GFR improved but I feel worse: I have been... - Early CKD Support

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GFR improved but I feel worse

Amcor
Amcor

I have been in stage 3 for 6 years although I just found out, my being GFR 47-50 and now just my improved GFR is 60. But my feet and ankles have been swelling every day since April. They also look bruised. Even though my numbers don’t look bad I asked to see a nephrologist but my pcp did not think it necessary saying I was my kidneys were completely normal. I insisted telling him I may be stable but I sill have low functioning kid I I want to know why and what I can do about it.... so I reluctantly he did send me to a specialist last week. She (the nephrologist) seemed irritated that I was there and asked why was I there? I showed her my legs, and told her of my severe back pain, tiredness, nausea, etc. but she felt my symptoms were not due to my kidneys. I asked a lot of questions so that I could know more about the kidneys since I was there and so then she said if I would feel better about things we could do an ultrasound although she did not feel it was needed. The next day she called me and sounding concerned told me that they found a mass on my kidney in the ultrasound and they need to do a CT scan now! Tomorrow 7-15, I will have this done. Not sure about the outcome of this or what is happening to me but I really wish doctors would listen to there patients more as we know when something is going wrong in our own bodies. Some of them seem to just read the numbers.

12 Replies
oldestnewest

HI Amcor,

Unfortunately, what you had happened is not unusual. Good for you for advocating for yourself. This is why you should make notes of symptoms and activities so you can approach the doctor with facts. You are dealing with scientists who deal with facts. You have to understand how many patients they see who do not clear of when symptoms occur or what they do day to day that may be causing a situation. I am not making excuses for doctors either. It is just in the day to day of patient care, they too are overwhelmed.

What you presented to the doctor would not have normally indicated severe kidney issues with the lab readings being what they were. But the back pain and swelling was being caused by something and I am glad you pushed on to get it looked at.

Let us know how you make out with your scans. We are here for you.

Liver or heart problems can also cause swelling of the legs.

newbie56
newbie56 in reply to saifomar

Or sitting too much...being on you feet all day. Hard to find the balance. :)

Sadly your experience is not unique. The first two kidney doctors I saw were so laid back which I assumed was because my condition was not serious. I was never given any medication or advice to try and slow down progression. I actually found out that I was at stage 4 and the dire prognosis from looking on the internet. I am now at 8% yet I am sure if the doctors had been proactive when I was diagnosed then it could have been slowed. Keep pushing for action. I certainly wish I had of done.

Most importantly I hope the mass turns out to be just an ordinary cyst. I have a huge one on my kidney, for years and years. Let us know. About being your own advocate. I can relate. In addition to CKD I also have cancer. I started to report pain (in lower pelvis) first to my PCP who told me it was nothing (without doing a single test). Then it annoyed me so much I went to a walk in on the weekend. There an excellent doctor sent me for blood tests and an ultrasound. When they got the report they sent the documentation to a urologist and scheduled me with an appointment. They said there were abnormalities in the pelvis. The urologist, without even seeing me, called and said everything is just benign. No one cared about the "pain" in pelvis. It carried on another 2 weeks and I was so bothered I called to insist to see the urologist. I was passed to a Physicians Assistant. She took one look at the same reports the urologist did and said there is something there. She sent me for an MRI. It showed growths, enlarged lymph nodes in groin, and more. She referred me to an oncologist. All this took over 6 to 8 weeks. I was then sent for a pelvic MRI and a complete body bone scan. They found 7 tumors (2 in spine ate away huge holes), 4 in pelvis, 1 in femur. Cancer. Then I was sent to orthopedic surgeon to have hip replacement to remove tumor in femur. Then I was sent to neurologist to have operation on spine and complete spinal fusion. Then I went for 2 rounds (10 days each) for radiation. As there is no chemotherapy available for Renal Cancer in bones, I'm scheduled to start immunotherapy in 2 weeks. The lesson here? Imagine if I had just followed my PCP and Urologist advice that nothing is wrong, and had not pursued finding out why I felt pain and illness. True, it would not have changed my terminal illness diagnosis. But it led to operations that allow me to retain mobility. Removing 3 tumors certainly must be of some benefit. Starting immunotherapy to fight just remaining tumors in pelvis is better than fighting multiple tumors throughout body. We MUST be our own health advocate.

Amcor
Amcor in reply to RickHow

So sorry for all that you have gone through!

You are probably still waiting for the results of your scan. Waiting is so hard. I pray that it is just a cyst. I had a kidney removed due to a mass in my kidney a couple of years ago and I am doing fine so keep the chin up and keep fighting. Hope to hear soon how you are doing.

Amcor
Amcor in reply to jeanswood

My doctor said there is no sign of cancer according to the scan and my kidney looks OK...they don’t even see the mass that was on the left kidney. There are two tiny cyst on the right kidney. They do however see a 2 to 3 inch mass in the pelvic area that they believe is probably also a cyst. A Pelvic ultrasound is recommended.

jeanswood
jeanswood in reply to Amcor

I assume you will be doing to pelvic ultrasound to rule anything out there as well. It sounds like good news but don't give up if you don't feel right. You know your body best!

Amcor
Amcor in reply to jeanswood

Yes I will. My ob/gyn Doctor just called to set it up...apparently 3 months ago on my last ultrasound in this dept. this “mass/cyst” that is possibly on my ovary was less than half the size it is now showing on the CT scan. I was not told about it before.

Just another thing to worry about....

Update: ( 8/22 ) I had laparoscopic surgery to remove my ovaries along with the cysts in which one looked suspicious. It turned out I had NO cysts at all, however they found my right Fallopian tube to be extremely Large; about 10 inches long! Apparently on ultrasound this looked like cysts. My CKD is stable and improved.

I had extreme swelling in my feet, ankles and lower legs and also discoloration in the lower legs for months until I discovered on my own that Norvasc causes this. I spoke to my primary doctor about this and he acknowledged that it was a common side effect at the 10mg dose which is what I had been switched to, from 5mg, when diagnosed with CKD. The nephrologist, who I have since stopped seeing, had switched me off a BP med that included a diuretic and increased the Norvasc, but nobody told me about this possible side effect. I just assumed it was part of CKD. I was also on a beta blocker so my primary doc increased that and we eliminated the Norvasc. All swelling went away within days and my feet stopped hurting constantly. It's not easy tweaking the meds when you have high BP and CKD but my doctor and I work together now, with regular labs to monitor, and it's going well. My CKD numbers are improving with each lab result.

BTW, my Stage 3 CKD was likely caused by a bout of salmonella which caused severe dehydration, although I have had kidney issues my whole life, multiple kidney stones and a surgery for duplicated ureter when I was 6 (I am now 64).

Amcor,

I am glad you did not let the doctors sway you. So important that we make them listen, after all we know our bodies better than anyone else.

I wish you well.

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