Nope, I didn't fall off my shower stool and get stuck in the drain.

[Sophiebun11]

If I were a bird, I'd be a rare Yellow-Headed Whack-a-Doo

I went to the Dr. yesterday and now I know why I've been having so many silly misadventures like falling, getting my head stuck in the Christmas display at Trader Joes, etc.

I know most with CKD have PAD. But I have a rare form in my Subclavian Artery leading to the cerebellum in the brain so I'm not getting blood flow to help my balance, and I get confused too.

I haven't been on the forum much the past week or so as I took a nasty spill or two, landed flat on my back and hurt my hips and back. I thought I was asleep and was on the floor looking up at the ceiling. I suppose I got up to pee and hit the deck.

My Dr. says I need a cane or walker from now on. I got a very cool cane with a Raven head on it. I named him Reginald Ravensworth, "Reggie" for short. By jove, Reggie, help me into the kitchen will you? There's a good bird!! LOL Yep, I told you I'm a Yellow-Headed Whack-a-Doo.

I got my new kidney labs. Yikes. Good thing the Prednisone really helped me and I went up from an eGFR of 28 to 50 almost 3 months ago. Now it dropped down to 42 but that's still 3B, not stage 4 again. It shows my CKD is autoimmune related and the Pred. works. I was thinking if I lost that 8 pts and was at eGFR 28, I'd be down to eGFR 20 without the Pred.

My Neph told me last time we might go off Pred. for a month and see if I hold my own in case something else made it go up. He doesn't want to leave me on Pred for no good reason due to the side effects.

Wow, I have never seen so many "L"s and "H"s on every lab test I had.

I still don't have protein, another good vegetarian side effect, but now I have anemia and serious muscle wasting.

I will see my Neph next Wed. And then on Tues and Thurs. I have PT for at least a month to work on balance and gait.

If I was 97 y/o instead of in my 60s I'd be in darned fine shape!!! LOL

My back/hip injury made it painful to type, but I'm about 75% better so I'll be checking back in again. I missed you guys!!!

[Cap21_NKF]

Thank you s much for sharing! This new is sure to give hope to other patients.

[Sophiebun11 in reply to Cap21_NKF]

Hi Cap21-NKF,

I just want to clarify that my situation is different than most here. My CKD isn't from HBP or T2D, it's from an autoimmune disease called Scleroderma that attacks the organs of the body the kidney being among them. uofmhealth.org/conditions-t...

Prednisone will only help if you have particular autoimmune diseases like Lupus or Sclero, it's not a treatment for most CKD patients.

Sorry if I got your hopes up.

[Bassetmommer NKF Ambassador]

Oh my Sophie, I am so sorry. But again, your sense of humor is amazing. Good thing they found out what was going on. I hope Reggie and you will have a wonderful relationship for a while and then he can fly the coup. I too sometimes use a cane because I have psoriatic arthritis and an ankle that is totally destroyed. They want to fuse it and I won't. So when I have a lot of walking to do, I use one of my canes. One is a fish head and it's all painted up. The others are just plain. I too go to PT therapy, but I do it in a pool. I am addicted to it now. I go twice a week for over an hour a time. It has really helped with strength, balance and stamina. But not making me lose the weight I want.

About the muscle wasting and anemia. Try added some things like flax seed to your food. Last doc appointment was concerned about the same thing and that was one of the recommendations. I go tomorrow for labs so we will see how things are doing.

Take care of yourself. You are very precious.

[Sophiebun11 in reply to Bassetmommer]

I'll ask the Neph about the anemia and flax. Maybe I need to go back to the renal dietician again. It's been at least 6 months and before the Pred.

At that time she basically told me I needed to eat more carbs. Takes for that 5lbs. and the other 5lbs. from the Pred. Oh well, it could be worse. I used to be on 60 mg Pred for nearly 15 years.

My mother did the aqua aerobics for her RA. She enjoyed it. I can't deal with the chlorine in the pool it effects my asthma. I wish I hadn't moved from the beach. I used to swim daily, but now I probably couldn't do that in a straight line LOL Plus Reggie might drown!!!!

Between my sclero and my balance stuff I may be keeping Reggie around.

What did you name your fish, if anything? S/he needs a name!!!

I'm silly, I name a lot of things, like my car. The guys at the auto repair know I say my car's name instead of mine and tell them she needs an appt. and wants to spend the night and have the Continental Breakfast in the morning. They laugh.

[Bassetmommer NKF Ambassador in reply to Sophiebun11]

oh I am exactly the same. I normally name everything. My car is Ezmeralda. She is emerald green. I named her before I signed the contract. I have named the trees in my yard (Elgin and Sister) and the big tomato plant we grew this summer was Audrey. I name the squirrels, Buda and Blondie and Pita, that visit. The rabbit that lives in my yard is Mrs. Bunnie and her son was Baby Peter. But I did not name the cane. I'll have to work on that.

[RoxanneKidney]

YOu hang in there. Glad to here the meds are working out.

[Sophiebun11 in reply to RoxanneKidney]

I am lucky I got in to that Neph. A different one may not have made the autoimmune connection and tried me on steroids.

My Neph's office called late yesterday and said my appt. next week will be a remote/phone appt. They are closing the office due to Omicron. That's great they are taking no chances with our weaker immunity. My PCP saw me in office just the day before.

[Confuseddiabetic]

So happy to hear from you! I’m not sure what PAD is. I have a new bruise on my forehead. I was putting food back in the refrigerator and when I stood up I hit my head on the freezer door even though it was closed so I feel some kinship with you.Happy to hear about Reggie. He looks very handsome. Good choice

[Sophiebun11 in reply to Confuseddiabetic]

You are just like me!!! I bonk my head in the fridge all the time. I tell myself I'm knocking some sense into myself LOL OUCH it does smart, sorry you did that. I do it on the car door edge also.

PAD is peripheral artery disease. It puts you at a higher risk of clots, strokes, and heart attacks. It was one of the most common reasons people would visit the cardiology office where I worked. It can be serious and happens from family history, high cholesterol, smoking, obesity, diabetes, and other causes. Most commonly it's in the legs or arms. However, it can be in the renal arteries, or as in my case the brain from subclavian artery. Basically, any peripheral artery which is an artery away from the heart (non-coronary artery). It's not just legs and cramping.

Sign up quick for the Olympic Klutz team, I think they're still holding tryouts. I made the team, was there ever a doubt? LOL

[Sharam]

Oh, I'm so sorry about what happened...But again the good news is the medication has been working.

Wish you the best of luck.

Get better soon 😊

[Sophiebun11 in reply to Sharam]

Thanks, I'm really happy. I told my Neph he is a genius. He actually blushed!!! LOL

[Sharam in reply to Sophiebun11]

We need more of those nephrologists!

[CatOnACloud]

I like Reggie. How dignified for a whackadoodle duck Sorry for your misadventures. My sis uses almond milk soy products for protein in smoothies if that might work for you. Pretty much put what you want in them! I got anemia now too i feel bit better on iron. Subclavian PAD affecting balance—there’s a new one. May it not be so topsy turvey the rest of the year for you!

[Sophiebun11 in reply to CatOnACloud]

Thanks Cat,

Reggie is a handsome bird, and he really is helping me feel steady.

Thanks for the tip on the almond milk. I like almonds in chocolate so milk might be ok LOL

I'm in the 3% club. Only 3% have that PAD, only 3% have my type of blood cancer and only 3% have my autoimmune disease Scleroderma. I am a rare bird indeed. I'd rather be in the 3% that wins the Publisher's Clearinghouse Sweepstakes!!!!!

At least I'm in some wonderful company with my CKD, migraines and asthma. I've met some very nice people on this forum, I am lucky to have "stumbled" upon it!!!

[CatOnACloud]

I was told diabetes affects the flexibility of arteries greatly. They put me on a statin just for the arteries, one that is kidney friendly. Course I had a round of blood clots once, so…

[orangecity41 NKF Ambassador]

Keep up your sense of humor, it is an important part of aging.

[Sophiebun11 in reply to orangecity41]

Thanks, orangecity,

You are right about that humor thing at any age!!!!

[jodaer]

Sophiebun, love your sense of humor and ability to laugh at yourself. Hope you can get off the pred, a true double edged sword if I've ever seen one. Be careful and stay safe

[Sophiebun11 in reply to jodaer]

Hi jodaer,

It sure is a double edge sword. It kept me breathing through 13 years of asthma. At least I'm only on 5mg. instead of 20mg like for asthma so it isn't "as bad". In the risk vs. benefit if Pred saves my kidneys it will be worth it. I think the Pred damage is done after all these years on it. I hope I can try every other day so I don't shut down my adrenal glands again.

I'm just glad my kitty Henry is fast. I'd hate it if I fell and hurt him as well.

[Helloyall]

What does neurosurgeon have to say about the blockage?

[Sophiebun11 in reply to Helloyall]

Nothing yet. It would be a cardiac surgeon as it's the subclavian artery that supplies the brain, not inside the brain. I have to go back and see him again. Subclavian is under the clavicle (collar bone). Thanks.

[drmind]

Split pea soup and lima bean plus corn soup are complete proteins. Would these help your anemia and still be vegetarian? Sorry for all your problems. Take care.

[Sophiebun11 in reply to drmind]

Those do sound good. I add Nutritional Yeast Powder to everything to add more protein. Mainly I eat a lot of quinoa. I have a boatload of food allergies/sensitivities and get migraines or asthma so have to rotate about 4 foods. I'm rather limited but used to it. I know people hate giving up meat, but I literally gave up almost everything. I hate migraines more than I love food. And breathing is high on my list too LOL!!!

Thanks, drmind.

[Sophiebun11]

pubmed.ncbi.nlm.nih.gov/254... PAD is related to CKD.

Thanks for the nice reply. I know my blood cancer or Scleroderma will kill me off long before my CKD gets me. I was given 36 months to live about 6 years ago. I'm still in denial LOL. As long as I don't buy into the Dr's timeline, I can last another 5 maybe 10. Not sure about 30 LOL

[HSV21]

Hi Sophie,

So happy for your GFR numbers but sorry about the other issues you are facing. Your humor and attitude is so inspirational to all of us! Do keep it up and you remain in my prayers.