Friday, November 24, 2017

The "The Day After....", edition.

Good Friday morning!  Sitting in the bed watching "The Highlander", while doing treatment. Need to get it out of the way. We fixed dinner yesterday for 6. Me, Brian and Daddy, of course. And Shawn flew in from Oregon. Yes. I like that my child is close enough. Whoo hoo!! Our other 2 guests are 2 close friends of ours who recently moved from Detroit to Las Vegas. We served Honey baked ham, roast turkey and smoked turkey. We cooked candied sweet potatoes, dressing with sausage, macaroni and cheese and chipotle green beans. I also had the requisite relish tray...I got that from my mom and can't seem to do away with it!  We all overdid it on the deserts. Our guests brought a delicious chocolate pie and a pound cake. We had a pumpkin pie (for dad) and a pecan pie. I also wanted a caramel cake, but I haven't been able to find anything remotely like Reen's out here. {{cry}}. We order a caramel cake from a "favorite bakery". Not only was I disappointed, I didn't like it...at all. Money spent and lesson learned. We threw it away.  Anyway. We all had a great time. The puppy was crated during dinner and never uttered a peep. Good dog!  And we all had a great time!!  So glad they are here! 

Did I mention that Shawn flew in Wednesday night?  Well she did. It's a cheap 2 hour flight from Portland. I love having her I. The same time zone and relatively close!  Anyway. Dad wanted to take me and Brian out to dinner for our anniversary and we agreed to wait until Shawn arrived. The dilemma was to figure out where we wanted to go. We finally decided on The Melting Pot. Brian Shawn and I had been in Detroit. Dad had never been. I made reservations for Friday evening and off we went. We did the full four course meal. Cheese fondue, a salad, proteins, and chocolate. Yes it was good and guess   who enjoyed it?  Why Dad did, of course!  He'd never had fondue. And he even enjoyed cooking his proteins in the broth. When the final course of chocolate came out he declined. But his granddaughter told him he should try it since he was there. And try it he did. And he loved it!  Lol. I hadn't seen my dad eat desert or chocolate since....I can't remember. We got the dark chocolate fondue and it was just delicious. Yum yum yum. 

I should mention that I started this entry Friday morning during treatment and just didn't feel like writing and now it's Sunday morning.  Eh. Treatment is pretty routine. Wednesday I had a blood pressure drop, but I was able to alert Brian  and he gave me some saline which fixed the problem. During Friday's treatment and treatment last night, Shawn was in bed with me. <3. 

So now it's Sunday morning. The kid is still asleep. Dad is at church, the puppy is chewing one of his many toys.  So many toys. Spoiled puppy!  Brian in on his iPad and I'm finishing this entry. That's pretty much it. Shawn leaves in the morning, but she's already purchased her tickets for her Christmas visit...Whoo hoo!!  It's been unseasonably warm..81 degrees on Thanksgiving. Nice. Movie day today for us. Have a great day!  

Desert!




Always moving..

Friday, November 17, 2017

The "Dialysis, A Puppy, and Thanksgiving", edition.

Good Friday morning. Would you believe Glen, the puppy, has kept us busy?  And how have we settled into the new house?  Well let's start with something totally new and unrelated. When we moved to the new house we knew we'd need to eventually replace the appliances. With the stove being replaced immediately. They old one was pretty funky and 2 burners didn't work..on a gas stove. Oh yeah. We went from an electric stove for most of our marriage to gas. Yeah we had gas in our first house. But I grew up with electric. Anyway. We got a pretty nice countertop gas stove. Then just before Labor Day we had an "incident" with the lock on the oven which killed the oven.  A built in oven and microwave. Okay. So instead of getting the microwave/oven combo, I opted for the less expensive option of a double oven and a counter top microwave. 

And oh yeah. The dishwasher sort of wobbled so that needed to be replaced. The plan was to get the dishwasher after the stove, but there was the oven "incident". I did promise the family that I'd get a dishwasher before Thanksgiving. So I looked up dishwashers and everyone has Black Sunday sales for the entire month of November. Jackpot!!  Finally made it to the store, purchased a nice reasonably priced dishwasher. It will be delivered and installed tomorrow. Yay!  So now all of my appliances are stainless steel. But what do we do with a trash compactor?  Lol. Eh. I watch too much Food Network and HGTV. 

Glen the puppy is growing. He's up to 7 pounds. He was 4.8 pounds when he arrived. He's fitting in well. He's inquisitive, has no fear. Barks at the garbage truck. Lol. He gets that puppy burst of energy and races through the house. He's learned the command "sit"!  He's starting to pee and poop outside (!)   He is still bitey and will be for a while. We are enjoying him a lot. Lots of tail wagging.  Shawn is coming for Thanksgiving and is looking forward to meeting him. 

Dialysis is going fine. However the Medicare contractors have determined that dialysis patients, all 400,000 of us, need treatment only 3 days a week, regardless of what are nephrologists prescribe. Because the contractors always know more than the doctor, who went to school for decades, who has treated us for years...punk ass bitches. Anyway. The dialysis community is angry and fired up. And concerned and frightened. There is a link that sends letters to our congress people. I posted the link and a plea for my friends to go to the link and share the on Facebook. I am so grateful for the many friends that responded.  I can't thank you enough. Much love and appreciation to you. I was also interviewed for a video to be sent to the powers Medicare contractors. The video includes patients who do home hemodialysis and we explained the benefits, especially the medical benefits  of extended treatment. If the contractors win, my treatment options will end by the beginning of the year. Ugh. There goes my life. Literally. My life span will be shortened. The short quick hard dialysis stuns organs including and especially the heart. 

Anyway. Life goes on for now. Shawn is in Oregon which makes coming here for Thanksgiving viable. As always we are excited. I also invited my friends over they just moved from Detroit. My menu is standard fare. Roast turkey, ham, and smoked turkey (yumyumyum) from Honeybaked Ham, macaroni and cheese, candied sweet potatoes, green beans with tomatoes, dressing, gravy, rolls, a relish tray (got that from my mom) and a caramel cake from Freed's Bakery.  We've been looking for a caramel cake similar to Ree's Cakes and Things and that is just impossible out here. And even though we ordered it, it's going to be different. We'll see. 

And to offset all of this,  the gym is having a potluck on Sunday. These people are insanely healthy. They eat ....things. Lol. So I'm going to make the vegetarian version of green beans and jalapeƱos. Keeps Dad busy snapping green beans. Lol. Ezekiel bread. Ugh. 

Well that's it for today.  We finally turned the heat on..but only because it gets chilly in the evening. Stay warm and enjoy your weekend!!!  Oh yeah. If you'd like the link to send your concerns to the congress people about the proposed cutting of dialysis treatment time, let me know. 


Glen. Wondering what he can get into. 

Glen inviting me to play a game of tug. 

Thursday, November 2, 2017

The "An Average of 5 Years", edition.

Good Thursday morning. Today is November 2, 2017. Five years ago today I was told my kidneys had failed. Five years ago today I started dialysis. Five years ago today I was dying. My nephrologist told me I was 2 hours away from dying. I felt like it. I couldn't move. And finally I couldn't breathe. Brian had to call 911 for EMS. The techs gave me oxygen, wrapped me in a blanket, put me on a gurney and carted me out of the front door of my house. My neighbors were outside looking concerned .. Because that's what you do when EMS comes to your neighborhood. 

I arrived at the emergency area of the hospital and was processed pretty quickly. While waiting for the results of test, I had one more episode of not being able to breathe. Pulmonary edema, scary stuff. The best way I can try to describe it is no matter how deep you gasp, no air is getting into your lungs. I imagine it's what a fish feels like out of water. Even now, five years later, it's frightening to think about. I was eventually told that my kidneys had failed and I would be starting dialysis immediately. Well, now I knew why I was feeling so bad. And there will a procedure to make me feel better. 

Of course I remember very little after that. I was taken to the intensive care unit (ICU). The last thing I remember was nurses taking off my clothes. When I wake up, I'm in a room with a zillion monitors. I had a blood pressure cuff on my arm taking my bp at regular intervals. I had an IV on the other arm. I have a Foley catheter (ugh). And I had a new catheter contraption on the right side of my groin. Apparently that was the emergency catheter for emergency dialysis. I had had a dialysis treatment....that I have no memory of. Now that's being very ill. 

I spent Friday, Saturday and Sunday in ICU. I was feeling better after the initial treatments, but I had a long way to go. I recall waking up at night being incredibly thirsty, but i was to weak to reach the button to call the nurse (looking back 5 years later, why was the button so far out of my reach???).  My voice was to weak to yell, plus my throat was parched, so I could barely whisper.  Picture me feebly trying to holler "help nurse".    During the day I had a dedicated nurse, but at night we all shared a nurse, I guess. The dialysis guy brough dialysis to me. And I had a physical therapist come to help me walk again. I had to use a walker. For the record I used the walker for the next 2 months...then I moved to a cane. 

The following Monday I was moved to a regular room. I stayed in the hospital until Friday. A full week. There was a distinct difference on how I felt from when I was admitted to when I was discharged. A world of difference. I felt much better, but I was nowhere near 100%. And I clearly didn't understand how much my life was going to change. 

So here I am, five years later. I never thought kidney failure was a death sentence. I thought it was more like an inconvenience, but something I needed to adjust to. When I was doing dialysis in the centers I experienced death at an astounding scale. The turnover in center due to deaths was startling at first, then it just made me sad. Now that being said, there were others who had been there for years. There was even a mother son team doing dialysis. But why am I still soldiering on when so many have fallen? 

I know attitude has a lot to do with it. Being compliant on diet and lifestyle has a lot to do with it. And how I dialyze has a whole lot to do with it. Dialysis should done like a beef brisket, low and slow. Hahahahaha.  But it's true. In center, because the centers are a dialysis assembly line..move 'em in and get 'em out...we gotta make money..quantity over quality...treatment is high and fast. Do the treatment on the patients as quickly as possible. Well guess how that affects the heart?  Taking off too much fluid. Cramps, dangerous drops in blood pressure, passing out, nausea,....death.  This.  This is what gives the 5 year average life expectancy.  But there is more. 

An informed patient can counter this, even while doing incenter dialysis. The patient needs to know the settings that work for them. Keep track of their dry weight and know how much fluid can safely be removed during treatment. Incenter my upper limit of fluid removal was 2.5 kilograms. And I knew this because a wonderful tech actually tracked when I would crash ( dramatic and quick drop in blood pressure from too much fluid being removed). Patients need to know and question each med that is being injected into them and what meds are being described. And patients need to know that there are alternatives to doing dialysis in a dialysis center. 

You know that I transitioned to home hemodialysis a few years ago and the moved on to even longer slower treatment by doing it while I am asleep. But you know what?  I encounter medical professionals who are surprised I do hemodialysis at home...that I stick my own needles. Some don't believe me. Eh. Dicks. Anyway. 

Five years average. Well I'm passing on that. Still too much going on. I need to make my new house look like I had the Property Brothers over here (lol lol). And I have a new puppy that I need to get to dogdom so we can cuddle on the bed. Hell, he's not allowed in the bedroom yet. I don't see that for a few years, so there's that. And spending time with my fabulous daughter!!  Making it my 50 year anniversary.  Plus a few more trips. And perhaps a kidney transplant. Remember what I use to say when I first started the blog? "I got thangs to do". And that hasn't changed!  

So yeah. I made it to five years. That's nice, but can I do the same thing twice? (Who did I just paraphrase?  Hehe). I'm going for it!  Yeah, I get tired and yeah  bullshit things happen. But I'm good. Stuff always happens. So yeah. I'm here for a while longer. You can't rid rid of me yet!!


Bonus photo of Glen