Greatest Tool in the Fight Against ESLD

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pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/4/2009 4:52 AM (GMT -7)   

Hello everyone,

 

I hope this message finds you well.  As most of you know, my husband received a liver transplant on January 21, 2009.  He continues to do very well.  Through the couse of this ordeal, I developed a bond with the regulars on this forum.  They were a great source of support to me and now I wanted to give something back. 

 

Considering all that we’ve been through, I tried to think of the single greatest tool I had in this battle against ESLD.  I realized it was something that I do everyday (without thought) and continue to do every day since Harvey’s transplant.  It may seem simple, but you will be surprised at how valuable this information is in the management of complications you’re sure to face. 

 

You are never far from my thoughts and always in my prayers.

 

Love,

 

Penny

_____________________________________________________________________

 

As a caregiver (or patient), you may not realize the subtle changes in your patient’s condition.  This is in regard to muscle wasting and ascites.  Someone that visits occasionally will really notice a difference and might actually be shocked.  When Harvey's brother arrived late November, I overheard his phone conversations to the rest of the family . . . "It's a matter of days."  He was shocked by Harvey's appearance. 

 

You can help yourself and the doctors by documenting vitals daily (weight, blood pressure, temperature, and blood sugar) and by taking body measurements.  Measure the girth of the abdomen (around the love-handles to just under the belly button), upper arms (bicep), thighs and ankles.  Measure the abdomen in a standing position and in a sitting position.  Also note mental status on a scale of 1 to 10.  Try to do this at the same time everyday.  It will provide invaluable clues as to what is going on inside the body.  Take this information with you to all doctor’s appointments.

 

Start yourself a spreadsheet and capture this information both morning and at night.  Most medications are taken with food, so do this immediately before breakfast and again before your evening meal.  Make notes beside the date whenever medications are changed or adjusted.

 

Blood Pressure = Portal hypertension increases overall blood pressure

Weight = To monitor for fluid retention and/or muscle wasting

Temperature = To monitor for infection

Mental Status = To monitor for encephalopathy (scale of 1 to 10)

Measurements = To monitor for muscle wasting and ascites

Blood Sugar (Glucose) = To monitor for liver function* (ask your doctor)

 

*If you are already monitoring blood sugar, that’s great.  If you not, the doctor can provide you with a free meter and write a prescription for the lancets and strips.  They are expensive, but know that all transplant patients must monitor their blood sugar and take insulin if necessary. 

_____________________________________________________________________

 

BLOOD PRESSURE (BP) READINGS RANGE

 

 

 

 

 

Systolic (S) = Top number / Measures pressure when the heart muscle contracts

Diastolic (D) = Bottom number / Measures pressure when the heart muscle relaxes

 

 

 

 

 

(S)

 /

(D)

 

INDICATION

210

 /

120

 

Stage 4 High Blood Pressure

180

 /

110

 

Stage 3 High Blood Pressure

160

 /

100

 

Stage 2 High Blood Pressure

140

 /

90

 

Stage 1 High Blood Pressure

140

 /

90

 

BORDERLINE HIGH

130

 /

85

 

High Normal

120

 /

80

 

NORMAL Blood Pressure

110

 /

75

 

Low Normal

90

 /

60

 

BORDERLINE LOW

60

 /

40

 

TOO LOW Blood Pressure

50

 /

33

 

DANGER Blood Pressure

 

 

 

 

 

HIGH Blood Pressure Symptoms -

Stressed, Sedentary, Bloated, Weak, Failing

 

 

 

 

 

LOW Blood Pressure Symptoms -

Weak, Tired, Dizzy, Fainting, Coma

 

 

 

 

 

_____________________________________________________________________

 

BLOOD SUGAR (GLUCOSE)

 

Normal glucose levels fall between 70 and 150 mg. Levels typically are lower in the morning, and rise after meals.  Test for blood sugar immediately before a meal. 

 

Blood sugar levels falling consistently above 150 are indicative of hyperglycemia, or high blood sugar. Persistent hyperglycemia (over 150) results in diabetes mellitus, which is the most common disease related to blood sugar regulation failure. Diabetes can cause eye, kidney and nerve damage.

 

Chronic low levels, falling below 70, characterize hypoglycemia, or low blood sugar. Hypoglycemia is a potentially fatal condition. Symptoms of this condition are lethargy, impaired mental functioning, irritability and loss of consciousness.  

_____________________________________________________________________

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/4/2009 2:21 PM (GMT -7)   

Penny, thanks for posting this information.  If only everyone could be as thorough as you!  When I saw the title of your post, I thought you were going to say "Education."  Well, you were...but in a different way.  All of the information you have posted on the forum has been very educational and much appreciated.

I know that Harvey will continue to improve just because you are so diligent.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 3/5/2009 3:56 AM (GMT -7)   
Penny

What a wonderful post. It is so hard to see things when you are living it every day so thank you for this info.

Lucy

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 3/5/2009 4:08 PM (GMT -7)   
Penny....WOW!! Thank you so much for posting this VALUABLE information!! I am amazed at how much you have learned through this process. I pray that Harvey gets strongerr every day!!!

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/6/2009 3:18 AM (GMT -7)   

 

They say, “The proof is in the pudding”.  Well, this is the pudding!  How many times have you tried to tell a doctor that his/her course of therapy isn’t working?  Your opinions may be dismissed unless you have facts to back them up. 

 

Education is extremely important, but the vitals are invaluable to someone that knows nothing about ESLD because they can hand it over to someone with a trained eye.  Patterns will develop that give a practitioner clues as to the rate of deterioration of the liver. 

 

When I get some more time, I will amend the list of vitals to include fluid/caloric intake and urine/stool output.  I’ve been so slammed at work, but you’re never far from my thoughts.  I hope you are all doing well.

 

Penny


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/6/2009 8:47 AM (GMT -7)   
Amen to that Penny.   Once the doctors know that the family and patient is educated on the disease and doing their part, they are more apt to go the extra mile and do everything that should be done for the patient. 
 
Have a good day Penny.........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.


fortheloveofmarc
New Member


Date Joined Apr 2009
Total Posts : 5
   Posted 4/24/2009 11:30 AM (GMT -7)   
I just lost my husband to esld. I was doing pretty good at taking care of him until hospice arrived. They told me they were taking over his medical care and he was gone in two months. (He passed away on dec.13 2008) They knew nothing about the medical aspect. I was yelled at for calling an ambulance without consulting them first. When i called them first, he was passed out on the bathroom floor and they told me to leave him there for a couple of hours and see if he came to. anyway, they finally called an ambulance that brought him to the emergency room. (They told me a week prior that if I did not sign the DNR Iwas being selfish)Then hospice yanked him out of the emergency room and put him in a nursing facility where in two days he went into a coma and died. No meds, no IV's , just let him die. When I signed the DNR they told me that the only thing that meant was that if he had a heart attack, they would not revive him, but they would still give him meds etc......To this day the guilt is eating me up BADLY. I was not educated enough to know that he would go into a coma and die without his lactulose. I miss my husband soooooooooo much that there are days I don't think I will make it...........any help , advice I need to talk to someone who lost a loved one to esld........PLEASE HELP

5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 4/26/2009 12:06 PM (GMT -7)   
Welcome to the forum. You might want to start your own thread, because I fear others will miss your post because it's on PSCWIFE's thread.

I am truly sorry for what happened to your husband. Hospice generally is a godsend, but like everything, not all caregivers have the compassion or ability to tell you why and what they are doing. The thing about lactulose is that some (many I think) really get tired of taking it because of the side effects of gas, the sudden need to go, etc. So, try not to blame yourself. Love is the gift you gave your husband and he to you.

My friend is very ill. This has been going on for almost 2 years and when it began I thought she was not going to last another month. Now I understand that lactulose and the other host of medicines in the "cocktail" Mary has to take help her to just maintain. She still smokes even though she's on the transplant list (finally). She doesn't feel like eating much and when she does her choices are usually just for sweets. Everyone is different with this awful disease. I have learned that through reading this forum and researching for Mary. Today I have a little flu like thing that's got me down. I know that Mary feels like this and WORSE every day. I know that I will get better. She won't unless she gets a transplant.

So, if you can, start a new thread. You'll find a lot of folks who will benefit from your story and who will help you with your grief. There really isn't anything else like this on the internet, at least that I could find. My heart goes out to you,. The gift of each day we get on this planet is one to celebrate. Let us help you with this sad time in your life.

Sincerely,

Joan
Best friend is in ESLD, has HepC and cirrhosis. 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/26/2009 3:32 PM (GMT -7)   
Joan, just so you know...ForTheLoveOfMarc did copy her post and start a new thread.  Thanks for the suggestion and response, though.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/3/2009 11:36 PM (GMT -7)   
bump
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.

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