New question regarding liver disease

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Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 5/16/2008 9:21 AM (GMT -7)   
Hi everyone,
 
I have received so much information from this forum, my husband has ESLD and has most of the symptom's your loved one's have but I haven't read anything about this!  He has had this cough since March that just won't go away, is this part of the disease?? The doc's don't seem to concerned about it  but it is very unconfortable for him and keep's him awake most night's, any help you can give will be most appreciated,
 
Thank's, Judith

JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 5/16/2008 10:14 PM (GMT -7)   
Hi Judith,

I'm sorry about your husband's ESLD.

I don't have a real answer for you but we had a few posts regarding the 'soft voice' symptom. I had some issues with not enough breath but others were noting a 'dryness' that seemed to affect the voice volume. I have now started to experience that dryness and can imagine that if it gets too much worse, it could stimulate a cough reaction. Just a guess on my part, but I noticed no one else had responded yet so I thought I'd throw my 2 cents worth in.

Please remember to take care of yourself, I can only imagine the emotional weight of being a caregiver to a loved one. I wish you both well.

Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


SLC3
New Member


Date Joined May 2008
Total Posts : 5
   Posted 5/17/2008 3:26 PM (GMT -7)   
My father has ESLD and just recently hospice began coming to our house. He has had a cough for the past couple of weeks and it hasn't stopped. He has problems laying down because of it, he feels he needs to sit up to get whatever congestion there is out. I didn't know it could be part of the disease but after you saying your husband coughs too, i guess it may be.

Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 5/20/2008 9:46 AM (GMT -7)   
Thank you all for you imput, it really help's to know you are there!
 
 
Judith

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 5/20/2008 5:17 PM (GMT -7)   

Judith, if the cough is a dry cough (little or no mucus involved) it is very possible that one of his medications may be inducing the cough. You can look them up online to see if a dry cough is a side effect. Also, when someone is ill and their immune system is compromised they may show some lung irritation and have a slight (yet arrgravating) cough. You may need to get a cool air mist humidifier that you can place by his bed at night. The reason I say at night is because that is primarily when we are laying down for long periods of time. Once asleep we open our mouths and breath all night with an open mouth. This of course dries out the mouth and lung tissue causing more coughing. The cool mist soothes that and replaces the dryness with moisture. Just make sure that if you do get one that it is "cool air mist".


 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 5/20/2008 6:26 PM (GMT -7)   
Hi Judith,

How are you?
I wrote earlier today, but I guess it got lost.
Terry has a slight cough and sometimes he chokes easily on his food. I know that his meds dry him up. He always keeps a container of water with him. His voice is also a lot softer. Is your husbands? Sometimes I can barely hear him. Is your husbands cough real bad?
I think Shelly has a great suggestion. Maybe the humidity here is just not enough. I don't know when or if we will ever turn on the AC. Terry is always cold and I am sweating buckets.

Carol
 


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 5/20/2008 8:08 PM (GMT -7)   

Carol  Talk about sweating buckets.  I am wet most of the time.  It is now 80 degrees in our house and Jerry has a blanket around him.  What is that.

 

JoAnn


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 5/20/2008 8:54 PM (GMT -7)   
Hi JoAnn,

Same here. We just had a rain storm and it is so nice and cool outside. I went out to play with the dogs. I don't know how we are going to handle this during the hot months. I know Terry's blood count is low. They had to give him 2 bags of platelets when he had his last treatment. His count was 31, and that took it up to 75. He still stays cold though. I might have to get a small air conditioner and sleep in the extra bedroom. He cannot even stand the ceiling fan on him.
He is very fidgity tonight and said he was up a lot last night. He is confused about his Dr. appt tomorrow and thought we were going back to Charleston. He is seeing his primary internest and doesn't understand why he has to keep seeing him. I'm not to sure myself. His gastrointrologist said he couldn't do anything for him and so did his hepatologist, so now it is just the oncologist and interventional radiologist. Everyone says he needs one primary Dr., but they never send him their reports and I seem to be doing all the leg work. What gives. They always say they will, but never do.
Anyway, Terry asked for 2 pain pills tonight and went to bed. I hope he can get up in the morning.

Carol

PS.  He's up again. He said he can't lay down. It might be a long night for him.


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 5/21/2008 5:58 AM (GMT -7)   
Carol, I am so upset for you right now I could spit. If you requested that Terry's records be sent to his primary Dr and they are not sending them I would pitch a fit. It is their obligation morally and legally to do so. As for Terry's aggitation and inability to lay down or rest much this is an unfortunate part of this disease. In the end stage of liver disease it is very common for the patient to show signs of restlessness. It's usually the up-down, up-down syndrome. They can't sit still for any length of time at all and they can't sleep worth a darn. This may lead to another stage where they can't stay awake. They sleep most of the time and are more difficult to engage in a conversation or any type of typical daily interaction. As for him being cold all the time this is also very common. You had the right idea...........sleep in another room that you can use a room airconditioner or fan. If you are overheated ll the time then you will get sick too and then what? It is so hard to balance it all out during the summer months I know but you will have to find some kind of compromise. Just take one day at a time and always keep hope alive. 

 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 5/21/2008 7:10 AM (GMT -7)   
Oh Shelly,
I have been noticing some of these changes in him. He's also been more aggrevated with me. Seems like I can't do anything right these days. I didn't know that the restlessness was another sympton. He keeps asking me why he is like this. He just can't seem to get comfortable at all.
We are on our way to his internist and I will talk to him about it.

Thank you Shelly,
Carol


 


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 5/21/2008 8:53 AM (GMT -7)   
Ladies, thank you so much yeah , I will try the humidifier for sure!  I don't think it's the med's causing his cough but have been worried that he is retaining fluid in his lung's, he has lost 50 lbs. so far and I don't understand why, he is eating but mostly fruit's, Insure and love's his icecream.  Also thank you for the information regarding the restlessness, I have noticed an increase in that.  I too am having trouble with his primary doctor, the transplant team send's him copies of the letter's we get and he never seem's to get them???  He is suppose to be taking 25,000 mg. of Vit. A and Rocatrol everyday, we received the letter a month ago and haven't heard from his doc. yet, he is also suppose to have random Tox. alcohol testing which hasen't been done either, I am getting really angry and thinking about changing doctor's!!!
 
 
Judith

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 5/21/2008 9:55 AM (GMT -7)   
Judith, if you have a fax machine then start faxing the copies you receive to the primary Dr. Then they can't deny that they are getting them. Save the confirmation that the fax was received (that your fax machine prints out). If they still deny getting them show the receipts to the Dr at the next visit. That is ridiculous for them to say they are not getting their copies.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 

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