Monday, July 25, 2011

Liver MRI Results, Holter Results, Another Appt

Hello Everyone!

I had my Liver MRI July 15. The MRI itself went well and was a lot shorter then my Cardiac MRI that I had last month, I did have to wait awhile to go back for the test as the office was so busy that they were running a bit behind, but that is ok. After the MRI Chris took me out for some yummy pizza, so we made the best out of the day.

Last Monday I got a phone call from my Cardiologist’s office with my Liver MRI results and my 24hr Holter results. It had been over a month since I had worn the 24hr Holter monitor so I was glad they finally had the results of that in as well. I’ll start with my Holter results: All is well. I have no abnormal heart rhythms, a-fib, etc. which is great! I still have my minor heart rate issues, but they haven’t gotten worse and I’m still on my same dose of beta-blockers (my heart rate medication) that I have been on since I got the issues 6 years ago. So I was glad that everything is stable right now. As for my liver... it looks “ok” for a Single Ventricle Fontan patient with an older Fontan. My liver is enlarged which is to be expected, but my liver function isn’t what they were exactly hoping for. With my pretty good stable Heart function they were expecting pretty good liver function as that’s usually how it goes… not me. My liver is “high” normal for someone who is an older Single Ventricle Fontan doing well Heart wise. So, my liver will have to be kept a very close eye on from now on and they said if my liver levels continue to rise, then they we’ll think about options… which the first step would be medication. BUT they said to keep living and not to worry about it right now as there is nothing I can do about it, it’s just the way my liver is reacting to my Fontan in MY personal case and that my liver is OK and acceptable for right now… it could stay this way for years or one year, who knows, but I will continue to live and not worry about it.

In other news, I got to meet a Heart Mom while getting my Liver MRI as she worked in that office. It was so nice to finally see another person I have “met” through the online CHD community face to face.

Also, my Cardiologist signed Handicap parking papers. So, now I have a Handicap parking placecard for our (Chris’) car. This will help in really hot weather and in really cold weather or when I have to park all the way out of the way on my college campus. I may be doing well, but in certain weather and walking long distances is not very easy for me, so this will be helpful. This to me does not label myself disabled, this just means I have some limitations and I care about my Heart health.

Other than all that, life continues to be busy with college, family, keeping up the apartment, etc. We do get some time to relax now which is nice. There hasn’t been anything new or exciting lately, most stressful than anything. I do have a doctor’s appointment at my Primary doctor’s on Friday to get some booster shots (Tetanus & Whooping Cough) and to get evaluated for Asthma… hopefully they give me a referral to a Pulmonologist to see if I do indeed have Asthma. A few years ago after a stress test I was told my old Cardiologist (of 22yrs) that I may have minor Asthma, but I had no symptoms so never got tested for it… well for over a year I’ve had symptoms and they keep getting slightly worse… I hit most of the Asthma symptoms, so I’m hoping to get an official diagnose and medication… if not then I’ll be tested for other things to find out what is going on. I know it’s not my heart as I just had a Cardiologist appointment and all was good. I’ll keep everyone posted.

Even though things haven’t been easy, I shouldn't complain as I’m doing pretty well and do have many things to be grateful for… I am blessed. Sending thoughts, prayers, and **Heart Hugs** to all! My Heart/CHD family means SO very much to me!

With Hope, Love, and Faith,

Wednesday, July 13, 2011

Quick Random Update

Thought I would drop in and just give a brief update on what's going on in my crazy life haha.

My 2nd Summer term of classes started last week. I have two classes instead of one like the first half of the summer. I'm in school most of the day Tuesday and Thursday (11:30-2:20 & 6:10-9) which can get me tired, but I mange pretty well and I'm proud of myself for it! I graduate in December and I can not wait! Woohoo! :)

I sat down and thought about what I want do as a career after college for a long time over a few day period it was in my head. I think I'm going to try my hand at being a Child Life Specialist. I know what it's like to be in and out of the hospital, so I think I would do well at this. This will mean that after college I need to do 100 volunteer hours, then a 680 hour Internship, & lastly pass a test... all this to be certified. I hope I can do it. I'm going to give it my best effort and either way the experience will mean a LOT!

Life continues to keep me busy with ups and downs, but I'm doing pretty well. Keeping my head up and looking at positives. I am blessed and grateful for so many things.

I have my Liver/Abdominal MRI this Friday. I can't eat or drink 4hrs before... so that means I need to get up at 7am (can't eat or drink after 8am) to eat and brush my teeth. I won't know the results that day, but I will post a quick update on how the MRI went. I also have not gotten my 24hr Holter results yet even thought it's been almost 4 weeks, but they told me it can take up to 8 weeks for the results... so I will post when I have them. The best part of this MRI is a Heart Mom I've known online for awhile works in the MRI department that I'm going to this time around, so we will finally meet! :) And Chris is taking me out to eat after the MRI. So I'm going to make the best out of it!

That's about it for now. What kinds stuff do you want me to post about? Let me know... I could always use a topic. I wish I wrote funny posts, but maybe I need help in that area. I need to think of funny stuff.

**Oh almost forgot** Adult CHDers who had the Fontan AND CHD Parents whose child has had the Fontan, please if you have 10mins click on the link below and do this survey. The University of Michigan, Mott's Children's Hospital is doing this Anonymous research survey on anyone of any age who has had the Fontan surgery. This survey could collect great information in how to better the treatment for who, like me, have had the Fontan surgery. Thanks! Link to the survey:

Thanks so much for all the prayers and support! Sending prayers & **Heart Hugs** to all!

With Lots of Hope, Love, and Faith,

Friday, July 1, 2011

A Quick Bunched Up Update... Another MRI...

Hello Everyone!

Happy July! Woah can't believe it's already July! I will be 24 next month... where did the year go?! Geez... time slow down a little! I've been super busy still, but wanted to write a quick update... there is a bunch of stuff to quickly talk about, so I'm sorry if this update is all over the place.

I finished my first summer class on Monday! Woohoo! I did well! :)
I start my other two summer classes on Tuesday... if one wasn't busy enough, I will have two... but need to get that college degree in December. I keep telling myself only 7 more classes away from a college diploma now! :) So excited! I decided I want to be a Pediatric Social Worker or a Child Life Specialist as a career... hopefully that works out... I think I would be good at both, just have to see which one I can get. Fingers crossed! :)

Last Sunday I saw my mom's side of the family for my Grandma and
Uncle's birthday... it was so nice. I got to see my niece again! Oh my Lily (my niece) keeps growing! :) Here is a picture of here and I... not a great one as she looked away haha. Oh got a new haircut last week, so that is a good picture of my new do.

So, I tried my hand at making sem-homemade cinnamon rolls last weekend. I had dark brown sugar, cinnamon surgar, butter, and pizza dough balls... they smelled great and looked great (see below picture), but they tasted nasty haha. Not sure what I did wrong, but I'm almost certain it's the pizza dough... I've learned to never use pizza dough for cinnamon rolls... it was worth a shot though. I had fun even though it was an epic fail ha! Now, I need to think of my next food experiment haha. ;)

**Health News: So in my title I say Another MRI... let me explain the best I can. I had gotten a call 2 weeks ago about my lab/blood results. My Cardiologist's Nurse Practioner said everything looked fine, but I asked to get a copy of my results sent to me so I have a record of them (I try to get a copy of all my medical records). A few days later in the mail I get my lab/blood results and I look over it, then decide to compare with last years. My new Cardio has never seen last years as I had them done before I first met him... that's why I wanted to compare. I noticed that my Bilirubin (liver function levels) were slightly high last year, but that is Normal for most CHDers especially Single Ventricles who had the Fontan like I did... but I noticed a big jump from last year to this year, not a huge jump but almost a point higher which "can" be concerning. So I called my Cardio's Nurse Pac... we ended up playing phone tag for a few days (hate that). I finally told her my concern and wanted her to ask my Cardio what numbers should I start being concerned... the nurse said she would ask and call back in a day or two. Well, I get a phone call 2 days later by one of my Cardio's secutaries wanting to schedule my Liver MRI.... UM WHAT?! She said "Oh I'm guessing you don't know..."... Well later that day my Cardio's Nurse Prac. calls me saying sorry for scaring me and not getting to me first. My Cardiologist had went to conference about a week ago... the topic of Fontan-ers (my second open heart) and livers were brought up... that even a slight jump in Bilirubin from year to year "can" be concerning and eventually effect my heart (which is going well). So, they the increase in my Bilirubin is high enough to be concerned to get a Liver MRI as a precaution... that way if there is anything it will be caught in time before it effects my good heart function. Makes total sense. So, on July 15 at I go back to the hospital for a Liver MRI (well it's called an Abdomen MRI). I'm hoping everything is ok and this is just going to be a baseline MRI for my Liver.

Alrighty, I have a busy busy weekend and week ahead of me. I hope everyone had a safe and wonderful 4th of July weekend! Sending thoughts, prayers, and **Heart Hugs** to all!

With LOTS of Hope, Love, and Faith,