Hubby still has tremors, which the alcohol nurse thinks should have stopped by now? What do you guys think?
However hubby is now worried that it might not be just down to the alcohol and that he actually might have Parkinson's Disease like his dad did? The alcohol nurse has asked us to contact hubby's GP, which I have tried to do today, but have been told to call again Thursday am. I have been reading up on Parkinson's and a lot of the symptoms are the same as what hubby has already?
As for the alcoholism, hubby has had some cravings but has distracted himself by keeping busy, so has not had any alcohol. Hubby has had cramp the last two days. Hubby's neuropathy is really painful at the moment too. Hubby is sleeping ok, but is getting up to use the toilet a couple of times. Hubby's appetite is coming back, which is great to see, especially as he says that he lost weight in hospital as when he got home he was lighter than when he went in?
Hubby has his next appt with the liver specialist 29/7/21. The liver specialist has put the following plan into place for hubby:
1 - Alcohol team to contact hubby. They have been in touch today and he has an appt with the Dr/Psychotherapist next week
2 - Dietary advice for patients with Cirrhosis
3 - Ongoing HCC surveillance six monthly with USS and AFP ??? what is this? is it liver cancer?
4 - OGD to screen for varices
5 - Repeat DEXA scan
6 - Patient told not to drive due to encephalopathy and blackouts
7 - Consider pregabalin or gabapentin for peripheral neuropathy
On top of this hubby also has his rebooked tilt test 23/7/21, Abdomen ultrasound 12/7/21 & another appt to speak to the elderly care specialist looking at his blackouts, trips and falls in August. Plus he has to have repeat bloods to check his kidneys which were found to be dry 3/6/21.
Whilst in hospital they have messed with hubbys medication. He is now on Nacetal, Folic Acid, Magnesium Glycerophpsphate, Omeprazole, Rifaximin, Thiamine, Vitamin B Compound, plus he also has Spironolactone & Lactulose, but he has been told by the specialist not to take these at the moment.
The support and help that hubby is getting has been amazing
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I am glad you have a care plan put in place for hubby, sounds like they are doing all the standard monitoring and looking at his other issues.
AFP is Alpha-fetoprotein and is a tumour marker so goes hand in hand with the 6 monthly ultrasound scan to check for liver cancer - HCC (Hepatocellular carcinoma). You have the scan 6 monthly so that any changes can be picked up quick enough to instigate any necessary treatment.
thank you, that makes sense now. To start with I was a bit confused, as our local council is HCC - Hampshire County Council, so I could not work out what it meant ha ha
I'm glad to hear it. It sounds like you've both been through it with the alcohol, it's not easy giving it up, trust me, I know. But it's the best thing for him. One thing that was my experience is that the alcohol masked a lot of physical aches and pains and such. So if he already is predisposed to that, now that there's no booze they might seem even worse than before. But over time it should get better with treatment, alcohol isn't medicine.
Hi, I've been reading this forum for several months, and learnt a lot. This is my first comment. My hubby has ESLD, alcohol related, diagnosed last January, but he has been able to up drinking easily, thank goodness. However, the bit about the tremors - my hubby has tremors due to encephalopathy, in his case HE presents as a combination of dementia (confusion and memory) and Parkinson's (gait and tremors) I recognise the Parkinson's similarities as his father and brother both had it.
As you say your hubby is not taking Lactulose at the moment the tremors could well be HE based. I have wondered in my hubby's case if he has a genetic predisposition for Parkinson's given the family history, so the HE causes ParkinsonISM, rather than actual Parkinson's, your hubby may be the same as he has a similar family history. Once your hubby is on Lactulose you may find the Parkinson's similarity reduces. I see your hubby is on rifaximin, mine isn't as when he did take it for a short time, his white blood cell count went down, which was blamed on rifaximin, so he depends on Lactulose for HE control.
I've been told my hubby will have 6 monthly scans to check for liver cancer, it is routine to check as it is more likely to occur in cirrhosis, scans do not mean it is there already.
Does your hubby have ascites - fluid retention? Possibly as Spironolactone is for this. If so and he had a drain while in hospital he would have come home lighter. 1 litre of water weighs 1 kilo. I have to weigh hubby daily to check for fluid retention.
I hope things continue to go well for you and your hubby
My hubby does not take the lactulose, as he already opens his bowel several times a day. He has been told to use it if his bowel movements change.
Umm that's interesting about the connection between HE and Parkinsons, I think I need to look into this more, thanks. My hubby is forgetful and gets confused, he also struggles with his walking but we put this down to the neuropathy.
Hubby did have ascites, but since being on the spironolactone, the fluid disappeared, however hubby got enlarged, sore breasts and now has dry kidneys, so the liver specialist has told him to stop taking the spironolactone. She is going to review it when she sees hubby next
I am on Omeprazole and spironolactone at home but currently in hospital so additional stuff like magnesium, potassium and vitamins. Oh and fluids and antibiotics. Hey ho, I brought it upon myself. Keep well, Deb.
Hubby still shakes all day long, alcohol nurses asked us to contact his doctor to also discuss Parkinson's. He has been given a tel appt with his Dr 1/7/2021. Or could the shakes just be withdrawals? How long have others suffered with shakes after giving up booze?
Other withdrawals, hubby's mood is up and down, plus he is not sleeping very well. He gets up 4 or 5 times a night for a wee, plus tosses and turns trying to get to sleep. Yesterday hubby was so tired that he had a morning and afternoon siesta. However he has also been preparing the house for the plasterer, so I think he may have also used up all of his energy, as he is not used to physical work anymore. He is eating better. He has not driven his car since he came home from hospital. His memory is still shot, so he is still coming into a room to get something and then forgets what he came to get, so he is also getting annoyed with himself. His bulbous nose has started to reduce in size and is less red in colour.
Due to hubby's dry kidneys, his liver specialist has told him to stop taking the spirolactone, however hubby still has sore and swollen boobs. Hubby has to have another kidney blood test next week to monitor his dry kidneys.
Hubby's neuropathy is really painful at the moment. Hubby says if it stays like this then he is definitely going to accept the liver specialists offer of help, she suggested pregabalin or gabapentin. Does anyone else take these?
I have been staying in touch with the trips and falls specialist. He has changed hubby's Aug appt from a tel appt to a face to face appt.
Hubby's next appt is with Prof Sinclair (southampton.ac.uk/medicine/... next week. I have heard that she is brilliant, so I really hope that she will be able to help hubby through the next stage of his addiction detox.
So to recap hubby now has the following:
Decompensated Cirrhosis
Ascites
Jaundice in his eyes
Peripheral Neuropathy
Hepatic Encephalopathy
Dry Kidneys
Blackouts
Osteopenia although his discharge notes stated Osteoporosis?
Hiatus Hernia
Lymph nodes in his lungs
Possible Parkinson's Disease?
And to think most of the above are related to him being an alcoholic. I wonder if he has left it too late or if he stays off the booze, if the above list will shorten?
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