Waving Hullo!

[dckimberly]

hi there! Brand new here. I decided it was time to get some more support now that I have been placed on the transplant list. I was diagnosed with end stage liver disease 3 years ago, consisting of Fatty Liver, Hepatitis C and Alcoholic cirrhosis. I have been sober nearly 7 years, but did not get sick until 3 and a half years later. Currently I am a patient at Addenbrookes Hospital and am very happy with the treatment I am receiving there..not to mention all the wonderful support from the staff there on C4 and clinic 12.

A Month ago I was blessed to be offered the chance to go on the new drug, the Harvoni. Prior to that, I could not take anything, as by the time they caught my illness, I already had acsites and was to sick for interferon. I am a Genome type 1 and much to my delight and happiness, after one month of taking the medication, my viral load is showing no signs of Hepatitis C. It's my understanding it turns it off basically. Also, the medication has 0 ZERO side effects..unbelievable!

Although this will not save my liver, it will mean that if I am blessed enough to get a new liver, then the new one will not get infected by the disease.

Currently I go in for drains every 2 weeks or so, where they take between 18 to 21 liters of fluid. It's weird, because, underneath the fluid, I have gotten too skinny. (My dietician is always mad because I no longer have an appetite..lol) So, 2 weeks out of the month I look pregnant with twins, the other two, I look too thin.

I also deal with what I am guessing is normal for everyone..a lot of pain, for which I take medication, and exhaustion. I either sleep 12 to 18 hours a day, or not at all! I am able to walk in my home, but use a wheelchair outside of that.

But, I am so grateful for the care I am getting. Everyone at Cambridge is just amazing! Recently I was in hospital for a week, due to a staff infection that got into my permanent pic line..and I could not believe all the visitors I had..nurses, doctors, the transplant folks..even on their day off, my specialist from Clinic, Tracy, came to visit me..I felt like a rock star..lol. And I am grateful for my life..I am so blessed, as many people die from alcoholism while still drinking..at least I was given the chance to get sober and start becoming the person I was meant to be!

I have an amazing partner, 2 lovely children in the US and a little 6 month old grandson, whom I just adore..I cannot believe I lived long enough to see him..I Skype with them weekly!

I look forward to learning about everyone and hopefully adding good things to the conversations. I'm still learning as I go..

thanks for reading my long hullo!

cheering everyone on!

[ballie52]

Hi Kimberly..There is lots of lovely people on this site that share the same problems. .Liver disease in all forms is very hard to deal with no matter what the cause..I find everyone on this site very helpful and understanding and willing to give advice if they can at a time when they are going through a lot of health problems themselves. .A great site for info and support. .Welcome Xx

[dckimberly in reply to ballie52]

Thank you so very much for the lovely welcome!! Cheering you on!

[RodeoJoe]

Great you found this place. I haven't been here long myself, but as I've been through a transplant and come out the other end ok, I thought I could share some of my experiences here. Hopefully they might be of some use to someone.

That's great new about the Hep C. Ascites is terrible I also lost about the same amount after taking diuretics for a couple of weeks. That's about 4 stone you know!!! It's so uncomfortable.

[dckimberly in reply to RodeoJoe]

nods..yes, 50 lbs of fluid..its crazy!!! I'm glad I found this place also! It seems better than a couple of others I've looked at..more supportive and more info..not opinion.

How long did you wait for transplant? May I ask how long recovery at hospital and then at home was?

Thank you so much in advance!

[RodeoJoe in reply to dckimberly]

I got a transplant real quick! I got very ill very quickly. I was on the list for about 3 weeks. In many ways very good but not a recommended approach

I was out after 10 days. This was last November, so I was actually Christmas shopping a few days after leaving hospital. I completed a 25 mile cycle ride a few weeks ago, have bought a sea kayak and I'm planning on getting back to jumping my horse real soon.

I've also got back to working full time at the local University.

Life is good again!!! You can come out of this and get on with a completely normal life.

[scottyboy40]

Welcome to the site Kimberly. That's a great post ,sound's like you really had a time of of it.For you to come out the other side and feel the way you do is pretty

amazing considering the Ascites and the amount of fluid you were having drained.I also have cirrhosis and am currently waiting for Harvoni treatment.

I couldn't have interferon either as was no were near strong enough to deal with it .

Addenbrookes is a fantastic hospital i know as i am also there .Been in c4 a few times and Tracy is a great specialist nurse. Got an appointment with her

tomorrow to discuss treatment fingers crossed.

Your'e positivity is shining through .

By the way i accidently removed my original account which was scotty40 recently so all my history is gone.See scotty 2002 for harvoni post.Sorry!

[ballie52 in reply to scottyboy40]

Hi Scotty would be interesting to know how it goes with the appointment ..i am also at Addenbrokes and hoping for the Harvoni too as i am also on the waiting list due to my cirrhosis...i also have Tracy ..a great nurse always there to give advice when needed..let me know how it goes ..my appointment is much later in the year so would be helpful to find out what's going on in the Harvoni side.

[scottyboy40 in reply to ballie52]

Yeah Ballie52 I'll keep you posted pal.

[dckimberly in reply to ballie52]

Hi there..Yep, Tracy is my nurse specialist..and I'm on the Harvoni..one month down..actually nearly 6 weeks. I have to take it for 12 weeks, but it's already working My viral load is showing no signs of the virus..which, I'm guessing means it's stopped replicating and is no longer showing in my body. Amazing! I had a hard time believing it..since that is what has been killing my liver..I do know you have to get the prescription from the pharmacy there..or at least, my group does. It's so expensive so, they distribute it where they are treating with it..15,000£ per 28 days. It looks like a big vitamin. And you can't miss a dose. I was supposed to take it with riboflavin (sp) but, that was making my tummy churn..so, they took me off that part. (I don't know if that drug is given to all Genome types, or mostly just a couple of them to help the Harvoni work)

As far as the appointment goes, I just went in and Tracy gave us the prescription. (I picked up the second one) The pharmacist calls about a week in advance to let you know its ready so you don't have to wait. Tracy will have already explained it all..and thats it! Then a month later, blood work, to check your viral load and see if its working..they can tell if your taking it or not..it shows in the viral load. She told me if patients are not taking it, they take it away..can't blame them..it's so expensive.

The are prescribing the early patients based on some kind of point system..but I think it has to do with how sick you are..if that makes sense? I was supposed to start taking it in the first group..but there was a complication..so now I'm taking it. And it works!! YAY!! and no side effects..which you would think there would be..given what this wonder drug does!

I adore Tracey!! She's just the best..and really cares.

Hope all this info helps?!

Thinking a good thought for you!

[ballie52 in reply to dckimberly]

Hi Kimberly thanks for the info..don't know if i am sick enough to get it right away but i do have early cirrhosis so hoping it will be done by the end of the year..great news you have cleared the virus in just a month..good news to hear that it's starting to be given to people now!

[dckimberly in reply to ballie52]

your so very welcome And I hope you can get it soon..it's a real game changer!! cheering you on!

[dckimberly in reply to scottyboy40]

hi there..Thinking a good thought for you today!! I'm guessing your at clinic now or on your way home.. and thanks for the lovely welcome!

[scottyboy40 in reply to dckimberly]

Sorry love my appointment is 23rd tomorrow but thank you for the info on how Tracy and yourself went about it. No side effect's then.greatstuff. Again welcome Kimberly.

[dckimberly in reply to scottyboy40]

well good luck!!!

[scottyboy40 in reply to dckimberly]

Thank you!

[earthpixie]

Hi......also at Addenbrookes....c4....clinic 12.....specialist nurse I get is Aileen....who is fantastic....spent 4 months in c4 in 2012.....but ascites managed with spironolactone....huge fluid loss at start.....

Hoping all goes well....

[scottyboy40 in reply to earthpixie]

Hi Earthpixie (great name by the way). Aileen Inte is a fantastic Liver nurse,she treated me at the beginning of my cirrhosis and pointed me in the right direction's.Funny! I,m still on spiro ,ascites gone but still in my lower leg's.I'll keep you posted.

Sorry changed my account name..... Dont ask!!

[earthpixie in reply to scottyboy40]

Aileen is fab.....all ascites gone......but has taken a long time....but generally well.....Great to know others love Aileens lovely cheery smile ... :).....earthpixie.....as impish grin.....and fortunately still on earth...even when lovely Aileen says I shouldn't be....

[dckimberly in reply to earthpixie]

did Aileen handle your drains? I have Fiona for that, and she has actually become a friend to us..Im always so happy to see her..I THINK I had Aileen, believe that was her name..when Fiona went on holiday? To Greece? She was sweet to me..but got nervous because my bloods weren't good for the first time..but Fiona is trying to sort that out now..kidney functions..ugh..lol

[earthpixie in reply to dckimberly]

Never had ascites drained....due to very poor clotting...and bone marrow problems.....so..had to wait till kidneys recovered enough for spironolactone...Aileen is tiny....jet black hair in ponytail...oriental looking....

[dckimberly in reply to earthpixie]

I was on all the meds at first too..but then they just stopped working..they don't know why.but they say it happens.

It's such a relief when the meds are working I hope your feeling well! 4 months? wow!! you poor thing! a week makes me crazy! lol!!

[earthpixie in reply to dckimberly]

Ha..was forever!!!....but had many....many setbacks......like bone marrow stopped working... ......but am well now.......see the beanstalk like Mr Allison 6 monthly....wishing you all the best with transplant.....

[dckimberly in reply to earthpixie]

I love Allison!! I start his clinic in September, after I'm done with Tracy..I got so upset when I found out she would no longer be handling my care..but she said I have to be in Transplant clinic now.. Also, Dr. Gelson has been a real advocate for me..he is super cool!

[dckimberly in reply to dckimberly]

also, my Mom is a crystal Healer in the states..she sends me special jewelry with stones that are good for the liver..Dr. Alison likes them and always says something when I wear them!

[earthpixie in reply to dckimberly]

Haha...yep....sounds right...he's great😁

[scottyboy40]

I believe it is Dr Allison's clinic,would that be right?

[earthpixie in reply to scottyboy40]

Depends...also Dr. Alexander....and possibly another hepatologist consultant too......Usually see the consultant you're under.....but when hospitalised consultants change very 2 weeks.....

Would hope you see Dr Allison......will do everything he can for you.....when you listen to him!... 😁....

[dckimberly in reply to scottyboy40]

I start with that clinic in September..Do you like him? I do..he's always so kind..he likes my jewelry..lol

[scottyboy40]

Yeah Dr Alexander is my consultant.

[earthpixie in reply to scottyboy40]

Oooohhhh....harsh exterior......but...heart of gold.......good luck for tomorrow.....

[jules45]

Hi, nice to read such a positive e mail. I'm quite new to this as well but the posts from people who are in different situations with different problems and the support I have had when Ive had a dilemma has been of great support to me. It is thanks to this forum I was given the courage to ask for a hepatologist. One lady on here who's husband is extremely ill took the time to give me much advice. I too suffer with cirhossis and other connected illnesses and I felt lost and I was told to demand a hepatologist and I had the good news last week that I have been given one. Ive been struggling just seeing GP and gastroenterologist. Im so glad I joined as everyone on here is so friendly and there is always someone here who's suffered with the same or has advice to give and a story to tell. I hope you benefit from being on here, as I do and that your health gets better. Your story sound like you've dealt and are dealing with a lot and being in contact with other sufferers will help I'm sure.

Best wishes and good luck!

jules

[linzenilss22]

Hello did your fatty liver turn into hepatitis than into cirrhosis from drinking with hepatitis? How many years did you drink?

[dckimberly in reply to linzenilss22]

hepatitis cannot be contracted that way..it was blood born for me, and I think everyone? with Hep C.

The fatty liver was most likely due to the drinking and the exotic foods..I was a chef, a pastry chef at one time and ate extremely rich foods, especially French cuisine..

They never really said much about the fatty liver..as it's the Hepatic Cirrhosis that is killing me..but, the Hepatitis on top on the primed liver..primed from alcohol and drug abuse was just a bad thing waiting to happen..still I was stunned as I got sick AFTER I got sober..3.5 years after.

I drank a lot for about 7 years..by a lot I mean a filth a day..not sure what that equals here in the UK..but a large bottle of whiskey and or Vodka. Drugs will tear your liver up also..but for women, especially, you don't have to drink as long to do as much damage..it's weird like that. I was using of drinking something for close to 30 years. I got sober when I turned 41..I am 48 now

Where did you hear that hepatitis can be contracted that way? I've never heard of that..? just curious..

cheering you on!

[RodeoJoe in reply to dckimberly]

I think hepatitis is a strange word. I think most of us think it means a viral infection because of hep a, b, c, etc. But I think it just means diseased liver. In which case drinking would cause hepititus!

I duno?

[dckimberly in reply to RodeoJoe]

actually..I heard they are up to letter F already!! it IS a strange word..but I think of the word Heptology..or however you spell it..and applying to the liver..

[RodeoJoe in reply to dckimberly]

Yeah.. Mine was probs Z! All I know is liver disease is the liver disease. And you cant catch a virus from drinking! Well depends what you drink.

[dckimberly in reply to RodeoJoe]

no you cannot..or kissing. It's blood born..

cheering you on!

[RodeoJoe in reply to dckimberly]

And hats of for drinking a FILTH a day

[dckimberly in reply to RodeoJoe]

ha ha ha..sorry, my spelling is very bad..I'm dyslexic and sometimes the spell-check confuses me also! a 5th a day..I meant! giggle

[Bolly in reply to RodeoJoe]

You're right Rodeo - hepatitis comes from a combination of ancient Greek and Latin and means inflammation of the liver, which can come from a multitude of different causes including 21 different known liver diseases. But most people in the UK link it with the letter C and assume it means hepatitis C. Its a bit like the word cirrhosis which is pretty much associated with alcohol, though it too can be caused by all liver diseases. Lots of us with both hepatitis and cirrhosis feel stigmatised by the association with either alcohol or Hep C, so often just say we have liver disease without saying what it is.

Wow kimberley, that was a lot of stuff to throw at your liver over many years! Hope you give it lots of TLC now! Great the Harvoni is working. Guess the medics will wait for about 6 months after the end of treatment to do a final PCR and see if the virus has gone for good. Its a sneaky one, it can hide in body tissue not just blood, and can replicate again from a very low level.

[dckimberly in reply to Bolly]

I did not know that..interesting..Ill ask my doctor about that..that's kinda scary..no offense..but I think Ill focus on the fact it's no longer showing in my body right now..lol..Very interesting about where the word actually comes from..very. I love word and phrases..it was my 'thing' in anthropology. that language, and the biological needs in order to actually form words and make the sounds we use.

cheering you on!

[Bolly in reply to dckimberly]

Your docs are limited to checking your blood for the virus! Well in theory they could do a biopsy after your treatment ends to check you liver tissue for the virus, but they dont normally do that, they normally rely on a blood test or PCR for evidence of the virus, much like you have done during the course of the treatment. But if I remember right, you will be asked to wait 6 months after your last dose of Harvoni before they do one more PCR to check the virus has not come back. Sometimes it does, because the viral cells are not just in your blood but elsewhere in your body. Its positive that the drug has reduced the level to undetectable, and hopefully that positivity will carry you through the rest of the treatment. However 'undetectable' means 'not able to be detected by the machine that tests the blood', and these machines can only detect down to a certain level, probably shown as 'less than' or with a < symbol. Which is different from not there at all! So be optimistic, but be cautiously optimistic until that final PCR. Combine that with zero alcohol and a total turnaround of your diet, nutrition and lifestyle and you should be good to go on your second chance of a life. Well done to you for turning things around and thank you NHS for giving her the drug!

[linzenilss22]

Hi I was talking about alcoholic hepatitis. What symptoms brought you to the doctor? I'm worried I have cirrhosis but have normal blood tests except elevated bilirubin and 2 normal ultrasounds but have symptoms

[dckimberly in reply to linzenilss22]

ahh..sorry, well, when I was first diagnosed..it was in the 1990's and I was in a treatment center for drinking..so, they asked if they could test me for it, along with HIV, STDS and other Hepatitis viruses..I sure..It was free, so..that's how I found out. I was never sick from it until 2012. The symptoms I had were related to all of it though, including the cirrhosis..but the major thing was ascites..I was in a lot of pain, and I exercised, worked out all the time, ate healthy..but I put on like 60 lbs in under 5 months..I started having chest pains from the fluid and went straight away to A&E. They found all the fluid, bad liver function blood tests and my spleen was and is still 2ce it's normal size.

Hope that answers your questions..also, they checked my bili also and it was not good..In the US they look at three things..and I had already hit the MELD requirements..it's called something else here..but it is how they judge how sick you are and where to put you, if you need to, on the transplant list. It checks liver levels, ammonia levels, etc.

[justme321 in reply to linzenilss22]

Very unlikely you have cirrhosis with 2 normal ultrasounds.

[dckimberly in reply to justme321]

JustMe might be correct..I'm not a doctor..but I do know they can normally see the ridging along the edges.. did they check your spleen also? mine is double in size..they say its because it's working overtime, along with my kidneys trying to help with the liver's workload. What did they say about the bili tests?

[dizzime]

Hi there. So glad to here you got the Harvoni its a great cure. I had my transplant in Aug 2013 after being ill from 2000 i was really bad at the end. Dont know where i got the hep c from probably an old tattoo done in 1978!!! Have had a couple of problems with rejection since but that was more due to the hep c getting into my new liver. Anyway got the Harvoni on 01/04/15 and the hep c had gone after 4 weeks. Now finished the 12 week course and back to check if it's still gone in September. Feeling better everyday. I know what your going through now but keep strong and positive and you will get through it. I never once thought I wasn't going to make it. It all seems quite surreal now looking back I really don't know how I did it but you just do. Just keep going and take one day at a time. Every day now is a Brucie bonus day and I try and do something positive everyday. Keep smiling and stay strong. X

[dckimberly in reply to dizzime]

hi there and thx for your reply Nods..it does seem surreal..somedays I still cannot believe

I'm sick..but, I look in the mirror and I no longer look like me..not too mention, I cannot do a 10 th of what I used too..My tests after a month on the Harvoni were the same as yours..so YAY!! hopefully it will make it easier for me to have the transplant..but at least the new liver will not get sick from it! That alone is just incredible!! SOOO Grateful!

How long were you on the list..if I may ask?

I only worry about the fact that I am a rare blood type..A negative..but..either way..I'm just blessed to have the life I have today..I have an incredible family and circle of wonderful friends..when I was drinking I had strained and bad relationships..I think if If I only got sober so I could be a good mom to my children..then it was worth it..regardless if I survive this or not..My son says, "Mom, it was never a question of IF you would die..it was only when you would die.."

I've had nearly 7 years to finally be the person I was meant to be..and yeah, some of them have been sick years..but thats ok..many of my friends died a long time ago from drinking and drugs..it's a miracle I'm still here at all!

cheering you on! XX

[ballie52]

Great positive thinking dizzime...yes you can never imagine light at the end of the tunnel but Harvoni is a wonder drug as well as all the new non interferon drugs coming along at the moment..waiting for Harvoni to just put all this behind me.

I have been on a long journey with my husband having hep c and cancer and 3 liver transplants due to this virus..and now cirrhosis myself from hep c contracted after my Egyptain husband had been vaccinated for bulharsia in Egypt..they used the same needles and infected half the population with Hep c..so you can imagine how hard this has been for both of us...so happy to see everyone with Hep C now getting a chance to cure this awful disease that have claimed the lives of 5 of my husbands family so far and all under 50yrs old...so Harvoni i can't wait to take it when i get my chance.

[dckimberly in reply to ballie52]

good luck..I hope you get it really soon!!!

[linzenilss22]

My bilirubin could be a gallbladder problem but I do not think it's that as right quadrant pain is constant. I also have nausea everyday with fatigue and dry mouth. 3 missed menstrual cycles I have read these are all cirrhosis symtoms. My alt and ast are below normal not sure if that signifies anything

[dckimberly]

hmmm.. not sure..I know that when my pain first started, it was all on the left..I thought for sure it was my pancreas, or my spleen..but my specialist said that abdominal pain is different than other pain, in so far as it actually will travel..meaning, something can be wrong in one place, but you have pain in a completely different area of your tummy. I thought that was so curious! But, it made sense!

I have terrible fatigue..god, some days I can't force myself out of bed..other days I cant sleep.. I also stopped mine.. (my menses) and I totally get the dry mouth also.

Are you seeing a doctor, did you say? for more testing?

thinking a good thought for you!

kimberly

[linzenilss22]

My Dr told me with normal blood tests alt 11 ast 12 and low alp along with normal platelets 249 and 2 normal ultrasounds I shouldn't worry about my liver. Did you have an ultrasound that showed cirrhosis. I've heard cirrhosis can be missed in bloods and scans

[dckimberly in reply to linzenilss22]

hi there

I did have the ultrasound (I get them all the time now) ..I sometimes get two different ones..the more extensive one is pretty cool..it actually listens to the blood in my liver..They can tell by the way it sounds if it is moving the right way, not the reversed..which is bad..the first time I heard that, I was like woah!! lol..and they looked at my spleen (they also do) and my portal vein..

You can see the slight ridging on the edge of my liver..( so it looks a little bumpy there..just a little) They said, at least the first time, it did not look that bad at all.. but I was sick then with ascites, Cirrhosis and Hep C. (this was 3 years ago )

Anyhoo..they told me the edges on a healthy liver are smooth. The ridging showed the disease. Again, they told me it did not look bad at all, compared to what it could have, but I was already in end stage. They said sometimes it can look completely normal and you can be very sick. So, I'm not sure..but, if your doctor said not to worry? I mean, that's good news.

But the pain was the big thing for me..it happened prior to my belly filling up with fluid and proceeded to get worse. I have to take really strong medication now to keep that at bay, and still sleep with super soft pillows on either side and have an air mattress now. (so very grateful for that! )

Do they think your pain is related to your gallbladder?

I dunno..I don't want to give medical advice..but I do know, being tired all the time and having pain..I'd keep making them looking.. at everything in that area.. you know?

that's just me..hope that helps?

thinking of you XX

kimberly

[SadieGirl]

Hi Kimberly~ First of all Congratulations on being put on the Transplant List and being Sober for 7 years!!! Way to go!!!

I am brand new to this site and I live in the US. I'm not sure if we have a site like this but I haven't had time to research much lately. At any rate, I hope this is "OK" to ask, but I have just recently became VERY concerned about the amount I drink due to a blood test showing that I had enlarged red blood cells. I am 54 years old, single, lead a Healthy Lifestyle EXCEPT for drinking a bottle of wine a night (give or take). I have drank since I was 16 (not this much but 40 years of drinking often etc) I am wondering about how much you drank prior to quiting?! I realize none of us are the same and some bodies tolerate a lot more or less than others but just wondering....

Another thing I have heard a few times in the past 2 weeks is people finding out they have liver cirrhosis/disease Years After they Quit!!! I'm just wondering why it took the disease so long to surface?! OK, again, I am just starting to learn about this all and how bad alcohol is to Every Organ in our body, not just our liver. It is what has made me quit drinking Cold Turkey 13 days ago! Right now, I am doing some blood tests (b12 and I asked the Dr to check for Thiamine) as well as an ultrasound. We don't have the Fibroscan readily available in the US. OK, I know you have a full plate so if you are too busy to get to this, I understand.

Love and Light, SadieGirl