3B and falling fast

[phebamom]

Good day: Age 68, farm wife. BMI 25. (about 20# overweight) Non-smoker. Stage 3B kidney disease, and GFR falling every month. Right now at 30 with creatinine at 1.81. Comorbidities are Polymyalgia Rheumatica , Giant Cell Arteritis, MGUS, resistant hypertension. This morning was 185/107 on 80mg. Valsartan 2x, 40mg. verapimil 2x. Kidney doctor just put in a prescription for clonipin patch. I have had resistant hypertension for two years and no amount of medication will bring it down. I have been placed on 9 different medications for resistant hypertension.

I had to actually request one of my doctors to do a simple urine test. Urine test showed high levels of blood and protein in my urine. I was finally sent to a kidney specialist. She seems very intelligent and caring, and is the first doctor who suggested medication in patch form. I also have chronic dyspepsia. I can no longer take a PPI, or any magnesium based antacid, so have to be careful with stomach.

I am also wondering since I have chronic dyspepsia; how much of the medication is being absorbed when I take it orally. I am waiting for prescription to be filled for the clonipin patch.

Doctor has a suspicion that something called MGRS might be my problem with my kidneys, and in turn the resistant hypertension. MGUS (Monoclonal Gammopathy of Undetermined Significance) is a condition where my blood plasma contains a cloned protein cell. The condition is common, and usually found by accident with a blood test. My condition was discovered that way, by accident, 16 years ago. I am also a cancer survivor, endometrial, more than half way through the uterine wall. That was back in 2004. MGUS has a low percentage of becoming Multiple Myeloma. So far, my blood protein numbers are good. Usually people with MGUS have no issues with it. In my case it exacerbates the auto-immune issues making treatment difficult. MGUS can morph into a condition called MGRS. Monoclonal Gammopathy of Renal Significance. In my case it may have done just that. That is what my kidney doctor is suspicious of. A kidney biopsy is needed to verify. A biopsy can not be done until blood pressure goes down. The high BP is probably caused by the kidney failure. Talk about a dog chasing it's tail. With MGRS the monoclonal protein invades the kidneys and gets stuck there, causing bleeding and lesions. The treatment is chemotherapy.

I will post again after I start the Clonipin, and hopefully after the kidney biopsy when I know more. So far, the MGRS is the only thing that makes sense. On a low creatinine diet, low sodium diet for past 3 years. Nothing I do seems to make a bit of difference. If MGRS ends up being the cause that would make more sense

[bumblebee_tuna]

Hi phebamom, that is quite a journey you are having here. Hopefully a biopsy can tell a little more why your kidneys are hurting. Blood and albumin in the urine is not a good sign, but I am hopeful that you and your nephrologist can sort it out.

What on earth is a low creatinine diet? Creatinine is just a marker for how well your kidneys work, it not something that damages your kidneys and you should work on "lowering". Please work with your nephrologist and ignore "internet advice".

[phebamom in reply to bumblebee_tuna]

Hi: It was my kidney specialist who told me to stop eating all meat, including fish. My kidneys no longer clear creatinine. How well kidney's clear creatinine is an indicator of their function. She told me creatinine is in meat, so no meat. She is a highly regarded kidney specialist. Internet advice told me no potassium. Kidney doctor said in my case it is okay. So, yeah, I ignore a lot of internet advice. As I said above, I think each case is independent, depending on the person and what disease they have. I feel like I am dying, perhaps I am. Hoping Dr can help me,

[Pisces101 in reply to phebamom]

It’s easy to say “stay positive” - more difficult to do.. but it’s important to be hopeful ❤️ . The worst is dealing with all the uncertainties - and you’ve had your share! You seem to have a really good nephrologist now who has also given you good dietary advice - that’s not always the case (from what I have read here!). Wishing you the best of luck!!

[phebamom in reply to Pisces101]

Hi: thanks for the words of support. As I wrote above, I really think each case is individual. thank goodness I can still eat potatoes, although two days ago I made an awesome bean and cheese Chimichanga. My hubby loved my veggie one better than his beef one, Put on Clonipin patch this afternoon, I had to drive 30 miles to find a pharmacy that had it.

[honeybug]

🤗♥️🥰🙏🕊🌿🌸🦋

EJ

[jodaer]

Really nothing to add but am sending tons of positive vibes your way. Let us know how it is going.

[phebamom in reply to jodaer]

started clonipin patch this afternoon, HOping it works.

[jodaer in reply to phebamom]

I'll keep my fingers crossed it works.. Let us know.

[Camppy3]

You are your own advocate,if you don't trust a doctor, go to another. Before I had transplant I had to watch protein, potassium and sodium. Please try to stay positive.

[phebamom in reply to Camppy3]

I watch protein and sodium. So far potassium numbers are good. It is hard once potassium is involved because potassium is in just about everything,

[Camppy3 in reply to phebamom]

I actually just quit eating bananas or half once in a while. And orange juice which I use to like to drink. I didn't get too in depth, for the potassium.

[phebamom in reply to Camppy3]

Fortunately my potassium level is okay. Today the kidney doctor said I can eat fish, but no other meat protein. The kidney biopsy is being scheduled. I will post when I get results. All of my bloodwork (they took 8 vials of blood) came back okay except for the igm kappa protein, i.e., MGUS. Kidney doctor said she is almost 100% positive MGRS is my problem. After biopsy I will more than likely be starting chemo therapy to stop the protein from being made in my bone marrow.

[Camppy3 in reply to phebamom]

Just keep positive and keep us posted.

[Bassetmommer NKF Ambassador]

My goodness, that is a lot to process but it sounds like you are a true Warrior. Please keep sharing your journey because you never know who might read it and say.... hey, maybe this is what is going on with me. We never know who we help when we share our stories. I wish you a confirmed diagnosis so you can get the treatment you need. Your analogy of the dog chasing it tail is healthcare to the T. Not eating meat is actually extremely healthy for many reasons; too much protein and a protein the kidneys cannot process, and it raises acid levels in the body which also destroys organs.

[phebamom in reply to Bassetmommer]

Thank you so much for writing. Here is my dirty little secret. We raise beef cattle . For the past 27 years I always had a problem with the end result of what we do. I kept it to myself. I do not really like much meat except for hamburger, and then only as an ingredient in other dishes tacos, spaghetti, etc. Imagine that, my hubby bought his first cow when he was 15. It is in his blood. We raise our cattle humanely, but I still have always had issues with it, seems nature has solved that problem

[Bassetmommer NKF Ambassador in reply to phebamom]

wow, that must be really difficult. True story: When I was a teenager, my best friend was raising a calf as a 4H project. I fell in love with the baby. He was super sweet and very friendly and we named him Blackie. One day I was eating dinner with her family and her father asked how I liked the burger. I said it was great and he goes: "That was Blackie" That's life on a farm.

[phebamom in reply to Bassetmommer]

So true. My hubby is what I could call a cow man. It is in his blood. He always sees to the needs of his animals before his own. We don't believe in locking them in a dry lot and forcing them to eat grain. All of our cows are grass fed. We have CAFOS all around us for hogs and south of us for chickens and turkeys. I think it is cruel to treat animals that way.

[KajNybom]

You are in my prayers. We are pulling for you!!

[Darlenia]

Oh my. Sending you lots of encouragement your way that you find the answer to your situation and can map your steps forward. I'm really glad you're seeing good nephrologist with your history of autoimmune and vascular disorders. I'm sure she's intrigued by all it all and wants to get to the bottom of it too. I think "not knowing" is far worse than "knowing". I truly hope you get a clear diagnosis soon and your things are stabilized - please let us know. As a gal who grew up on a farm, I hope you can soon embrace that life fully again if it's still in your hands. It's a hard but lovely way of life. Keep the faith, Phebamom. Hugs!

[phebamom in reply to Darlenia]

Hi: I have had more than my share of not knowing. My GCA (Giant Cell Arteritis) went undiagnosed for years. It took 7 trips in 3 months to Mayo Clinic in MN to get a proper diagnosis. I had cancer of the uterus in 04, and had to go to a special clinic to get it diagnosed because my primary care provider at the time just shrugged off my symptoms and told me it was "menopause" and anxiety. The cancer at diagnosis was more than half way through the uterine wall. If I had not been my own advocate I would have died.

[Darlenia in reply to phebamom]

You're a strong lady, Phebamom, a true warrior. Much respect. Keep pressing for answers and let us know the outcome! Hugs!

[Hidden]

The MGUS is concerning as that leads to multiple myeloma and that is what could be affecting your kidneys. My wife has MM and we watched her kidney function decline and then recover after starting treatment. Here is one article from a Google search that describes the condition. roswellpark.org/cancertalk/...

[phebamom in reply to Hidden]

I see an oncologist once every 3 months for the last 16 years, since the condition was noted on a blood test. My number has always stayed low. I do know the risk of MGUS becoming MM. The problem is once MGUS becomes MGRS the cancer risk goes way up, so am trying to stay positive . Either way chemo is the answer. From the case studies I read the response for kidney improvement is very good and the chemo is tolerable in this condition, I hope so. Thanks for writing,

[Angels54]

Omg you are dealing with a lot , I hope you get some good help and support soon 👍