I don’t understand

[Dragonfly1968]

From October 18 to December 10 my creatinine went from 1.22 to 1.6. And my gfr went from 58 to 34. I’ve had pain and discomfort in my left kidney. A dull painful ache. I can’t get in to see a nephrologist until the 29th. I know your gfr can fluctuate but that drastic of a drop in 2 months alarmed me as well as my oncologist. Is this normal? I’m 4 points away from Stage 4 ckd. I also found out that I have Barrett’s disease. That’s precancerous of the esophagus. US of hard enlarged lymph node in groin along with an MRI of my thoracic area as well as L1. Seems like there is something going on with my spine too. I’ve been saying that I feel like my body is giving up on me. That’s the only way to describe how I feel. Has anyone else experienced all or any of this? Been dealing with pain in my left kidney for the last week. Please tell me I’m not alone!

[Bassetmommer NKF Ambassador]

HI Dragonfly,

You are not ever alone. Although I do not walk the exact walk you are, the path is one of general health. We are here to support you on your journey, what ever turn it takes.

I know it is scary but until you see the doctor you have to wait and see what is what. It is hard to try to deal with the unknown.

To answer your question about GFR, yes GFR fluctuates. It can drop depending on many things including just being dehydrated. That is why we do not diagnose here but support.

AS far as your body is giving up....that's not true. Instead, it is telling you that there is something not good and we need to figure it out. There is much to be hopeful about.

Let us know how things turn out.

[Dragonfly1968 in reply to Bassetmommer]

Thanks Bassetmommer. I am typically not a negative person but sometimes it just gets to me. We also have a lot of stress at the same time regarding my husband’s business, being investigated by the OAI for government fraud—because they only do business with the USPS. The investigation took a year so the income they were receiving from the work being done was put on hold. The business basically had to be reinvented if it was going to stay alive. He and his partner have been able to do that without having to lay anyone off or decrease salaries. A couple of days before Christmas my husband got the phone call he’s been waiting on. He and the business were cleared of the charges but his partner is charged with 31 countS of wire fraud and 2 million dollars. None of those charges will stick because when he goes to trial the judge will see how ridiculous the charges are based on a contract that all parties agreed to. So that is still hanging over our heads but thank god it’s not my husband too. Sorry if that was more than you wanted to know

I had foot surgery in September and had plates and screws put in to fuse several bones. Long story I’ll spare you. They have become extremely painful and I see my ortho on Wednesday with the anticipation of surgery to have them removed.

I feel like my life is being held together by strings. I have the ultrasound and mri on Friday and then see my oncologist on Monday. A full body scan showed several areas on my spine that need further information gathered to hopefully help all of these puzzle pieces. The Barrett’s disease totally caught me off guard because I had my gastro dr do an endoscopy as a “rule out”. Surprise! I have a colonoscopy schedule for the 30th. I don’t want anymore surprises!

None of my friends know anything about all of this because nothing is definitive and I can’t tolerate the constant questions that will be thrown at me when even I don’t know. I know they would mean well but that’s just one more stressor I’d have to deal with. I don’t need more. When I know something I will tell them—along with my 21 & 25 year old kids. They don’t need to worry about all this either while we wait. And wait some more.

Thanks for tolerating the length of this message. I also have Bipolar 1 so my psychiatrist is paying very close attention to me because she doesn’t want me to spiral down or get manic in a way to “feel something good” instead of so much stress. Mania can make you feel invincible and as if you can do anything. But it also has a way of making you feel not yourself and when you crash down out of mania it’s awful. I know I have no control over my life right now as to what I have or don’t have so I try not to worry about it. That does no good except make me feel anxious and on edge constantly. Life is what it is and we can only do our best to get through the bad times. Thanks again.

[Hidden]

Hi,

When I was diagnosed two and a half years ago my GFR was 32. I've become very proactive. I saw a nephrologist, a renal dietitian, changed PCP, changed urologist, changed cardiologist and all of the physicians on my Care Team know I expect them to give me their best medical advice (not the sanitized version), accept and support my decisions based on that advice, communicate with each other as they do me. Since the diagnosis was finally given to me, my GFR has gotten as high as 65. However, the most important number is that over that time my GFR has averaged 51.

I follow a kidney-friendly meal plan developed by my RD after looking at over a year's worth of lab values. I stick to that meal plan and should any significant change occur with any one issue I contact her by e-mail and we discuss and make the changes.

I maintain a good exercise regimen of walking, bike riding, elliptical machine workout and in general stay active. When I can I walk up and down stairs instead of using the elevator.

I keep a positive attitude and always do research to stay on top of my various illnesses. Knowledge is power.

It isn't easy but it certainly is doable.

Like you, I've had pain on and off on my right side. The doctors thought at first it might be kidney stones. An ultrasound later it was determined that it wasn't kidney stones but gall stones. Last October, I had my gallbladder removed when the pain became sharp and constant. One day at a time and usually one problem at a time. Very often one problem can have an adverse effect on multiple parts of your body.

If you are in the USA please go to the davita.com website and register for a free, 90-minute Kidney Smart class in your area. Lots of helpful information as well as many resources will be provided. If you aren't in the USA or are and want something more go to kidneyschool.org and view the learning modules they have regarding CKD.

If you are taking medications for a variety of issues use the drugs.com website and register for a free account. You can list all of the medications you take and see if any are contraindicated for any of your health issues. You can also register for newsletters about medication alerts and a variety of health issues.

There are many folks in this community that can help you with their advice, suggestions and stories. Don't give up, stay proactive and stay on top of your issues and put together a team of doctors and other medical professionals that will work with you to help you achieve optimum health.

[Dragonfly1968 in reply to Hidden]

Thank you Mr_Kidney for your support. I have a wonderful oncologist. Changed my PCP because my old one was doing nothing good for my health in general. She had no regard for range values with bloodwork. She didn’t care that my TSH was low, cholesterol was high, creatinine was high and gfr low. She was only worried about my potassium level because high levels could cause heart problems. SMH She also informed me that she trumps any dr and changes people’s medication all the time. The medication that is prescribed by a specialist. My new PCP is in a group of specialists who all have access to my records. I have a fantastic endocrinologist (I had my thyroid removed 5 years ago), urologist and will meet my nephrologist on the 29th. The same day I see my PCP for the first time. I don’t have any cardiology issues except my regular and LDL cholesterol went through the roof in a year and a half so I don’t know if my nephrologist will refer me to one. I also don’t have high blood pressure or diabetes. My eye dr is great. I started developing a cataract within 4 months of my yearly exam.

My exercise had the emergency brake pulled on it when I found out my right foot was broken and didn’t have a clue, as well as breaking off the bottom end of my “ankle bone” on my left foot. Before all of this I was doing CrossFit 5 days a week. I had my first surgery on my right foot June 2018 to have screws put in and my second surgery July 2018. He removed the broken piece of bone and put in a cadaver tendon to tighten my ankle and give it more stability. I was in a wheelchair for 6 weeks and physical therapy for 6 months. When I wasn’t doing CrossFit I was walking 4 miles. Some days I did both. When my PT was finished I started walking again but gradually had to stop completely due to the arthritis I’d developed in my foot that had been broken. I could barely walk through the grocery store. So on September 19th my ortho cleaned out all the arthritis between several bones in my midfoot and put in plates and screws to fuse the bones. I was non weight bearing for until December 12th of this year and have so much soft tissue damage that the balls of my feet are so swollen that at times I can slide my hand under my toes. Now my hardware has become very painful. I keep telling everyone how much I miss the gym and exercising. I was going to take some aquatic classes but with all of these appointments and tests I wasn’t sure how many of them I’d be able to get to. So that has been put on the table for now. I know how important exercise is for your heart, body and brain/mind. Exercise would help my my ldl level decrease. Nothing in my lifestyle had changed except surgery and not being able to exercise. It didn’t make sense why it went through the roof. I don’t know. Maybe I will end up going to a cardiologist to help lower my cholesterol since I’m unable to exercise. It’s frustrating that my heart is working harder because of my cholesterol and my kidneys are trying work hard enough to get all the waste and toxins out of my body. I know if I can start exercising again I will feel better if only mentally. I’m 51 years old and have more long-standing specialists than an elderly person. Oh I also have an excellent dermatologist. I’ve had both basal cell and squamous cell cancer and go every 6 months for a skin check. I’m fair skinned with red hair. I also have an excellent plastic surgeon who took a chunk of skin off the upper side of my nose and you can’t see the scar.

I know communication between my specialists will be important to give me the best treatment possible. I couldn’t help but laugh when I looked at a renal diet and compared it to a damaged esophagus and gastritis. They are completely opposite of each other! So which comes first? The chicken or the egg? LOL

Thanks for the support. I will let you know where all of this ends.

[Jayhawker in reply to Dragonfly1968]

The stress really can be tough! I have had periods of time where I’ve battled quite a lot of stress as well.

You’ve taken charge of your medical situation. That’s a critical step! Now you’ve got to wait; it may seem long, but it’s just a few weeks... Then it will likely be more testing and a little more time.

Right now your job is to wait these appointments out. Keep everything as stable as possible on a daily basis. Do your best. Gather your questions and your data. And do at least one thing you really enjoy every day.

And stay in touch. I’d suspect that while all our journeys are unique, the stress we each experience and manage is likely universal. We absolutely understand🐶

Jayhawker

[Hidden in reply to Jayhawker]

Something else that many folks don't think about...stress isn't always bad things. Good things can add stress to your life as well and can be just as debilitating.

If you looked at this weeks lottery numbers and you discovered you have the winning ticket. Happy, yes, but the stress of the decisions to come can be paralyzing. Or, your daughter comes home from college and announces she is going to have a baby. Your son comes home from his second year of med school and says he's dropping out to work on a crab boat. Your significant other comes home and says, "Let's talk!"

Some good things and some not so good, but stressful nevertheless.

Just something else to think about.