Kidney function and medications

Hello, Ginger and all. @gingerw, @m1miller, @njh , @barbq, @devonsnana, @colleenyoung

I'm a couple years on various connect groups but new to the kidney group. I'm 74, live in Florida, have a bunch of junk for many years like most of us here, and just got new testing re super high protein and infections in urine a couple of weeks ago w/UTI, landing me in the Mayo Hospital on a fun Sat. afternoon. I'm seeing a nephrologist and infectious disease specialist now, last week, first visits with each.

Nephrology sent me for lots of tests last week, and I'm doing a 24 hour urine Monday. So far, tests indicate ANCA Vasculitis, a new one for me. I have sarcoid since I was 40, been in and out of remission with a love/hate relationship with prednisone. They seem to like me, these autoimmune diseases. I'm on prednisone now for sinus/headaches/face/neck pain, PCP thinking it might be related to migraine or ???so he put me on the perfect med for vasculitis. God is good.

Also, the infectious disease doc yesterday put me on a long-tern dose of 500mg Keflex to manage the multiple and serious UTI;s this last year. One with sepsis, this last one with 600+ protein and high infections, blood count. That med may change now with this results, see what nephrology says. I hope to see her this week.

Prednisone has given me a bit of energy, but wow am I drained. I spent 3 days in hospital last week, from Sunday, I thought from exhaustion and stress from my own issues and my son was in a medical crisis and admitted to Mayo Hospital through ED on Sat., but probably was actually Vasculitis, symptoms fit but urine was ok.

Amazing things, these bodies of ours. I'm constantly impressed with what our Lord did when he put us together. Amazed and stumped. I often wonder why I am, as you said, one of the chosen. I've had many conversations with Him about all this stuff in life. What a mess! I know I'm strong. Don't want to be. I know the Bible teaches we won't have more than we can handle, we're learning.....I don't want to learn any more; Smart and strong enough, thank you....

Well, that's my story, a bit of it anyway. I've appreciated so much of what you folks have said and shared. You're much further down this path of course than I, and dealing with everything with such good spirits. I admire you all. I don't know what the doctors will tell me of course, or what they plan. But, I'm so very thankful, so blessed to be installed and working with the marvelous Mayo system. God is taking care of me. I thank Him for getting me to these docs and to this site. What a blessing Connect has been to me these last couple of years.

I hope you all have a good rest this evening, filled with peace and healing. Good for CBD gummies!
Blessings, elizabeth

Good Luck

@ess77 Hi Elizabeth, I hope the doctors are able to come up with the right combination of medications and diagnise what is going on so they can assist you. We will be anxious to hear what they say, of course. You have a lot on your plate and getting to the root of all this will hopefully lessen the stress.
Ginger

You sound brave, resilient and full of good humor. Admirable honest attitude.

My 88 year old husband has CKD (Stage 3 a&b - it jumped around between b&a). He takes Tylenol (generic) which gives some relief for the back pain and wears a backbrace part of the time. One of the weirdest thing is when he showers his BP drops really low (86/34 pulse 60). He made it to the bed and is sleeping now. He does get extremely exhaused if he walks anywhere - like to the bathroom and back, which he does a lot as he has an enlarged prostate (is on generic Flomax morning & night and Avodart night). Plus he is on meds for BP, thyroid, gout, cholestrol, sleep problems and stress. He hasn't had a blood test since last November so I'm not sure if he is still in stage 3 or not. He also has a heart that tends to skip beats every so often but nothing that the doctors have been concerned about. He only wants to eat sweets. He doesn't want any treatments so just trying our best to keep him comfortable. His back seems to give him the most pain and the Tylenol only helps a little. I rub cream on it for him, which helps as a very temporary fix. He has a walker, which he won't use. He also walks and sits hunched over. Which hurts his chest muscles. He has a problem with valve in right leg, which seems to be better lately - maybe because he always has his feet raised in recliner. Sometimes has trouble swallowing - especially larger pills that can't be broken down. Some mental confusion. He spends most of his day sitting in his recliner fighting with his computer.

@billchitwood It sounds like your husband has a lot going on in his life, physically. Does he have a shower chair to use, in case he is feeling faint while showering? That might be a consideration for you. Perhaps his doctor would recommend some physical therapy. It really can do wonders not only for areas that are hurting, like his back, but for overall wellbeing! With his dr's okay, there are many stretching exercises he can do to feel better.
Ginger

Previous doctor in KY had him do PT but he refused to keep it up. He does a few push offs off the counter and some arm stretches. He said he almost pasted out in the shower this morning. We do have a shower bench and handheld shower he could use but won't. He weighs over 180 lbs and - when standing erect, which he doesn't anymore, is 6'1" - I'm 5/3' and about 110 lbs and have a bone density problem - also age 80 - so I couldn't balance him well or get him up if he fell. He scared himself this morning and jokingly said he is giving up showers. Sometimes his smell is overwhelming and I have almost no sense of smell. He also is suffering from incontenance at various times. I've suggested a chair but he is against it. At this point he has so many health issues - and many he has had for years so even though they match CKD symptoms I'm not sure which they are related to. He is reluctant to mention anything to his doctor as he only want palative care at this point. His stress med keeps him happy for the most part and he is quite content just being at home with me and our kitty (who comes and gets me if he has a problem - a guard kitty).

I don't know if he would qualify for Medicare home health care, which he would probably protest. Feel so helpless in helping him. If you met him you wouldn't think anything was wrong - which is what he imparts to the doctor and his staff.

It helps just being able to talk to someone! Our kids say they want to know how he is doing but they really don't as it is upsetting. When they visit he puts on a good act. Although our one granddaughter noticed the last time she was here that he couldn't remember her sister's name, which completely surprised her.

Monday called the doctor's office and he had him come right in. Put in a request for Home Health call - skilled nursing. Michelle arrived Friday morning and started asking questions. Bill, for the first time in ages, almost walked upright. Said he felt fine and his back didn't hurt him that much (sure different from what he tells me and I see). She did look at the charts I've been keeping and agreed that the constant yoyo bp isn't normal. She took his blood pressure sitting and then standing. Much much lower when he stood. So she has me charting it when he gets up and at noon - first sitting and then standing. This morning when I took it laying down it was 122/67 pulse 56. Sitting was 104/56 56 and then he stood for 3 minutes - 81/46 58. Next BP results were Sitting 101/52 66 and Standing 81/40 68.

She is also having me get a Pulse/Oxymeter and wants that followed - his was at 92 sitting at rest. Ordered one.

And she agreed a toilet riser could be of benefit to him - ordered one. I do have safety rails in both bathrooms for him, but they only help part of the time.

They will monitor him for 4 weeks. Also a social worker is supposed to call (not quite sure what her role will be). Apparently can be extended if need be.

Nobody seems to be concerned about his CKD Stage 3. Sonoraquest showed his GFR at 48 a few weeks ago and Dr's Lab showed it at 50 Monday. It has jumped back and forth between 51 and 42 over the past 1 3/4 years.

She did think we should ask the doctor to do heart and lung tests - that he might have COPD. Before he met me he was a heavy smoker and drinker. He gave up smoking immediately as it bothered me and cut back to almost nothing on drinking. But he was 50 when we met so he had a lot of years abusing his body.

Michelle also showed him how to do some stretching exercises as he is getting out of bed - he lasted all of a few minutes before he couldn't do more (arms raised over his head and then out in front of him). That was after I had taken his BP.

So will keep going on my charts. Michelle was surprised that I had every day and time written down for last two month.

That is such a beautiful way to look at one's situation. I hope to get there.

I totally get it. Was in the same position and have had 3/4 ablations on my back since no good meds available. Maybe talk to your nephrologist for a referral to an ortho specialist in back pain. Doesn't fix but helps!
Good Luck