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Posted 6/13/2014 7:59 AM (GMT 0)
Hi all, I did post the other night ,and as you all know HE has been with me quite often. I went for my yearly health exams to Mayo Clinic in Scottsdale . Every thing went well but he told me I should try and go off the lorazepam because it is addictive . then he turns around an hands me a prescription for something just as dangerous . rolleyes cyclobenzaprine . Then the following week I went to see the acupuncture, mostly for my granddaughter she wanted to have the experience , her shoulder was messed up from all of her sports activities. When the Dr.,s saw me the following day they were stunned . You know I feel like a train wreck in slow motion.
I also went to get my knee injection, it feels so much better now. The cyropractor told me not to take any of my meds. smhair I have been on ESLD with cirrhosis for 10 years with chances of 48hours to 5 years.I shall finish with my question every one that has checked my pulse is excessively low a problem . No one has an answer for me.
lavendar shocked
Posted 6/13/2014 1:41 PM (GMT 0)
lavender,
Please check in with us. I am concerned. Big Hugs, themiz
Posted 6/13/2014 2:44 PM (GMT 0)
Lavender, reading your posts and wondering what your hepatologist said about the chiropractor telling you to not take any meds. This would be something I would have to report to my liver dr. Let me know what's up. Also living with HE. Look forward to your posts.

. music 👱
Posted 6/13/2014 9:16 PM (GMT 0)
At this point, I would recommend doing what your Hep Doc tells you to do. But you have to be true to your own heart. Chiropractic often relies heavily on integrated medical care...both East and West...with a focus on nutrition and often includes various supplements that the docs sell. Once Mike was under the care of a Hep, they didn't want him taking any OTC meds that they did not control. Things have a way of mixing together to cause problems. Do does take a multivitamin, and some magnesiu, but the doc tells him which brand meets the FDA standards.

Hugs, ML
Posted 7/1/2014 6:15 AM (GMT 0)
When I first went to mayo .I had all kind of Dr.'s. Then when they could not give a diagnosis the hepatalogist, after asking what type of diet I should have. Have big steak. well I was on my No red meat ,lots of vegetables and fruit. Thanks to all of your advise.
Lavendar
I have lived well beyond my expectations. but I never changed anthing.
Posted 7/1/2014 7:00 PM (GMT 0)
Lavender, so good to hear from you. Your life is very important. We all go through really down times, based on multiple things. Prayer and now intense counseling with an incredible experienced therapist is helping me although it is tough...on me...and on her. Counseling an option? I had never tried it before..LCSW.
music 👱
Posted 7/2/2014 8:03 PM (GMT 0)
Hi Lavendar

Please keep us updated on your progress. It's a tough road to go alone. All the best!

Hugs
Posted 8/10/2014 7:25 AM (GMT 0)
The road seems longer when you are alone. My husband has had to spend days with his mom who now has alzhymers. They live in another community about an hour away. I seem to get worse when I am not in my comfort zone, so I choose to stay by myself a lot of time and for me it is very lonely. My back pain has been so intense today I can hardly breath; and my knee is so bad I finally put on the uncomfortable brace. I am afraid to take meds because they seem to affect my encepalapathy and that is very scary. Some times I loose entire days lost.
Posted 8/10/2014 4:23 PM (GMT 0)
Glad to see you posting.. deep breaths.. one day at a time!!

Sandia
Posted 8/11/2014 12:22 AM (GMT 0)
Hi lavender, so happy to hear from you...have you told your hepatologist re lost days..at one point I had to increase lactulose to 160 MLS a day plus xifaxan 2 times a day and i live alone all the time. i did have an ins case mgr assigned for awhile who helped on many occasions when i had forgotten meds. I had to reach out and see what support was available..friends, neighbors, med, therapy, and get whatever was needed to get past some harder times. you are part of us and important to us all. Pls stay in touch😊

music👱
Posted 8/12/2014 6:52 AM (GMT 0)
Thank you all for all your very helpful posts. I ended up in the hospital about 10 days ago, with HE. I have no idea how I got there and that was two days later when the nurses were giving me lactulose. All they did was load me up with lactulose and my regular meds. If there were just someone to remind me on a daily basis to take my meds.
My hepatolagist is in Arizona . Since I was taken off the list 5 years ago I don't have one. I used to have about 6 Dr.'s every time I went to Mayo now we have to travel about 600mi. for my visits and I only visit with my lead team Dr..
When I entered the hospital this last time my ammonia level was 87. I asked to have it checked again 5days later and it had dropped to 23. Even at 23 I still feel a bit light headed could be my chronic sinusitis.
Posted 8/12/2014 9:32 AM (GMT 0)
Hi lavender.

Sorry to hear about your abrupt hospital stay, very rude disease this ESLD is sometimes. Being on your own (your husband's traveling to help mother?) certainly has it's hazards. I'm single myself and I routinely make contacts with friends or family specifically for this reason. And I may decrease my contact time intervals as the need requires. Not sure if this would work for you but it's what I've come up with for the - being single with possible HE issues - situation.

On another note, are you still in limbo on what caused your ESLD in the first place? From a previous note I saw: "Yet the mayo clinic. has no idea what to call it possible chronic hepatitis". Was a biopsy done at some point over the years? I know that the etiology of many particular liver diseases can be "washed out" by the cirrhosis as the fibrosis sets in with it's very advanced/thickened septal bands, destroyed architecture and diffused/dissipating inflammation. Kinda like a jigsaw puzzle with the ink washed away ... not very easy to figure out.
Posted 8/14/2014 9:00 PM (GMT 0)
the hepatolagist last called it chronic hepatitis. I did have hepatitis A as a child . It seems every time my immune system drops and brings on the hepatitis . Last report at mayo was still on cryptogenic (unknown).
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