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