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.
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Hey, I've been using the Paradigm Real Time System for 6 months, and I just thought I would let you know a few things about it.
First of, it's extremely expensive. $6200 for the pump alone, then another $1000 for the CGMS portion, then $150 for monthly supplies for the pump, and $350 for monthly supplies for the CGMS. Insurance very, very, very rarely covers the CGMS portion, and often covers the pump portion for type 1s, but not-as-often for type 2s.
There is nothing none invasive about it. The pump uses one cannula, and the sensor uses another cannula. Both are inserted with needles, every 3 days (though some get the sensors to last longer). The sensor doesn't replace fingersticks, it's just meant to add more data. You still need to test at least 6-8x a day on the pump. If your husband isn't doing that already, he's not a candidate for a pump. I did not find the system accurate or helpful at all, so I gave up using it.
Pumps are great tools if you're motivated. They're a nightmare if you're not. It's not enough that YOU are motivated- your husband needs to be also.
Switching back to Lantus and Novolog seems like a good plan. That offers better control than N and R.
Did the nephrologist say anything about using salt substitutes? They're generally made from potassium, which the kidney has a hard time eliminating from the body when it's diseased. Generally people with kidney disease are advised not to use salt substitutes, though his may not be progressed enough for that to be a concern yet.
Good lucl.
It does seem like the specialists generally want to stick to their own area of care and not delve into other areas. I do wish your husband could get set up with a good endocrinologist. And I wish my husband would go back to his good endocrinologist :) His endo was masterful at adjusting insulin doses, being attentive to peaks and valleys, and looking at the big picture in terms of the body as a whole. He was also very into having spouses come to the visits if it was okay with the patient. His wife was a type I diabetic, who was normal in terms of having days of great compliance and days that weren't so great; this gave him a level of empathy for both patient and spouse they can't teach at med school. Wish all doctors were like that!
-Faith
http://spouseofanoncompliantdiabetic.blogspot.com/
Thanks for the info on the pump. I did search his HMO and there is one Endocrinologist at his facility, so I've printed out the doctor's information and will ask him if he's been to that doc.
The nephrologist did not seem to blink an eye when he said he was using salt substitutes. You know, 3:30 pm on Friday night...probably just wanted me and my questions out of the office as quickly as possible! But in her defense, as a non-HMO physician being seen as a referral because the HMO does not have a nephrology dept (go figure) there probably isn't much she could do. It's not like he's her regular patient although he sees her about once a year.
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