Maybe I can help you on your journey

• By Pictonite
• Posted October 16, 2009 at 6:14 pm
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Hi Deidre. I just saw your discussion and wanted to write to you and tell you that I have cirrhosis, too. Was your husband's caused by sarcoid? Mine is and I was hit with the cirrhosis 5 years ago. I have approximately 30% of my liver left. I was on a transplant list but they recently removed my name because I have other health problems. (Type 1 diabetic, sarcoid in my heart and eyes). How long was your husband on a liver transplant list? What symptoms did he show? What made it such an overwhelming experience? How is he doing now? I'd love to hear more from you about this. I hope you're both doing well now the ordeal is over.

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• By Deidre
• Posted October 16, 2009 at 7:08 pm
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Hi there'
Firstly I am really happy you wrote to me. My husband cirrohosis was caused by many things, Genetics (family has liver problems), years of taken anti inflammities, alcohol and well one day his liver just fell over Mar 08. My husband was accepted onto the list Jan 09 but he had to have all his teeth removed due to this horrible disease and once healed he would be officially on the list. Teeth removed March 09. May 09 his liver started to fail again but he was not on the list May 29 accepted Jun 1 transplant. (he was given days to live prior transplant)Prior to this failure in May he had given the best blood readings since first diagnosed then he fell off the perch.
Symptoms were - Fatigue, dark urine, Swelling of feet Plus billirubin levels just kept climbing, and they didnt stop. Also he was diabetic 2. Fortunately all other organs were ok.
I was watching my husband die before my eyes and we were told there was no hope unless a transplant came so we should prepare for the worst. Then you are told its happened you have a chance. What was so overwhelming is that you are preparing for the end and emotionally you put yourself in that place then you completely get catapulted into transplant and hope state.Its so extreme, also knowing that in your joy there is sadness because someone has lost there life
and through their generous gift you have life.
The transplant was difficult because he was so sick 11 1/2 hr op but he came through. There was complications post op. he became toxic to the drugs and went into a state of dilerium (like dementia) for about 2 weeks, he also suffered epileptic fits. But hey the liver was working beautifully. The stay in hospital was about 6 weeks. My husband suffered nerve damage in his right arm due to his positioning on the table for so long. To date that is slowly improving
But all in all he is alive Liver function almost normal and the hospital and specialist are amazed at his recovery. He looks great.
As you could imagine witnessing all of this, the worrying, the joy, the elation, it does take its toll, but what got me through all of this was a sence of humour and a positive approach and allot of prayers. Plus we talked about our fears, and I never let him see me cry through this whole experience. I had to be his rock.

I hope that helps, just eat healthy (LOW SALT) and stay positive, my cousin has liver sarcoid too, she is about to have her teeth removed, please keep an eye on yours plus your bones. My hubby has just had an infusion as he was showing the beginning signs of osteo. Infusion to protect the bones. This has been a huge learning curve, so look after yourself.
Have they give you a plan of action for yourself now ???. Stay poitive, no use getting depressed it dosent get you anywhere, that's what I reckon.
Please write back if there is anything else I will be happy to answer

Deidre (Australia)

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• By Deb1105
• Posted October 17, 2009 at 10:58 am
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Hi Deidre

I was just recently diagnosed with Cirrhosis.
10 years ago I had a cyst on my liver, so they had to remove the left lobe of the liver. I was told that I had a fatty liver.

Symptoms that I have are:
Swollen feet and legs
Cough due to fluid in my abdomen
Tired
Short of breath
I did have some blood in my stool
My platelet count is 65
Excessive bruising
Weight gain due to the fluid

I have had numerous blood tests, CAT scan, Endoscopy, colonoscopy, doppler on my legs, echo cardiogram. Went to the liver disease doctor 2 weeks ago (my first appointment) he ordered the Cat scan. I had to call my family Dr to get the results. Was told to start applying for SS disability. I am also a diabetic.

I am just overwhelmed and do not know where to start. I am currently laid off and collecting unemployment and paying cobra. Not sure what affect that will have if I apply for disabilty

I would appreciate any advice anyone can give me.
Thanks
Deb1105

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• By Deidre
• Posted October 17, 2009 at 7:12 pm
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Hi Deb,

Sounds like things are underway for doing a work up for transplant. Thats great

The blood in your stools did they find varices in either your endoscopy or colonoscopy????
Have they prescribed some form of diuretic and blood pressure medication for the swelling and fluid build up??. You may have to have this drained.
Your bloods will be all over the place and yes platlete count will be low, but that can be dealt with. Its your liver function that they will look at closely.
Being Diabetic is hard infact cruel but make sure you are religious in keeping your sugars normal. The pancreas is under a lot of pressure here due to the fact your liver is not coping. Also with swelling, maintain a STRICT LOW SALT diet, dont go into chinese herbs or natural therapies etc unless you check with your specialist. Taking chinese herbs or milk thistle etc can immediately make your not a candidate for transplant. Fresh is best and plant a herb garden, add chillies ginger whatever to your food for taste.
Unemployment - Im in Australia and I am not sure where you are. I got in contact with the hospital the social worker and she gave me all the paperwork for to apply for unemployment benefits, Im am not sure what "Cobra" is but if it is private health insurance, keep paying it.
Most importantly, and I know its hard keep yourself fit and as well as you can, stay away from anybody who is sick ( your body is trying to survive and fighting viruses is just another thing your body has to do - more stress). There is so much about this disease its a tough battle and so much can happen. Keep copies of your blood tests of your can see and monitor whats going on.
This is a hard one - Organise Power of Attorneys someone you can trust
I hope this helps Deb, please keep in contact

Deidre

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• By hoperui
• Posted November 14, 2009 at 8:01 am
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it's so draining in the family and you get noming feelings and it's very painfull

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