Hawaii and high liver enzymes

[smurn]

Hi all! 2 questions.

First, My husband just got orders to honolulu, hi. Does anyone go to this CF center? If so, do they have a good reputation? Do they have a good GI doctor?

second, our four year old has elevated liver enzymes and they put her on actigall. I'm not sure why her enzymes were high and We have to bring her for an ultrasound and more bloodwork, as well as see a GI doc. What could make her enzymes high? Has anyone had this happen before? Is she going to be on actigall forever? All our docs say is not to worry about it.

 

[Ratatosk]

DS was put on actigall when he was a month old. They figured his liver enzymes at the time were elevated due to being on TPN (nutritional feeding) while in the hospital. He's been on it ever since. Liver levels have been fine. Doctor did mention keeping him on it to keep his gallbladder happy and that when he's a teen they'll probably start doing ultrasounds to monitor that.

Years ago there was a young man on this site who talked about the CF Center in Hawaii and was happy with the care he received and there was someone I knew on facebook whose husband got orders to go there from Minot. Guess you'll have to check the CFF site -- maybe contact the local cff chapter and see if anyone there has comments.

 

[Jet]

My liver enzymes have been elevated for at least 20 years. I couldn't tolerate actigall so I'm not taking anything for it. Even though they've been elevated they stabilized and now we just watch it. I get a liver ultrasound every couple of years.

 

[lildenny]

We are in Hawaii now CF team is headed up by a Dr. Jane Gross at Tripler hospital. The team is excellent. My son has been in their care for 3 years now. As I would tell anyone you are your child's greatest advocate! They are a teaching hospital so there are many med students and resident docs so be prepared to deal with that. I can tell you more maybe through messaging or email. I can also tell the team on Friday if you want and get contact info to you and set you up with Michelle the social worker. If you would like? One thing about Hawaii is their high rate of MRSA because its tropical here but you are surrounded by salt water which is great! If I can help in any way I will be happy to!

 

[azmaveth]

I was an active duty Marine and got care at Tripler AMC. The team there is awesome. My experience suggests that it is the best part of the hospital, actually. With the other departments, you might actually be better served finding a local civilian practitioner. But Dr Gross and the rest of the "Mucus Mob" are really great and know how to work together as a team. If you are here in May, I might see you at the Great Strides walk! There are also CF Surf Days sponsored by the Mauli Ola Foundation (www.mauliola.org) where they bring in pro surfers to give free surfing lessons. I hope your PCS goes smoothly!

 

[smurn]

Thanks everyone for responding! I love the "Mucus Mob" moniker, very cute! I saw some stuff about the surfing lessons. I hadn't heard about the MRSA, but the docs here did say the air would be great for them. My kids have cultured MRSA on and off for some time, it seems like it's everywhere.