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bostonmike
Regular Member


Date Joined Jan 2010
Total Posts : 166
   Posted 2/3/2010 9:12 PM (GMT -7)   
Good Evening,
 
       I just read that 90% of people with liver cirrhosis and have acsities can be controlled by medication,duretics etc. My doctor changed my meds 2 weeks ago from 40 Furosemide and a new drug Amiloride 10mg instead of 50 mg. Spironolactone. a week ago I had a follow-up visit and told him that the new meds were not decreasing fluid retention. I gained about 3.5 or 4 puonds. All water weight. He doubled the dose to 80 mg.'s of Furosemide and 20 mg.'s of Amiloride plus 400 mg. of magnesium oxide an OTC drug which I started the previous week. I called him tonight to let him no there is no change. I am up another 4 pounds. All water weight and have been experiencing a constant pain on my left side just below the rib cage from the pressure of a much distended  stomach. At times the pain is really uncomfortable. He is adding a drug Deroxiline and reperitol to my regimen to start tomorrow. I tried to look these drugs up and could not find them. I am not sure if the spelling is right or if I heard him right. One of them the repiritol is for cramping, which I experienced some of last night. So, I guess I am part of the few, the 10% because I cannot getthis ascities, edema and fluid retention under control. I am really getting bummed. It has been 3 months of juggling meds,strict sodium diet and water intake. tomorrow I start a  one and a half liter fluid intake instead of 2 liters which is hard but not impossible. I had a feeling when the 40 mg. of Furosemide stopped working like the miracle drug it was for me in August thru the end of October i was in trouble. The only thing that gets me is I have symptoms: Tiredness and weakness from meds, some bruising in the feet and ankle area. I do not have nosebleeds, but sometimes the dryness in my left nostril can produce some blood when blowing my nose and sometimes in the right, belly pain and discomfort from ascities, itching in legs,back and stomach, fluid buildup in the legs, or edema  and in the belly, or ascites. I do not have: Weight loss, yellowing of the skin or jaundice,  bleeding in the stomach or in the esophagus, the tube that leads from the mouth to the stomach, or confusion. No encephalopathy or some of the major effects from hep c,cirrhosis and ascities. The fluid retention just makes it hard to move around, legs are stiff and tight, stomach always in the way. It's hard walking or getting in and out of the car. I stay in too much. The weather does not help. Would like to get this under control. Thanks for letting me vent! Better days ahead, I hope. 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/3/2010 9:27 PM (GMT -7)   

Mike, do you have these drugs in hand?  If so, could you please give the exact spellings?  The closest I could find is duloxetine (Cymbalta), an antidepressant, and Risperdal, a psychotropic drug.

Who prescribed these drugs?  Has a TIPS procedure been mentioned at all?  That is what is usually done when diuretics and other measures are not working.

Hugs,

Connie



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

Post Edited (hep93) : 2/4/2010 2:05:40 PM (GMT-7)


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 2/3/2010 9:47 PM (GMT -7)   
Mike I am with Connie about asking if they have considered a TIPS. when Dougs fluid was that bad, he actually sloshed when he walked and would lose up to 40 lbs after being drained. He would get admitted for two days of drainings and albumin IV. They did his TIPS Dec of 2000 and it made a world of difference till March 2008 when they had to narrow it due to increased ammonia levels got harder to control. I met alot of patients at BI that had great success with this for years. The more meds you take the harder your already ill liver has to work. At one point he was on 120 furosimide and 100 spironolactone plus mag ox.....watch your fluid out put!
Sue
When I started counting my blessings my whole world turned around.


bostonmike
Regular Member


Date Joined Jan 2010
Total Posts : 166
   Posted 2/4/2010 10:30 AM (GMT -7)   
Correction

I picked up the prescriptions early this morning. He must of made a mistake about the diuretic. The diuretic I got this morning is 5 mg. of Metolazone, I take 2 daily 10 mg.'s, on top of 80 mg.'s of Furosemide & 20 mg. Amiloride and Ripinerole 0.25 mg. 3x a day for cramping with the OTC 400 mg. Magnesium Oxide. He talked about the TIPS at my 01/28/10 follow-up consult which he is trying to avoid , as well as another paracentisis. At least he is making an attempt to juggle the meds and find the right combo. That is more than the doctor at Leahy did. If this does not work. He may change me back to the Spironolactone and hope the ripinerole works good enough to cope with the cramping. I tell you. I am ready for a paracentisis if this all does'nt work. Anything to feel comfortable. The doctor at the Leahy was against doing the paracentisis too. I told her if you cannot do anything for me isn't it therapuetic for you to make me comfortable. I feel like I talked her into giving me the paracentisis. If you have any feedback or experience I would appreciate the replies. Thank You. Have a great day.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/4/2010 2:04 PM (GMT -7)   

Mike, you are right.  He prescribed another diuretic (metolazone) and a med for cramping (ropinirole--note correct spelling.)  I feel frustrated for you.  However, they never drained me, either, except when I had a fluid pocket after an incisional hernia surgery and the drain clogged.  They had to drain the pocket before placing another drain.  But for the ascites and edema, they just kept increasing the diuretics and finally it did go away.  My feet were soooo painful when they were swollen.  It's been over 2 yrs. since I had a fluid problem, but I believe all the swelling damaged some nerve endings on the top of my feet.  They are very sensitive and at times really itchy.

Give this new regimen a try, but if it doesn't help within a week or so, I'd really push for paracentesis or the TIPS.

Hugs,

Connie



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

Post Edited (hep93) : 2/4/2010 3:38:24 PM (GMT-7)


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 2/4/2010 3:11 PM (GMT -7)   
Mike, Last summer, before I got a new liver, my legs were so swollen, I was unable to bend them at the knees. I had put on more than 20 pounds of fluid and felt horrible. My PCP put me in the local hospital, gave me 80 mg of spironalactone, iv lasix once a day, iv albumin and only let me drink a half litre of water a day. I lost 27 pounds of fluid in 6 days. I'm not saying it will work for you, but it did for me. Due to the fluid in my legs, there was no way they could drain it any other way. When I was released from the hospital, I felt great. Two days later my MELD score had elevated from 18, to 24. The next day I got a transplant at MGH. Who's your doctor there? Good luck! **David**

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 2/4/2010 3:36 PM (GMT -7)   
Mike, I know what you mean about lahey, they wouldnt drain doug till I called saying he couldnt breathe and local hospital was very intimidated with all Dougs issues they didnt want to do it! Yet funny thing when we switched to BI all of a sudden we found local specialist were more willing to help. I think it is the Dr's that make a difference. I have heard good about MGH, they do have to try everything else first as they dont want the risk of infection and other things going wrong. Try some warm compresses for areas that hurt the most and a good salve or linement for the skin in the tightest areas. I dont know if your having backaches from the weight in your belly but I bought Doug a belt used for pregnant women as it was wide in the back and scooped down in the front and that worked great. I hope the new meds help you alot
Sue
When I started counting my blessings my whole world turned around.


bostonmike
Regular Member


Date Joined Jan 2010
Total Posts : 166
   Posted 2/8/2010 10:20 AM (GMT -7)   
Good Morning,
 
      David, when the 2 paracentisis were done at the Leahy they took 5 liters on 11/30/09 and I had 20 pounds or more fluid at that time. I lost about 10 to 12 pounds, but the nurse who performed the para said, "You still have alot of fluid" but I did feel a big difference and had more mobility. Even after the 2nd para on 12/14/09 they took 5.5 liters and I still had fluid but that made a big difference. I lost another 8 to 10 pounds and could tie my own shoes  and wash my feet in the shower. That lasted 2 to 3 weeks and gradually the ascities comes back. I really felt a difference in my belly but the my legs were still stiff and hard to bend. The fluid was still noticeable in my upper legs, mostly around the kneecaps. Now, I am back to needing help from my girlfreind to get pants on, socks on, and shoes. I can do it myself, but it takes alot out of me just to do something that was once so simple. The stomach gets in the way and effects my breathing making everything easy much harder to do, like walking upstairs.. I might of answered on another thread who my MGH doctor is, Dr. Alan Mullen and I wish they would have admitted  me and do the procedures that were performed on you instead of juggling meds. My doctor also talked ab out TIPS for an alternative, but he said you really do not want to go that route because they have to operate and open me up. This is how this all started 7 months ago, my gall bladder was removed and now all these problems. I was asymptomatic until 07/09/09 the day of the surgery and I made the decision to have it removed because my other gastro/liver doctor told me I would run into many problems after they found gallstones and I have Hep C which caused the gallstones and it would be a routine operation. There are no routine operations in your midsection. I do not want to make a big mistake again with the TIPS although I heard and read some have had success with it for many years. Hope you and everyone else is doing well. Thanks.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/8/2010 11:49 AM (GMT -7)   

"There are no routine operations in your midsection."

I'll say a big AMEN to that!  I haven't been the same since they cut me from side to side and from breast bone down to the navel (rt. lobectomy and 2 incisional hernia repairs at the midrift.)  I pooch out above the naval and just feel "weird" in the upper abdominal area.  Sometimes when I bend over, I can feel my intestine get twisted or "caught" and it takes a moment of relaxing for it to return to normal.

Mike there is a "reacher" or "grabber" you can get at Walgreen's or most any drug store.  It allows me to pick things up from the floor easily.  I also use it to hold up a pants leg.  Additionally, I have a contraption that allows me to put on my socks myself.  You would probably need to contact a medical supply house for that.  It was given to me at rehab after my last hip revision.  The sock goes over it and the foot goes in it, then you pull the cords on the side and voila--the sock is on! 

I mentioned TIPS because that is what is usually done when nothing else is working.  At that point, the benefits outweigh the possible risks.

Hugs,

Connie


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


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 2/8/2010 1:43 PM (GMT -7)   
bostonmike, You did give me your doctors name. I can't find it on the MGH website. I'll try some other things to get info about him. The doctor who got the fluid out of my legs was my PCP, here on island. He notified MGH docs after it was started and they had no problem with it. But, they weren't the ones who thought of it. Who is Dr. Mullen's PA or nurse-practitioner? I found they are more attuned to working with patients. And, they have more time to talk with you. I'll get back to you after I do a little research on the doc. Stay with it. **David**

bostonmike
Regular Member


Date Joined Jan 2010
Total Posts : 166
   Posted 2/8/2010 8:06 PM (GMT -7)   
Thank you for replying. My MGH doctor is not on the website. All I met associated with him is Dr. Michael Thiim and the medical asst that takes my weight, BP and gets the Medical Records in order before he sees me. I did not catch her name only met her once. I saw my PCP in January and he just said it will probably take some time to get better. I tried to change to an MGH PCP due to an insurance change in 12/01/09. There was a 2 to 3 month wait,so I just stayed with the PCP I had for last 2 years. Today I gave blood requested by my MGH doctor because I ended up in the ER Friday night. He called me today and said my sodium level is 125 and if I feel dizzy or sick to get to an emergency room, until he could see me this Thursday for bloodwork and to discuss my meds. So here we go again, more med juggling. He says I got to find the right combo to get fluid out of your belly and legs. He sounded concerned about the low sodium and to cut my meds in half and keep water intake to 1.5 liters until he sees me. Do you think I should change my PCP to an MGH physician? I figured all the moving around from PCP to PCP is not good . He has all my records for the past 2 or 3 years. I feel better today and my appetite is getting back to normal. Bad Weekend. Thanks for listening.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/8/2010 9:06 PM (GMT -7)   

Mike, I'm glad that the MGH people are staying in contact with you.  As to whether you should switch to their PCP, I'll let David address that since he is familiar with MGH.  I would like to mention, though, that Dr. Mullen appears to be a gastroenterologist (GI doc) and not a hepatologist.  Who are you seeing on Thurs.?  I suggest you ask to be transferred to a hepatologist.  They are much better equipped to handle ascites and all the complications of liver disease.

Good luck and hugs,

Connie



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

Post Edited (hep93) : 2/8/2010 9:12:45 PM (GMT-7)


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 2/8/2010 11:05 PM (GMT -7)   
bostonmike, As far as your PCP is concerned...do you trust him and has he helped you. You must have some feeling as to whether your PCP is doing all he can to make things work. My PCP, along with the folks at MGH, never made me feel as if I was neglected. I know they were every bit as frustrated as I was, when things weren't working out. They never quit trying and eventually the fluid in my legs was (mostly) gone. However, so was my liver and that's when I received a transplant. If things aren't working, it might be because your body is "jumping around." What I mean is that my conditions were all over the place and while I had/have complete confidence in all of my doctors, for a while they tried everything to little avail. Dr. Thiim has good credentials from what I see on the MGH site. Stick with it, this isn't a simple fix. I went through 7 years of not feeling great. All you can hope for are doctors that will work for you. Let them see that you'll work as hard as they do. That's all you can do. If things don't begin to get better in a week or two, ask them if you can come in for further testing to find out what's not working. That's what I would do, though I never had to push it, they were proactive. You might even ask for a second opinion, but from what I was told, the liver people sit down and discuss all of their patients, weekly. Be well. **David**
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