Friday, April 02, 2010

The nephrologist

Said he doesn't think hubby's kidney failure is from the diabetes.

Go figure.

I'm trying to figure out if the nephrologist is an idiot, or uneducated, or just doesn't have a clue?

He was a pretty young guy.

He wanted to reduce the alopurinol from 500 mg to 150 mg. Hubby takes it for gout and to keep his uric acid low. It's working just fine. Why reduce it? Especially since hubby just had a MAJOR gout attack last weekend.

So the doctor at least agreed that he would make that a referral to hubby's GP and let the GP (who just saw the gout) make the call.

It's like they all just look at a chart and tell him what to do. But no one is looking at the whole - the entire picture - to see what might be best to do.

Lower the alopurinol, increase the gout, increase the prednisone, make the glucose go up, increase the insulin......

Am I the only person on earth who sees the path this would set him on?

I honestly think none of his physicians really care.

And that is so sad.


Wednesday, March 31, 2010

Agnus wrote

Gosh, I feel for you. Been there. Stage-setter: Different risks - history of addiction, depression, HepC, bad hips and shoulders; Amaryl, Metformin and Glucophage; A1Cs 7- 8, bs 200-400, never reported. He refused insulin, afraid needles would trigger a heroin relapse. So, bypass in 1999.
What to expect? Tears, normal and healthy, release bad stress. Testosterone disappears in surgery so he's all estrogen now til it rebuilds – enjoy it! Men ignore this, you'll hate it: We watched chick flicks and boo-hooed together, what a hoot!
His pain was hard to control in this order:
1) where the tubes had been, 8-9 first week, livable by week 3
2) lower back, 8-9. BTW they quit using steel gurneys; cardio says now they pad ‘em cuz the patient's full weight rests on spine and sacrum but there’s no blood-fed tissue to protect nerves.
3) legs where veins were pulled - fiery 7-9 for weeks, worse when he walked for his rehab. With pain pills he gradually got walking 45 minutes a day after 2-3 months.
We had two pretty good years after the surgery when he stuck with rehab. They stepped him down to Tramadol but a year later pulled that too when his liver enzymes crept up. He stopped walking, too painful. He could not return to factory work, failed the paperwork parts of retraining for new work, stayed unemployed 3 years, then found part-time work he loved.
His heart, thank God, has stayed great. They had time for only 5 of 6 bypasses, but the last was not critical. A recent check 11 years post-op shows his heart still ticking along fine. (They let him back on tramadol last year; guess it's moot now that he has cirhossis.) And he injects insulin now 4x day.
Sometime post-surgery I started noticing what I thought were lows or highs, but somehow different. He was tested and found to have a learning disability affecting multi-dimension and abstract perceptions. They said he may have had it all along, just noticeable now that he was out of the factory. Maybe. Or, diabetes? Surgery? Drug abuse? Rx side-fx? Head injuries? He’s had ‘em all. In 2003 he was diagnosed with a liver-related brain disease too.
I walk a daily tightrope between taking care of myself and taking care of him, being his friend and being his mommy, being his support and being his boss. I used to ask myself why I stayed, but I know: I love the guy, I don't break vows before God today, and I don't want to spend the rest of my life knowing myself as the kind of person who would bail on such a sick man when he has no one else.
My belief is that we are each here to learn certain lessons in life, and God will help us learn them as quickly and painlessly as we will let Him. His illness has changed me in ways I don't like, but also in ways that I am pretty proud of today (see preceding paragraph). I might have learned these life lessons some other way, like having a terminally ill child, or becoming a paraplegic or something. In the end, I had to surrender and accept that neither God nor I had made a mistake about my marriage. This is where I belong.
My Dad was a stick-to-the-end husband and father, and in my younger days I did not respect that or follow his example. Fortunately he saw me change, and before Alzheimer’s got him, he recognized me as a “sticker” now too. Dad died 2 weeks ago and it feels good to know he is proud of me today.
Well, I've written War and Peace again, I'm afraid - apparently I need a more regular outlet for my creativity or it floods when I'm pumped! Hope you're not drowned. You are a blessing, and I'm praying for you.

Agnes, I am so sorry for the death of your father. I lost mine almost 20 years ago and it seems like yesterday in so many ways. Thank you for writing your story. You are quite brave to do so. And gave me a few new things to think about. I have to say, I thought it was so strange last week when he agreed to watch a chick flick with me! But you have now explained that to me, so I will take advantage of it while it lasts! :o)

It's good to know that he is 11 years post op. I think once they get my hubby's back fixed - he may outlive me!

After the past several days, today was a good day. It was wonderful! His pain is down, his sugars are remaining good, and he was in overall good spirits. I really needed a break and I got it today! And I had a really good night's sleep last night and looking forward to another one tonight.


Sharing my charts

Here are the spreadsheets that I came up with to chart his daily intake of food (we have to limit sodium, fat, carbs, calories, fiber.....) and charting of blood tests, with places for his hypos. After a week of using these, they seem to meet his needs. The nurses are beyond happy with what we can fax to them. We'll see what the nutritionist says when we see her next week.

Just click on the image to make it larger.


Tuesday, March 30, 2010

Thank you!

I received this comment today:

Wife: Chances are your husband does not know what he's putting you through, at least not at THAT moment. When we go Low, resistence and fussiness are common happenings. We will fight to avoid eating or drinking what's necessary. For Type 1s, that can manifest into crazy, surreal, sci-like scenes where you're more like an Alien trying to poison him rather than a loving spouse trying to help. That is what it is. Hopefully, your husband is someone who feels guilt following these Lows and apologizes after the fact. They are tormenting on those who must confront them, and I personally am thankful for my wife, the efforts of my parents during my childhood, and all those who've had to deal with diabetic hypos to whatever extent. Thanks for posting this, and continued wishes for good luck your way.

Thank you.

He always feels guilt the following day, but never really knows why. I feel so bad for him. It must be awful not being able to remember what happened, but feeling you need to apologize.

I do think he is less and less able to tell when a low is coming on, so I am really grateful that he has started testing numerous times a day. It is making him aware that he is not aware of the hypos.

I got a 2 hour nap in this afternoon which really helped. He slept about 2 hours as well. Pain still significant after 6 narcotic strength pain pills today. Getting ready to do our "evening routine" as we like to call it. Hope we can get some much needed sleep tonight.



Daily notes

Don't have much time for anything else in life right now other than charting his food/meds/stats and keeping notes. Thought I would post this mornings notes here. I like to write things down before I/he calls a doctor just so we don't forget something in the conversation.

Wed - 4 sugar lows
Thurs 6 sugar lows
Fri 3 sugar lows, saw endo, changed humulin
Sat ok
Sun 1 low
Mon 1 low

Possibly too much OJ to resolve the lows, too much citric acid, thinks his gout has flared up.

Infection in l hand/wrist and l knee.

started colchicine on Saturday, took until he got nauseated (per instructions)

Has not been taking diladid as he is still constipated somewhat. Had hard BM yesterday, still taking stool softeners.

In pain since last Friday, not improving.
Awake at 3 am today.
4 extra strength tylenol at 6 am
1 diladid at 8 am
Zero relief from pain.

Overall pain level 7, spikes to 9 are random
Left writs pain 10 to touch or move
So much pain he is now nauseated from the pain

Backpain with no movement is 5
hip to knee pain 0-7 in cycles
He has had hot searing pain from outside left hip to knee since he got home from surgery, had associated it with healing, but that pain has intensified since Friday.

Called surgeon's office. In surgery til 3 pm today. Nurse does not think this is gout due to location of infections, wants him to see a physician today.

Called the doctor's office and his GP is out today.

Cardiac Rehab assessment at 9:15 am.
1 hour assessment of his physical condition.
Do not want to start PT until next week due to pain levels today.
Nurse ret'd call, go from there to doctor's office, get labs first.

Labs done, then waiting
GP: only way to know if it's gout is to do a needle biopsy, but he doesn't see enough fluid to do that. Uric acid level won't tell anything - usually goes down during an attack.
While not typical joints for gout to attack, agree he has had gout there in the past. Atypical in how it started, but that doesn't matter now either.
Treat with prednisone for presumed gout, a lower dose. There should be clear progress by Thursday. If not, or if it's worse tomorrow, call back in.

Prednisone increases blood sugars, contact endocrinology to adjust Humulin levels.

At the clinic from 9 am - noon. Home. Fixed lunch. Basically skipped entire morning routines, no glucose levels, etc.

Called cardiac surgeon's office to insure ok to take prednisone this soon after surgery. (She called back, it's ok)

Called endo office. Doctor is out ill today, but taking messages Nurse not sure how to adjust humulin, wants to consult with physician.

1 pm. First dose of prednisone. And doubled the dilaudid.

Sound asleep at 1:30 pm.

I wish someone who has been down this road would post and let me know what to expect next! Maybe it's not possible.

It's now almost 2pm. And I have been providing him care since 6 am - non stop. Probably not a good day for me to make any decisions. But I have to wonder what I'm doing still here. How much can love endure? He has absolutely no quality of life at the moment. I'm trying hard to see any kind of light at the end of the tunnel, but at the moment, it looks like one huge black hole. I do know it's's just not visible at all today. I am in my one minute at a time mode. If I even stop to think how much of my life is currently being consumed by HIS disease I will get depressed. I thank God daily that I am healthy. Because I know that no one else in his life is going to take care of him.