first good day

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exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 12/7/2007 9:33 PM (GMT -7)   
Hello everyone.  Just wanted to let you all know we had a good day.  My husband actually ate three meals today.  He hasn't lost more weight this week.  I'm sure he will been to be drained on Monday but that will be two weeks since the last time and that is very good for him.  STill no word from Vanderbilt.  I'm a little concerned about his number.  By that I neam sodium, pottasium etc.  He's having alot of cramping.  I don't want to dwell on the negitive because we had such a good day.  But how often should blood work be done.  He's on 300 mg spironolactone and 4 mg bumetanide all taken at the same time in the morning.  Also various other med. Hydroxyzine for itching 50 mg three times a day and Zofran for nausea as needed.  I worry about dehydration.  Every inch of his body is flaking he is so dryed.  I suspect some of the weekness is from the high doses of dieretics.  What do you think. 

hopefull2
New Member


Date Joined Dec 2007
Total Posts : 10
   Posted 12/8/2007 1:41 AM (GMT -7)   
The diuretics will make him weak and dry him out try a good hydrating lotion with silicone in it. You mentioned cramping what kind my husband is having really bad muscle cramps the doctors keep telling us they don't know why just wondered if that is what your husband is having.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/8/2007 9:40 AM (GMT -7)   
Hello Exhausted, As far as the blood work, doctors can order from weekly, bi weekly or monthly. The very minimum should be monthly. If the patient is a candidate for a transplant or trying to get on the transplant list they can order it as often as weekly. My husband's was monthly for a number of years and once they really started considering him as a transplant candidate they bumped it to bi- weekly and at one point right before his evaluation they he him going every week. They gave my husband quinine for the cramping. And it is the diuretics that are the cause of them. They do cause the potassium and sodium levels to fall so they should be readjusting the diuretics as needed for what ever symptoms that develop. It's a balancing act for all the meds. And they constantly are or at least should be... readjusted as needed. It's a royal pain but it is a necessary evil for liver patients and their caregivers. It's very hard trying to keep track of how much each medicine needs to be taken this month. At least it was for me. I kept a journey that I wrote down everything that the doctor tolds us. And when my husband tried to tell me I was giving him his meds wrong I would whip out my journal. Hope this helps.
And that you have another good day today. Thoughts and prayers.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 12/8/2007 11:14 AM (GMT -7)   

Exhausted, hello again. I hope this posting of mine doesn’t bore you. You probably already know these things but just in case you don’t  I wanted you to have a basic understanding of the effects of your husbands diuetics. 300 mg spironolactone and 4 mg bumetanide”. Of course he has to take them to control the fluid buildup and I suspect high blood pressure. Because of your concern about his electrolytes (potassium, sodium etc) I wanted to hopefully help you understand what they are and how they work. I know that this is really simplified but I hope it helps a little.

   

Medical terms: Hypokalemia=low potassium, Hyperkalemia=high potassium

How do we know what our potassium level is? Blood tests indicate potassium levels which are ordered and monitored by the DR. The Frequency of the tests are determined by the results of the previous blood tests and symptoms as well as to monitor results of the medications taken.

What potassium is: Potassium is a mineral required to sustain life by helping the kidneys to function normally.

What potassium does: Potassium plays a primary role in smooth muscle contraction, (that includes the heart muscle). Potassium works hand in hand with the sodium levels and magnesium levels. That is why the Dr will most likely order a test called “electrolytes” which include potassium, sodium, chloride, etc. Magnesium levels are not usually included and ordered separately.

Causes of low potassium: Diuretics, diarrhea, excessive vomiting, prolonged profuse sweating, coffee and alcohol can also decrease levels. There are other causes but I listed the most common ones.

How do we lose potassium? Mainly through urination

Signs and Symptoms of hypokalemia: Muscle cramps, weakness, no energy, stomach problems, and heart problems, such as an irregular heart beat.

Can hypokalemia be fatal? Yes it can- mainly by affecting the heart which is a muscle.

Treatment: Usually the Dr will Rx potassium pills to give the body back what it has lost.

Is treatment successful? In most cases yes it is.

 

I hope this helps in understanding potassium levels and why your Dr orders the lab tests

Educate yourself as much as possible. Look everything that you don’t understand up on the web. Take notes, download what you can, make folders and label them. It keeps it all organized. Also every time you get lab tests taken ask your DR for a copy. They should have NO PROBLEM giving you a copy of the results. Keep them in the folder too. That way you can monitor them.

Smart people make smart choices!

                                                         Shelly


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/8/2007 3:44 PM (GMT -7)   
I just wanted to add that if potassium is really low, emergency IV of potassium may be done. My hepatologist threatened this one time, but I swore I would take the potassium tablets as prescribed. The only way I could get them down was by breaking in half and coating the halves with honey before swallowing.

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/8/2007 4:20 PM (GMT -7)   
Hi Exhausted, I am glad to hear that you had a good day. I hope you have many more and my prayers are still with you.

Shelly, thanks for the info. I was just researching potassium levels last night. This really helps alot. My husband has been sleeping a lot lately and started complaining about his legs hurting. He does have knee problems, so I am not sure if potassium is related to the pain. I should find out next week when we get his labs back.

By the way Exhausted some doctor's will email the lab results to you. That is what my husband's doctor does.
Butterflythree
 
There is always hope!


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 12/8/2007 7:52 PM (GMT -7)   

 Butterflythree, I wanted to comment on your husbands leg pain. If his knees are the complaint I doubt that it is potassium, if his muscles ache than it  could be his potassium levels. You won't know for sure until labs are drawn. You can ask him to be as specific as he can, maybe even showing you where it hurts. That way when you report it to the Dr you can desribe the pain. Drs often ask people to evaluate their pain a a scale of 1-10. This is common for most medical professional to ask. It gives us an idea of how severe the pain is. 10 is described as the worst pain you could possibly have or imagine, 1-3 is usually discomfort, 4-5 is pretty uncomforable,anywhere from 5-7 is very painful but and only moderately tolerable, 8-9 is quite severe and serious pain. again a 10 is horrific and the person is screaming in agony. It sounds a little kookie to ask that question but it is helpful to the medical staff in evaluating the pain. This scale is used for most complaints of pain so you may hear the Dr ask him to describe and scale it. Hope this helps a little.

                                         Shelly


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 12/8/2007 8:44 PM (GMT -7)   
Hello Everyone....Just wanted to thank you all so much for the info.  Shelly I have printed all of the info and do have a file started.  Sometimes I have to read alot of the information over and over to retain it.  Its like my brain just gets too full at times.  We had another good day today.  Jerry has been eating non stop.  I'm one of those that has to know WHY this is happening.  The only thing different the last few days is he's on an antibotic for a sinus infestion. 
 
Pink Grandma I know I owe you a call and hopefully soon when I'm not so tired.  If Jerry keeps up this energy increase he can help himself more. 
 
 Butterflythree I'm calling first thing Monday to get those lap results. 
 
Hopefull2 As far as muscle cramps Jerry had them so bad at time he would scream in pain.  I would be up all night pounding on his legs and arm and entire body at time.  You could actually see the cramps moving through his entire body.  When it happend in the hospital the nurses couldn't believe it because at that time his potassium was NOT low or high.  The only think I could figure out was that it was from the diaretics taking all the fluid out of his muscles.  Like when a football player gets them when they play in the hat.  The only problem with my husband they couldn't give him fluid because of his acites.  It was crazy.  Finally a kidney Dr. came up with a drug they use for restless legg syndrome.  Its called klonopin.  When the cramps were real bad he had to take it three times a day .  It did give him some relief.  He doesn't take it now because as his live transplant Dr. will say he is comander and chief and he only takes what he prescribes!!!
 
Hep93 Jerry has never been offered potassium pills and I'm not sure why.  I do know early on I gave him potassim pills over the counter when he would scream in the middle of the night.  I thought the GI Dr. was going to bite my head off!!!  So I learned my lesson.
 
Again Thank you all and God Bless 

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 12/8/2007 9:52 PM (GMT -7)   

 I am sooooooooooo glad that your husband has had a little reprieve and is eating and feeling better. I truly hope that it continues and I will pray for that. I know that it is hard sometimes to get information and then retain it. Sometimes we just get into the overload mode. I think that's pretty common for most of us. My kids always say it's TMI which is TOO MUCH INFORMATION. You just do whatever works for you. Keep us posted and if there is anything I can do just ask.

                                                      Shelly


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/8/2007 10:31 PM (GMT -7)   
"I thought the GI Dr. was going to bite my head off!!!"
They like to be in total control of the patient's meds...and giving the wrong thing could possibly do damage. The OTC potassium pills, I think, are too low a dosage to do much anyway.

"Like when a football player gets them when they play in the hat."
Okay, that one took me a minute to figure out you meant "play in the heat." LOL! These typos can really offer comic relief at times. On a fan site I belong to, one lady talked about the concert's creaming crows. She meant "screaming crowds," but they have ever since remained "creaming crows." :0

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/9/2007 8:54 AM (GMT -7)   
Exhausted, I am really glad to hear that your husband is feeling better. Maybe the sinus infection was making him feel so poorly. I know when my husband gets them or any kind of infection he feels really bad, no appetite and very tired.

Shelly, Thanks again for the info. My husband says that it is just pain in his legs, not really muscle. I'll be so glad to get his labs back. I hope you are doing ok.

Hi Connie, I hope everything is going good for you.

You are all in my prayers.
Butterflythree
 
There is always hope!

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