Biking to improve possible PBC!

Good Morning all from Slaines!

As most of you are aware I'm under medical investigation for PBC which my lovely liver nursing specialist Charlotte Owen from the Royal Shrewsbury Hospital and my GP have indicated I may have based on my last 6 months of blood tests and on going symptoms! On the 23rd of this month - January I under go a fibroscan. On the 19th of March I see the liver consultant for the increased numerous amount of blood tests and scan! Charlotte mentioned something about an MRI of my bile duct as previous CT Scans highlighted nothing other than small growths in both lungs and cysts in both kidneys!

Anyway before Christmas I went on holiday and of course got into eating more food than normal and gained 2 lbs. This I lost On my return home. However I got onto the habit of eating three meals a day I stead of two and gained weight! Half a stone and since then my symptoms have increased.

Before my hols I was biking daily and lost a stone and half far my quickly and felt an improvement in my health!

Yesterday I started back at the gym and biked for an hour and 40 minutes then moved onto the treadmill for a further 20!

I'm presently at the gym as I'm writing this note so apologies for any errors whilst my feet are peddling away. So far I've been biking for 1 hour and 4 minutes and a numb BUM ...... lol.

Oh well my friends this is my second note as I lost my first by accidentally hitting the wrong button which made me swear under my breath ..

Well folks this is all from me as I.must get drinking more of that cool stuff WATER!,

Take care all

Love from Crazy Slaines

..

.

[alfredthegreat]

Hi Slaines. You're doing brilliantly with the exercise. Not sure about going down to 2 meals a day though. I was told by the dietitian at Addenbrookes that I should eat little and often (six small meals a day if possible) because a poorly liver can only store energy for 2 hours and then the body starts drawing energy from muscle, apparently it's easier for the body to draw energy from muscle rather than from fat. Also I was told to increase my protein as this would be used by the body for energy and help stop muscle wastage. Suppertime needs to include lots of protein as through the night is the longest period between meals. Have you seen a dietitian at all? Regards Alf

[Hidden in reply to alfredthegreat]

Dear Alf

Many thanks for food intake advice for my liver! I will see if I can adjust to 6 smaller meals but I'm not sure how this will work out around my life style and both myself and hubby only like to eat twice a day which are not huge meals! Brunch and evening small meal.However we did go off the rails at Christmas and eat in between meals which kicked off my liver having a wobble! Naughty I know.....

Cheers again Alf

Regards Slaines

[alfredthegreat in reply to Hidden]

It would be a good idea if you could speak to a dietitian about it. They might have better answers to suit your lifestyle. I didn't know any of this up until speaking to a dietitian at transplant assessment. I had 2 cancerous tumours in my liver (for these I had 2 sessions of TACE which shrunk them and held them stable) as well as NASH. I was focusing on the cancer and what to eat and what not to eat re my cancer. Whilst I was doing that and eating very healthily my muscles were wasting because I was not eating enough carbohydrate and nothing like enough protein. Alf

[Hidden in reply to alfredthegreat]

Hi Alf

As your all aware I'm in the early stages of being diagnosed so I'm presuming that I won't be able to see a dietition for advice until my

all of my tests have been carried out and I'm diagnosed either with PBC or whatever! My doctor has said to carry on keeping fit but not to over do it, and to keep up with the healthy eating when I saw him last! No diet given ! I did try to track down a diet guideline for possible PBC off the web but to be honest I wasn't really sucessfuI in tracking one down. I do eat lots of protein and I do try my best not to eat to many carbs as I gain weight !

My reason for all the biking is because I went through early menopause at the age of 40 causing concern that I'm more likely to get brittle bones! I do try my best to keep my bones as strong as possible and eating healthy is part of that too! However I"m trying my best to loose more weight.

Nighty nite all

Slaines

[alfredthegreat in reply to Hidden]

Will see if I can throw up any info on that via research. Night Slaines.

[Hidden in reply to alfredthegreat]

Cheers Alf !

[Hidden in reply to alfredthegreat]

Good Morning Alf

I've decided to ask you anitger question which you maybe able to answer! You mentioned muscels wastage and eating heathly!

This morning I woke with horrid aching pains in my arms and legs, the aches in my legs you coukd put down to the bking but the pains in my arms ??????? . Your comment about muscel wastage made bells ring in my head. Could I actually be causing more damage to myself at present by over exercising???? Maybe I should definitely reduce my biking down to half an hour until I see the consultant in March??? I just wish I could speak to someone for advice on this point!!!! My skin is also itchy again at night and I'm nit feelibg my normal 100 per cent.

Thanks Alf for earlier note

Slaines

[alfredthegreat in reply to Hidden]

Hi Slaines. I think that maybe it's a good idea about cutting down on the biking. Even down to half an hour a day is probably more exercise than an average healthy person would do. I think that your muscle pain is more than likely due to the amount of biking. Although you say that it your arm muscles shouldn't give you pain through biking, you are probably using your arms in a way that is different to the norm and your body posture will be different while biking. You are doing very well to exercise but don't overdo it! I looked at diet for PBC and it's the usual healthy kind of diet but I would say check on the grams of protein in the food that you are eating because if you are not eating a lot in quantity then I know that from my own experience through my illness that you have to eat an amazing amount of the product with protein in to be actually consuming the amount of protein required by your body when the liver is not working properly. I had to (or in reality wife did) look for high protein foods. There are Greek yogurts with high protein in sold in supermarkets. Special small loaves. Thin sliced beef sold in small packs (red meat usually a no no, but I was told by dietitian that the large amount of protein you get from that weighed against the small amount beef you are eating so it's very good). Then the usual things like eggs, peanut butter, nuts and many more things that i'm sure that you will know of . When you are properly diagnosed you will at least know what you're dealing with. In the meantime I hope that this info will be of some help. All the best. Alf.................. P.S. I'm off out to the dentist shortly. When I get back I will have a look through my paperwork and find out how many grm of protein I was told to consume a day pre transplant. As I've not had to adhere to that same diet for the most of the last four months or so post transplant my sluggish brain has forgotten the daily amounts of protein required, lol.

[Hidden in reply to alfredthegreat]

Alf

You are an angel for sparing the time to writing this book! Lol!

Firstly I'm giving my body a total rest today! Tomorrow I might just do the half an hour!

Your comment 're arms aching is not to do with the biking as the bike I use has a back to it as 2 hours on a normal backless bike plays havoc

with my back! It's a long story! Short version! car accident in 1998 and 18 months strapped to a bed aged 7 with TB Hip and being told I could never do sports of any kind! I did almost everything including 3 years martial arts!

Anyway, I do eat nuts but not enough! I love eggs and could eat them every day. I eat salmon at least twice weekly. Chicken, Good cheese not processed! Salads but not brocolli and cauliflower since 2 weeks ago as it bloats my stomach out which then feels hard and uncomfortable. I do have probiotic drinks and yogurts.

I look forward to knowing the quantities if you do manage to track this info down!

I take proactive spread to lower my cholesterol. I'm not diabetic and have the blood pressure of a 20 year old which is good news!

Speak again soon Alf

Regards Slaines

[alfredthegreat in reply to Hidden]

Hi Slaines. I have found the 'Diet and liver disease' leaflets. I am going to PM you the info as the info is rather lengthy. This may take me some time. So be patient, you may be reading it tomorrow, lol. Regards Alf

[Hidden in reply to alfredthegreat]

Cheers Alf

Very much appreciated !

A huge thank you! Will.let you know when it arrives

Slaines

[Hidden in reply to alfredthegreat]

Ditto alf re what I was told..

[Hidden]

Oh Slaines - I still think you should be mega careful how much you exercise you should do. Yes I’m probably a bit jealous but you surely have to be careful? Have you told consultant about your exercise (large amounts and all) and eating (small amounts and all 😁). You know I’m a worrier!

Take care itrihs

Miles

[Hidden in reply to Hidden]

Miles

I've not actually seen the liver consultant yet! My appointment on the 17th of December I thought was with the consultant but it ended up being with the Senior Liver Nursing Specialist who was lovely! She discussed my various blood tests and symptoms. Afterwards she spoke with my consultant who then recommended the various tests first before they can confirm exactly what is wrong.

I never did mention my daily exercise at the gym. I did say I was working on losing more weight etc .

Regards Slaines.....

[Hidden in reply to Hidden]

Ah OK. Jobbie for next time then. Let’s hope for positive test results, well at least not worse than what you know so far!

Good luck rishti.

Miles

[Hidden in reply to Hidden]

Hi Miles

Who's this Rishti!!!! Lol

Can I ask, did you have a fibroscan in your early stages of your liver investigation?. I know it was years ago so I'll understand if you cannot remember. I'm try to establish whether after my scan next week I may get to know more! Will they immediately tell me there findings which I got to know after my normal abdomen scan!!!!!

[Hidden in reply to Hidden]

No good at anagrams then Slaines 😁😁

No to best of my knowlede I’ve never had a fibroscan - unless it was done when I was in lala land 😁

When I had Ultra Sound Scans at Brum they told me virtually straight away what was up...

Eilsm

[Hidden in reply to Hidden]

Maybe on the anagrams ! Your so funny Miles !

I've already had CT and an ultrasound scan which both highlighted nothing wrong! Hopefully fibroscan will highlight what the problem is or should I really be saying nothings wrong with me !!! I just want to get to the bottom of this on and off discomfort along with its other symptoms. Note edited !

Cheers Miles

[Hidden in reply to Hidden]

Had to think about your last sentence for amoment 😁. But then I discovered Smirnoff the effect was shattering.... yep Let’s hope it will!

Smile