I have noticed my appetite has dropped noticeably, and am considering altering how I eat.
Instead of three main meals a day, I am thinking about having light snacks throughout the day.
Has anyone else tried this, and if you did, how did it work for you or is it still working for you?
Any thoughts or tips would be appreciated.
Jeff
With diminished appetite, frequent small snacks throughout the day work far better than 3 square meals. For the past 6 mths, often mid or late afternoon, a sudden loss of appetite descends on me for a few hrs, feel kind of off, sometimes with a pall of heavy fatigue. I'll just eat a bird portion of supper, then some more later, then fruit and other snacks. Some days I eat normally, but the others... frequent small snacks the only way to ingest a decent amt of food.
Small meals and multiple meals. At the same time, stock tons of Boost drinks or similar ones . I filled them in half of my food pantry. You will need this when you feel you couldn't eat enough due to low appetite.
And try to relax. Appetite is quite subjective.
For the last few weeks, I have tried a mid-morning snack during the week, a smaller lunch, and two or so snacks during the afternoon. In the evenings, I have very little appetite but I like having had those snacks in the afternoon.
My wife is getting on to me about drinking an Ensure every day. I succeed most days in following her advice.
Over the last 10 years, I have become pretty sensitive to what my body is telling me, and doing what it tells me to do. With this diminished appetite, I am going to have to eat when it tells me it is not hungry. That will take some getting used to.
Jeff,
The worse my liver condition occurred the less I wanted to eat. Just the smell or thought of food made me nauseous. I have read that several meals a day is a good idea as that also helps with keeping your stomach from being so upset. As you know, the less your bile flows the more problems you are going to have with food running right through your system. I'll tell you though that after you get your liver transplant one day maybe, you will find that you can't eat enough especially being on prednisone. They do reduce your dosage of prednisone but due to the PSC, most transplant hepatologist keep you on at least 5 MG the rest of your life as it helps to prevent the PSC from recurring.
Mark
Mark - what was the prednisone dosage post transplant and how is it being tapered?
Hello Alix. When I first came out of surgery they had me on almost 200 mg of prednisone by IV, but by the time I was discharged 6 days later they had switched to pills and I was taking 20 mg a day. Every two weeks after that they would taper down 1/2 a pill. So I went from 20 mg to 17-1/2 mg then two weeks later to 15 mg and so on. That continued until I was down to 5 mg. They told me that although most transplant recipients are tapered all the way down to zero prednisone that with PSC patients they would keep me at at least 5 mg the rest of my life. They have found that this greatly reduces the chances that PSC will recur. In my case however they just raised it back up to 10 mg as they needed to take me off of the 2000 mg of Cellcept per day that I was on for one of my anti-rejection drugs as it had caused some ulcers in my ilium which they found in a recent colonoscopy. So for now I'm on 3 MG of Prograf twice a day and 10 mg of Prednisone a day. I am taking 5 mg in the morning and 5 at night on the Prednisone.
Mark
Thanks for the info. I've heard Cellcept can be brutal.
Only 6 days in hospital? Pretty short stay for such a huge surgery. Good to know!
Alix,
The reason my surgeon released me so soon was that he said the risk of infection was very great for a transplant patient and the sooner he got me out of there the better with my immune system now suppressed. I did have to stay at a hotel less than 10 minutes from the hospital just in case something went wrong. We stayed in the hotel for another 2-1/2 weeks before being released to go home. We went to the hospital clinic two days a week during that time for labs and clinic visit with the surgeon. We were fortunate to find a Residence Inn that had just opened up brand new 3 days before my transplant so the room we stayed had never been occupied before so we had less worries over germs. I wish you well in your own journey with PSC.
Mark
PSC 2011 / Liver-Transplant 2015
Alix said:
Thanks for the info. I've heard Cellcept can be brutal.
Only 6 days in hospital? Pretty short stay for such a huge surgery. Good to know!
Very wise of your surgeon. Great that the accommodations in close proximity to hospital worked out so well, especially the not as yet occupied room!
I spent 2 wks in hospital in August and was not at all impressed with the level of cleanliness, frankly was pretty grossed out. I'm immunosuppressed so was very, very careful to avoid contact with all surfaces - floors, walls, door handles, shared bathroom in particular.. and washed my hands A LOT.
Jeff,
I was just reading over this post from December again regarding your appetite. How have you been doing with it lately? I believe your game plan of small meals throughout the day instead of 3 large ones is a very good plan. I've been told that from several nutritionists at the transplant center. How is your weight doing? Have you lost a lot? Be sure and try to keep the protein intake up as much as you can. You want to be as strong as you can when you get to where you need a transplant. Take care.
Mark
Hi, Mark. When I had my 3 month check up two weeks ago, I was down to 172, and my wife said my face looked a bit gaunt.
I still have to force myself to eat in the evenings, and I think that trying to spread out snacks throughout the day helps overall, but may contribute to the lack of appetite in the evenings.
On some evenings, it is just a powerbar and an Ensure. A bit too much sugar for sure, but decent nutrition.
Jeff,
I'm sorry to hear you are having more and more difficulty. Sounds like the PSC is progressing pretty rapidly now. I hope not, but it sounds like it. What are your current LFT's looking like? MELD?
Have you been listed for transplant yet, if not, are you considering doing that this year?
So sorry to hear you are having more problems. I'll be praying for you.
Mark
Mark,
I hope the progression is not too quick. There are some good things in my favor. Bloodwork two weeks ago showed not much change from November, although the alp was higher. The meld score (old way) was 7, same as November. With the new way-sodium included, it was a 5. I thought the best score was a 6? But I'll take it!!
There are a lot of other symptoms that are possible with psc, so in the immortal words of Marty Feldman in Young Frankenstein, it could be worse. I can at least work with a reduced appetite, some fatigue and slight to moderate itching.
Last March, I was listed at Piedmont Hospital in Atlanta with a meld score of 18 following a cholangitis attack. Since then, no worries there. My meld score has since dropped considerably, and I wonder how long I will stay listed before they consider me stable enough to be "unlisted'. I should have my yearly mrcp next month, so we'll see.
All things considered, I am in good shape. As I know it could be worse and at some point-will be, I am thankful and not complaining (too much).
Jeff
fcmmark said:
Jeff,
I'm sorry to hear you are having more and more difficulty. Sounds like the PSC is progressing pretty rapidly now. I hope not, but it sounds like it. What are your current LFT's looking like? MELD?
Have you been listed for transplant yet, if not, are you considering doing that this year?
So sorry to hear you are having more problems. I'll be praying for you.
Mark