About

I’ve named this blog in honor of my mother who never hesitates to declare herself. If she announces an intention to “have a little talk” with someone, you know that the listener will have no doubts remaining about her opinion. As my daughter notes, it is always entertaining to hear Granny report that she has had a little talk with someone, but it isn’t so much fun if Granny has a little talk with you!

Ask me what you’d like to know about me that my posts don’t reveal.

13 thoughts on “About

  1. First, I’d get a hepatologist rather than a GI. Go to a major medical center and teaching hospital because the faculty doctors, who are also practicing doctors, are most up on things.

    The TIPS put an end to my esophageal bleeds, but I have never had ascites and know little about it.

    There is something called a MELD score which determines how badly off you are for sake of transplanting. It is based on bloodwork and not symptoms.

    In spite of having had 13 bleeds before the TIPS, I have a very low MELD for someone who has had liver disease as long as I have — I’m far away from being considered for a transplant.

    Non-alcoholic reasons for cirrhosis include auto-immune, like my PBC. Another one is Auto-immune hepatitis.

    It seems really odd all this should happen so quickly.

    I have some posts about TIPS. I haven’t updated in months so these are only 3 or 4 posts down from homepage.

    Get a hepatologist, even if it means going to Jackson in Miami. A GI has some training in liver disease, but they aren’t liver specialists.

    Go to a hepatologist. Determine cause. Ask about MELD.

    Best wishes to you both.

  2. It is out of pure frustration to understand what is happening to my husband’s health. I am grateful to have found your blog. I hope you are still doing well since your TIPS. My husband fell off of a 16ft ladder and being Irish and bruised badly all over still didn’t want to waste $ on Dr. As the evening went on he began to vomit. Couldn’t hold anything down. Refused to go to ER. By morning it continued. I asked if he was vomiting blood. He said no. Soon he was in huge amounts of bright red. Off to ER we go. Once in the upchuck of blood continued They call in the GI and gave him something to stop the nausea to stop the upchucking which worked well. They put him into ICU and gave him two pints of blood as his level was very low. During the night they removed fluid from his ab. Did an Endoscopy which told his esophageal varicies were bleeding and they needed to band them. They did all that and two days later removed another 2 ltrs of fluid from his ab. By the 7th day they released him and we have followed up w a GI who tolds us he needs a liver transplant bc he has cirrhosis. Easier said than done as we have Obamacare so a transplant is not affordable. Today the GI told us he wants Michael to have the TIPS procedure as the ascites is constant. This left me in search of info of personal stories from those who have had it. I thank you for sharing. I am so full of questions as I wonder what will this be like for him and is there a difference between cause and reaction to the TIPS procedure. Right now my husband is terribly lethargic, weak and always cold. He is on iron, Vitamin B1,6 and 12 plus nardolol and a few other scripts. He is a private man but I see that he is very depressed. Any info or connections you have with people who may have
    with anyone who has had the TIPS procedure for Cirrohsis of the liver and portal hypotension would be appreciated. Will it make his life better again>? Will he have energy, not be cold? We live in south Florida and he is always cold now and tired. Doesn’t sleep well and the Dr says he can’t be on any sleep scripts or they won’t do the TIPS and if we get to a transplant U cannot be on any prescriptions that can be seen as possibly addicting. Can u believe that? Any and all who have info to share with me would be greatly appreciated. Slainte’ to all.
    Sheila

  3. Yes I was very afraid of the encephalopathy. I havent noticed any symptoms yet. I have noticed im hot all the time now and before I was always freezing probably from the anemia. Did they give you zifaxin ? The drug for encephalopathy. I do have a hernia now and wonder if it was because of all the hypertension eating the inner lining of my stomach and making it weak. It never ends ya know haha

  4. I need to update my blog. It took about 8-9 weeks to feel close to OK after the TIPS, but I had also lost my mother and had a bout of hepatic encephalopathy. It has been close to a year since I have had a bleed, so TIPS is working. Now, however, my ankles and hands are swelling. More to come…

  5. Ive been exploring your blog for a while now “cant sleep ” and realized ive been through everything you have…about 7 G.I bleeds for me , 4 transfusions , the iron infusions, the banding varacies . Got to the point they reached my lower abdomen and couldn’t stop the bleeding so was forced to get tips. Ive also had my stomach drained from the acites. You should email me and we can swap stories.

  6. My name is shannon. I had the tips procedure done 2 weeks ago. Im 25 years old. I havent met anyone going through this im finding comfort in reading your story and knowing im not the only one. I had to have my procedure done 2 days before my best friends wedding while across the country. I felt pain after mine too. Have you had an complications after or noticed anything different?

  7. Thank you so much. I look forward to your take on things. It’s unusual to be diagnosed at your age, isn’t it? I hope that means you are in very early stages.

  8. Hi there,
    I was diagnosed with PBC and Autoimmune Hepatitis a week before my 21st birthday (ironic isn’t it? Spent my 21st birthday as the DD drinking water all night!). I was and still continue to have a hard time with this diagnosis being so young. I worry that I’ll need a transplant around the time I’ll want to get married and have kids, and I’m unsure how my disease will progress and take over my life because of my age. The best way I am learning to handle this is to find the humor in it. I have created a blog poking fun at the inadequacies of our immune systems, with the goal of raising awareness and understanding through humor and laughter. I would love if you would check it out and maybe give me some advice regarding PBC posts or things you’d want to see as a PBCer yourself.
    Your blog has been a huge help to me. I really appreciate what you write and that you take the time to share your stories.
    Wishing you all the best.
    https://kmadsblog.wordpress.com

  9. Thanks for your response for Drs in the Huntsville area. Its a frightening thought to move to a new area and the need to find new doctors, esp for a disease that is not very common. Someone else in the Huntsville area responded to me on the PBC.org website, and she also mentioned Dr. Vankineni. We will be moving soon (next month), and I will try to get appts soon afterwards and bring my records, etc. Do you know of any PBC patients in the area that meet occasionally..would you be interested? Thanks again for the information.

  10. There are no hepatologists in Huntsville. I urge you instead to go to the Kirklin Clinic, University of Alabama in Birmingham. It is less than a two-hour drive. If that is not possible, there are two gastroenterologists with some knowledge of PBC: Dr. Dino Ferrante and Dr. Prasad Vankineni.
    Best wishes.

  11. Im 57 and was diagnosed 7 yrs ago. Have enlarged spleen and low platelet levels due to PBC. Am relocating to the Huntsville/Madison Al area and am looking for specialists that treat and are knowledgeable in regards to PBC

  12. I’m 36 and waiting confirmation of a diagnosis for PBC. What is the life expectancy, typically (with treatment)? I’ve tried to find out this information but the answers (on the internet) are usually vague or misleading (based on outdated data). I have been on a waiting list to see a PBC specialist for months now (about 4).

  13. Hi,
    I was recently dx with pbc in Oct-I am going in for my liver biopsy this Thursday. I am 41 years ol-2 kids 12 and 7. Went on the PBCers website and found some people living over 20 years with this and still doing ok. Sorry to hear about your Dad. My Mom passed last June from lung cancer @ 61 years young.
    Hope to hear from you soon
    Dar

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