question about traveling and edema

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aimsgirl16
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Date Joined Jun 2008
Total Posts : 1469
   Posted 8/12/2010 5:01 PM (GMT -7)   
This question is mainly for the people who have or had issues retaining fluid. I have gained 24 pds from fluid (since last week) due to my kidneys spilling lots of protein and loosing kidney function. Yes, my doctors are aware and are monitering very closely, getting blood work to check things every 2 weeks. My prednisone has been increased again and so far it is not helping, the swelling continues to get worse. I can keep a 1/2 in indention in my ankles for 15 minutes (no exagerating) and if I get playful can dimple in a smily face that will last for several minutes. The fluid is now past my knees. Needless to say tomorrow I have to drive 7 hrs to Birmingham after I get off work. I know it is recommended to keep your legs up when you are retaining fluid but that won't be possible since I will be driving by myself. Can't even keep one leg up since i have a 5 speed.
 
What are you suggestions to keep my legs from exploding from fluid (feels like they are about to any minute) I can't take lasiks or water pills cause they cause the opposite effect. I got up to 80 mg and didnt pee except once each day and my legs kept getting bigger and bigger. It honestly feels like I am turning into jello with all the jiggeling my feet and ankles are doing!! Just looking for some good suggestion :)!
 
Thank you my friends yeah
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran


If God brings you to it, he will get you through it!!

Lynnwood
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Date Joined May 2005
Total Posts : 7019
   Posted 8/12/2010 6:11 PM (GMT -7)   
Is there any way at all to bribe, conjure, or otherwise convince a friend to drive you? I just don't think that sitting with your legs down for that long is at all wise.

I haven't had those kind of issues myself, so can't really help with that part of it...please try to find another way to travel or cancel the trip. Bus? Train?

Be well & be safe,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/12/2010 8:25 PM (GMT -7)   
Ya know ames We talked about this this morning. and I hadn't thought about it again until just a few minutes ago and then I saw this post. Even before reading it I got a very bad feeling in my 6th sensethat this is NOT a good idea. I understand that it is for someone you love and want to be there for but think of it this way she loves you too. and she wants you to be there for her. and I don't mean tomorrow. I can't hold your hand and force you not to do it but in my heart of hearts I'm saying NO if things are that bad you should be in a hospital not driving a car! I know the smilie face one I know all about the applying pressure and being able to tell how much water you are gaining. Ames remember kidney failure is for keeps. I think you should all her and tell her you want to be there but tell her your situation. and if you are not getting rid of these fluids monitoring or not you need to see another doctor. It's like we all tell others we do what we can do. Putting your life on the line is not worth it for anyone. because you are good to anyone if your dead!
please rethink this your only 22 there will be a lot of decisions to make. you have to make the right ones.
love you and praying for ya
carol
p.s. anything I screwed is due to taking my night pills already. so I'm not doing spell check lol
love ya
furosemide,spironel,lisinopril,lortab,azithromyazin,detrol.nexium,temazepam,predisone,plaquenil,propanalol
citracal,pottasium,vitB12 ,iron,xopenex,advair,spirivia,soma,b12 shots,Vitamin D, cybalta
Dx lupus, scleroderma, pos. fibro, high bp COPD, need left lung transplant. cervical cancer survivor, osteoporsis, Jesus is a friend of mine.
"We come into this world crying while all around us are smiling. May we so live that we go out of this world smiling while everybody around us is weeping."

redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 8/13/2010 3:11 AM (GMT -7)   
I agree with Carol ames. You should be in the hospital not trying to drive 7 hours to see someone no matter how important they are. If this were to see a doctor I might feel differently but the truth of the matter is you should be in the hospital getting treatment that is more agressive not doing something so stupid you have to know it is a bad idea. I am not attacking you here, I am just trying to make you understand that your life is on the line here and the damage you do today is the damage you might NOT be able to live with tomorrow. Kidney involvement can kill if it gets bad enough trust me I lost 2 family members to it. My doctors monitor me regularly simply based on family history because it puts me at higher risk of eventually defeloping problems myself. You are too young to be killing yourself because of one bad choice. Please please please don't go on this trip and instead get on the phone and find a doctor who will be more agressive in treating your kidney involvement and save your life and kidneys. That is what this person you are planning to see would want if she understood what is happening with you- that is if she cares at all about you and having you around in years to come.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 8/13/2010 4:15 AM (GMT -7)   
Hey guys, thanks for the advice. The sad thing is, we can't do anything more agressive. I was on Imuran when I went into kidney failure the 1st time. I have tried cellcept at 2500 mg and couldnt tolerate it and it did nothing, prolly cause it came back out so quickly and we played around with the dosage several times. ONce again had Kidney failure on cellcept. Then we did Cytoxan for 8 months and not much improvement but I started to have liver issues so we had to switch to something less toxic so now I am taking Cyclosporine. I have 2 of the greatest docs and they have told me its ok to travel to the wedding (but they didnt know I wasnt flying or riding w/ someone. The original plan was to go down Wednesday with the rest of my family for my brothers graduation from OCS but I couldnt get off of work. And to answer your question Lynn....i already have 18 friends/family down in B'ham so I don't think I can get anyone else to go especially this short notice.

This is my cousin's wedding and I really can't miss it. We grew up together. She is a year younger than me and we were always getting in trouble and getting in things we were not supposed to...you know, almost like the sister i never had. I will call both of my rhuemy and my nephrologist and tell them I will be driving and see if the don't recommend it or if they have any ideas. Also, sine I work at AAA, I might be able to get a deal on a flight (I just despise flying...LOL) depending on how expensive I might do that. Some of my family is staying about 10 minutes from the airport so that might be the best option!

Thanks again my friends :)
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran


If God brings you to it, he will get you through it!!

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 8/13/2010 5:27 AM (GMT -7)   
Amy, flying sounds like a great option. I agree with Redrose: please, please, please don't drive. I get edema occasionally that is bad enough to stretch my skin until it hurts. I can get a 1/2 inch indention, but it goes away quickly. I would never consider driving 7 hours when my edema is bad and I sure hope you can get a flight. Take care Sweetie. Love ya, Donna
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease. Cellcept and lots of other meds.  Donna 

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 8/13/2010 7:16 PM (GMT -7)   
The primary treatment for proteinuria is an ace inhibitor like lisinopril. Lasix is used as a way of reducing the swelling but the other drug is the main treatment.  If you have that much edema I would not travel, particularly in an airplane until you get it under control.  I gained 20 lbs from it but meds eventually got it under control and I still take them 5 years later.
 
Even a long car trip is not a good idea until you get things under control.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 8/16/2010 9:36 AM (GMT -7)   
Got a question for ya Bill! I am currently on 20 mg of lisinopril but 30 mg made my potassium go up to high and my BP would bottom out. Is there somethign else that you know of besides BP medicine that helps treat proteinura?
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran


If God brings you to it, he will get you through it!!

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 8/16/2010 12:58 PM (GMT -7)   
Amy,
 
There are a number of other meds, some of them not Ace inhibitors that are used to treat proteinuria.  Have no experience with them so can't comment.  Here is a site that lists a number of meds that are used to treat it.  You might go to your doc armed with questions about other meds.  Are you seeing a nephrologist or your GP?  Pays to go to a specialist when you have unusual problems I have found.
 
 
Good luck.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 8/16/2010 2:44 PM (GMT -7)   
Thank you bill, this will be very helpful! Yes I am going to a nephrologist and my rhuematologist is also very active in helping treat the nephritis and answering questions, etc!
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran


If God brings you to it, he will get you through it!!
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