding or any other area of the baby's recovery. I was disappointed to say the least. Again, in my opinion, ABC (through their wonderful editing) made the HLHS journey come across like a walk in the park.

I spent some time reading through the various comments on the Peerless family's patient page on the BostonMed website and honestly it seems apparently I'm the only one who felt the way I did about how ABC represented this family's journey. I know they had a very rough time, obviously any family in this position would have a scary and uncertain future ahead of them and I know first-hand (as do several of you) how difficult it truly is. So again, let me emphasize that I'm disappointed with how ABC represented the story and in no way have any ill feelings toward the Peerless family. I am ecstatic their journey with little Sam has turned out so well and am so pleased that their family is together (i.e. her husband is no longer deployed).

Anyway, I say all of this to tell you that while reading through the comments, I came across a comment from a 20-year-old HLHS college student named Tom. He provided his email address in his comment to the Peerless family, so I decided to email him, hoping he wouldn't mind my "stealing" his contact info from ABC. :)

I was pleasantly surprised, overwhelmed and utterly encouraged by the response I received from Tom. I asked for his permission to share his thoughts/comments and answers to my questions here on the blog, and he was so very nice enough to oblige. Thank you again, Tom, for your generosity!

Here we go!

Here is Tom's story, in his words:
"I was born (first child to my parents) in 1990 in the San Fransisco Bay Area and diagnosed within hours with HLHS. I am not sure what the hospital was called but I was transported to UCSF where I underwent my first step of surgeries. I had the norwood and glenn at UCSF with Dr. Haas which was supposed to be 2 surgeries but because of complications was actually 4. My last open heart surgery was done at CHOP (Philadelphia) which was the Fontan with Dr. Spray. I am not sure how many catherizations i have actually had but I actually have one this thursday at phoenix childrens hospital. All of my caths have been done for mainly 2 reasons. 1. To get images, data, and information about what is going on in my heart that is difficult to get other ways and 2. to perform small procedures as in placing a stent or a balloon in the heart.

I am currently on 3 medications; coumadin as a blood thinner, digoxin for my heart rhythm ( i have been known to have heart flutters) and enalapril for the blood pressure in the aorta.

So thats the logistical stuff....as for me, I feel great ! I have lived nearly a normal life with just more restrictions on certain things...less caffeine, less athletics, sports, etc. I played sports until i was about 10 though....just recreationally and with friends and still play some sports with my friends. I just have to make sure I know my limits and my friends respect that which makes it alot easier. I am a college student entering my junior year this august. I am a physiology major hoping to enter medical school soon ! my cath this thursday is simply a checkup on my heart to see whats going on since they have had a difficult time getting images via MRI because of the metal coils in my heart."

After sharing his story, Tom was nice enough to answer my questions:

I'm curious if you have any older or younger siblings, and if any of them have any heart issues?
I am actually the oldest of 4 and my sisters and brother have not had ANY other issues; heart or anything.


Did you have a similar series of surgeries like they're doing today? Norwood, Glenn, Fontan?
I have had 5 open heart surgeries as of now....the norwood was 3 for me because of complications, the glenn, and fontan! exactly the same but probably go more smoothly now haha


How much of your early experiences/surgeries do you remember?
I do not remember anything from my open heart surgeries...its been about 13ish years I think since my last open heart surgery but I do remember some from my catherizations since I have had a few the past few years and one this thursday...its not traumatizing or anything but I do get scared before I go under anesthesia a little. but being the future doctor that I wanna be, I know that medicine and my doctors willl do the absolute best for me so I don’t worry too much.


What was the hardest thing for you as a child growing up with HLHS?
I will say that junior high was by far the toughest....boys being boys and being that age is tough because people are sooo critical of each other. I was always embarassed of my scar which I now know is not at all a big deal, in fact, girls dig scars lol.....I also LOVED sports so having to let go of them around the age of 10 because of how competitive they became was also difficult. I had to get over the kids teasing me and stuff in PE class but honestly, after junior high, it was easy because people understood.


If you have siblings, did you feel you were treated the same as they were? Would you have wanted to be treated differently?
I have been treated the exact same as them...I mean obviously after a surgery or something ill get special care but other than that, everything was the same which I really appreciate because as HLHS children, we just wanna be as normal as possible.


Did you get sick often as a child, or did you stay relatively healthy when it comes to colds, flus, etc.? If you did get sick, how serious was it?
I actually have had a great immune system and hardly ever get sick....when I was a child my parents did everything they could to keep me from getting sick so it never really happened but when I do get sick, its nothing worse than a normal flu or cold.


If you could change anything about your experiences over the past 20 years, what would you want to happen differently?
I would not change a thing honestly. and if somehow I could take HLHS away, I wouldn’t because it has made me a MUCH stronger person and I would not be the person I am without it. it has taught me a lot about life and has really opened my eyes to life in general. and my interest in medicine has become a result of HLHS.


What prognosis has your cardiologist provided for your future?
I have not really spent the time talking to my doctors about my future that far down the road. The problem and reason that this is the reason is because I am one of the oldest children with HLHS still living....I think the absolute oldest is mid 20s. as bad as it sounds, my "generation" of hlhs patients are like the guinea pigs that are almost like the test material that they learn from....this is why I still see a pediatric cardiologist, because cardiologists don’t know much about our diagnoses and futures. but, as my generation continues to grow older, we will learn more and see how long term effects our hearts.


Just curious... how did your parents handle your diagnosis and surgeries?
my parents handle it well actually....I don’t have memories of my open heart surgeries but as for catherizations they act normally leading up to the day but when I get taken back and stuff for the anesthesia, my parents do shed some tears and get nervous....kinda like I do too though. but they handle it well.....probably better than when I left for college lol

hopefully i gave some good information for you...i know just how hard it must be for you and how much you worry about your child but trust me, medicine is so great right now....i mean, i was born in 1990 and i have been amazing! nearly normal life....just a few bumps along the road.
What an amazing blessing and encouragement Tom has been to my family and I with his open and informative response! I hope and pray he can be a blessing to you, too!