Hello Everyone.
As most of you know, my husband Chris and I traveled from Northern California to Atlanta, GA this past week to meet my new Cardiologist. We researched a LOT in trying to pick a new Cardiologist who is one of the best in single ventricle Fontan patients of all ages, but especially single ventricle Adults. All the reseach led us to Atlanta to a man who has almost 30 years of dealing with single ventricle Fontan patients of all ages... he is one of the best and is one of the few that know about the liver issues ALL Fontan-ers can get (He said it does not matter what Fontan you have). He said in about 5yrs that all Pedatric and Adult CHD Cardiologists SHOULD know about these Liver issues. My new Cardiologist is not just an Adult CHD Cardiologist, but he is also a Pediatric Cardiologist, and his interest of research is Fontan patients, so he has a LOT of knownledge.
After saying all that, I will now move on to how my appointment went. It was on Wednesday (April 25), I got there and filled out papers. I was then taken back for an echocardiogram and a EKG... than Chris and I waited in a room to wait for the doctor. He came in and was super nice... awesome bedside manners... even asked if we were going to see any sights and talked about this favorites in the city. :) He also knows my first cardiologist I had for 22yrs very well... not only have they trained together, but are still in contact by phone and e-mail as well as goes out to dinner during pediatric cardiologist conferences. :) I was SO happy to hear that!
He started off by drawing a picture of MY heart based off my surgical records which I have never seen someone do for me before... it was pretty cool... def a picture I'm keeping. He said based on all the records he has and this echo.. my plans for the future depended first upon my liver. Since my liver damage is mild and with me having pretty good function, but not great he HIGHLY suggests the Fontan Revision. This is why: Because I have pretty good heart function and mild liver issues, yet I HAVE been going slowly downhill over the years especially the past 5 or so than I will benefit from the surgery AND the mortality rate for ME would be 1-2%. The Pros of this surgery: It would give me better quality of life for a longer period of time... about 10-15yrs AND it would take some pressure of my liver, slowing the damage a bit. He said ALL Fontans cause liver damage BUT the new verisions do not put as much pressure on the liver as the older verisions like me... so what takes my verision like 20-30yrs to cause a lot of liver damage take the newer verisions about 30-40yrs in most cases (those were JUST EXAMPLE numbers)... obviously ALL CHDers & Fontaners ARE DIFFERENT, BUT this is based on research and the average. Based on research and what they know SO FAR, the Liver can a big issue as the heart as the liver is killing more of us than our heart... so liver "can" be the first to go.
Now, he told me those who have severe livers do not have any other option other than Heart and Liver transplant. Right now I have a window of oppurtunity meaning: I'm doing well, I'm a low risk surgery and it has the most benefit for me. If I wait like 5yrs I may not be as in good of shape and the mortality rate goes up... and waiting longer than that my window will close and transplant is the only option. I could go down hill at the same rate meaning I could have 5 more years and still have this window, but he said CHDers can change at any time and NOTHING is gaurenteed for us... so take it while I have this change to keep living for a longer period.
He told me with as good as shape I'm in which isn't even good good or great, having this surgery could also mean my liver stays more mild longer meaning IF IF I ever need a transplant it would only be a Heart and not Heart and Liver.
SO the plan for me: I'll be having the Fontan Revision next year... this will be my 3rd open heart surgery. I will have a heart catherization and Cardiac MRI a week before. The hospital stay is 7-10days and about an overall 2month recovery. Now, my beta blocker has been changed now which will help better control my heart rate issues than the one I was on for 7yrs. This next year and half will be tough on me emotionally and I don't want sympathy... I need love, support, and understanding... as well as prayers and positive vibes. I won't be on Facebook as often but I WILL STILL be here for ALL of you!! I WILL get through this and I PLAN on living till 80!! This is NOT a BAD thing as this will make me even healthier and by ME time for technology AND maybe NEVER needing a transplant!! This will also be hard on Chris. And money wise will be extremely hard as well. But we WILL make it!!
This has been a lot to take in, but I'm doing OK right now... I'll have good and bad days. But in the end I'm looking forward to being able to have more better years which considering I'm not doing horrible right now, I can't imagine the more energy I will have. Any tips or words of encouragment is well... tips about what to bring, what helped, etc. I know you guys will behind me all the way and I can't thank you ALL my amazing CHD community enough for ALL the love, support, hugs, prayers, well wishes, and sweet words.... it ALL means SO SO much to me!!
***IMPORTANT FONTAN LIVER INFORMATION: This is only about 5yrs old and research is ongoing... most Cardiologists do NOT know about this YET, but in about 5yrs they SHOULD!! PLEASE READ and Pass on!!
-The Liver damage ALL Fontan patients can develop is call Cirrosis of the Liver and this damage also puts us at a higher risk of a certain kind of Liver Cancer.
-The damage comes from the Fontan pressures and Vena Cava pressures which ALL Fontan verisions do, but the new ones not as bad.
-It is important that around age 12-13yrs old ALL Fontan patients should be seen by a Liver doctor with some Fontan knowledge.... starting at that age our Livers SHOULD be monitored EVERY year with a Liver MRI or Liver CT scan AND a full pannel blood work up... as we get into out mid 20s it SHOULD be EVERY 6months... I will now be getting a Liver MRI EVERY 6 months as well as blood work up to makes sure they keep a CLOSE eye on everything and could catch things early if possible.
-There is nothing PROVEN to help with the damage because it's mainly the Fontan pressures BUT anything that says "can" help the Liver is totally up to you as you never know.
-As we get older ALL Fontan patients Should watch their salt/sodium and protein intake as too much for each can put unneeded stress/pressure on the Liver.
-Drinking a lot of water and keeping as active as we can are also important.
**If you never heard any of this ASK your/your child's cardiologist AND do some research if you can... knowing information on our Liver and keeping a CLOSE eye on it could save our life one day** I'm JUST sharing what I've learned which I feel is EXTREMELY important information**
