Fluid retention / edema

[SoCal1]

Hi -- I'm 5 years post kidney transplant and over the past year I've developed swelling (pitting edema) in my lower legs. My eyes are also extemely puffy in the morning as the fluid pools there overnight. I'm curiuos if others have taken diuretics (lasix) to address this, or why they have chosen not to? For my blood pressure, I'm on 10mg of Amlodipine, which I realize can cause fluid retention, as well as clonidine. The fluid retention isn't causing any discomfort and is only unsightly, so I'm wondering how much I should advocate for lasix when I next meet with my nephrologist. Thanks so much.

[Hidden]

I was on norvasc prior to dialysis and my transplant. It was great at controlling BP but it caused a lot of swelling in my legs. Indeed it is unsightly when wearing shorts. I recall wearing track pants at Disneyworld due to the swelling. Yikes!

Always make sure to mention these things to your transplant team and neph. From my own experience I know there are other drugs besides Norvasc. Currently, I take carvidilol 2x daily. I’m really surprised I have little to no edema after transplant.

[AndrewT]

Dear SoCal1,

Personally I WOULDN'T recommend taking any Medication, unless it is prescribed By YOUR Doctors/ Consultants. (remember Some 'Medications' can even be Dangerous....think St John's Wart, which Boosts Immunity.... in the Immune Suppressed!) DO tell, your Team, what you have 'Read', or been Told, by all means- there is NO HARM in that- but in an 'Asking/ Requesting' way, rather than a 'Telling/ Insisting' one...if you Follow me...

Clearly we ALL Wish You Well SoCal1, and yo are Certainly in my Prayers.

Warmest Wishes

AndrewT

[SoCal1]

Thank you both for your input. And yes, AndrewT, I agree and wouldn't think of doing anything without consulting my nephrologist, I just ideally want to be somewhat informed prior to our meetings such that the discussion can be more constructive. Best to you both.

[OperationKidney]

Even if its not uncomfortable it isn't a good sign so I'd say its worth asking about.

[Hidden]

It is normal to have occasional fluid retention. However, the puffiness around your eyes needs to be brought to the attention of nephrology. Get a picture, because docs are better when they can actually see what the problem is. I would ask for diuretics.

[A-A-B-J]

I’m 9 months since transplant. I have aweful swelling in kegs and ankles. My Dr. said lasiks are out if the question as they can severely damage the kidney. Even on a healthy person with their own kidney it’s not good to take. They suggested very low salt intake and less drinking of water. I’ve found that the less sodium intake does help. But at times I do eat food with sodium and have to suffer the consequences.

[larrymontague826]

I am 2yrs. post transplant and the best thing I have found for fluid retention is to stop the sodium. The lasiks helped with the fluid but caused my creation to rise. I found that throwing the salt shaker away has helped more then anything. The best advice is ask your dr.

[Gordonlsmith]

Have the same problem at 4 years out. Have tried lasik 3 days per week but it hasn’t helped the swelling. Compression socks work great.

[WYOAnne NKF Ambassador]

Yes, make sure you tell your nephrologist about the edema you are experiencing. My nephrologist had me start taking Lasix PRN for edema. Now I take one tablet 20 mg of Lasix every other day. My creatinine is fine.In June we went on a long trip by car. Spent 2 days sitting in the car there and back. Most of our meals we ate out in restaurants. Between the sitting and the "salty" meals, my ankles swelled so much that I couldn't put my shoes on. Anyway, it's not always the medication you are on that causes the edema. But you need to discuss with your doctor as to the cause. I am 21+ years post transplant.

[Blue-Quilter]

I've had swelling off and on, both before and after the transplant, and I'll be 2 years out in October. I'm on 5mg Amlodipine AM & PM, 6.25mg Carvedilol AM & PM, 12.5mg Spironolactone AM, 80mg Telmisartan AM, AND 20mg Furosemide (Lasix) AM -- all for my BP and pitting edema. They were slightly reluctant to prescribe the Lasix because of the negative impact it can have on the creatinine, but mine's been running between 1.75 and 2.70 since the transplant, and hasn't really changed since adding the Lasix to my chemical stew. (By way of comparison, my creatinine was running about 2.65 to 3.05 prior to the transplant, so not a huge change, but still an overall improvement.) My BP tends to run higher than they hoped, hence all the medications, although this past week I had very good readings 12 out of 14 times. I'm very diligent about watching my sodium (almost OCD!) to the point that it runs low when they do labs, as well as drinking my water. I'm on my feet all day at work, and the podiatrist's solution is compression stockings. While it keeps the swelling at bay, my feet freeze if I don't wear wool socks. I'd like to work another year or two, but that may not be realistic. Anyway, definitely bring it up at your next appointment. Best wishes!

[LisaSnow in reply to Blue-Quilter]

May I ask if this is your second transplant? I wonder because I didn't know that creatinine as low as 3.05 is even eligible for a transplant.

[LisaSnow]

Have you had any dose adjustment before.edema developed? If not it is unlikely to be due to the meds you are on. High sodium diet can definitely.lead to edema but so can a change in the transplant's function. I would let your nephrologist know right away so they can take a look at you.

[Blue-Quilter]

To LisaSnow: No, this is my first transplant. Everything about it was a miracle. The nursing staff said repeatedly, they don't normally do this when ______. But God made it happen. I kept waiting for them to realize there was some sort of a mistake, but that didn't happen either. Because the creatinine wasn't that high, I've often questioned if I should have said no, and given myself more time to save for the expenses not covered by insurance and living expenses while on medical leave. But God had all that worked out well in advance and every bill was paid, on time. I don't know why I was selected when I was -- only 3 months after being listed with UNOS. With all the issues I've had post-transplant, I don't know if I would consider a second one if it should become necessary. I hope I don't have to face that question.

I'm not sure if your next comment was directed to me or to SoCal1, but my team is very well aware of the pitting edema. I still have labs every two weeks, at nearly two years post. They are trying to get me stabilized, particularly the Envarsus (slow release tacrolimus) and I'm trying to do everything I can to cooperate. I don't know where the root of the problem lies. I keep my sodium to less that 2000 mg per day, many times under 1500, and I drink about 3L of water everyday. I also walk at least two miles each day, frequently more. I do my best to keep my blood glucose low, but occasionally have random spikes that I can't tie to anything I ate. I feel like I'm doing everything I know how to do, but still struggle to get good labs. I actually go in tomorrow morning, so maybe it will be a start!

[LisaSnow in reply to Blue-Quilter]

Whatever the reasons, continue to trust the process. ❤️👍🌹

[SoCal1]

Thanks to everyone for sharing their experiences.