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Posted 5/12/2013 2:07 PM (GMT 0)
Good morning boardies,
So...do I go to the ER for this?

We have good and bad news.

We have been moving for the last couple of weeks. My husband, themister, has improved mentally the last 5 days. HE is gone. This has been a remarkable change from how things were the last 4 months (post TIPS). He has cut back the Lactulose to 3 doses per day, along with Xifaxan. The only meds he takes are Nexium, a blood pressure pill, Xifaxan and Lactulose. We have not got an appointment with a doctor, (or the transplant eval yet) so we would need to present at an ER if it is needed.

Until the last 3 days, themister has not had more than VERY, very mild edema in feet and ankles. No one worried about this. No asites. But, with the move and lack of HE, themister has been walking, helping me put the house together, wearing flip flops, taking walks. Instead of athletic shoes or slippers (with socks), he goes bare foot on inside tile floor, or in rubber flip flops. His feet and ankles are pretty big, and darned swollen and uncomfortable. He said they feel like they are going to pop, they itch, and they are red. I am thinking I should run and get some TEDS and put him in athletic shoes again. Basically....I am scared and need advice from you experts. Hugs, and Happy Mother's Day to the Mom peoples.

Post Edited By Moderator (hep93) : 5/12/2013 5:42:00 PM (GMT-6)

Posted 5/12/2013 2:58 PM (GMT 0)
Not sure it is an ER emergency

They will probably add a diuretic like lasix

An ER visit would likely be bleeding that doesn't stop quickly from mouth or rectum! Fever over 101. Endless sleeping without being able to rouse him so he'd get dehydrated . Some will fall into coma.

With tips the edema is generally better

Who did the tips? Can you call them? Ask the oncall doc or work their thoughts

Is there any chance the tips could be malfunctioning? Look that up.

If you do go to the er, can you go to the er at the transplant hospital.? I would drive the two hours to u miami hospital rather than my community hospital and we got pushed up on the evaluation because he was THERE. he had a cardiac cath and kidney consult and the process moved pretty quickly after that
Posted 5/12/2013 3:13 PM (GMT 0)
hi Miz

First I will tell you what I personally would do in my case, then I will make some other suggestions. Only you and hubby know his exact situation.

I would go to bed or lie on the couch for the rest of the day. Because the swelling is caused by water and not blood, keeping the feet elevated above the heart wont help much, but can give some relief because of the reduced amount of total fluid in the feet. Key is just staying off the feet. For itching you should get a product called Sarna, its a lotion that comes in a pump bottle. Its great on any sort of itching. I use it on my waist as the need arises. Good to have this on hand.

First thing Monday (tomorrow) morning I would call my hepotologist for instructions.

Now, if hubby has a heart condition then taking him to the ER is probably best, as edema is also related to the heart. If the pain becomes too much to bear I would also take him to ER. Additionally, there should be someone on-call for your Doc, so calling him will put you in touch with a Doc today that you can speak to on the phone.

Good luck,

K
Posted 5/12/2013 3:34 PM (GMT 0)
Thanks Mama,
I did not even think of a TIPS malfunction. More research;)
Hugs, themiz
Posted 5/12/2013 3:55 PM (GMT 0)

Keirstin,

Thank you for the suggestions. It makes sense he had little swelling since he has been nearly bedridden so much of each 24 post TIPS. His MELD was 14 in Feb. We moved into this home, this state...literally, 4 days ago. Two days on the road prior to that. We have not established with any physicians in AZ since we did not have the packet until this week. Of course, this is the time to have a "situation".   Thanks again for the info. Have a great Sunday ;) themiz


Post Edited (themiz) : 5/12/2013 4:29:45 PM (GMT-6)

Posted 5/12/2013 8:34 PM (GMT 0)
TheMiz, it bothers me that your hubby has redness. If you see blood blisters, or water blisters that are weeping, take him to the ER.

I agree on keeping the feet elevated, or at least stay off of them. Does he have TEDS? (Compression stockings?) Since he is not on Lasix, that would be a good option. I do think he should see a doctor this coming week. I went through a huge amount of edema in my feet and ankles that went to my calves and shins. I had water blisters on the left extremity and blood blisters on the right. The blood blisters opened up and I had copious amounts of blood running down. I developed an ulcer on my rt. shin, which required home health nurses for many months and took 9 mos. to heal. I still have a scab and the redness has not gone away and probably won't. This was post-transplant and I was/am immunosuppressed.

TheMR may not have such a dire condition develop, but I wanted you to know of the possibility and possible treatments to prevent it from getting worse than it is now. He may be placed on a diuretic if he sees a doctor.

Hugs,
Connie
Posted 5/12/2013 8:58 PM (GMT 0)
My hep told me that increased edema in the ankles and feet is a common side effect of the tips procedure. After my tips, I had to increase the dosage of my spironolactone from 50 to 75 mg. Lasix remains at 20. My swelling is manageable with these dosages although I elevate my feet as often as I can during the day.

Susie
Posted 5/12/2013 10:27 PM (GMT 0)
Thanks Connie and Susie,
Following Kierstin's advice to lay down today. He is watching 'guy flicks' and I have tried to totally ditch sodium today. Susie, I also read up on swelling post TIPS. He is not on a diuretic. I figure he will need one. Even with this moving, I do not choose to ignore the most important person...the guy fighting this disease.

Themister has not needed TEDS, but guess who now will get some. He does seem swollen into the knee area. Should I get the pair just below the knee?

All of you are so very helpful and compassionate to me....for him. I would make you all dinner, if only I could. Hugs, many thanks.
themiz
Posted 5/12/2013 11:49 PM (GMT 0)
I have worn both the up-to-the knee TEDS as well as the ones to the top of the leg. The shorter ones are more comfortable. The other rolls down and cuts into the skin. Since themisters edema seems to be below the knee, that would be the most reasonable type.

Best of luck!

Connie
Posted 5/13/2013 2:23 AM (GMT 0)
It is 7pm. Themister has 100.4 fever. His normal temp is 97.8
Does fever and edema have any connection. Let me mention it is about 100 degree's here in Phoenix. My husband has been sitting outside in the sun and enjoying being warm, something he has not been since TIPS. I really want to think this is sunburn and minor dehydration due to climate change and the meds (Lactalose and Xifaxin). He does not "feel" sick, nor want to be lying down today....but he did do it because you guys said it helps.

Would love the opinion from men on this board who are the person with the disease. This goes to that machisimo thingie. I am so trying to let him make his own choices when his brain is clear. THAT feels good for me and him. And.... it is his life, and he wants to survive. He will defer to my opinion...yet really identifies with the stories of Ziff, the steel beam walker, and David, the tile setter. (It must be a guy thing?)

He does not think "this" is hospital worthy, and has a wait and watch attitude until morning. I am conflicted. Luckily, we moved where hospitals do not require a 3 hour trip for a community hospital...with no hepatologist, but a gastro team we were pleased with.

Thanks everyone. Hugs, themiz
Posted 5/13/2013 3:11 AM (GMT 0)
Keep an eye on him, get the teds, keep his feet up. I got to a point where I learned to sleep with my legs elevated. My legs were filled with fluid. At one point my pcp had me in the hospital with IV lasix and albumen for a week. I had gained 27 pounds of fluid in my legs. Three days after I got out of the hospital, I got "the call."
Posted 5/13/2013 3:35 AM (GMT 0)
If it was the sun, his fever would be going down now that he has been inside for awhile. Its rough not having a hep doctor yet, so if there has been no improvement on the swelling and the fever is persisting, I would head into the ER to check things out. Clearly something has you very concerned. Tell Mr. I am sorry for my missing Y chromosome.

-K
Posted 5/13/2013 1:03 PM (GMT 0)
 Hey Miz , I know that I still tend to over do things around the house and it does comes with consequences . If I am on my feet actively for more than a couple hours my ankles tend to swell up to my calves . Don't want to give away any man secrets but I try not to mention to my wife when this happens ...... She rides me enough about slowing down a bit .

 Considering he knows what he's up against if he fudges the line on activities I'd say he is the best judge of taking a trip to the ER or not . It's hard to not finish a task that seems remedial by your old standards , Unfortunately for some of us ( My self ) it takes our bodies to dictate the finish line . He'll learn , I did and still do . As mentioned above the more worrying signs are bleeding and increased Encephalopathy if it occurs . Hell , Just keep doing what your doing Miz . Us fellas don't know how to act when our wives aren't freakin out about something tongue .

 Ziff

Posted 5/13/2013 3:27 PM (GMT 0)
Here is the story about my partner, Mike, who had edema bad in legs prior to transplant.

He worked for many years in an airplane engine factory as a jet engine assembler...was on his feet all day...and couldn't do that once he started downhill with Hep C. Then he worked in an office with computers, and he could not do that after time, because he didn't have the mental capacity any more.  Then he worked in an office produce store, one of the huge national box stores, and couldn't do that any more as it was too physically challenging. He has been "retired" many years.  He is 63.

He worked out a formula with his TP coordinator for the edema. They determined his "goal weight".  If he went up x pounds, he took more Lasix on a sliding scale. He went down again, they reduced the Lasix. He took the other one all the time...spironolactone...the one that doesn't mess with your potassium level.

He slept with a large triangle pillow under his legs...only about 3 inches high at the end, but long, so he didn't hang over it.  And we got a recliner that he uses to this day.  Especially if he is noticing some swelling.

He never uses table salt, we stay away from fast food, and don't each much junk or prepared food...too much sodium.

Let us hear from you.

Hugs,

Carol

Posted 5/13/2013 3:45 PM (GMT 0)
Carol , You bring up a point with the diuretics that I've recently asked my physicians . I have asked if I should be taking diuretics and explained the situation to them . None of them suggest diuretics but to just get off my feet and keep  them inclined till it subsides . I've caught some flack for not watching my weight on my last visit and acknowledge my diet hasn't been as strict as it was a year ago ..... Hmmm , Maybe I need to go back to a tighter sodium level again . It's easy to get off track when you start feeling better I guess .

Ziff       

Posted 5/13/2013 11:49 PM (GMT 0)
Hey folks,
Themister weighed in at 198lbs last night. He was 175lbs two years ago. 180lbs last year...190lbs post TIPS. Last night??? Wow! Nearly 200lbs. He stayed in bed, elevated footsies, fever gradually going down by the time I could not stay awake to check. Remember, I have just moved 19 hours with a UHAUL, dog, and sick husband. Unpacked the entire house, and had a bunch of service types in and out for this and that.

This morning, themister was cool, got on the scales and was 185lbs!! How does one person loose that much water in one night?!? This disease is absurd.

Sorry I did not get on here earlier to update. It is now 4:30pm, 100 degree's, and "Mr. Cankles" is back. Not as bad, but swelling again. No fever. He "feels" great. H.E. has been gone, and his lovely~~~ normal personality.

To update a bit more. I reached Mayo AZ this morning. They got the insurance (looks good), sent the fax for the medical records today. I will keep you updated. The pre-transplant person assisted me with how to find what doc's for themister with his insurance plan.

Thanks for getting me through my panic. I know things will run easier once I get established with a medical team. You all saved my sanity. And Keirstin...I have always had issues with my missing Y, as well. Your input on what worked for you got him in a prone position, post haste. Hugs boardies. themiz
Posted 5/14/2013 2:41 AM (GMT 0)
You need to find a good hepatologist nearby. That's critical, as you've seen, fluid fluctuates quickly. Mostly for the worst. At in my situation and most of what I've seen here. Lasix and spironalactone help, but unless themister's liver gets better, which sounds unlikely, this problem won't go away. Not trying to bring you down, but you need to be aware. Your man needs to lie down and keep his feet elevated as much as possible. When I kept my feet elevated, even overnight, within an hour of getting up and standing, they'd begin to swell. Eventually, my entire leg(s) would blow up. I never had fluid in my abdomen, just the legs.
Posted 5/14/2013 7:56 PM (GMT 0)
David, thanks for the good advice and personal experience regarding swelling legs. I know the reality of this disease, know he will not get better without transplant. It does not bring me down to talk about it. The sadness, and exhaustion at times, does get to me, but I know he is the one living the disease.

Some good news.Today I got themister an appt. for 5/21 with the HMO PCP (on the new Medicare HMO). His office is a mile from here. Medicare originally assigned me to one 45 miles from here. I got that fixed, then we moved on to appt. We need to go through their system. That requires referral from PCP for all specialists. Fine :( We start there. If needed in next 7 days, we go to ER. I want to be close to his main medical docs. We need a hepa and gastro real close by....that is why I picked this neighborhood to live in. He only got the new insurance May 1. I called Mayo AZ May 1. Moved over 1,000 miles, unpacked, and kept fingers crossed on setting up his appts. I am glad the HE subsided this week, but distressed about the new thing...swelling. Thanks for the supportive words and advice. It helps. Be well, themiz
Posted 5/14/2013 8:45 PM (GMT 0)
Congrats on all you have accomplished.. and you're on target.. just keep hitting those balls back as they come at you.. take a deep breath and go at it again. It's good to hear that you made the move. This will seem so much easier after all of that moving business. I'm also glad to hear the HE has subsided. That gives one some respite. Hang in there. Sandia
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