Cold

[Samantha52]

New member. I have stage 4 cirrhosis NASH. What causes me to be so cold all the time.

Also, has anyone had the transplant yet? How bad was it?

[alfredthegreat]

Hi Samantha, and welcome to this community. Feeling cold is a symptom of liver disease. I had a liver transplant nearly 13 weeks ago. It's obviously a big operation and as with all operations there is the recovery period as tissue, skin, nerves and muscle repair but the discomfort of all this is outweighed by the fact that you have a liver that is functioning as it should and apart from the recovery symptoms you begin to feel well. The extreme tiredness and the coldness and whatever issues you had with a poorly liver are no longer an issue. The recovery period varies from person to person but it is a small price to pay for the end result. Hope this answer has been of some help to you. All the best. Alfred

[Samantha52 in reply to alfredthegreat]

AlfredtheGreat, thanks for your reply. It has helped. Sometimes I wonder if I’ll make it to a transplant. I am so sick as you are aware since you’ve been through it. Can’t seem to get on top of this, seems I’m in the ER at least once a week. How bad did you get before you got a transplant?

[Hidden in reply to Samantha52]

Samantha,

As Alfred has said the cold is part of the illness, even in the middle of the heatwave I would need several layers on. Have you been listed yet? The tests will determine your suitability for transplant, hopefully that will happen. Take all the advice you are given. I was too ill for assessment, 8 months and 50 days in hospital to be well enough to go to the Royal Free. 19 months later a new liver. Type B blood, so even though a priority listing, a long wait. Things improve drastically if the transplant goes well, mine did. Life post transplant takes getting used to and you need to give it thought. Good luck and I wish you a positive outcome.

Mark

[alfredthegreat in reply to Samantha52]

Hi Samantha. Sorry been so long in reply. I was very weak when I was eventually offered a transplant. I had been 3 years on daily chemo tabs and 2 TACE procedures ( I had 2 tumours in my liver as well as cirrhosis) and I was considered terminal for nearly 4 years with no hope of a transplant. It was only when I entered liver failure that I was offered the chance of a transplant if I got through the various tests and reached the criteria required. When I went for assessment I was very weak and tired, I had lost the muscle on my arms and legs. I was only generally out of bed for about 3/4 hours on a good day. I would drop to sleep whenever I sat down, Walking was exhausting. I was always cold no matter how hot the day. By the time I got to transplant I was only out of bed for a couple of hours a day at best. Clinics and appointments were a huge trial for me. If I had a local appointment at say 3pm then I would not get out of bed until 2pm. Appointments that were a distance away were a major problem to me and were exhausting. My wife and I would get our son involved for the distant appointments otherwise my wife would not have been able to get me out of the car and up the stairs when arriving home. So if you take this as a measure of how ill you can be and still have a transplant then I hope this gives you plenty hope. I think virtually everyone worries over this issue. Remember you are never alone! There will always be support and answers for you on this site. Very best wishes. Alf.

[Hidden]

Hello Samantha, and welcome to our little group. Are you by any chance across the pond in American?

Changes in your bodies temperature is quite common. One of the 500 different functions that the liver carries out is the monitoring and maintaining of the bodies temperature.

As you'll appreciate with Cirrhosis, the more the liver becomes scared, the blood flow can become restricted. If that particular part of the liver that deals with say body temperature becomes compromised then it won't be able work as it should. Some people like yourself may feel cold, while other's tend to sweat a lot.

Your question about what it's like to have a liver transplant. There are a lot of things that can go wrong during the operation as it is after all major surgery your having. You have to also remember that one size doesn't fit all, so that liver you need will have to be the right size for you, and of course the right blood group. Your overall health is also going to be a factor, as this can take over 5-hours to complete so your body is going to be under a lot of strain.

When you have the transplant, the bowel has to be held out of the way, while the new liver is plumbed in. This can cause the bowel to go into shock and go to sleep. This is why it is so important that your bowels are open and working after the operation. Mine took three days to wake-up.

Another problem they had with me was because of my age. I was 63-years old at the time. My new liver donor must have been a lot younger than me. When it came to do all the plumbing and joining up all the various arteries and veins, mine were all a lot thinner than those of my donors. The plumbing can therefore be a challenge. There is a large vein that returns blood from the liver back to the heart, this is called the "inferior vena cava" in my case, this developed a kink in it. This managed to sort it's self out over the next few days. My stay in hospital lasted just 9-days.

Your original question, "how bad was it?". Should have read, "how good was it?" The fact that I'm sitting here writing this thread answers that question nicely. The emotional journey is another issue all together. It's a very personal and emotional journey you'll be going on. You will feel a bondage with that donor, who you never knew. This is a gift of life, for a life. Just embrace it an look after that gift.

Good luck Samantha.

Xx

[LAJ123]

Hello Samantha52,

As another transplantee ( Royal Free 2016 ) in the group, I join in welcoming you to the forum.

Just to add about the part your liver plays in temperature regulation. The hypothalamus detects that the temperature needs to rise, among the many other responses such as narrowing the surface blood vessels, it causes the metabolic rate to increase producing a raising in chemical reactions within the liver, this equals heat. As the whole of the blood supply flows through the liver, it rapidly distributes this warmth throughout the body. With a cirrhotic liver, these chemical reactions are dramatically diminished along with heat production. Hope that answers your question and it brings me fond memories of long ago doing A level Human Biology!

Jim

[Hidden in reply to LAJ123]

Nice one Jim.

[Marydel63]

I have been cold wearing a sweatshirt and hat in the house. I said to myself today Why am I so cold?