« February 2008 | Main | April 2008 »
Boomama does this wonderfully fun thing called Daily Linky Interwebby Awesomeness ... you should really check it out.
Daily.
You know, cause, she updates daily.
Like every. single. day.
Yeah, I know. It's amazing.
Anywho.
This is a clip she posted that brought me to my knees. Made me cry the ugly cry. Made my heart soar.
We finally got to the Mayo Clinic to meet with the Nephrologist and the Endocrinologist.
It was a long drive (5 hours) and we had to rent a car to get there. Mine is still in the process of repair (poor, sad, sad little car). We picked the car up on Wednesday afternoon, with much struggle and angst. At the appointed time of our "guaranteed rental", no cars were available. They tried to downgrade us into a smaller car, but we were planning on taking the kids with us, my two long legged teenager kids, and unless we planned to have them fold up Origami style for the 10 hours of driving, that smaller vehicle wasn't going to cut it.
We tried to get them to upgrade us to the minivan in the lo,t but they wouldn't budge. Fortunately, within half on hour, someone returned a vehicle in the class we had requested, so they did a quick turn around and got us on our way.
May I just say, if there are any Chevy dealers out there who would like to donate a new Chevy Impala to us, we would be forever grateful.
We had been forced to rent the car for two day, due to the time frame we needed it and had every intention of returning it Thursday night when we got home, even though we had paid through Friday afternoon. Uh,, let's just say got the car back with seconds to spare on Friday afternoon.
And practically cried when I handed over the keys.
That is one. sweet. ride.
Anyway.
We loaded up kids, coolers, snacks and my medical file (that took up enough room in it's self) and off we went.
We arrived at the Mayo campus right on time, navigated the underground parking garage and hit the elevators.
When we got off at the "Concourse" level and stepped out of the elevators, we were blown away by how beautiful the Clinic was. Right down to the amazing artwork on the walls, and the grand piano in the foyer. I looked at John and said "Wow, this feels like Nordstroms".
After asking for directions to the 2nd Floor Check-In, we made out way to the next elevator bay, where we were greeted by a volunteer sitting at a little desk. He walked over and asked where we were headed, punched the right button (up) and held the doors for us when the elevator arrived.
Wow.
Check In went quickly and we were called back almost instantly.
Wow.
Height, weight (yuck) and temp with nurse 1, Lila. Very sweet.
She led me to an exam room, and opened the door. May I just say, I am glad I have insurance. That was the most fancy schmancy exam room I have ever seen. Right down to the private dressing room, and eight foot couch.
Nurse number two, Char, came in and took blood pressures. Right arm. left arm. right arm, standing right, standing left.
By the time she finished, the doctor was there.
Wow.
He looked over my health history and started to ask questions. I had typed up my med lists and my medical history, which he was pleased to see. I knew that I would forget something, so I had spent alot of time typing it up along with all my questions, and the appointment flower alot more smoothly because of it.
I handed over my labs for the last 6 months, without mentioning the issues in February. Frankly, I was testing him to see if he was going to catch the mistake. And he did, Right off. Immediately.
That confirmed to me that it was time to move to another medical team.
His immediate statement was "You need to find a new team, if this wasn't caught".
Thankyou. Thankyouverymuch.
We discussed treatment options, and he promised to talk to the transplant doctor's about who they would recommend in the Vegas area, since they would be most familiar with who was who. He also said that he would give the Transplant Coordinator's office call and ask why they hadn't gotten back to us in over 5 weeks to get the ball started. In reviewing everything, he said I was a prime candidate, and with my PRA issues, we needed to get me in process for living donor testing asap.
I love that man.
Truly.
And more than that Chevy Impala.
Trust me, that's saying something.
(Dear Chevy Dealer, don't think I'm any less in love with the Impala after that statement. Thank you.)
I actually fell at his feet, literally, in thanksgiving for all he was going to do for me.
Ok, maybe I fell at his feet more because my balance is messed up. And I was wearing a backless gown.
It was truly a shining moment.
We had some time to kill before the next appointment, so we got int he car to go find someplace to eat. Scottsdale is a very, well, expensive neighborhood. It's the BelAir o the Phoenix area, and so Jonathan, my Top Gear obsessed, car loving son was in car heaven. He spent the entire time yelling, "Lamborghini!" (he was 3), "Bentley! (he saw two, one driven by a retired rock start", "Porsche Carrera!" ... etc.
We grabbed a bite at Subway, and drove around like a bunch of hillbillies looking at the massive shopping malls, and huge houses with perfectly manicured yards, oohing and aahing. Yes folks, we've lived in the country far. too. long. :)
I asked John if he missed this type of life, you see he grew up in that world.The world of tennis clubs and exclusive schools. Without missing a beat, he said he loved th life we had. And oh, look at all the smog. How do these people stand it?
I'm very lucky.
We made it back to Clinic in time for the Endo appointment, second verse same as the first.
He was really nice, very straightforward. I had taken a copy of the report and a CD of the ultrasound showing the nodules they had found. When I went to hand him the report, it wasn't in my folder. So, we had to page John and have him race to the car to get it.
After reviewing it, he determined I'll need an ultrasound driven needle biopsy of the nodules. They was me way to schedule them that day, so he agreed to let me schedule them when I come in for transplant clinic. Yeah! Another reason to get transplant moving faster!
He mentioned he would let the Neph know, so he could mention it to the transplant team in his bid to get them off their duff and moving on my case.
And, true to his word, the Neph had given him two names and phone numbers of teams in Vegas for me to follow up with!
May I just say that Mayo rocks.
I have never felt so good about the care I was given.
When all was said and done, we piled in the car and headed home. About half way there, and in the middle on nowhere, I started to get sick to my stomach. It was no use turning back, and the road we were on was not known for it's rest areas. We knew thee was only one, and it just a couple of covered patio areas with tables. As we passed it a few minutes later, John pulled a fast u-turn into the parking lot.
Amazingly enough, they had put put a couple of Andy Gumps. Those port-a-potty things. Hallelujah! I've never been so happy to see a portapotty in my life.
Ahem.
We arrived home around 9, exhausted, but hopeful. We were all feeling abit brain dead Friday, so I opted to let home school slide with a promise from the kids they would be caught up over the weekend. I spent some quality time with my Impala Friday afternoon, running a few needed errands, until it was time to give her up.
A tear welled my eye.
We rented from Enterprise, who will give you a ride home .. so "Skippy". the 100+ year old driver dropped me off at John shop. Although ti was closing time, his boss had to run and he still still had a few repair orders to complete. So, I hung out for an hour or so.
About an hour after closing, a man walked through the front door to the shop.
I thought I had locked the door, but I had unlocked it.
John sensed trouble, and whispered for me to go to the back of the shop as he made his way towards the front oft he store. If anything, my dearly beloved had a pretty accurate sense of people, so I quietly hightailed it to the little dressing room off the back door...
As John made his way to the man, things sounded weird so I looked around the storage area in the dark and found an old aluminum handle bar. I grabbed it and settled in the dressing room listening, my heart pounding.
My cell phone was in my purse, in the workshop area. There was no secondary alarm pad on the back door by where I was hiding...
So, I stood there in the dark, holding my weak excuse for a weapon, knowing I could at least get a couple blows in if needed, and could try to make a run for it if I had to.
More to follow....
I need to get in contact with those of you who have graciously volunteered to be tested as a living kidney donor for my transplant.
After our visit to Mayo Thursday, we are getting closer to being actively listed for transplant, which means testing can begin.
I know all of you have contacted Denver, and are waiting for the next step.
in order to be processed through Mayo (which is located in Scottsdale, AZ) we will need to ccordinate getting you in contact with the right person there for paperwork, etc. For more information on their program, click here.
If going through the Scottsdale facility is workable for you, would you please let me know?
For privacy, you're welcome to simply email me directly rather than leave a comment. Whatever makes you more comfortable.
The link is on the left side at the top of my blog.
Thank you again, from the bottom of my heart.
As you know, we spent 14 hours on the road yesterday.
Needless to say, I got basically nothing accomplished today.
Well, I did come this close to death and being a headline in the Kingman Daily Miner this evening ... but that story will have wait.
I've been wanting to try this recipe that I found at Bev's place forever, and tonight was the night for something yummy and easy.
So, my friends ... I give you Bev's Chili Burritos :)
But, the troops were hungry and served up while I was away from the table.
What's Left.
For more great recipes, visit Fiddledeedee's Saturday Stirrings!
600 miles
14 hours
4 elevator rides
2 Specialists
2 kids
1 husband
1 lost, then found lab report
4 Ice Teas
1 Rest Stop
1 Andy Gump (eww
w)
Too much Tylenol
Not enough sleep
We're home from Mayo.
I think this says it all.
More to follow tomorrow when I'm somewhat conscious.
Photo courtesy of Jonathan Bach
see more crazy cat pics
This weekend has been one of renewal. The kids and I spent Saturday cooking goodies, like muffins and homemade bread so when John got home from work the whole house smelled yummy and homey.
It's been fun.
Tomorrow, we'll start the day with Pecan Waffles with Pecan and Banana Syrup ...
Then, we'll move onto a yummy late lunch including:
Tangerine Glazed ham with Baby Carrots
Scalloped Potatos Au gratin ... homemade, not from a box!!
Traditional Southern Deviled Eggs
Farrah's Fruit Salad - found this at Fiddledeedee's Saturday Stirrings! Saved the day!
Then, a long drive somewhere to relax and enjoy the company of each other.
Can't wait!
May each of you have a blessed Easter.
1After the Sabbath, at dawn on the first day of the week, Mary Magdalene and the other Mary went to look at the tomb.
2There was a violent earthquake, for an angel of the Lord came down from heaven and, going to the tomb, rolled back the stone and sat on it. 3His appearance was like lightning, and his clothes were white as snow. 4The guards were so afraid of him that they shook and became like dead men.
5The angel said to the women, "Do not be afraid, for I know that you are looking for Jesus, who was crucified. 6He is not here; he has risen, just as he said. Come and see the place where he lay. 7Then go quickly and tell his disciples: 'He has risen from the dead and is going ahead of you into Galilee. There you will see him.' Now I have told you."
8So the women hurried away from the tomb, afraid yet filled with joy, and ran to tell his disciples.
9Suddenly Jesus met them. "Greetings," he said. They came to him, clasped his feet and worshiped him.
Matthew 28:1-9
To recap the conversation I had with John's boss on the phone ...
(I'm in italics, he's in bold)
Hey! I hear you weren't feeling good. How are you doing?
Great. I have Influenza B.
Oh. Really. and you're working today to spread the love around?
Yep. No lack of selflessness here...
Yeah- sounds like it. You're a real giver there.
So, is John available?
Yeah. Here. Hold on while Iick the phone. Just want to make sure he gets full exposure ...
Uh thanks for that. Appreciate it.
I thought I'd try something fun on the blog ...
Two Way Instant Communication!
If you look over to the first sidebar and scroll to the bottom you'll see a little chat box. It will tell you if I'm online ... and if I am?
You can say Howdy!
And I'll say Howdy right back!
And we can chat!
It'll be a blast :)
And don't worry- if someone else comes online, they can't see they conversation.
It will just be you and me, baby!!
So, take a minute and Howdy, wont'cha!
It's time to turn this life around.
Geesh.
And since my brain is still in overload, let's rely on the old list format to review the yummy goodness that was today!
1. I saw my primary care doctor yesterday, and she gave me a full hour of her time. (It was a slow afternoon for her). She listened to me download everything, all the gunk, frustration, issues, everything. I love her to death, cause she's as much a friend a s a physician.
Part of the reason I haven't been sleeping is the neuropathy, At night, it kicks in full force to the point where any type of fabric touching my skin drives me insane. I change pajamas 4-5 times a night to find something that doesn't bother me. The neuro I was seeing offered no help, just a bunch of tests.
Anyway, she prescribed a medication yesterday to try and it worked beyond belief. Not only did it make my legs calm down some, it knocked me out for 5. whole. hours.
I haven't slept that long in one shot in ages. Then, I took another nap today, for 4 1/2 hours. Dead asleep. Never even rolled over.
I'm like a new person tonight.
2. I was able to get a referral and an appointment with a leading meuro in Vegas. He's hard to get in with, but we made it! So, I'll see him in a month.
3. The car is getting fixed sooner than expected. God provided the funds we need to get all the parts, plus a couple of other things that were next on the list to blow up. It was a shock and surprise to get notice on it today.
I cried.
Then I called John at work to tell him.
And cried some more.
God is good.
If you guys could be praying, though, John's boss has been diagnosed with Influenza and continues to com to work every day. Please be praying that John does not get sick, and that he doesn't pass anything long to me. It can be a real issue since my immune system is so depressed.
So life is looking up at Case de Living Grace.
And a huge thank you thank you thank you I love you to Jules at Everyday designs for bringing back the flower! For those of you new to Living in Grace, Jules did my very first blog design- the blessed me with this beautiful purple flower.
It's nice to be back in a comfy place!
Recent Comments