Hey all Gary from Australia here. Just read a few stories and thought I would join up and say g’day. The writing may be upside down for you Americans as we live on the right side of the world down under. (Sorry need some humor). My story. Fighting fit 40yr old who decided to see his doctor annually on reaching the middle age ground. Well that worked well!!!. Diagnosed with Crohns at 42 treated for 3-4 years on all sorts of flab and nab named drugs which didn’t work then had an emergency toxic megacolon removal.
The positives from that was they told me i didnt have crohns rather UC. Well with no colon I must be cured so happy days. Wrong ended up with sticky blood and had an interesting experience with bilateral full leg DVT’s, which then both broke off and went into each lung. Then of late just been having my normal preventative tests and MRI’s and get the good news that a MRI 2 yrs ago and the current one confirm PSC but slow developing.
So now once again trying to find out what my next journey in life will look like and what battles lay ahead. Hopefully my ability to work almost without break (except surgeries) and the very limited amount of pain that I had will continue on this next path.
What I do know that is the stories I read (and shared- am now a peer support at the gastro hospital) only helps stay positive.
On that note the conversation online are fabulous and it is great that people share these personnel stories.
My goals in the next few months is to develop a plan to tackle this beauty and see what comes. If anybody has ideas keen to listen. For those keen to promote keeping fit, I am on that page still playing basketball (not very well) and swimming/surfing.
My situation is I am now 50yrs, live in a state where I am o- blood type which accounts for only 9% of the population and while I dont have any symptoms yet I am hoping that I am eligible to receive a o (- or + ) liver as that will then give me 50/50 chance but there doesn’t seem to be anything online saying the this is possible or not.
Gaz, welcome to our PSC forum. Your introduction is a pleasure to read and it’s great getting to know you!
This is a great place, with great people and excellent moderation. Kick off your flip flops and make yourself right at home. We’re glad that you’ve joined us, and we hope that you will be too.
Hi Gary. My name is MarLena. Welcome to the group. I love your upside-down writing!
I’m sorry to hear that you’ve been diagnosed with PSC. I’ve only been diagnosed for a year. It’s a hard pill to swallow, but life goes on.
This is a great group with people in a variety of stages of PSC, so I know someone with more information than I will jump in and offer you advice/support about your blood type and transplant.
My name is Linda and I live in Canada so I guess I’m writing right side up LOL I have had PSC for the last four years and so far it is asleep as my specialist says. But I also have O - negative blood type and yeah it’s concerning because as far as I can tell that’s the only blood type that we can get a transplant from. If anyone has other information that says we can get something from O - possitive please let us know, thanks. In the meantime enjoy life and let us know how things are going from time to time. Be sure to contact us if you have questions or concerns because there’s a lot of people on here who have a lot of information first hand about PSC. Take care and God bless
Welcome Gary to this PSC forum. We are glad to have you and trust the information you receive here will be most helpful as you fight the fight that so many of us have and are fighting, that of PSC liver disease. Please let us know how we may be of help in any way as you progress through the days ahead. So glad to hear that you are staying in top physical form. This will prove to be very important in the years ahead should you need a transplant. It makes the recovery so much better. Best wishes for the days ahead.
Thanks Marlena. You and I sound like being at the same sort of stage then. I have no symtoms yet althought I have started itching, but it seems to be everytime I sit at the computer and read PSC stories so will monitor that one.
Hope your journey pans out for the best and yes will keep in contact.
@Buttercup
Linda. Was in your lovely country last October look at a little waterfall that separates you from the US of A. You are very lucky for living in such a beautiful country.
Glad to see you are O- as that means you must of been loved like me at the blood donations centres every time you gave blood as they use ours to give to anybody if they don’t have time to cross match before transfusion (in particular babies). That gift has now unfortunately turned around and possibly bitten us.
I am hoping that this is not the case and transfusions related to blood group and not type which will be one of the first questions I ask when i see my hepatologist/surgeon on the transplant service. Or if anybody is reading this I would love to hear.
Anyway thanks for your kind words and welcome and yes still loving life dont worry about that.
Thanks for the welcome.
I just wish to say it was via your commentary and assistance and that of Jeff DC1 that inspired me to join. The ability to share experiences in the tone and language of a patient or loved one is so important. While I love the skills and knowledge of doctors sometimes they forget we didnt do 7 years of medical training and our understanding of words we cant even speak is limited. So to you and Jeff, and all others thanks.
Hopefully I wont, but the reality is in a time period to come I will be relying on your words of wisdom and hopefully by then i can start sharing some of my own.
I’m Bill from Northeastern Kentucky where we speak fluent “Hillbilly” which the rest of the world needs a translator to understand!! Apart from that we are similar insomuch that I am also an O Negative blood type. I have some resources I can reach out to which may possibly shed more light on the group of donors that would be compatible for us.
I too am in an “early stage” if there is such a thing. I am 55 and was diagnosed in June 2016 and had stents in October 2016 and removed in November 2016 after which additional stenting was unnecessary “for now”! My liver panel numbers have been good since the stent removal and I have bi-annual MCRP and quarterly liver panel blood draws to keep an eye on things.
Hey Bill.
Thanks for the email.
Yip it sounds like you and me are at similar stages. Although I have yet to experience any pain, discomfort or stents/balloning. So hopefully I can stave that off as long as possible.
I have just got a referral to the states only transplant unit and have an appointment with the Professor there so will ask a few question about the o- status and provide you some feedback when that occurs. Keen to hear what your contacts say.
I will also be asking the question about if PSC suffers can have a partial living transplant as in my simple mind thought would be silly since we would simply just infect the new part with out existing liver, unless of course they remove our entirely.
Hope things go well for you and thanks for the comments. Talk soon.
Gary,
Hello again. I found this article regarding Living Donors in Australia that is current as of this summer. In addition to paired kidney donations they also mention living donors for livers. I hope this helps.
My friend who is an M.D. said that as a general rule of thumb we can only
use O Negative donations; however, he then started talking about genomes,
antibodies and markers. He said there are many more markers involved with
pairing someone with a donor organ than just a person’s blood type. He
strongly emphasized that we should only take our “final word” advice from a
hepatoligist that specializes in transplants because he said every case is
individualized and even he, who is a family practice physician, does not
have the specific training to give anything other than a broad answer.
Mark
Thanks for that especially since you were surfing Australian site for me. That site I hadn’t yet come across and looks promising that if I am eligible and can con one of my two daughters share a liver the Aust Govt will pay them 8 weeks wages which is nice.
I appreciate all the advice given as since my journey with crohns/UC I have found advise is like a set of golf clubs. Not everbody uses each club and some use different clubs for similar things but if you don’t have the bag with the all the clubs, spare tee’s/balls/gloves then your are not then in a position to use them should the time come when you are beached high and dry in the lovely white sand trap.
@BillKramer
Bill
Thanks for that. Yeah I am actually not going to stress until the main man does all the tests etc and delivers the news. I will try and not stress after that as what can one do anyway so keep swinging and try duck a few punches.
Hey Community.
Just an update from downunder since been absent for 4 weeks.
On 28 September had some discomfort on the train on the way home from work and with some minor symptoms from the previous few days, I was thinking I was having my first cholangitis attack. So off to ED for their opinion.
Turned out reading Dr Google isnt the best idea. After 24hrs of blood tests etc (by the way liver and kidney results both terrible) I ended up with a total bowel blockage and emergency surgery to remove a section of small intestine. An infection and my bowel not restarting saw me in hospital for 3 weeks. On release still not well so saw my previous GI & Surgeon who on a new CT scan saw the surgery itself has caused another partial blockage which will require surgery. So on liquid diet and no fibre for next 4 months as they wont risk another major stomach surgery so soon.
I am hoping this wont impact my PSC but the next blood test in 10 days will tell more.
Anyway still kicking and just spent an hour in the sun with my two dogs and my daughters horse running around the paddocks so hell life doesn’t get any better.
Just chasing a bit of advice on what LFT readings are deemed high. I went to my first hepto appointment (picked the states only transplant team main Professor- turns out he’s the surgeon and not a hepto so must wait 2 more weeks to see the hepto). Anyway my latest blood results are ALbium 33 (just a bit lower than normal), ALP - 327 lot higher than the 110 max- how high is high though, as I don’t seem to have any symptoms. GGT is 268 again higher than the 50 max recommended. Keen to hear how high others have gone without symptoms.
Hi Gaz,
Sorry they got your doctors mixed up, hopefully next time will go better. It’s very common to have elevated LFT readings throughout your time with PSC. I think for your Albumin you must have meant 3.3 not 33? 3.3 is the low end of normal where I had my care and transplant. For me my albumin ran in the 4.5 or so range, my ALP though ran in the 300’s all the way up to 406 at transplant. My GGT ran in the 700-800 range, sometimes dipping for a while after ERCP’s down in the 400’s. Bilirubin ran in the low 2.0’s all the way up to 10.4 at transplant. Symptoms varied depending on how bad strictures got between ERCP’s. I’ve had high numbers many times and felt pretty good. PSC is so unpredictable as you will find out as time moves forward. Hope this helps.
Thanks for the response. Yes I did say 33 but thats because Australia uses g/l and you guys use grams/ declitre so yes I would be 3.3 in your scale. I did forget to say the bilirubin which is 5.
Yes the transplant surgeon did say the same and also that things can progress very quickly as you have experienced.
Just wont be planning long term holidays in future will become best friends with lastminute.com since I find it impossible to get travel insurance anyway with my previous gastro issues so saying I have PSC will simply through the insurers into a tail spin.
Gaz,
The bilirubin is the best measure that something is wrong with the liver.
My GGT was also pretty high-past the 700 mark, and my ALP hit the 600 mark.
The highest my bilil got up to was 6.4. Once it got up to maybe a 2, I started getting jaundiced and itchy.
Jeff.
Thanks. I can say it again you and Mark are great in your rapid responses and genuine help of us newbies.
Its a little bit weird that every time i log into the web site and see the topic “make the itching stop” I start itching, however I dont tend to itchy normally.
I also dont yet have jaundice, however I am a sun lover and have a tan most of the year round so maybe not obvious.
I can only hope that the symptoms that most describe stay away for as long as possible and when the time comes I am fortunate enough to successfully navigate and win the transplant lottery.
I have had PSC for the last four years and so far it is asleep as my specialist says. But I also have O - negative blood type and yeah it’s concerning because as far as I can tell that’s the only blood type that we can get a transplant from. If anyone has other information that says we can get something from O - possitive please let us know, thanks. In the meantime enjoy life and let us know how things are going from time to time. Be sure to contact us if you have questions or concerns because there’s a lot of people on here who have a lot of information first hand about PSC. Take care and God bless