NEED YOUR ADVICE...

[Highgfr]

Hi Everyone....hope you re all having a blessed day. Trying to find out if taking florisimide ( generic Lasix ) is good or bad for ckd stage 5. Also...if you are on dialysis or had to choose the best way to do dialysis, which one would you choose and why? THANK YOU ever so much.

[Bobbiereed]

My son takes that medication every other day. He suffers with fluid retention and now is 7 years post transplant. Prior to transplant he did Home Hemo Dialysis because it gave him the greatest freedom to do the things he wanted to do. At the time he was just 22 years old. He traveled , had greater flexibility with his diet and fluid intake, and was much happier by not having to go in center for his treatments.

[Highgfr in reply to Bobbiereed]

Thank you so much for sharing. You and your son sound so strong and courageous. Glad he is doing well with the transplant. Does he tolerate the meds well ? Thank you

[KidneyCoach NKF Ambassador]

Taking Lasix depends on many things and should be discussed with your nephrologist. I have been doing Home Hemodialysis about 20 years. I did a short stint on PD. I LOVED PD, HATED in center, love home hemodialysis. LMK if I can help.

[Highgfr in reply to KidneyCoach]

Wow... you have been through it all. Thank you for sharing your experience. Do you do well on the home hemo and did you put it in your forearm or upper arm? Are you restricted and limited from certain activities and do feel wiped put after home hemo. Home hemo is what I was thinking I would do if I HAVE to do dialysis. Don't know the routine or side effects but am interested to learn. If not approved for transplant I will have to do something. Got to get rid of this fear.

[KidneyCoach NKF Ambassador in reply to Highgfr]

Yes, I do well on home hemo. I've had 14 arm accesses, more than 3-4 dozen chest, neck and groin catheters. No, I'm not restricted from activities. Because I do more home hemo (time) than in center (they do 12 hours, I do 24-48 hours) my food and fluid restrictions are none. I've traveled to D.C., North Carolina, Georgia, Alabama, Arkansas, Texas, Florida, Iowa, Minnesota. I've lived on a farm for 20 years and raised our kids. I've lived in 4 otherplaces including 2 different states. I've had great docs and nurses and crappy ones. Most of all I've learned to take control and manage my health well by educating, advocating for myself and others. I have the best husband/teammate in the world. Please checkout Home Dialysis Central

kidneyschool.org

and this book available on Kindle from Amazon. Blessings

Color book

[Highgfr in reply to KidneyCoach]

Sounds like you made the right decisions. ; 0 ) AND you live on a farm, How wonderful. I will review all that you have recommended and thank you so much. Everyone on this site had been SO helpful in sharing how hey have handled all this and it helps so very much. Bless you! We are praying for a kind yet efficient medical staff if I have to get hemo going. If I may ask, was it hard to get it set up at home. Has your fistula held up well for home hemo? Why didn't PD work for you and lastly how many hours per day do you do hemo at home? Hope it's not too many questions. Thank you so much.

[KidneyCoach NKF Ambassador in reply to Highgfr]

No it wasn't hard to get home set up in place. The training team will help you with all of the details.

As I said I've had many fistulas, grafts and catheters. I've done my own sticks, now hubby does them as positioning is difficult.

PD didn't work. For unknown cause my membrane just wouldn't remove toxins or fluid. Hey, it can happen.

Lastly, I do 6-7 hours of hemo 4-5 evenings/nights per week, so between 24- 35 hours per week depending on schedule. I worked about 30-35 hours per week for about 7 years. After that I worked same hours for a couple of years during tax season. I've also been on all sorts of boards, committees,advocacy groups in volunteering for kidney health. A mentor and certified kidney health coach.

My health has kept me limited the past year or so due to moving ,major surgery and GI bleed, hospital stay and severe anemia. On the mend now. Many projects in mind now. Getting our garden going, expanding our chicken run, revamping the coop and working on finishing touches to basement, painting etc. It's a process that will take us to end of year. Thanks for listening. Blessings

[Highgfr in reply to KidneyCoach]

Hi Kidney Coach.... thank you so much for your reply. It is so wonderful to be able to hear your story and ALL that you have done and are doing to advocate for kidney health and progress. Even with all you deal with, you give of yourself for the cause. Incredible!!! 👏👏 Thank you!!

My husband was asking me, how do I take care of the fistula if I decide to do hemo at home instead of a transplant. Can I use the arm, is the fistula easy to maintain, limitations, how long does the original fistula last, etc. I told him I know just the person to ask. ( SO much high risk medicine to take if someone does a transplant it is frightening.)

Also...if ok to ask....what is your gfr after all this time on home hemo? And after each daily hemo are you totally tired or able to have decent energy? Do you take supplements or any meds due to the hemo?

Thank you for letting me ask these questions. I know they are many and we can't thank you enough. You have helped me understand so much and am so very grateful. My hubby says "thank you" too!!

Praying you continue to heal and recover well and completely. God bless you as you continue your work. Our son raises chickens and also does meat birds. We. love the little baby chicks...they are so adorable...and sells them to people who want to start or currently raise chicken or want them as pets. He really enjoys it. Also... hope your garden turns out great. You'll have to share with me what all you grow and harvest. HOW EXCITING!! 🥕🥬🍉🌽

Again... thank you so much for EVERYTHING and for being there for SO many. 💖

[KidneyCoach NKF Ambassador in reply to Highgfr]

Oops, forgot to answer your other questions. My egfr is 0, only because I had both my kidneys removed 16 years ago. I don't get the typical "dialysis hangover" because I run slower (250 vs 550) and longer 6-8 hours instead of 3-4hours. I worked nearly full time for half my years on dialysis. Many go to college, pursue careers, raise families, start businesses, travel and more.

I do take meds but only one specific to ESRD. I also take a renal vitamin and biotin and vitamin D.

Hope this helps. Blessings

[RhenDutchess123 in reply to KidneyCoach]

You are amazing !!

[Beachgirl32]

I am stage 5 also I’m on a high dose of the generic lasix I was put on it over a year ago when I got pneumonia my and I had a low ejection faction which help bring it up I had to get it up to be approved for transplant and my nephrologist has kept me on it not on dialysis yet going to do pd when time comes which I have a feeling will be this year sometime. So you need to ask your doctor for me it a good thing because it made my heart ejection faction go up from 25 to 66 percent if you are holding lots of fluid you made need it but let your doctor help you .

[Highgfr in reply to Beachgirl32]

Best of everything to you and as you start PD. Thank you so much for your input and reply.

[allene7]

I've been on furosemide for a few years I'm stage 4 ckd not on dialysis just yet. I take a 40mg once a day and two if I'm retaining more fluid. I have swelling in my legs and ankles off and on. You absolutely need to discuss that with your doctor and he/she can help you make that decision. Best of luck.

[Highgfr in reply to allene7]

Thank you so much for your reply. ; 0))

[allene7 in reply to Highgfr]

Your welcome 😁

[Jayhawker]

This is a discussion between you and your doctor. I’d encourage you to share your concerns with your doctor. You might also ask if there are other options.

Jayhawker

[Highgfr in reply to Jayhawker]

Great advice... will do. Thanks so much!

[Highgfr]

Great advice... will do. Thanks so much!

[Sammi_n_Munk]

Hello there Highgfr! I’ve also been on Furosemide since 2009. They started me on three 40-mg tabs per day, as my fluid retention issues back then were pretty severe. But over time, they had to lessen them to two, and then eventually one, because it was beginning to burn out my kidneys (diuretics can be quite taxing on our kidneys), and it was also causing my uric acid to increase causing minor gout attacks at the time. It’s definitely something you’ll want to speak to your doctor or nephrologist about. I was told that it would cause more damage to my kidneys and worsen my gout (they weren’t kidding - I have developed chronic gout since after menopause), but I didn’t have much of a choice. I need them or my fluid will build up so bad and cause breathing difficulties as well. That’s horrible. But they did decrease it to one 40-mg per day now.

Please do discuss this with your doctor. As the others have said above, everyone is different. They may be able to re-adjust your prescription so as to minimize damage to your kidneys.

I hope you will find this helpful. All my best to you, and please do let us know how things come along. 😊👍🙏

[Highgfr in reply to Sammi_n_Munk]

Thank you so very much for your reply. Glad they were able to reduce the amount of medicine you take with the generic Lasix. My nephrologist started me on 40 mg and that’s where I have stayed for about three months. Thank you for encouraging me to talk with my doctor. I will do that and ask him if it is putting a strain on my kidney. Hope you are managing the 40 mg well and will be praying for you that you will be able to get the fluid retention under control. I would love to be able to have no fluid retention but can’t do that without something to help drain it. I get real puffy. so, Doc put me on the generic Lasix. And, sure enough, no more swelling. But I do not want it to be too hard on the one kidney I have left. So sorry about having gout. I don’t know much about it but I have heard it can be very hard to deal with. Hang in there and Lord willing it will subside. Again, thank you for your insight and for sharing your experience. It is so helpful and informative. Everyone is so generous in sharing and helping each other. If I may ask, do you do dialysis or not doing it at this time. If you are, which one did you choose and why? Any side effects? Thank you again for all of your help.

[Sammi_n_Munk in reply to Highgfr]

Hello again Highgfr! I’m glad you found it helpful! No, I’m not on dialysis - yet. I’m still managing with diet and exercise. I think the most difficult part of this journey for me was having to adjust to the bland diet. I must admit, sometimes I cave, and add cheddar to my egg whites in the morning, but I pay dearly for it later. Everything I buy in the way of snacks is all unsalted (peanuts, corn nuts, and if I haven’t had them for a long while, also unsalted potato chips - but this, not at all too often).

I cook only home-made meals and I never add salt. I do have salt in the house in case my family comes to visit and I cook something for them, but I never use it for myself. I try to get at least 30 minutes of indoor cycling done everyday, sometimes more if I feel I have a little more energy to do so. But even with all of that, and taking my one 40-mg tablet of Furosemide, I still retain some fluid. Thankfully though, it’s still manageable. I just don’t know for how long. I hate even thinking about dialysis. I know that it’ll be coming, but I try not to think about it. I would probably go for the home PD. Of course, I would have to do some research on this. I really don’t know much about it yet. I wish I could be more helpful to you.

You are always in my thoughts and prayers dear. This is a rough journey and I’m so thankful that this forum exists. I love all the wisdom and knowledge that I’ve gained here in this community. Everyone is so supportive and helpful. I wish you all the best. Please keep us posted on how you’re doing. God bless. 😊👍🙏

[Highgfr in reply to Sammi_n_Munk]

Dear Sammi_n_Munk, thank you for sharing how you are handling your diet and your routines. Sometimes it seems like I am the only one in the world having to ear this way, but when I read these messages I realize I am not alone and SO many others are working their way through these challenges.

I start tests for transplant this week but they want me to have the Covid shots and I do not want to take them. A nurse explained to me this morning about all the immno suppressants/steroids you have to take afterwards and the risks involved and it is so hard to find comfort in what she said. When thinking about a transplant it sounds so much better than dialysis but truly, which is the right one to do. ALL that medicine for the rest of your lie. WOW> Home hemo allows you to be at home and is shorter than the hook up time on PD. But I don't know how the fistula works and the restrictions there. I'm learning. My Gfr has been 11-13 over the past 6 months but I don't know how long it will be there. Been praying SO hard gfr will go up but so far it hasn't.

Do you mind telling me what your gfr is and how it has done over the past few years? You have encouraged me so much when you share that you are not on dialysis and have put it off. That is wonderful. 😃 So happy for you ...and your positive and uplifting attitude just shines. It's amazing people like you that are so willing to give others hope that are making the difference. What a blessing. Thank you for being there and for being a blessing in my life. ❤️

[Sammi_n_Munk]

Thank you so much for your sweet words! It means so much to me. Bless your kind heart, dear. I’m glad that you found it helpful. Yes, we do share so much in common in this forum, and we can find strength and wisdom in each other’s stories.

Well, this is probably going to sound terrible but, the last time I had my blood work done was in March of 2020, just before the time that Covid turned ugly. Lol. As I am not vaccinated either (too worried about the health risks), My GFR was at 31% then and I wasn’t retaining fluid like I do now. So I do suspect that I am a little worse off than before. I know I need to call my doctor and set an appointment for labs, but I’m embarrassed to admit that, as much as I am curious to know what my current GFR is, I’m just as frightened to know as well.

Today is a holiday here in Ontario, Canada (Victoria Day), but tomorrow, I plan on making that call. I have a nervous knot in the pit of my stomach, yet I know it must be done. I have also been considering moving toward a more plant-based diet. I’m already pretty much doing that, but I think it may be time to cut back further (perhaps altogether) on such items as egg whites and chicken. I have heard others here claim that plant-based is far better and easier on the kidneys. And some even say it has improved their GFR! I’ve avoided it a little because much of a plant-based diet tends to be high in carbohydrates (I’m also a type 2 diabetic). I will keep you posted on how things come along. I may be sobbing when I return! Lol! 🤷🏻‍♀️😂

[Highgfr in reply to Sammi_n_Munk]

Bless your heart. I know exactly what you mean about not wanting to know. It's almost easier to deal with it all not knowing. But then, it kind of gets to a point that we ned to know. So proud of you for going ahead and getting back to see how your gfr is doing and getting away from the meat protein. I miss meat so much and it has taken a LOT to do the plant based diet. I am also type 2 diabetic and since my gfr is so low it is controlled by diet without meds...so I see your point so well about carbs. If the carb restrictions weren't there it would be so much better. But, it is what it is.

Praying for you and your upcoming appointment and blood work. Praying you will have a good report and are holding steady or even better. It is a big step but you are doing the right to follow up and to be proactive in diet and care. My nutritionist advised me to start a walking program so now it is 30 - 45 minutes a day, walking and even some stationary bike riding. It feel good afterwards and Lord willing O'll be able to keep it up. Sometimes the fatigue just gets me.

And yes, please let me know how everything goes with your upcoming visit to the doctor and your bloodwork. May you have peace in your heart as you follow up and as you tweak your diet in the days ahead. Think positive and be encouraged. You can do this and be victorious. Thank you for being so open and for sharing your story with me. God bless!❤️👍🌺