Is Low Diastolic Blood Pressure common with Stage 3 or 4 CKD?

@billchitwood You got a lot accomplished today! There will be many things to consider in the next few weeks, and you will need your wits about you. Keep up with the note taking and journaling. And remember to take care of yourself, too!

I hope that tonight you can rest a bit easier knowing that your husband finally conceded to the dr visit, and you did good!
Ginger

I discovered Costco charges $1,077 for a 30 day supply (90 pills) of the Creon! I sure hope there is a reasonable generic!

Bill seems more relaxed after seeing Dr N.

I am thrilled that you got him to go - especially to a doctor who he respects. If he forgets what the doctor said, ask for it to be written in the "visit notes". We used to put those by my father-in-law"s recliner and referred him to it every time there was a dispute.
"Whatever and whenever "is a great diet for reluctant eaters. And small servings don't look so overwhelming.

Sounds like you got things started. Good luck.
Sue

There is financial aid available for Creon. Look on their Website. Apply even if you are on Medicare.

Medicare's Home Health was ordered and on Friday a PN showed up. She took Bill's BP sitting down and then standing - major drop. She has me doing it twice a day (he will do it more often) - Flat, sitting and standing. Against most of what I've read his flat reading is much higher (like normal more or less) than sitting or standing. Two days ago It was flat: 130/62 Sitting: 95/56 and standing: 70/39. A few minutes ago upon returning from the bath room he had me take it standing: 87/36.

When the PN did an oxygen reading it was at 92. She suggested I buy an Pulse/Oxymeter and chart it. (It is due to arrive today).

The diastolic today at 36 shook Bill up. Is leery of taking it anymore as he thought it indicated he was dying. He isn't showing any symptoms of passing out. Does have shortness of breath. PN thinks doctor should order heart/lung tests. Bill doesn't want more medicine. Other suggestion is he should probably stop taking his Atenolol or cut it in half (he takes 50 mg once a day).

Not sure if they relay this information to the doctor or if I'm supposed to? I would think they would submit reports to the doctor. Not sure how it works and she wasn't that clean on it (of course with our terrible hearing we could have missed what she said).

Has anyone else dealt with the Home Health? Many thanks for input.

Yes, please let his doc know directly. Home health reports take time to work their way through the system. I suspect the med will be adjusted.
Even without more appointments, I think it might be good to ask about supplemental oxygen (a concentrator, not necessarily tanks that you have to fiddle with changing all the time.) Again, home care can deliver, set up and train you. You both might be surprised at how much a little extra oxygen will help how he feels.
Sue

Bill tried to talk the doctor out of taking Creon and was out voted. Not sure what the big deal is as his diarrhea doesn't seem that bad - in fact his nurse, before checking with him, asked if the OTC diarrhea would work. I'm guessing the doctor is worried more about what is causing it than stopping it? EPI? At least that seems to be what the Creon web site indicates it is for. And EPI can be caused by several different things? Time to google lol.

Bill's doctor ordered Home Health. When they were here Bill seemed his old self and told them he was fine and no pain, etc. I told them a different story but from everything they could see and hear from Bill they released him, saying he was doing fine. Then again the back pain, diarrhea, stomach aches, etc. started up. I asked him if he had been lying to them or to me and he admitted he lied to them because he didn't want their visits (as much as he seemed to enjoy them and joking around with them).

I don't know if the stomach problems are related to the CKD or just an upset tummy. He lost one of his prescriptions (mood & stress) and we had to reorder it - during that time he had an anger management problem! Kept suggesting I should go live with our daughter. That I wouldn't have long to wait until I was a widow, etc. Very trying until he got back on his medication.

He has a swallowing problem and the speech therapist wanted to have tests done (large pill went down wrong track while Charlie was here). Bill didn't want any tests, told Charlie since he had shown him how to take the pills it didn't have any more problems swallowing. Of course a day ago he swallowed a small pill down the 'wrong' tube'.

He is also having more memory problems and confusion.

At this point I'm not sure the doctor can do much for him. He also seems to be having more vision and hearing problems - recently took him in for hearing aid adjustments. I'm not sure how much he understood of her instructions. He has the TV streamer up to full volume. Has me yelling as he says he can't hear me. I asked the rest of the family if my voice was too low and they said no, it is normal and easy to hear.

The only one he wants helping him is me. He had me get a Kardia mobile and it shows everything as normal on the heart test - yet he bangs his chest and says he heart feels 'funny' - like he has to jump start it. I'm not sure if a Kardia mobile actually picks up on every heart problem. But seeing 'normal' makes him happy.

Wow! You must be both exhausted and frustrated. Time for some tough love to save yourself. Perhaps a "sit down strike" on your part is required.

List those items that home health was supposed to do, then explain to him (as many times as it takes) that you can no longer "do it all" and he must let the aides do those things for him. Bring family in to tell him "You are killing Mom. You have to accept other help. No excuses!" Do you have anyone in the family he will listen to? If necessary, walk outside and/or put in ear plugs while the aide is there - don't stay in the room or give him a choice.

Maybe someone else here has some suggestions?
Sue

Home Health indicated that he no longer meets the criteria for Medicare at this point (maybe later). He is doing a few of the exercises they showed him. I try to keep reminding him but then he will just say he did them in the other room. I do take walks and read a lot. Tuning him out.

Friday I am getting a Cochlear Implant in right ear as hearing aids not helping much. It is out patient so I'll probably be home before he is out of bed (daughter taking me). He keeps forgetting that it is coming up.