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bostonmike
Regular Member


Date Joined Jan 2010
Total Posts : 166
   Posted 4/29/2010 7:53 AM (GMT -7)   
turn  Good Morning everyone,
 
             Last time I posted my complaints were the usual, fluid retention in my stomach, legs, ankles feet and scrotum areas. I called my doc from the Mass General and he added a 2.5 mg. of Metalazone medication on 04/05/2010, a half of a 5 mg pill every other day. A very strong diuretic for such a little pill. I lost 7 pounds of water weight in the first 4 days, so I called the doc back to ask if I was losing the weight too fast and did not want to end up in the ER with dehydration and low sodium. He told me to take the Metalazone every 3 days. On the 15th I had a Consultation and he thought I looked great. By then I had lost 14 or 15 pounds. He and another member of the team examined me and said everything looked a lot better. They told me they were puzzled because of the fluid retention I had did not add up opposed to my bloodwork and overall physical condition. They wanted to get a hold of my liver biopsy slides to determine how bad my liver really was. They also asked me if I was following my low sodium diet or if I drank Gatorade. That kind of pisssed me off. It was the second time in a few months they asked me that question. I took the Metalazone medication a total of  6 times and lost 22 to 23 pounds of water weight ending the medication on 04/19/10. On the 20th I experienced stomach nauseau, lightheadedness and had an anxiety attack that night. I called my doctor and he said to stop the medication. I had ended up in the emergency room back a couple of months with low sodium and dehydration, but I took 10 mg. of Metalazone 3 days in a row. Later that week I received a letter in the mail and my sodium was 130, down 1 point from my last blood draw a few weeks before that. My potassium was low and he directed me to eat a couple of bannanas or potatoes a day. Also, if I gain 10 pounds to take the Metalazone until I lose 5 pounds every 3rd or 4th day. He wants me to stay in between 210 & 215 for some reason. 2 days ago , I was 203.8 and this morning 205.4 and I stopped the Metalazone 10 days ago. I hope the weight levels off and does not skyrocket back up again. The good thing is they found a drug that works and the bad is feeling all the side effects. I feel great after dumping all that water weight. The best I have felt in 5 months. My mobility is better and I can move around more freely. I am not 100%. still have some stomach distention and my legs are still a little tight, but nothing like the last 5 months. So, there is HOPE only sometimes it comes with a price and it usually is paid in pain. Perserverance helps. Never give up. I am just grateful I feel better today. Quality before Quantity. I learned all this from everyone and this website. Thanks. Hope everyone has a great day. Boston Mike turn

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 4/29/2010 8:30 AM (GMT -7)   
Mike, I know when u get questioned about what ur doing it can really send u over the edge. Doug and I went through that alot but we started to realize that th Dr's dont live with us and they have to play detective all the time, are u watching sodium, how much fluid are u taking in, what are u eating etc, doug would sometimes feel like he wasnt trusted to follow Dr's orders. All that matters is you know what to do and ur doing it and they will continue to ask. The fluid in ur scrotem and legs is hard to get rid of, one Dr told him to get alot of pillows and to not just prop up his legs but his buttocks too. That did help to move some of the fluid in the scrotem area. I wish u the best
Sue
When I started counting my blessings my whole world turned around.


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 4/29/2010 10:14 AM (GMT -7)   
so glad to hear you're feeling better Bostonmike... I think that the thing Mike and I figured out that it was a constant adjustment with nutrition... and the medication.... bananas which Mike loved... began to make him nauseous... but I'm in your corner... rooting for you... Sandi

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/29/2010 10:24 AM (GMT -7)   

So glad you have lost some water weight and are feeling better, Mike.  Just remember, all drugs have side effects...some worse than others.  I can only echo what Sue said.  They are going to ask repetitive questions.  Hang in there!

Hugs,

Connie


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


bostonmike
Regular Member


Date Joined Jan 2010
Total Posts : 166
   Posted 4/29/2010 1:30 PM (GMT -7)   
That is just it. I was told to keep the sodium under 1500 mg. daily and 1.5 liter of water, juice tea, etc... I write everything down to the best of my ability and have been registering lower than 1500 mg of sodium & 1.5 liters of water daily. I been honest to myself and worked my diet  the best I could or even better. I wanted to get better and I know too much sodium would make me blow up more than I was and I did not want that. I had a fear of ingesting too much sodium or drinking too much water. I just sensed because the 80 mg. Furosemide & 200 mg of Spirotolactone works for so many people, It did not work for me. The doctors in a round about way started to point the blame on me.. The first time they said for instance that some other patient and his wife came in and they could not understand why the meds were not controlling his fluid retention. After a few times of seeing this patient the wife told the doctor that he had a fetish with drinking pickle juice which is brine or salt water. I guess they were keeping this from the doctors for a few months. In my case the medication just was not working like it did in the beginning. Maybe, some people will sacrifice their health for pickle juice or some other food. I do not fall into that category. I want to get better just like alot of you do. Thank god they found something, the Metalazone that worked even though their is a downside to it. Well they found this new med a couple of months ago, it just needed to be administered in a lower dose. 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/29/2010 2:05 PM (GMT -7)   

Mike, the docs apparently didn't understand why the Lasix and Aldactone were not working for you, so were searching for something you might be doing or not doing that kept it from working.  I know how you feel, when you're being a perfect patient.  It would be like them asking me if I were drinking because my cirrhosis suddenly got worse, when I've been sober over 23 yrs.  Docs get frustrated, too.  They are just trying to be thorough.  Hang in there!

Hugs,

Connie


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 4/29/2010 6:09 PM (GMT -7)   
Hi Mike,  Like it isn't enough that the disease makes you feel bad.....the meds have to add to it.      But like the others I am glad that you are feeling better. smilewinkgrin    Let us know what the doctor says about your biopsy when he examines it again.  
 
Just in case the doctor hasn't told you.........Keep up the good work.   I know it's a lot of work to juggle your food,drink and meds.......It sure isn't easy.
 
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.


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 4/30/2010 5:27 AM (GMT -7)   
Rooting for you Mike... sounds like you did an excellent job advocating for yourself.... Sandi

allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 4/30/2010 1:39 PM (GMT -7)   
you are doing well looking after yourself and trying to listen to your own body. sorry I have never been involved in looking after my mum so i really do not know much about the meds to comment. Keep it up..

CGR
Regular Member


Date Joined Nov 2009
Total Posts : 64
   Posted 5/3/2010 9:44 PM (GMT -7)   
Mike,

Nice progressive, and a great approach!

I remember when Frank was hospitalized, I would bring food to him (the hospital food was terrible!) from a health food store ... all low or no sodium.

Our doctor would come in and yell at Frank for eating Chines food and not following his instructions.

He would also walk up to Frank at every appointment and insist upon smelling his breath, and ask him if he's drinking.

I know they mean well, and I can't imagine their frustration when they work hard to save someone who only insists upon furthering the destruction of their lives. Or rather, to be more understanding, trying to heal those who just cannot help but to take a drink.

It's such a difficult disease to deal with; each of them that is. Cirrhosis, and alcoholism.

I am so thrilled that Frank has no desire to take a drink. His mantra is "I want to live".

Anyway, I'm glad that you've found the support and care that the fine people on this site have to offer.

Blessings,

Rob
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