Just when you thought it was safe . . .

I just edited this . . . somehow left  out the fact that Diabetes Wife's hubby managed to drink Caladryl instead of Pepto Bismol, with dire consequences!  Sorry, DW, don't know how I did that . . . must be the wonderful week I had.  Hope all is better now!

Have been reading everyone's posts this past week, but have been too disheartened to make any of my own posts.  It seems that things have been really awful for several of us this past week!

Sandy is feeling terribly overwhelmed with all her hubby's needs and her own exhaustion.  I'm thinking most of us have been there, as we are all human!

Crazy Wife has finally decided that she needs to make some major life changes for herself and her children (by the way, good for you, Crazy Wife . . . I know it will not be easy.)

Tom's Wife's DH broke the garage door over the hood of their car, and she says that "Mr. Jerko" has now returned.  Hopefully, he is on his way out of the low that she (just?) wrote about.

Lynn's hubby OD'd on candy, and then wanted more (I'm thinking he's not the only one that did that!)

S weathered a major meltdown from her hubby after he felt that she "said the wrong thing," then he overheard her say to herself later, "I hate you."  S, I've been there.  I say those exact words so often to myself, I feel horribly guilty much of the time! He just hasn't overheard me . . . yet!  She also wrote of family problems with a sister-in-law from hell . . . guess that's going around too, as I have a few things to say about mine today!

Sar is struggling with a multitude of problems, not the least of which is a loss of space and her own clean bathroom after moving from her much more spacious house.  She also is weathering major multiple meltdowns from her husband.  How much can one person take?  I loved her analogy to her DH's blow-up to "The Wrath of Khan . . ."

The analogy I think of for myself is the JAWS movie: "Just when you thought it was safe . . . "  I can hear the theme playing in my head,  just before the shark attacks.

For me, the week before Easter was a great one, and then on Easter morning, as I was getting food ready to take to my brother and sister-in-law's for dinner,  I managed to "say the wrong thing."  It was like World War III, and I screamed back, but this did NOT help.  Had a pie in the oven been done a little sooner, I would have LEFT sooner.  The original plan was for both of us to go, but when I got home from the Easter service (which I went to by myself), he still had not managed to take a shower and be ready to leave with me.  It was noon.  Since I was going to be late, he said he would be over later.

This was before the big blow-up; before I said the wrong thing, which really amounted to nothing.  He had asked me 3 or 4 times to re-explain the same thing I was trying to tell him about some friends at church, and I finally questioned why he kept misunderstanding what I was telling him.  WOW, wrong thing to say!  His sugar (he said) was 83 at the time, which shouldn't account for his behavior.  But then, he had slept almost 2 days straight before this happened, and hadn't been taking his anti-anxiety meds (or anything else) when he should have been.  He was still screaming when I left, telling me he would NOT apologize later, as he was right and I was wrong, and he had taped the conversation to prove it.  As I walked out the door, I told him not to bother coming at all.  He didn't, and I had a peaceful dinner with family, except . . . my brother said he had to tell me something, but he wanted to wait until after Easter.  He said it was bad, and he was obviously very upset.  Went back home to stony silence that night, and no, I still haven't gotten an apology from hubby.

So . . .  another week in the life!  May this coming week be an improvement . . . for ALL of us.  And may we all get some much-needed sleep.

Happy Easter

Happy Easter to all of you.  May the holiday be "kind" to each of us!

Hugs,

Lilly

Good weekend!

Just had a great weekend with hubby, which isn't something that has happened in a very long time.  Our anniversary was just the other day, and I suggested we go to a special dinner where there was gourmet food and (lots!) of wine.  Also some great music.  It didn't start until 6:30, so he had all day to get ready: showered, shaved, etc.  I rarely try to do anything with him in the morning anymore, as he often sleeps such crazy hours.   Anyway, it was great, so I will count my blessings, as he is still talking about what a great time he had.  Sugar stayed under control, he didn't get sick, no falling . . . awesome.  Just got to thinking: there haven't been any of those horrible blow-ups in awhile.  Am I just being lucky, or is the anti-anxiety medicine (that he actually kept taking this time) working miracles?  Or do we both need to be "sloshed" on alcohol to have a good time with each other?  I totally get "waiting for the other shoe to drop," but think I'll enjoy the momentum on this while it lasts, whatever the reason.  Whew, wish me luck!

Lilly

Transplant Centers' (non) Compliance with Living Donor Follow-up

The article below is compliments of Cristy's blog, "Living Donors are People Too."  If you click on the title of this post, it will take you right to her original post.  Kinda makes me wonder what could be down the road for me, and also really scares me that there are STILL no good longitudinal studies on living donors.  WHY has this been allowed to happen?  Really does make you feel like the general consensus is: "Okay, we got your kidney.   Now you can get out of here and leave us alone!"  Makes me think even more highly of the medical profession.  Read on:

Once again, OPTN has proposed policies up for public comment: http://optn.transplant.hrsa.gov/policiesAndBylaws/publicComment/proposals.asp

Important to living donors is Number 7, regarding the improvement of living donor followup data. It's a document worth reading because it provides the history and background on living donor followup policies and data submission. Buried within its pages are these little nuggets:

On July 22, 2008, the committee chair gave a presentation to the Membership and Professional Standards Committee (MPSC) on the current status of living donor follow-up. That presentation explained that the Committee’s review of LDF forms revealed a large number of programs reported their donors as “lost to follow‐up” when it is uncertain if reasonable measures were taken to contact donors. Additionally, this committee’s review found that completing two data elements (status and date of status) on the form enabled a center to meet requirements for completion of the form.

We had heard rumors of such things, but this is the first time it's been confirmed that transplant centers could, in effect, return an empty form and receive credit for complying with the living donor follow-up policy.

***

If you recall, I spoke some time ago of the OPTN living donor data task force report that was never publicly released (It's good to know people sometimes). Here's their most damning conclusion, finally out for the world to see:

As currently collected, the OPTN/UNOS data are incomplete beyond the point when the discharge form is submitted (up to 6 weeks post donation, but much earlier for most donors) and therefore useless for research or making conclusions about living donor safety.

***

The living donor follow-up policy was implemented in 2000 (technically late 1999) and signed by the Secretary of State, making it mandatory for program certification and Medicare reimbursement. All similar policies require a 95% compliance rate. The centers have opposed this for a number of reasons, one of which being the number of foreign nationals brought into the country to relinquish an organ, and another being their seemingly instinctual rebellion against anyone holding them to any standard whatsoever.

Anyway, for some reason, this proposed policy says:

Also during it September 2010 meeting, the Committee did endorse developing a policy proposal to establish a threshold for the percentage of living donors that any program can categorize as “lost to follow-up” i.e. donor without a valid status (alive or dead) and accurately reported at required post operative internals. The Committee supported establishing a 10% maximum threshold for categorizing donors as “lost to follow-up”.

I am adept at basic math and 10% 'lost' would equal 90% and not 95%.

***

Now here's my favorite part (And by favorite, I mean the info that is most imperative to the public good). I blogged some time ago regarding the fact that some transplant centers have reported all their living donors as 'lost to follow-up'. The source article was no specific than that, but this proposed policy explanation sheds a bit more light on the matter - see page 6.


For living donors who donated from July 1, 2007 through June 30, 2008, a median 61.8% of one-year living donor follow-up forms indicated whether or not the living kidney donor was alive or dead. The number jumps to 75% of liver donors, and there are a lot fewer of them, both donors and programs.


15 transplant centers had ZERO follow-up on ANY of their living kidney donors during that time period, and only 29 were 100% compliant.

So how many met OPTN's 90% compliance rate? That's a little harder to tell since I only have a bar graph that isn't particularly detailed. However, based on the aforementioned numbers (and a handy tape measure), I'd approximate that 40 transplant centers out of over 200 know whether or not 90% of their living kidney donors are alive or dead one-year after surgery.

Living liver donors fared a bit better. Out of 73 living liver donor transplant programs*, 14 had 100% compliance while only 5 had none. Meanwhile the rest had reported somewhere between 1% and approximately 85%.

Do I need to say this isn't good?



The tragic part of this proposed policy is that it doesn't suggest anything revolutionary. It only requires transplant centers to ensure if someone is breathing, a fact that can be cooborated by cross-checking a living donor's social security number in the Social Security Death Master File (meaning that actual contact with the living donor isn't required to ferret out this information). It does nothing to improve data relating to complications, rehospitalizations, insurance status, psychosocial difficulties, or (shock) long-term ramifications.


Why so wimpy? I'll let the document speak for itself:

The Committee supports the collection of clinical data on living donors for a minimum of two years. However, the Committee understands that there is a lack of consensus on the value of clinical data on living donors during the early post operative period, and consequently anticipates there would be resistance or opposition to new requirements to obtain and report lab results for living donors for up to two years at this time.


Just to recap: Data doesn't exist, yet transplant centers have decided that data has no value. I'd like to know the logic behind that conclusion.

And how many years does the transplant industry collect information on recipients? That's right - ten.




*according to the OPTN membership directory.

Happy Spring!

Just looking at these makes me feel better!  May we all take time to enjoy the beauty in our lives . . .

To S: A Place of Solace (Sort of!)

newtothis said...

"I like the idea of a "woman cave". I miss having a basement. In my part of the country basements are not practical. I take that back, they would be VERY practical when the wild winds attempt to pick up and take away every thing in their paths. Alas, basements are rare here. It didn't sound at all terrible to me that you were relieved when he fell asleep. Why should you feel guilty for enjoying some peace? Luckily for me DH hasn't been LOUD in a few weeks. He's been doing what he needs to for his type-2 and so far so good. However, he has lied to me. He's still not testing. The guy either doesn't know his meter stores his past tests or doesn't realize I know his meter stores past tests. Therefore, I have no idea if he's low when monster jerk shows up or he's just an incredibly mean high sugar kind of guy. I've yet to find the magic word to get him to stop and start playing nicely with others. As far as I'm cocnerned...another glass of wine is never a bad idea!"

Love, S

I know that in certain parts of the country, basements are rare because of the terrain and the expense of digging them.  I have to admit, I love my sanctuary in the basement.  I know I am very fortunate to have it.  Not everyone can have that luxury.  It is pretty much a finished basement, and I have a place for all my projects, books, genealogy, etc. When hubby started having difficulty getting up and down the stairs, I decided to make it my own, with his blessings.  I can still occasionally hear the rants, but it still gives me a "get away space" when I need it, and the weather is not the best.  Also a great place to have girlfriends over when we are crafting, etc.  THANK YOU for telling me I'm not horrible for being glad he fell asleep!  When I asked if anyone else is "loud," I'm not even talking about the screaming episodes . . . I am talking about consistently speaking (often for hours . . . God help me) in a very loud, rapid, nonstop voice, and seeming to be unaware of it, even after having been asked to tone it down.  He will give me some senseless excuse for talking so loudly, and then continue at the very same level.  Drives me crazy, to the point where I just need to get away from it.  Add to the loudness the fact that he is usually not making a lot of sense, often thinks he's being funny, and WILL NOT shut up.  If I make too much of an issue of it, then he gets mad.  Easier to just go to the basement and find something to do (which isn't hard since I have everything right there) or go for a drive somewhere else for awhile.  Honestly, I almost wonder if I could be "talked to death" if I didn't get some respite!  It is very unsettling, and impossible to relax or unwind when he is doing this.  Thus the drives, the woman cave, the wine, the . . . I could go on and on, but you get the idea. Thank you also for sharing about the highs and lows with your husband.  Mine can get incredibly mean at both ends of the spectrum, and sometimes it is hard to sort out.  At least he does frequently check his glucose levels, but not always when I wish he would.  The big giveaway for me is if he starts with the cold sweats, then I know the sugar is really low.  Unfortunately, this is usually shortly before he passes out!  Unreal that your hubby is lying to you about checking his sugar.  Sounds like he figures if he lies to you, you'll quit bugging him.  And honestly (unfortunately!) I don't think there are any magic words to get them to "play nice."  If there were, I think we all would have discovered them by now. :-(  Take care, Lilly

What Happens When We're Gone?

Sandy commented on my Welcome . . . to the Twilight Zone! post:

"This was starting to sound like my day! My hubby has a hard time with balance and staying awake. Has hit his head, knocked himself out, gone low, and anything else you can imagine, while i am at work. Oh the joys!"

First of all, I just want to tell Sandy I am so sorry she and her hubby have had to go through all this.  There is never a dull moment, is there?  You have so much courage, and are dealing with so much. Also got me to thinking (even more than I usually do) about what things will be like in the future.  I am tentatively planning a trip to the Southwest this summer to see family.  If I do indeed go, I will be going by myself, as there will be much driving and different destinations involved.  I will be going with hubby's blessings, but I am also concerned about leaving him for that long.  At the same time, I really feel I need to go now, before things get any worse for him, and I can't go at all.  I will most likely be asking his family and our friends to "check in" on him when they can while I am gone, but am really hoping that will be enough!  Feeling like it is now or never if I want to make this trip, but still worried.   And I really do wonder: what does happen when I'm at work, etc.?  How much happens with blood sugar lows, etc. that I never know about, and he doesn't remember? 

A "Normal" Couple?

Diabetes Wife wrote (in part) the other day:

"I just don't feel like we are a "normal" couple anymore. OK, when we got married, we were. But then he went on insulin. And he decided not to manage his diabetes. But now he is doing a pretty good job of managing it. But with all the other complications....we don't have sex. Is that normal? We don't go to the movies and that used to be a weekly thing we did. We don't go out to eat and we used to do that almost every day. We still love each other very much, but we have given up so much to accomodate his disease. And yes, I do go to the movies with my girlfriends, and I go out to lunch with them. But as a couple.....he and I are a far cry from "normal" and it is due to diabetes and all of it's complications after his body has lived with this disease for 33 years. Still....it's good to laugh at what others write about our lives." 

I have thought a lot about this, and in fact posted similar feelings the same day she wrote this.  (See my last post: Welcome . . . to the Twilight Zone!)  I totally understand what she is saying.  Sometimes, it is just so hard.  I so miss the good times we used to have before things got so crazy . . .

Today, I am just exhausted.  Hubby has been running border-line low all day (in the 80's, despite anything he has eaten, etc.).  There have been no big blow-ups, but he has talked non-stop ALL DAY LONG, misunderstood things, and been semi-argumentative . . . all this while we also had company over at the same time.  Yes, it was a family member, thank goodness, but between dealing with the non-stop (LOUD!) babble and having other people in the house, I feel like I've been run over by a steam roller.  I had looked forward to a peaceful Saturday when this person called to come over.  The thing is, it would have been fine if hubby had been on an even keel.  This sounds terrible, but I was so relieved when he finally fell asleep on the couch after they left.  And now I feel guilty for feeling this way.  Just wondering: does anyone else out there get REALLY LOUD when sugars are out of whack?  I feel almost shell-shocked by the time it is over, and he will NOT tone it down, no matter how many times I ask.

Peace at last, but it also won't be too long before bed time for me.  So, I am in my basement "woman cave," just enjoying the quiet and trying to "chill out" so that I can hopefully sleep tonight.  Thinking maybe I need another glass of wine . . .