Airlift vs Ambulance.....

 For those of you who don't already know, Babygirl was hospitalized in the wee hours this morning.  She had some vomiting for a day and a half, with cold symptoms.  Covid testing was negative (important since Curlygirl is actually recovering from Covid).  

Yesterday I noticed that Babygirl was breathing heavily. She used her inhaler and said she felt okay. She actually ate dinner with us last night for the first time in a couple of days. But by bedtime the heavy breathing seemed worse, and I was concerned that she might tire during the night.  I set an alarm to check on her periodically. At 3:30 AM, the breathing was the same but she was clearly confused. She said she was looking for her socks, but then didn't notice the ones right in front of her.  I asked if she wanted her glasses, and she put her hands on her bare face and said she was already wearing them. She was uncoordinated, and I had some trouble getting her down the stairs and dressed.  I told Hubby I was headed to the ER with her.

We got there by 4 AM and were SWARMED by healthcare workers. They had her roomed, with EKG, chest x-ray, and blood work all done withing 15 minutes of our arrival  She was so sick that there was always a nurse, sometimes three, in the room at all times. 

The blood work came back and showed acute kidney failure, with numbers worse than they ever were prior to her transplant.  For the medical among you, her blood pH was 7.01.  Normal is 7.4.  Less than 7 is quite often fatal. She was breathing heavily to try to blow away the excess acid. 

By 7:30 we were ready to load into an ambulance.  I joked with the doctor, since this is our second ambulance ride to a distant hospital, that she'll have to try harder next time so we can take a helicopter. He said he wanted LifeFlight but they were grounded due to fog.  

Well.....DuckItAll. DuckItAll to hell.  (My autocorrect politely has been using "duck."  I'll go with that.)

Current status: Intubated on a ventilator, sedated, on dialysis with a feeding tube in place. 

All this for a cold with a stomach bug.  People wonder why we are so careful.  THIS is why. Transplant patients are never completely safe.

To answer some common questions:

1) We know WHAT is wrong with her but we don't know WHY.

2) We don't know if the kidney will survive.  It may recover, it may not.  Initially we weren't terribly certain that Babygirl herself would survive, but that seems to be...better.

3) No, she doesn't get automatically put back on a transplant list.  We don't know if she needs it, and there is a process for that. 

4) No, it is still not Covid. 

I've been here all day.  And I've just been informed that I have to leave by 8 PM and, due to Covid-related safety guidelines I'm only allowed to spend 4 hours with her tomorrow, all at one time, and no additional visitors.  I've never not been with her in the hospital. Never.

DeeDee  

PS: My sincere gratitude to the Emergency Room Team at Lourdes Hospital in Binghamton, the Emergency room teams at Strong Memorial Hospital, and the ICU doctors and nurses who have provided Babygirl's amazing care up her.

PPS: And a big DuckYou to Covid for making it impossible for me to stay with Babygirl.

Weight Management.....

 First, let me say that Babygirl is doing well. 

Second, let me say that this post is not about her, at least not directly.  My good high school friend Kirk asked his Facebook friends for support in losing weight a few months ago.  I and 2 others agreed to weekly weigh-ins (with photos of the scale!) and general support. 

A little over a month ago, Kirk said, "Dee, you haven't been more than 1 lb in either direction since we started this thing. What gives? How are you doing this?"

Like that represents some kind of success in a weight loss group? And since then, my weight has been creeping up. So let me talk, to my group in particular, about "how I am doing this."

First, let me say, that I suspect that those of us who are (or have been) more than 100 pounds overweight probably have undiagnosed eating disorders. Certainly, at the very least, we have deep-seeded psychological issues surrounding self-esteem, self-comfort, and food. I think that most weight loss attempts are doomed to fail if these issues are not addressed. I am also convinced that my "Clean-your-plate-there-are-starving-children-in-China" generation was trained from a very early age to ignore any evidence that we were already "full," so as adults we have issues with this as well. (Aside: Don't make your kids clean their plates.)

So, how did I end up at a peak weight of 270 lbs? And how did I go from 270 to 180 (+/-5)?

At age 30 I was 148. I got pregnant, had a bad marriage, had a lot of isolation, and binged my way upward. My second husband, a wonderful guy, had no issues with my weight, but was the kind of life partner who wouldn't mind joining in a binge (nice when you're sharing movie popcorn drenched in fake butter, not great for long-term health LOL).

At 46 I spent a day on the cardiac unit monitoring an irregular heartbeat. I was put on medication for that and for my high blood pressure. I weighed 260 that day. It changed NOTHING.

But at age 48, when Babygirl was 6, we made the appalling discovery that she was legally blind. We weren't sure if she'd be able to learn to see even with glasses, and suddenly a boatload of reality snapped into place: I was only 10 years away from the age my mom was when she had her first stroke, my health was terrible, and I had a kid who was going to need me to LIVE.

I started walking a mile a day with my (no surprise) morbidly obese dogs. All of us thought we were going to die just going up the little hill at the end of our street. I joined a women's gym and went 3 times a week. I committed to eating 5-7 servings of fruits and vegetables every day. I lost 30 pounds in the first 4 months, and then stalled for 3 months (AND I was waking up hungry in the middle of the night!), so I went to see my doctor.

Blood work picked up prediabetes. He put me on metformin and a statin for my cholesterol.

I lost another 30 pounds and stalled. He added Victoza (a diabetes medication with weight loss as a major side effect). I kept walking, no less than 2 miles a day. I kept up with the gym.

Since then it's been and up and down kinda thing. Somewhere in the middle of all of this, Babygirl (who did learn to see but not perfectly) developed kidney failure. We had to survive dialysis, and the horrible post transplant year. My mom had dementia through most of this, and I had caregiver duties. I'm going to guess that I've actually lost more than 300 pounds total, because during that time, for every net 10 pound loss I put on 5 pounds 5 times LOL.

I've been stalled at around 180 for over 2 years. The goal is 160. I mean, it's been nice seeing my medical chart changed from "morbidly obese" to "obese" to just "overweight." My blood sugar is okay (I advanced from prediabetes to diabetes despite the weight loss). My cholesterol is excellent. I am still walking (10 miles yesterday !), but not doing the gym or yoga, which were, I think, major drivers in the weight management scheme.

But: Here's a subtle issue. Joining a weight management group has made it HARDER. It has tripped the trigger on my personal tendency to binge, which makes calorie control VERY difficult. Kirk asked me "How are you doing this?" on June 28. I've been eating my way through the snack cupboard for 6 weeks contemplating this post. Amazingly enough, today's weigh in was dead-on 180, though last week was closer to 185.

But the bottom line is this: I NEVER went "on a diet." Over a period of 15 years I made permanent, lasting changes in what and how I eat, and a permanent, lasting commitment to regular physical activity. And I made the commitment for Babygirl initially, because somehow I could never see that I myself was worth the commitment. That aspect of things has improved, and I continue not only for her sake but for my own.

So, Kirk (et al), here is how I am "doing this":

1) Find a reason for permanent change that actually matters to you.

2) Stop "going on a diet" and make long term sustainable changes in what/how much you eat. And, if applicable, stop drinking calories. Americans, on average, take in 40% of their calories in liquid form.

3) Make a long term commitment to daily physical activity.

4) Find a doctor who will advocate for you and help you change. And remember that even bariatric surgery will completely fail if you don't do the first 3 things.

DeeDee

Ode To A Lost Child.....

 Steeped in the alcohol of your mother's womb

Brain cells damaged, dying. Indomitable spirit soaring. Born, life, laughter, generosity

Limits.

The laugher of girlhood, the gift of smiles, laughter, mischief. 

The curse of demon impulse, thoughtless, careless. 

Passing to your child love, life, laughter, happiness.

Forgetting in a careless moment that all that can be snuffed out, denied, deadened, killed.

Can I do less than offer him the chance at better than what you were given, whatever the cost to you, beloved little child of my heart? Can I do less than stand for him, against the damage done to you (Oh, not your fault, my beloved, NOT YOUR FAULT!! But still, your responsibility!) to care for this innocent one, this beloved of mine and yours, and offer him better??

Oh, GOD! To make me choose between the child I love and the child I have not met, and choose...a better life for him, I hope, I pray, oh LORD I pray! Please!

Let this little grandson, whom I have never seen, let him live a life of grace and peace with a family who clearly already loves him, and will care for him all of his life. Let my beloved girl learn to love him enough to keep him safe.

Give the courts the gift of sight for him as well.  And give us all peace.

Amen.

DeeDee

Nine of Sixteen?.....

 Nine years ago today, Babygirl got her new kidney.  Miraculous, life altering, amazing, wonderful. It's all of those things. It ended a terrible era of freedom limiting dialysis and suffering.  We are grateful.

It began a lot of other things: Immunosuppression. Headaches (both the literal and figurative type). Severe, undiagnosable infections and (thankfully mild and reversible) rejection episodes. All of these have been controlled.

But it began something more subtle.  A countdown. The life expectancy of a transplanted deceased donor kidney is 10-16 years (add 5 more if the donor is living).  The record so far celebrated 50 years in 2019. He was a 72 year old man in England who's brother donated a kidney to him when they were young (the brother later died of a heart attack at age 38!).  

No matter.  We don't know.  Babygirl does an absolutely amazing job taking care of Jorge's kidney.  I met another fairly young transplant reipient recently, and she is quite pleased, after 6 years, that her creatinine is 1.4.  Jorge's is 0.8, which is excellent.  (In case you aren't sure, lower is better.  And 1.4 is early kidney failure, no matter how you look at it. Babygirl is doing well.  But 10 years? One left. Sixteen? Then 7.  Fifty? Well, we don't have England's National Health Service, but barring any gaps in care?  It's something to shoot for.

DeeDee

Ten Years Ago.....

 Today is my Mom's birthday. If she hadn't gotten lung cancer, she'd be 83, and so far into her dementia that she'd likely not know us.  But she'd still like lasagna for dinner, and cake.

Ten years ago today I was in the hospital.  Somewhere in the middle of the headache hell that started out of nowhere, halfway into a month or more of high-dose steroids, I had an episode of severe chest pain, cold sweats and dizziness.  The fact that this all happened WHILE I was in the shower made it more epic.  Hubby drove me to the hospital, soaking wet, dripping conditioner all over the place, and ready to vomit. I was admitted for a couple of days' observation, and had a stress test on the morning of Mom's birthday.  I thought I'd done pretty well, honestly:  I finished the entire thing, no problem.  But when you've finished running, they inject you with this radioactive stuff and scan your heart.

A couple of hours later, a cardiac nurse who could not have been more than 22 came in to give me the news:  You failed the test.  You need cardiac catheterization.  You get to go home, but they want you back the day after Christmas for that test.

(I don't know if you've ever been on steroids.  As near as I can tell, they are something like bipolar disorder mixed with menopause in a bottle.  You can't sleep at night because you are too warm and too busy cleaning corners and wrapping individual sticks of gum for Christmas stockings.  And you REALLY want to call random people at 3 AM.  And then you crash unexpectedly for death-and-resurrection naps, which, if you don't get them, you cry for no reason. Or you cry anyway. Or shout at someone. )

So I started to cry. Not the pretty kind - the blubbery, snot-producing kind.  "It's my Mom's birthday. There are going to be 20 people at my house for dinner. And tomorrow is Christmas Eve and they are coming back for that and I direct the choir fot THREE church services AND THEN CHRISTMAS!!!!"

God bless that nurse. She pulled her shoulders back, pointed her finger into my face, and VERY sternly said, "Do you know what you need to DO??"

'Wh-wh-whaat?" I blubbered.

"You need to go home, and act like a man with a COLD!" she scolded.

Oh my freaking goodness.

I never turned crying to laughing so fast in my life. It remains the single best piece of medical advice I have EVER been given.  And I followed it.

But I remember thinking, at the end of 2010, how horrible the last few months had been.  How grateful I was that the year was behind me, and how hopeful I was that the next would be better. I had no idea on earth that 2011 would be an endless horror, and 2012 almost moreso.

The struggles we have had. The blessings.  How do you untangle it all?  Babygirl's struggles with dialysis were going on as we welcomed our precious little Boo. Babygirl's transplant came right before Squeaker did.  She needed antirejection treament when a little Rose came our way, and little man came into the world the same week my mom left it. 

2020 was hard for a LOT of people.  Job loss and insecurity, sickness, loss of family members and friends.  The general political shitshow, the unkindness, social isolation, the endless home learning.  People are REALLY wanting this year to be DONE, and here we are cleaning up the biggest snowfall on record while anticipating an epic flood.

(Personally, my bad.  I didn't plan on making lasagna this year.  So Mom arranged it so I HAVE to make it.)

I've reached a point, however, where I'm just riding the ride.  If I've learned anything at all from the past 10 years, it's that I have precisely zero control over what's around the next bend.

DeeDee

Telling Right From Wrong.....

 Election Day was 2 days ago and we don't have a declared winner.  This does not distress me. 

Our Commander in Chief had begun litigating the undeclared outcome.  This does not surprise me. 

What does surprise and distress me is how close the numbers are.  This indicates to me that the country is divided almost exactly in half, and EACH half is ABSOLUTELY convinced that the ENTIRE OTHER HALF does not know how to tell right from wrong. At. All.

This would be easier to cope with if I could just explain it away as a "low IQ" issue, or a "lack of education" issue, but I'm a doctor, and have colleagues living in a "blue state" who have voted on both sides.  

How is this country going to recover from believing that HALF of everyone around us is so....wrong? Stupid? Stubborn? Misinformed? When they believe the same of us?

Lord God, grant us grace.

DeeDee

November and Thankfulness......

 I'm pretty sure I skipped expressions of gratitude on the Blog last year, and I'm not sure why.  There are plenty of reasons to be grateful, for sure.  Babygirl is all grown up, and she is doing very well from an overall health standpoint. She is taking nearly full responsibility for maintaining her health these days, and it's a pretty impressive thing.

But we shared a really BIG rite of passage together yesterday.  We went together to vote early in what was her first presidential election.  (My first was Carter. Lordy, I'm old.) She's been voting 3 years, since age 18. She actually registered to vote on the street during Porch Fest at a Get Out The Vote outreach (proof that these events are worth doing, folks - keep up the good work!). We've had some lively conversations over the past year about the candidates, the parties, the issues, Supreme Court Justices, and what matters to us in the long run. 

Neither of us is happy about the ages of the two men running. But someone online said, "It's not a prom date. It's a chess move." That seemed like a pretty profound way to look at it, in reality.  Which of these ridiculously elderly men gets us closer to whatever goal we have in mind? 

As we finished waiting in line, and were about to step forward to sign in for our ballots, I looked her in the eye and said, "May the odds be ever in our favor!"

We went in laughing.  I came out praying.  

Babygirl is going to need healthcare for a long, long time. Getting her that care has been an ongoing battle.  May the odds, indeed, be ever in our favor.

Thank you, Lord, for the right to vote.

DeeDee.