Kierstin saying hello

Hello everyone,

I have been reading this forum since last April, which is long enough to know that a little note from new members introducing themselves is appreciated. I am not really a new member as such, just a long-term lurker who has stepped out of the shadows.

I have alcoholic cirrosis with a MELD of 18. The side effects of the liver disease have been improving, my jaundice is gone, my spider agnoma have disappeared. I no longer have ascites (which was VERY severe) and my energy level is way up. I do still have vericies, and a mostly dead liver (10-15% liver function). My hernia is behaving itself, shrinking and hardly complaining at all anymore.

I have been very, very sick, hardly able to get out of bed or eat anything at all. Either I couldnt sleep or I would sleep 16 hours at a time. Every waking moment was filled with pain. But over the course of the last 7 months, I have lost 80 pounds, acites is a memory of the past, my med list has slowly gotten smaller and I hardly need Oxycodone anymore, I eat healthy and I get out and about daily. Other than tiredness when I try to overdo it and some occasional abdominal pain, I feel great.

I am currently being evaluated for a liver transplant but still have a few hoops to jump through before the evaluation can be completed.

I want to thank all the contributors to this forum, its been nice to learn about others who also suffer through this and their pitfalls and heartbreaks, but also their sucesses.

Hey Kierstin.
Welcome from me too. What name you have. What nationality are you. Your name comes from Scandinavia. We write it, Kirsten.
You have been through some problems but you are better right now, fortunately.

Do you know why you are feeling better now? Is there anything special you do or eat ?
If you do not want to talk about it is ok, but maybe you could help others by telling about your experience.

Wish you all the happiness for the future.

Thanks for your wecomes.

jft. I know the name spelled Kirsten is Scandinavian, it is my favorite name and wish we in the US would pronounce it properly, its so beautiful sounding. I speak swedish and visit Sweden every year, but I live in the US. This spelling was just a little creativity on my part, just in case the proper name Kirsten was already taken, its not my real name.

As far as doing anything special, I simply dont drink, take all my meds, lowered my salt intake dramatically and researched, asked questions, and just willed myself to be better! There is no incentive to getting better than feeling like what drops out the tail end of a dog every day and really not liking it.

One thing that really, really helped me improve was sleeping whenever I was tired, going to bed early or napping. Once I stopped worrying about what the clock said and started listening to my body, I started feeling much much better. It meant I slept through dinner a few times and would be up at 2am getting something to eat, but it really made a big difference. My theory is that we really don't have the normal energy reserves of healthy people and we need that energy and more in order to heal. I feel that sleeping anytime I was the least bit tired recharged my batteries and gave me the extra energy I needed.

My experience was a nightmare, involving inept doctors, clueless medical staff, misdiagnosis' and wrong prescriptions. My husband and I finally started refering to my doctor as Bozo, and the hospital as "the big top". Aparently reading a MRI correctly or prescribing diaretics so you dont nearly end up in the hospital with a potasium count of 2.0 was too difficult for them. Luckily as soon as I was able, I got a new doctor on my own at a different hospital who is absolutely wonderful, and knows what he is doing (how refreshing). The medical personell I see today are educated, competent and caring, the opposite of my initial experience. Sometime when I am bored I will write up the whole experience so you can all laugh and cry...

Ha det så bra! (Have a good one)

Kier

Post Edited (Kierstin) : 11/13/2009 11:27:07 AM (GMT-7)

Kierstin, I'm so glad you decided to post!  Welcome to our family!  Also good to know that you are feeling so much better.

Please do keep us posted!

Hugs,

Connie

Rick, enjoy your time with your parents and good luck with the remainder of your evaluation!  Please let us know how it goes.

Hugs,

Connie