I have had psc for 12 years. I has a liver transplant in 2006 and did extremely well for 7 years, no hospital admissions during that time.... Unfortunately psc was re-diagnosed in July from an MRI and ultrasound after my bloods were higher than normal, however not very high and I started on ursofalk tablets and my bloods are remaining stable.
Has anybody suffered with very low sodium... my levels currently sink very low (110)... think should be in region of 136. When low I experience seizures, literally just passing out with no warning as such, although feeling tired, difficult as I almost always feel tired! I am then admitted to hospital and re-hydrated. I have had heart tests, brain scans, ultrasounds, x rays... all normal, hospital is thinking perhaps side effect of immuno-suppressants... kidney function appears to be ok....
Has anyone suffered anything similar, would appreciate any advice or comments. I work full time and its difficult as I never know when I may collapse so therefore I am currently off work.
My advise would be to avoid standard table salt as thats really bad for you and get organic sea salt or better still there is some Himalain ( spelling ?) rock salt which is a pink colour and has lots of trace elements in it . You can get this on line . And eat plenty of it . Salt ( the good stiff , not sodium chloride ) is actually really good for you which is why it was once worth more than gold . Hope this helps . You may want to try ASEA too. My PSC is quiet bad now , had a transplant in 2006 , but it came back within 6 months. Have been taking ASEA for about 8 months and my blood tests are improving , slowly but surely the numbers are coming down . I also take Livertone Plus .
Thank you for your reply and for your advice, I was told not to overdo drinking water as it may flush out sodium but also to drink enough to be hydrated! Perhaps it is something connected to the psc and as you say being monitored and regular blood tests is the way to go. Because I live in rural Ireland when I have bloods done by my dr, I wait 3 or 4 days for results and by then I may have had another seizure but its something I am working on.
I hope you are doing well, I have been told despite the psc re occuring that it may be years before another transplant is needed and hopefully it will be years before you may need transplanting.. I know its very individual,
Sorry to hear the psc came back so soon, that was rough and must have been quite difficult at the time, 7 years on I really struggled a lot getting my head around the fact that it had returned....but I am glad you are doing better and I hope this continues... will give your suggestions a try although it is sea salt we use...
Hope the bloods continue to be stable and many thanks again for the advice,
Sorry to hear of the recurrence. Hope you have many years of good health ahead of you.
Could I ask a quick question, either of you or anybody else who might be reading?
My daughter has just turned 16. Had a transplant 6 months ago, after 6 years of illness (horrible for a parent to watch). The doctors tell us that the transplant went well (although she did get glandular fever and cytomegalovirus from the donor, she’s gradually regaining her strength)
But I’m wondering what are the chances of it coming back? The doctors all seem very vague when I ask them this question. Can anybody out there give me an idea of this? (I do understand that the situation is different with children - they also warned us that many of the drugs etc are carcinogenic, although how likely they make cancer, again, nobody seems to be willing to say. I suppose they just don’t know
Thank you, and best wishes for the New Year to all of our fellow PSC families
Thank you Adrian for your reply and for your good wishes,
I hope your daughter is doing well, it must be so hard for a parent when their child is ill and it sounds like your daughter has had many rough years, I hope the transplant will be a great success, it takes time but hang in there, the difficult bit is getting strength back to fight off infections and 6 months on hopefully she is much stronger and will now go from strenght to strength...
After my transplant I wanted to know how long will this last, will psc come back, will I live a normal life, etc this is perfectly natural of course but the thing is nobody really knows and my partner, family,friends all said take it one day at a time, I wasn't happy with this but actually you know everybody has to live one day at a time. Looking up the internet gives answers but also can lead to much more worry as can asking consultants questions, if someone says for example, oh this can happen in 5 years, I would find myself counting the 5 years down... I suppose I am saying enjoy now, today, life life... so easy to say I know.
I am told by my consultant approx 25% may get psc again after transplant and the various drugs we are on, particularly immuno suppressants mean we are potentially more prone to skin and other cancers but the good thing about regular health checks and follow up appointments mean regular blood tests and various other tests can pick up early any grey areas...
I went 7 years after my transplant with no hospital admissions and being well, regular follow ups where I paniced before every one, now my bloods are a bit higher but I am told not to panic, I do a bit but I try not to! The sodium is going to be sorted soon I am told and I hope, its nothing too big I am told...
I hope this may help you, I wish you, your daughter and family a very happy new year and many healthy years ahead,
Boris drian said
Dear Boris
Sorry to hear of the recurrence. Hope you have many years of good health ahead of you.
Could I ask a quick question, either of you or anybody else who might be reading?
My daughter has just turned 16. Had a transplant 6 months ago, after 6 years of illness (horrible for a parent to watch). The doctors tell us that the transplant went well (although she did get glandular fever and cytomegalovirus from the donor, she's gradually regaining her strength)
But I'm wondering what are the chances of it coming back? The doctors all seem very vague when I ask them this question. Can anybody out there give me an idea of this? (I do understand that the situation is different with children - they also warned us that many of the drugs etc are carcinogenic, although how likely they make cancer, again, nobody seems to be willing to say. I suppose they just don't know
Thank you, and best wishes for the New Year to all of our fellow PSC families