I was diagnosed with PBC in December and finally have a reason for being so tired and my itchy palms!
Yesterday, I spent the day at a local hospital with my husband and we learned that he needs a cardiac triple bypass on Monday. It was a long day and I was totally wiped out by the time we got home, got him settled and finally sat down.
I am feeling very selfish, but trying to think through strategies for dealing with my own exhaustion while supporting him through the operation and taking care of him when he gets home (recovery is expected to be 6-10 weeks).
Welcome ideas on things to consider as we embark on this journey! Thanks so much!
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LivingEveryMoment
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So glad to hear you finally got diagnosed. It’s so important for you to be able to take care of yourself while still helping your husband through his recovery. Maybe hiring someone to help for a couple of hours every day or a family member who can relieve you while you rest and relax. My Mom, who had PBC was caring for her husband who suffered from MS. This was long term and it was not a good situation. I had to intervene and we finally made changes so they both got the care they needed. My Mom was much sicker than we thought and I’m sure the stress didn’t help. I wish your husband a speedy recovery and just remember that if you don’t take care of your health (including stress management) it’ll be hard to help anyone else. 💓
Lu11, thank you so much! Good things to think about, my family I’m sure would try to help, but I know they are busy with their own lives but maybe having some help come in might work. I’m not sure my husband will be thrilled but I do think it’s hard to explain to people how hard I’m finding it. I look fine yet the one day at the hospital when they discovered the issue… I am still wiped out by… thank you again. So glad to hear you figured it out for your mom! Appreciate the advice!
i’m so sorry to hear about everything you are dealing with. I’m not sure how old you are, but I am 47 now, I have had PBC for 13 years now and AIH for 5 years. I take care of my 83 yr old father who has 2 types of cancer and my mother who needs both hips replaced this year, had a gallbladder removed last year and still has unexplainable pain in her stomach. I also have 2 children and a bunch of other stuff. It’s a lot. I have learned to manage my schedule and set boundaries. I get plenty of rest. I schedule exercise class so I hold myself accountable and make sure I take care of my body. It’s counterintuitive but exercising gives you more energy. I have gone through a lot of different phases with both. In the very beginning, I couldn’t tell I had anything. It started going downhill a couple of years before I was actually diagnosed with AIH. I think I had it much earlier than when I was finally diagnosed. I had had a really bad experience with my first liver biopsy and was hesitant to do another one. I wish I would’ve done it sooner because I probably damaged my liver and created a lot of other symptoms. I used to have itching so bad I would be bruised head to toe and my fatigue was terrible. All I can say is just hang in there. You’re not alone. Everybody’s journey is different and you may go through a lot of ups and downs but hang in there. Educate yourself and be an advocate for yourself. Don’t be afraid to try new things despite what your doctor tells you. My doctor only wants to raise or lower medication or add or take away medication. I have had to do so much research and try new things on my own to try and improve my health. And don’t feel guilty. I know exactly how you feel. It’s OK to be selfish. Wishing you all the best!
danaLL, thank you so much, you helped me put everything in perspective… I am 67 no longer have any of the other responsibilities you describe as I lost my mom and dad in 2015 and 2016… I’m not sure when this actually started but have always been able to push through any of the challenges I have had in my life but now when people say self manage I find that confusing, I wake up tired and go to sleep tired but until Friday I had no idea what dead tired really meant… and I couldn’t figure out how to know before it got to that point. I will try exercise I read somewhere that exercise helped, but my husband has been so protective, saying why would you ever exercise when you are tired and I have also had a fair amount of pain… but I’ll give it a try. Thank you again, you have certainly helped me realize I’m not alone and I can figure this out. My best to you and your family on your journey!
feel free to reach out anytime. I don’t read every post in the support group, but it has certainly been helpful with information. And having been going through this for quite some time, I’ve learned a lot along the way. One of the things that could be incredibly helpful that I do on a regular basis is IV vitamin infusions. I’m not sure where you live, but they are very common in the United States. You can get almost any concoction and your body absorb vitamins and minerals much better and IV form and it does not impact your liver. One of the ingredients I have started using is alpha lipoic acid. I’m not sure if that’s the exact spelling, but there is a particular doctor in New Mexico, who often treats liver patients with this. It is supposed to help regenerate the liver. Another good one that really helps is glutathione. As we get older body naturally stops making as much of these 2 things we really need. I stopped all supplements outside of these IV treatments. My doctor was concerned I may be experiencing toxicity of the liver from supplements. Anyways, like I said, hang in there it’s a marathon, not a sprint. You learn a lot every day and once you learn what works for you I’m positive your quality of life will improve. And I hope your husband gets better soon!
Just curious, which supplements did your doctor think were damaging? Were there specific tests they used to come to this conclusion? Also what effects did you feel from alpha lipoid acid and glutathione? Were they introduced separately? Did your doctor order the IV infusions? I know that’s a lot of questions, so sorry but thanks!
no problem at all. The more we share the more we hopefully learn and help each other. I do different IV treatments as I want the benefits of absorption of vitamins and minerals that my liver does not break spas well. Read it is the best way to get the most benefit out of supplements basically. All I know is that glutathione and alpha lipoid acid are things your body stop making myself as you get older. At least with glutathione. I have only done the alpha lipoic acid once and a drip, but I plan on starting to get shots three days a week. I was going to do it for two weeks and then go re-test my liver levels. If it helps regenerate your liver, theoretically I guess I would not know the actual results unless I did another biopsy or some kind of fibroscan to stage the progression. First the drops they just are relaxing. Sometimes they can be detoxing and make you feel fatigued, or cold. I have not done enough of the alpha lipoic acid. Do you have any feedback on how it’s going to make me feel but I plan on starting these treatments and a few weeks when I return from vacation and I will let you know. I’m not sure if there were any supplements in particular that were toxic. All I know is that if you take a lot they can cause toxicity of the liver because everything goes through your liver that you ingest into your body. I stopped, taking them when I had Covid and I was hospitalized and could not bring my own medication. I just never restarted any of them. I was probably on four of five different supplements. All I know is that my blood levels got significantly better, and have been normal for quite some time after stopping supplements. I always try to change one thing at a time so I know what is driving my labs up or down. I can’t say for sure, or not whether supplements were causing any toxicity, but sometimes less is more. I am just open to trying different things because I’m so tired of being on prescription medication. I think one of the things that has helped the most is I found an acupuncturist who specializes in gastro. She’s phenomenal. After the first day I saw her my labs were normal for the first time in years. I can be a full-time job to research and keep up with your health when you have different auto immune disorders. But when you find good solutions, it makes it worthwhile. Sometimes I feel like half the battle is mental. But so long as it’s not for a long period of time I just try as many different things as I can to see if some thing is helpful or not. I hope this helps!
hi I got diagnosed PBC in 2020 with not much info, I’ve had 3 blood results and 1 fibroscan. The fibroscan shows F4 so this scares me as google has been a bad research for me(as some said 5 years life expectancy)
My bilirubin has come down slightly but still high and so is the Alp but come down a lot. I’ve got my next appointment next week for bloods and consultation with specialist. All in all I feel fine, I work from home but do walk with dog twice a day and trying to slowly change my diet.
It’s great to hear that people have had this condition for years and are managing it. Only groups I’ve joined is this one and PBC Foundation
hi - you do have a lot going on! Make time for yourself, you willl need it to keep you stamina, and to fight the fatigue. I hope you can get someone to help with your husbands care, at least a couple of hours a day.
I still work full time, was diagnosed 2 years ago. I feel better when I excercise. I walk 2.5 miles minimum 5 days a week. And try to do 4 miles or so on weekends. I am blessed with a walking buddy, my neighbor, we motivate each other.
Do take care of yourself!!! hope your husband has a speedy recovery!
thank you so much 21parker… you are motivating to get walking again… I too work full time and have been thinking it may be time to retire but would rather do that when I’m really ready not in reaction to something…love the buddy idea will have to see if I can come up with somebody…thank you for your support!
Sounds like something you should be looking to family/friends, or insurance for, for extra help if possible. This is major surgery and it sounds like you don’t have the energy to be reliable support. Reach out.
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