Time to let go?

He has an appt with his kidney doc tomorrow. Won't be the same guy, will be a new one.  So a decision point for me.

a)  Do I go and put up a fight when this new guy wants to change meds, take him off the stuff that keeps him out of depends because it's too hard on his kidneys?  Do I go and do battle?

b)  Do I just stay home and let the docs take over and do whatever they want to do.  Do I give up the fight to help him?  Do I just let whatever be will be?

He is on a path of such physical destruction anyway.  Why should I be fighting to keep him alive?  Why should I be researching every new drug they put him on?  He's on 3 BP meds now.  WOW!!!  And his humulin RU 500 is back up to 32 units in the am and 16 units at night.  That's 48 units per day x 5 = 240 .....he would need to take 240 units of humulog per day.... that's why he's on the concentrated stuff.

Current meds:

Allopurinol 100 mg 3 tablets in morning uric acid

Aspirin 81 mg 1 pill in morning & 1 pill at night *

Fenofibrate 160 mg 1 per morning cholesterol & triglyceride

Humulin R U-500  32 units  8 am and 16 units 6 pm

Lisinopril 2.5 mg  1 tablet in morning BP

Nitroglycerin .4 mg as needed heart

Atorvastatin (lipitor). 80mg 1x per day at night for cholesterol

Terazosin 10 mg  1 capsules at night, bladder control

Metoprolol (oppressor) 25 mg, 2x day, blood pressure

Amlodipine 5 mg morning, blood pressure

Fish oil 2 tablets 2 x per day

Multivitamin 1 per day

Stool softener 1x day

allopurinol is hard on the kidneys, but keeps one out of depends

Fenofibrate can cause nausea, vomiting, diarrhea, flatulence....hubby has all of these horrible

Lisinopril can cause fatal liver problems, chills, bloating, vomiting, fainting, fever, diarrhea, nausea....long list for this one

Atorvastatin can cause liver disease, acute renal failure, elevated CPK. Causes weakness, insomnia, chest pain, diarrhea, flatulence, nausea, long list on this one.  Memory loss.  

Terazosin causes dizziness, drowsiness,headache, constipation, fatigue.....erectile dysfunction

Metoprolol - dizziness, drowsiness, fatigue,diarrhea, unusual dreams, trouble sleeping,depression, vision problems.  Can reduce blood flow to hands and feet.  Slow heartbeat, sexual dysfunction, hair loss, mental/mood changes, depression and more

Amlodipine causes peripheral edema, fatigue, dizziness, palpitations, nausea, impotence, depression, insomnia, tremor.....can increase angina or actually cause a heart attack in rare occasions.  

And because no one is looking at the "whole", each specialist comes in and adds/deducts their own drugs of choice....I truly believe they are going to kill him.  

For the past 2 years, I have been researching every change they make, going to every appointment, fighting with doctors, surgeons, nurses.  I tell them he will not stop certain meds because another specialist has told him to never stop it.  It truly has been a complete nightmare.  And I think I have to give up.  I think I can no longer go to bat for him.  I think we have to just let the medical profession do whatever it is they want to do and he can follow their protocol.  He's not going to follow the eating plan and he's certainly not about to exercise, so why should I do battle for him?

So I think I'll head to my sisters early tomorrow and skip this doctor.  I truly hate doing this to him, I feel like I'm giving up.  But I also know this is causing a stress on my physically and I need to put myself first. And as a side note, I am getting a little better, so I think physical therapy is helping....that and clearing out my calendar and spending more time with my family, away from diabetes.  That may sound terrible to some, but I have to get my own physical strength back so I can help him when he needs it most.  And I think that day is not far away.

DW

Today's nephrology visit

I think I'm exhausted and it was his appointment. His HMO does not have a nephrologist, so this was a referral outside the system. Of course, there is not a whole lot that she can do other than make observations. Sigh.

His A1c is normal. You wouldn't believe the look I got from her when I said that he is having a lot of lows and must be having highs to balance out the A1c. I immediately knew she did not like me, did not want me there, did not want to hear any of this.

And it's such a game with him. She asked if his doctor had talked to him about diet and limiting salt. He said yes and that we use "no salt" or salt substitutes. She said, "good, good". And then I said that yes, they had talked to him about that, but he loves to eat out and that he doesn't really follow any of the recommended diet plans. Again, I got "that look".

They had taken him off allopurinol and colchicine because his creatine levels had gone up. She put him back on 100mg /day of allopurinol and is giving him a 9 day burst of prednisone. I was a bit surprised with this as it works to raise blood sugars. And not once did she mention to him or ask him about daily glucose monitoring. Sigh.

Further, she told him to go back on the colchicine as needed for pain, up to 1 every other day. So, does this mean that his creatine levels will go back up?

He is on Novulin N 66 twice a day and R 30 twice a day. She asked him to cut back his salt and cut back his lasix. His weight is up to 246 pounds. A gain of 25 pounds this year. She did tell him that he is stage 3 CKD, his function is now at 32% and that yes, it can go up after being down....that the creatine levels were probably up due to too many drugs (which she is putting him back on).

She wants to see him every 6 months.

I asked her about a non-invasive glucose monitor/pump like MiniMed Paradigm Real-Time of CGMS system Gold. She said we need to see his endocrinologist for that. He does not have one. He only has a rheumatologist and a primary care physician.

I explained the peeks/valleys that I see with Novolin R& N and asked about Lantus/Novolog or novorapid and again, she said see the primary care or endocrinologist.

I inquired about remedies for depression, foot pain, headaches (suggested a pain management clinic).....and with each one...she said we needed to see the primary care.

So on the way home, I suggest that he make an appointment to see his primary care as soon as he could and to have his labs redone in 2 weeks to see the impact of prednisone and the other drugs on all his levels.

He's gone back to his HMO now to get his RX filled, but I could tell he was a bit depressed. I think it's more because I was there asking questions rather than any answer she was giving us. But I can also see that he is obviously not giving these doctors the full, complete picture.

I did also mention that he cannot exercise due to the pain in his feet, knees, hips and back. Again, she said there wasn't much she could do about it.

I'm wonder if a nephrologist really only comes into play when a patient gets to stage 4? Or perhaps look at the combination of drugs they are currently on? But she really couldn't make a change in the type of insulin he is getting which I found interesting, but probably has more to do with the fact that this was a referral outside his HMO.

I will just continue to make my observations here, keep this as my notes to refer back to, and wait for the next doctor's visit. In the meantime, until he wants to make changes in his diet, I don't see much else that can be done.