Home again, home again, jig-a-jig-jig

Well, it was decided after looking at my labs yesterday that indeed I could go home and come back once a week to see the docs. They discussed having me return in two weeks, but since I am only three weeks out, I needed to stay with once a week for a bit longer.
My platelets are holding! We were worried Monday when they went down a little. It could be one of two things. The first being the HUS/TTP recurring, the second, and more likely, being one of the antibiotics I am on. For now we are just going to watch them and hope for the best.
My rules are many. Some of them include no children yet, no big groups, no sick people (wear a mask), no entering my kids school or church for six months. These first six months are critical. If I get sick I have a higher chance of losing the kidney so if I don't hug you, shake your hand or if I ask if you are sick please don't get offended. I wanna keep this kidney even though I pee three times at night now.

Love and miss you all!
Virtual hugs,
Lannette

Update...

Sorry I haven't updated this since surgery, but I haven't had access to a computer. Flo and I are doing great and getting along well. I forgot how much normal people pee though my doctor says part of that is because my bladder shrunk and it will stretch with time and I won't have to get up three times at night. Can't wait!

We are getting out and about every day to walk. I have a special mask that I wear and get a lot of funny looks. They are sure I'm gonna give them swine flu. I finally wrote, "kidney transplant" on the front and get lots of, "God bless you" now.

My creatnine has been 1.2 and 1.1 is the high end of normal, so the drugs are working well. I see the doctor two times a week for now, but she says I am doing so well she is tempted to let me go a bit longer between visits. In the end, we decided it is still so early that we would have one more week of two visits and go from there.

I am feeling great. Still sore from surgery, but feel so much better than before surgery. I look forward to getting back to life, though I am a bit scared of all of the work waiting for me back home. I have been given some very strict rules, so I will be a home body for several months. I have a huge box for all of my medications and they were smart enough to give me a couple of sheets with all of my medications typed up on it, when to take them, information about them and a pill taped to it. Makes me sure I am doing all the right things with my meds. Phew!

Gonna get to bed. I have been having CRAZY dreams since surgery. I'm told it's normal after surgery and with some of the meds I am on. I can hardly wait to see what will come tonight.

Thinking of you all and missing you.
Hugs from a distance,
Lannette

Flo's a workin'!

Hey all! Transplant on Tuesday went really well. Melissa and I are both doing well, though she is still in a lot of pain. They are talking about releasing me today...would have yesterday but no go poo yet. My drug box is about 2 inches deep and the size of a peechee folder. Fortunately, they have given me a drug list with pills and descriptions taped to it so I know what I am taking and what it is for.

FYI: Melissa and I came up with the name, "Flo" for the kidney. She doing just that...flowing like a river to the sea. Gotta get me a boat! Seriously!

It has been great to see all of the nurses that used to work with me and catch up with them. They are incredible people and we are blessed. We're in good hands.

It is hard to concentrate so I think that is all I am up to for now. Miss and love you all. All my best...you're in my thoughts.
Hugs,
Lannette

How blessed...

I have so many things to be grateful for...but I am celebrating Melissa right now. She is my hero. I can't imagine how she is feeling, I wish I could feel it. I am amazed by her willingness to do such a huge thing for me. What a blessing!

It's Saturday and we went and had our last cross-match blood draw yesterday. Monday we spend most of the day at the hospital for pre-op information. Fasten your seatbelts and keep your hands and feet inside at all times, the ride is about to begin... Tuesday at 6am we check in. I am guessing neither one of us will sleep well the night before, but we are hoping to be dreaming of sugar plums dancing, or something like that.

I'll keep this updated as soon as I can to let you know what is happening. Miss and love you all!
Lannette

Transplant baby!!!

It has been so long and I am still hanging in there. Don't know if anyone is even checking this any longer but since I am getting ready for transplant, I thought I would update it. Transplant? you ask? Yup!!! Melissa (my younger) sister is giving me one of her kidneys on October 28th at the University of Washington. I can hardly wrap my head around all of this. It has been an incredible year.

I am still doing my 4 hour dialysis run three days a week in Wenatchee. My body always feels like I have the flu. Tired, weak, achy, nauseous. But I have great friends and great boys who keep me going.

Love to you all...
Lannette

Hitting the big time

Well, finally! My platelets beat 150,000 on Monday coming in at 152,000! As of today - 192,000! Whoo hooo! So, as of right now, no more plasma exchange. I think the weekend home did me some good.

That's right...I went home last weekend to be with my boys. It was exhaustingly wonderful. I got more cuddles than I could have hoped for -- I couldn't get enough of them. Oh, those cute boys just kill me! I did need to take rests throughout the day -- they are so active!

My kidneys still haven't kicked in, but the doctors are hopeful that since my blood is doing well, they will recover fully. Until then, dialysis continues.

Hope all is well there. Hugs to all!
Lannette

Footloose and Fancy Free

I guess freedom has been a bit too good for me since I have neglected my blog due to it. I have obviously had no problem keeping myself busy in the outside world. It has been LOVELY!!! I am feeling strong, however right now every muscle in my body is yelling at me from all of the walking I have been doing. Getting my strength back is exhausting!

So much to do with my freedom. I have attended an art viewing at the Seattle Museum of Art (across the street from the condo). I walk and shopped Pike Place (a block from the condo) regularly. I love buying fresh ingredients for my dinners! I love the smells of the waterfront. I love the food! I am being extremely careful with my diet, I have big plans for these kidneys, but man there is real food out here! The days I am in the hospital for treatment I dread lunch, but then I realize I get to have my own yummy dinner and get excited over what to make.

Between Jamie and Doug I have been taught a ton of Seattle secrets. I have never lived here, or known the city well, so the info has been great. Doug visited this last weekend and we had a blast exploring together. I love Ballard, by the way!

I am happy and healthy. Still fighting for my life every day. My schedule includes M/W/F dialysis - my Renal docs visit me during each treatment and M/Th Plasma then Thursday after treatment I see my Hemetology/Oncology doctor at her office. I still have a pretty full schedule, as you can see. I love my Tuesdays and weekends!

Speaking of weekends, I am trying to get over to Chelan this weekend. Melissa (my sister) is checking her schedule to see if she can drive with me. I don't trust myself to make the drive alone without stopping quite a bit along the way. Maybe in a couple more weeks. So, if it works out, I look forward to seeing all of your smiling faces. I am dying to get over there and see everyone!!! I have missed you so much.

If you have any Seattle tips or secrets for me, please let me know! If you are in Chelan, hope to see you this weekend. Please keep up the good thoughts and prayers for me. I am doing well, but still very much in need of them.

Love and miss you all,
Hugs,
Lannette

It's Independence Day!

WHHHOOOOOOOOOOOOOOOOOOOOOO HHHHOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Really and truly - I am OUT today!!! FREEDOM, baby!!!!! After literally 7 weeks in the hospital, I can hardly believe it.

Crappy Hospital Food - free
Laundry Services - free
People at your Beck and Call 24 hours a day - free
Getting out of the hospital - priceless!

Right now I am receiving my final dialysis as an in-patient which will be followed my plasma. Then done. I will return three times a week for treatments. My sister, Alicia, is coming up to spring me. Chris Raines has been generous enough to allow me to borrow their condo in Seattle so that I can continue treatment from here. A HUGE thank you to his family. I am constantly amazed by the willingness of our CVIS Family to sacrifice and help each other.

I still have my plan in place to get back over there ASAP. If it's up to me, I will return with my boys this next week. So send out those same thoughts so that we can make it happen!

I hope you all have a wonderful day! Can't wait to come over and see all of you. I will do so soon.

All my love and lots of hugs!
Lannette

Still holding strong....

It is hard to believe that it will be 7 weeks on Monday since I was admitted to the hospital. If this weekend goes well, it looks like I might make it out just before the 8 week mark. Holy cow!!! So send all your prayers, good thoughts, wishes, hopes or whatever you do to the heavens/skies/great big blue above for me this weekend. Lets get me out!!!

By the way...I happened upon how to change the settings on the blog so that anyone can leave comments now. Comment away. I love to hear from you.

Happy Thursday...

Today has been a great day. Alicia and Mark came and visited and we had lots of good laughs! It was a surprise visit and I loved every minute of it.

I also had a surprise visit from Jamie last night. It is wonderful to see such happy faces coming by to cheer me up.

Thank you, thank you!!

It has been a quiet week, and my numbers are holding strong. The doctors have moved my plasma treatments to every other day and the numbers are still holding. We are taking me off more slowly this time in hopes that they will stay strong this time. If they continue to, then they will release me to continue treatment as an outpatient but since there is no plasma treatment in the Wenatchee area, I will need to stay here until those treatments end. Wenatchee and Omak both offer dialysis, however they both have waiting lists right now so I will need to get accepted before heading back to that area. Hopefully that could happen quickly. Time, time, time....

The boys are doing well in Utah. They are enjoying all of the fun that there is to have there, especially all of their cousins. They have both told me that they miss their friends and say hello. I am so grateful that they love CVIS so much that they miss it there.

Hope all is still well for each of you!
Hugs,
Lannette

Happy Birthday Soren!!!!

Can't believe my baby is 5 today!!! Happy Birthday to my Soren!!! He had a fun day yesterday celebrating with all of his cousins at Chuck E. Cheese. He is excited to have a party there in Chelan with all of his friends when I get home. If you want to call and wish him a happy day the number is 801-226-3150. Otherwise, we'll party soon!

Well, I got a day off yesterday from treatment to test those numbers again. They held steady so they are considering having me do my plasma treatments every other day again to see if I continue to hold.

My goal for the day...heading outside! Took a snack and sat under a large pine tree and enjoyed the fresh air. It did start to drizzle but since I was protected I hung out and just enjoyed myself and read my book. Got back inside, took a hot shower and curled up to enjoy the quiet.

Hope you are all doing well. Take care! Hugs to all, L

A Quiet Sunday

It is so peaceful and quiet around here today. The weekends usually are mellow and nice. I also discovered the pancake special on Sunday's. Seriously, no one has bothered to tell me that there are different specials this whole time?!?! Well, in all fairness I only get to have a a couple of them that fit my menu...but pancakes!!!!!! MMMmmmmmm!!! So I ordered more and have them sitting here ready for lunch. Really, it is the simple things in life.

I am down to one blood pressure medication (from 3) and my BP is holding steady around the low 100s/60-70's. Good news for me. I am adjusting to my new BP finally, and am able to get my little chicken legs up and around my floor for laps again and am enjoying the views of Mt Rainier, the water and the green trees.

I have been told I may get a break tomorrow from treatments so I am hoping the weather will cooperate and give me a few minutes outside. With all the treatments and blood pressure issues I haven’t been out all week. Hard to believe. It’s been a tiring week and I am glad to be done with it.

I got the most special of treats this week…famous Black and White cookies all the way from New York City!!!!! I am telling you it is hard to find a better cookie!!! It has been fun to share with my nurses and techs who have been so good to me. I have actually created an addict who after tasting them has been online to order her own! Thank you, Elyssa! YOU ARE MY COOKIE GODDESS!!!! I can’t wait to come to New York and sit in the park and chow on one with you…miss you, babe!

Jason picked the boys up on Saturday and headed back to Utah with them for a week’s stay. All of the family there is excited to see them and I am excited for those boys to get some more Daddy and Yorgason family time. Soren turns 5 on Tuesday and will get a big ol’ family party there. When I get back to Chelan, we’ll plan a party with all of his friends.

Well, I hope you all have had a good weekend. All my best – thank you for all of your love and support still coming my way.

Lannette

A loooonnng story...

Hi all! So much to tell! First of all, if you are reading this, you will need to be doing a happy dance -- no, seriously. Those platelets that we have been waiting so long for to get back up there in numbers jumped from 103,000 to 136,000. Come on, happy dance for me, baby!!! (for those at the school reading this in front of Mollie's office - give her a knock and show her for me - there may be a prize for the best happy dance - I'll let her be the judge) Once I get them above 150,000 then they will move my plasma treatments to every other day to see how I tolerate it and if my numbers will hold. Once I get there and I hold, I am coming home! I can go to Wenatchee for dialysis if my kidneys haven't kicked back in fully.

So to catch up on the last week during dialysis I started having chest pain and tightness and random muscle spasms. Fearing heart issues, I received Nitro, an EKG followed by a chest x-ray which all showed my heart was clear. The bad news about Nitro...you know immediately when it works because it is like someone is taking an ice pick and jamming it in your head. But that also leads to the good news...once the ice pick is inserted, you know it's working. Everything settled and I was good for the night. At 6 AM I woke with a splitting headache and started seeing a flashing light bar in the middle of my vision. As time passed, the light bar got bigger and bigger. Eventually, when the lights would go away, my vision was blocked within that area. I am was seeing only half of a face. Soooo, they sent me down for an MRI and eye exam. They thought that I had had a stroke and decided it was time to take drastic measures to get my too high blood pressure down. Turns out, it wasn't a stroke. I developed a syndrome called PRES Syndrome. Another very rare syndrome that my body decided to invite along for the ride. I still have some really minor vision issues, but the best news is it is reversible. It will just take time for the areas in my brain to heal. Because of this, I was sent back to the ICU for a very specific night of blood pressure meds to get the blood pressure under control! They also then decided that all of the excess fluid was not doing me any good and they needed to get it off. So within a week, I have lost 60 lbs! Talk about chicken legs! I will continue my dialysis on MWF's to keep the fluids off and support my kidneys that are trying to work.

a bit later...
My labs are back finally for today and they have held strong. My platelets held at 133,000 but such a small amount of change can be explained simply by lab days. Sooooo......yipppeeeee! Happy dance!!!!!! Everything else is still great and my blood pressure is holding steady in the 120's over 70's ish. Life is good.

I had an incredible weekend with my three boys! Doug braved Saturday night at my house and got the boys up Sunday and out the door to me. I got done with my treatment at about the same time they got here. It was a beautiful day outside so we ordered Thai food and went for a picnic. My mom and dad sent a fun box of toys and treats for us to enjoy. The wood gliders were the big hit -- especially fun when they get stuck in trees and we get to watch Doug climb and save the day. It couldn't have been a more perfect day. Alicia and Mark met Doug and took the boys down to their house for a sleepover with their cousins. It was so good to see them have so much fun for the weekend. I miss them so much and am so blessed by all of the people who are helping with them and making their lives so good in this terrible situation. I miss you all and can't wait to come home. Thank you for your help on that end with my precious loves.

This week has been wonderful, thank heaven. It is hard to believe it is almost the weekend again. Hope you enjoy yours. On to next week....

Oh, I have been asked about the address here:

Lannette Yorgason
University of Washington Medical Center
7 NE Room 7206
1959 NE Pacific Street
Seattle, WA 98195

Miss you all.
Hugs and love,
Lannette

Holy cow it's been a week!?!?!?!?!

This week has so gotten away from me. So much to tell....I am doing GREAT!!!! My numbers are doing great but I am still on both machines daily. The trick will be taking me off at the right rate to allow my body to be sure it has the strength to sustain. BUT, my boys are coming today, so I am gonna have to finish this later. Love and miss you all! Working to get home...

NUMBERS ARE UP!

Good news...my numbers have taken a bigger turn in the right directions! Platelets are up, ldh down, hct (hematocrit) high - thank heaven for blood tranfusions. Anyhow - wanted to let you know. Continuing treatments into the week....

Loved my weekend with Doug. He keeps me smiling and laughing. Everyone was sad to see him go. What a guy!

Have a great Sunday! L

A happy Saturday at least I think it's Saturday....

All signs of terrible weekend shows tell me it is. Another week has passed and I can hardly believe it! Good news...the numbers we want to be going down are and the numbers we want coming up are. I think it has more to do with the fact that Doug got here yesterday but I will let the doctors believe it is all them! I'll let you know how the weekend continues. I am trading out my plasma right now - still a daily event - and back to dialysis M, W and F. I realize I haven't let you know what these two events feels like for my body.

Plasma - Basically, you know when you are on an incredible roller coaster and you get right up to the very edge of a fall, just right there before you drop and you swear your head will explode and your heart is preparing itself to pummel through our feet before rebounding to the top of your head and then back into its proper location? Well, imagine being suspended right there at the top for 2-3 hours and basically you will have sat through plasma with me. I shake from the pumping of the machinery as it draws out my blood and pumps it back in, but I try to imagine all of the goodness of some precious donors plasma going in and helping my body to be strong. It is saving my life - thank heaven! Now, don't think this all goes with happy pills. I get Tylenol and Benedryl to help ensure I do not have an allergic reaction - but it also helps me have a little nap during the treatment. I do love naps!

Dialysis - Well, find yourself a really old pickup, add a bumpy dirt road, sit in the back and tell your driver to hit it. Ok, ok, I'll let you start slowly, but eventually you're going to have to settle at a speed -- alright, I'll let you sit steady at 15 mph. Now just hang on for four hours. You can do it! Good luck!

So, I started writing this at the end of my treatment. I set it aside to finish it up here in my room and realized my eyes were swelling and itchy. I had my first allergic reaction to treatment. After all of my treatments to only just now have had my first has been impressive. Little Benedryl mixed with some steroids, and the hives, shortness of breath, swelling itchy eyes have started to reverse. I am OK.

Now I am back in my room getting one of two blood transfusions for today (ok, so one set of my numbers is down). They only take fours hours each, but Doug and I are gonna get out and get some fresh air in between them. Speaking of Doug, I am going to go and enjoy him. Have a great weekend.

Hugs to all, L

thoughts on, "when it rains it pours..."

Soooo, after receiving the news that I would be hooked up to at least one machine daily for the next two weeks (Sunday/Mondays news) I have to admit I got a bit bummed and then fairly worried for the first time. Don't get me wrong, I have had a couple of other moments but for the most part I have been positive and taking the news as it comes. This was different. Mortality - bam. I picked myself up, put smile on and faced the machinery. By yesterday I was almost cracking through that smile. Three straight days is exhausting! My body shakes all of the time, on and off, of the machines. My tongue can taste virtually nothing - which on the renal diet I am not missing much. I have a slight headache and really, it is a bit unnerving to see one line of red fluid pulling directly from your heart going a machine and another line pumping it back in. Rains it pours, BUT THEN.......

Right in the middle of it, Melissa and Peyton show up with bright smiles on their faces. They came to surprise me! I have to admit that I am afraid slept through most of their visit. Three days of work, anti-nausea, benedryl and emotion - not a good combo for visiting. However...what peace to open my eyes, here and there, and see them smiling at me. Geez was that really only yesterday?!?!? Can't wait to see you again - mmmmm, Peyton hugs! Thank you! BUT THEN........

After being changed to dialysis, I was pleasantly surprised by a visit from my old friend from Israel, Michele Clegg!!! She lives in Logan, UT but was visiting her dad in Oregon (thanks for sharing her Ken!). She came at a time when I was alert and able to visit and she lifted my spirits even more and enjoyed every minute with her. What a beautiful woman you have become Michele! I am so impressed by your intelligence and sense of humor! What a life plan and partner....so much love and goodness. I only hope I can find the same the next time around! Thank you for sacrificing your time to come all this way. You are an angel - still. BUT THEN.......

I got back to my room at about 7:30 pm and got settled and in came Jamie. Alone no more, sad no more. What a day. I think the Heavens know just what you need when you need it.

My numbers are still right around the same. Nothing new to report. Just hooked up to machines for another week trying to get this silly thing under control. They do have other plans if these fall through, but we won't go there til we have to. I am not even asking. Whatever has to happen I will get better! I heard a quote today o the effect of, "Don't be afraid your life will end, be afraid it never began." I have no fear. My life is wonderful and is moving forward and I look forward to beginning it again and again outside of these four white walls. When it rains, it pours - that goes for good things as well.

Love you all!
L

Quick update....

My numbers decided that they were bored of being flat and my Plateletes that were holding steady at about 91000 ish decided to tank to 51000 (59000?) either way - CRAP!!! On the other end of the spectrum, my ldh levels decided to climb a bit. SOOOOOOOOOOOO........I now am on the schedule for the next two weeks with dialysis on MWF and plasma treatments daily. We are going aggressive. i'll let you know more as I am given the information but here I stay. Home sweet home.

Happy Monday 2/2

Hi again,

I am writing while hooked up to dialysis so if this post is a bit confusing you will know why! But, I am tubed for four hours in and out of awareness so i thought i would still try to do this.

I had the most amazing weekend!!! My oldest and dearest friend, Jill, drove 8 hours from Boise to surprise me!!! (We have been friends since the Sunday after I turned 12 and she came up to me at church and introduced herself and took me off to our youth program. I am eternally grateful to her Dad for nudging her in my direction -- we've been friends through it all!) I had NOOOOOOO idea she was even coming. In walks my twin tower (we're both 6') and two of her beautiful red headed children! After having a minor heart attack (good thing they had taken me off the heart monitor the day before - literally), waking everyone on the 7th floor (and probably the 6th and 8th) from cries of joy, I reentered my body and relished every second of it! I hadn't realized how extremely lonely I had been and my heart is now full again. So much more gratitude and love...I can keep going!!!!

NOT ONLY did I get to see my Jilly, Jason took a day out of his precious time with the boys and drove them over to see me!!!!!! HOLY COW!!!!! I could eat them up! What are you guys feeding them over there? They have grown so big. They were nervous at first, since they got here while I was on dialysis, and it is a bit overwhelming with the machine, tubes, blood and my body shaking, so he took them out to explore U of W Campus for a bit while I finished. He then met me in my room where those boys joined me on my bed one under each arm and I got to just hold them. Those warm, healthy strong bodies right up to mine. I could have stayed there forever. My bed isn't the same now. I miss my boys.

Thank you, Jill. Thank you, Jason.

Medically speaking: I have hit a plateau in numbers so I will continue the dialysis M, W, F this week. My ldh levels are up a bit so I am on for plasma work tomorrow and they'll evaluate again after that. My blood pressure is extremely high lately which is why there are punching me with so much dialysis. Trying to get some of my fluid off (I have been edging toward 200 lbs and I guess they decided that was getting a bit much for my body to handle so off it is coming -- 10 lbs gone in four hours yesterday). The treatment is rough and hard on me, but I am feeling more energy upon completion, and with some of the memory foam fluid gone from my body I am able to get up and around a lot more easily. In fact, I walked down from the 7th floor to the 4th for my treatment today. A first.

I am starting to fade and am going to sign off for a rest. 3 hours to go....
Love to you all! L

Happy Sunday

Hi all -

Sorry it has been a bit since we posted. I now have access to a computer and am able to do postings myself! Oh happy day!

I am doing well. My numbers have decided to stick tight, so no real changes internally, however, I am feeling good physically and emotionally. They are introducing new phrases like, "when you get home...." "managing from Chelan..." So.......looks like we are heading in the right direction. I am still on schedule for dialysis this week and they are trying to decided whether they should add a little plasma work to it. I'll keep you updated as we go.

My dinner is here, so I'm off. Love to you all! L

Monday

Lannette had a rough weekend trying to poo. After lots of effort she finally managed to get something to come out of her but i'll move on. Her platelets continue to improve. Her LDH (the measurement in her blood that tells whether her body is still attacking itself) went up a bit over the weekend but negligably so. Now that she is "moving" her days won't be so "backed up" and that should result in her numbers getting even better. As far as the blog goes....there really isn't much to say daily, which is just as well since I have left her all alone in the big dark hospital and come home to see if I still have a house and a business. The laptop came home with me. I will post when I can.

Sunday

So Lannette is doing well. yesterday the Snyder fam came to kick her hiney in some games....which they, and I did....quite easily, in fact. Humility is fun! The fun and games were really the calm before the storm though. After they left it was ENEMA TIME!!! So one sideline aspect of her condition has been the strange urge to covet her own Poo! She has not had a bowel movement of any real quantity in over 2 weeks. Hence the emema action. Her bowels didn't feel the need to actively participate in this game plan, though. So she was up most of the night having enemas. It was not a restful night. The biggest problem with not having the bowel movements is that it is resulting is a high potassium level. Although she did expunge a bit of poo, the decision was made to go ahead with dialysis today to get rid of the potassium build-up. It is not a big deal, just helping her blood out. There is some great news though. Even without plasmapheresis her platelet levels jumped to an amazing 121,000 (150k is normal). This means her body is taking care of itself more and more. She is also producing more peepee. My advice to all is to roll your 401k plans into DEPENDS UNDERGARMENTS for a few weeks......! So that's what's happening.

Im feeling poetic now...

You all have shown so much love and caring
and through this blog with you we are sharing.
We thank you so much for all you do,
now that she's peeing, pray for Poo!

good morning all

So we got good news from my labs last night...platelets jumped! Not enough to get out yet, but enough that my Heme/Onc team is going to talk to my renal team about taking me off of plasma exchange for this weekend to see what my body decides to do with itself. Also, my LdH level, which is an indicator of how my antibodies attacking my cells is down from 1800 to slightly above normal which is 150-200 range.

Other good news...I GET AN ENEMA today!!! Something about not going poo in atleast 10 days has them as worried about not going pee in 10 days as well. ;) Doug is COMPLETELY opposed to it and was sure to tell my team exactly that. He figures I am close enough to diamonds and we could really use the money. Can't have it all!

on to my LONNNNNNNGGGGGGG day...

Howdy!

Hi all!!!

We hope that you are all doing well and I want you to to know how incredibly grateful we are for all of the love and support that we, my family and especially my boys, are receiving.

We want to you also to know that from our point of view...on this blog, sometimes no news is good news. We still have no further information from the doctors as far as cause, cure or time frames. My numbers on labs are moving in the right directions and we will just keep at this in hopes that I will get out of here soon. We are both doing everything possible to make that happen. One of the most important things...a great attitude...

I had a wonderful day today. The best part -- a date with Doug. We finally got through treatments, doctors, nurses, social work, PT, OT, etc, and out he came with my slippers, warm clothes, a comfy blanket, a clean wheelchair and huge smile. Off we went...he helped me choose some fun little trinkets from the gift shop for the boys and then we found the "healing garden" and enjoyed breathing fresh air while standing arm in arm under the stars.

I feel so blessed to have him here. He keeps me laughing everyday. He defines every hard, exhausting experience into something easily overcome. During treatments, while I am shaking and in so much discomfort, he will climb into my bed next to me and hold me til it all passes. He amazes me with his intuitive gentle nature (thank you to his family for sharing him with me, though I am pretty sure you couldn't have him back yet even if you tried - HA!!!).

My favorite Doug line of today..."this is the BEST vacation we've ever won!"

Love and miss you all! Hugs, Lannette(and Doug)

WHAT INAUGURATION???

It's been an odd day today. For Lannette and America. They switched her bed last night and gave her an "air" bed which was supposed to take the pressure off her backside.....it was only slightly worse than root canal or water torture. It looks alot like a playpen with high sides. The only things missing were her stuffed animal George and a little sensory overload mobile hanging above her. A baby blankee woulda been nice...you know...to go with her thumb sucking. After virtually no sleep, we have her regular bed back. Everyone showed up all at once today. Physical and occupational therapies, the kidney team and the blood team all showed up at once. So of course the PT and OT people had to come back later. The hierarchy has been established. At first the decision was to skip both treatments for the day, but then we found out they put plasmapheresis back on the menu. Speaking of menu, she now has to order off of the "renal menu" which basically means I (Doug) will be going out to eat or lose a quick 20 lbs. It makes me want to turn bulemic. We think it might be because of a few meals that didn't make sense to the doctors....clam chowder, taco salad and a cheeseburger....which Lannette ate virtually none of. No wonder they decided to limit it a bit. Vacation's over. She is just now getting into her procedure. It is 4:20 Tuesday. Oddly enough the whole hospital has shifted it's attention off of Lannette and on to some sort of inauguration thingy the apparently is happening today...who knew? We think it's very rude. If one more person asks us if we are watching it....well.....we just might leave. Lannette did do some walking around the 7th floor today. First time up. Although she was very tired; there was no nausia, which is a huge improvement. We have been told we will even be able to take a roll outside a bit later if she still feels up to it. Her renal team just came in and they are going to run some more tests tonight and/or tomorrow. Lannette is looking forward to a good night's sleep and a better day tomorrow....and not just so that people will stop talking about all this inauguration foolishness. Hehheh. RON PAUL 2012.

Monday MLK Day!!!

Sorry about not posting yesterday, but I am back on it today. Lannette is doing better and better. She is now getting dialysis every other day, although the plasmapheresis is daily. Here is the biggest news of all...ready?........LANNETTE MADE PEE PEE, WOOHOO!!! Although just a teenie-weenie amount, it is an improvement. Her dialysis treatments are much more aggressive so it's a bit harder on her....but she takes them head on. Yesterday she only had the plasmapheresis which was especially good because she was able to see the Seth and Soren. Of course this made her incredibly happy. They laughed and played and cuddled and it did so much to improve Lannette's spirits. Her spirits are almost always good, but even better because of the boys. She wants to again express her thanks for the well wishes, cards, balloons etc.

Lannette also feels badly that we can't tell everyone everything all the time, but the fact of the matter is that we just don't know all of the answers. We still do not know 100% if it is TTP or HUS. We still do not know the onset or which day and hour they will kick her out of here. We are trying hard to keep everyone as up to date as possible with everything we know. We do know this; her labs are impoving. The different levels in her blood are getting better. Some fast some slow. She is having random visits from the PeePee Bandit. All are good signs. We know it's frustrating for people to not know everything all the time. It is frustrating for us, too. At this stage it is all about her body learning to help itself. So we try to spend alot of time being happy and smiling which is another way of saying; keeping her stress level down. Optimism is everywhere. So be positive, concentrate on the improvements and stay tuned. Thank you so much.

Saturday 9pm

What a long day for Lannette. The dialysis treatment was very aggressive today. The technicians and doctors were not sure if how much of the aggressive treatment she could handle today, but she made it through all 4 hrs of it. It was very tough on her though. They will take blood at midnight and we will know the results of the lab work tomorrow morning. Which is standard, by the way. Right now she is spending some much needed time with family. She is laying here being very strong, but that's the way she is....as most of you know. Anyone ever notice how she will do absolutely anything for anyone and put everyone ahead off herself? Maybe it's just me. Just kidding. I admire her so much for that. I admire her for so many things, really. Keeping me around for example. It's late and we are tired, so till tomorrow....

NO MORE ICU!!!

So yesterday was a very tiring day...for Lannette too. She made it through another full day of procedures and came out with the best results to date. She even "ordered" me to leave with her family for dinner. Dinner was amazing, words can't even describe it. When we returned Lannette was eating some beef tenderloin and in super good spirits. We had some nice social time with her and then the fam left for the night. Not long after we were kicked out of ICU. They said it was because she was doing so well that she could be moved to the floor for some quiet nite-time rest. Lannette and I think we were moved because our humor and positive spirits were having an overly negative affect on the the staff and her fellow invalids by improving their days when they are used to being depressed robots. At this time we want to let you all know how impressed we are with the staff here. So caring and helpful and understanding. We know it's their jobs, but they really have gone out of their way for Lannette.

So It's now Friday noon and she is about to start another looooong day of dialysis to clean her blood and plasmapheresis. Our new nurses aren't quite sure what to make of us I'm sure. We can't stop making jokes and laughing this morning.

Her blood tests and lab work are all improving nicely. Some of the testing is now leaning a bit away from the TTP aspect and more towards the HUS. As this process continues we will, of course, know more. I cant remember if I have mentioned this before but she has a bit of a celebrity in the medical world personally on her case. He is the world's foremost dialysis doctor.

http://depts.washington.edu/nephron/ahmad.htm

In ICU the dialysis and plasma pheresis happened in her room, now she is taken to a small room on another floor for them. Her kidneys are still not creating urine, but thats not expected quite yet anyway. So that's where we are. I hope to update tonight as well, I was just really tired from all the fun yesterday.

a big personal howdy-doody from Lannette

I am taking a quick moment to say good morning before I head off to my day! A shower, a shower I actually got a REAL shower!!!!!!!! Oh the simple joys in life! Things I really don't want you to be too jealous of...my hairy body. Seriously, they are so selfish - for some reason they won't let you shave when your blood doesn't clot.. Next, my white hospital TED stockings. I am slowly stealing them you can each plan for a souvenier pair to wear to Halloween as naughty nurses with me - and that does include the men!
I am faiding quickly now and am off to Dialysis for 3-4 hours and then 4-5 hours of plasmapheresis so I am going to turn this back over to Doug, my hero.
I mostly wantred to give a big "thank you" to you all for your support, love and prayers. I love and miss you and send hugs and smiles.

To my boys: Hello my darlings.It is so good to hear your happy voices on the phone. Im glad you are enjoying your time with your friends. Momma loves you and misses you very much. I can't wait to see you soon.

Ill love you forever. Ill like you for always. Forever and always my sony-roni and setherby you'll be!

XOXO,
Len

Friday 11 am post

I'd like to start today by letting everyone know what a day in the UW ICU is like for Lannette. She starts her day with various physical and occupational therapies to keep her strength up. and then moves on to dialysis (approx 4 hrs) and plasmapheresis. (approx 3 hrs) She has heart exams, bladder exams, arteriol and veinous exams all throughout the day. She has somebody doing something starting at around 7am and it doesnt let up till 7-8 at night. She is strong today but of course she gets tired. She is certainly not just lying around sleeping all day. Many people are concerned and have asked if she is conscious and coherent. She has never lost consciousness. She does get medication for nausea and pain which basically helps sedate her during the long day of procedures.

As for today.... Her blood work has had its most significant improvement over night. There are many different aspects of her blood that they have been monitoring. It would be hard to go into each one but let me say that some have been high and some have been low, but all seem to be climbing or falling back to safer zones, but the process continues. I hope this makes sense. Word on the street is that she may be moved out of ICU tonight or tomorrow....this is just a rumor but hopefully there is some truth to it. She has started dialysis now and i will update later today to let you all know how the day went and if there are any other updates. Thank you all.

How we got here...

Hello to all of the people that love Lannette...and there are alot of us as I have found out. I suspected but confirmation is nice. For those who don't know me, My name is Doug and I have the privilege of calling myself her boyfriend. So many people have called and texted and sent psychic messages that we decided the best way to keep people up to date is thru a blog...which is totally new to me. So please direct anyone who wants to know what the most current info is to come to this blog and find out whats going. So...whats going on is this....

I took Lannette on her first snowboarding trip to Mission Ridge on Saturday the 10th of January. We had a fantastic time. She did amazingly well. Of course, she took a few falls, as well. Early afternoon we were on our last run and she took a cute little face-plant and hurt her wrist. She was brought down to the first aid shack where she was assessed and then I took her immediately to the ER in Wenatchee. In the ER she started feeling very faint and light headed. Her falls also started to develop extensive bruising. Massive hematomas in fact. She was released to go home after about 5 hours in the ER. On Monday she was taken to the ER in Chelan as she was not getting any better. After many tests and a few units of blood, she was transfered to the Wenatchee ER and then ICU. After many more tests it was determined that she probably had TTP. Here is a link for more info on it.

http://www.nlm.nih.gov/medlineplus/ency/article/000552.htm

Lannette was then transfered to the University of Washington Medical Hospital where her diagnosis was confirmed. Although it is unknown what caused the onset of the TTP the result is that her body is attacking her red blood cells and platelets. The kidneys then became clogged with the damaged cells and platelets causing acute renal failure. At this point maybe it's a good idea to say that Lannette is doing well today. As you all know, she is so very strong. The treatment plan now is two-fold. Dialysis to cleanse her blood and give her kidneys a break in conjunction with a procedure called plasmapheresis which separates the blood plasma from the blood then removed. Donor plasma replaces the old in the blood then it is recirculated back into her blood stream. The point of all this is to remove the antibodies that are doing the damage. It is now Thursday and she has had 3 of each procedures; dialysis and plasmapheresis (the third dialysis treatment is underway now)

I am going to be updating this blog as I get information so please check back when you can. If there are no new updates please do not worry, they will be forthcoming. Lannette and I would both like to thank you all for your support, thoughts and prayers. She wants everyone to know how much she loves you all.

Seth and Soren, mommy loves you both more than anything and can't wait to see you. I will update tomorrow. Thank you all so much.