Thursday, May 29, 2014

Everything part 2

Thursday Continued:
I woke up to someone saying my name.  I sort of remember being wheeled to the recovery room.  Once I arrived there I was very cold and could not see.  They put something on my eyes that made everything blurry.  I mentioned both things to my nurse and he wiped off my eyes so I could see and wrapped me in blankets.  After this I was fairly coherent.  My mouth was super dry and I felt just a little nauseous so he brought me some ice chips.  Not long after was one of the hours people could come visit in the recovery area, so my Mom, and Dave's mom came by.  They were surprised and happy to see me so awake and alert.  They were also happy to know I wasn't in too much pain.  Only if I tried to move did it hurt.  














This was me when they first came to visit.  I look super puffy from all the fluid and am wrapped in about 100 blankets because I was so cold.  I didn't feel that bad though which was great.  They left after their allotted visit time and within less then 2 hours I was being moved to my room.  One of the perks of donating is a special room that I think is more easily ready the the normal rooms used for the recipients. 

The room was nice and had a good view.  I was pretty alert there and they did give me some pain meds that didn't seem to do much.  The morphine that puts Dave to sleep in a few min. did nothing for me.  And due to the fact I was on my back it was hard for me to sleep, because that is not how I normally sleep.  But luckily if I didn't move it didn't hurt.  I spent a lot of time trying to figure out if I was nauseous or hungry.  This may seem like something simple to figure out but with everything that had gone on and not eating I was unsure.  
View from my room.

View from my room 2
Eventually Stephanie showed up.  I am not sure what time but it was later in the day.  She brought me a puppy stuffed animal, a balloon, and a card. It was nice to see her, and I was happy I was alert enough to talk to her a bit.  While she was there they brought me a dinner tray.  It had some chicken and rice dish on it.  Thinking I was hungry I slowly raised the bed all the way up into a sitting position ready to eat.  I put maybe 2 pieces of rice in my mouth and knew I wasn't hungry I was nauseous.  I quickly spit it out, started sipping a ginger ale and asked for some anti nausea medication.  The nurse came in and gave me some zofran using my IV.  It didn't help.  I eventually started to lower the bed back down and I guess sitting up that straight had the path way to my stomach disrupted because it felt like all the liquid I had drank rushed into my stomach, causing me to throw up.  :(  I didn't have a basin in my room and Stephanie ran out to find one so I used the cover to my dinner.  ick.  It was painful and I ended up getting it all over me.  But I am lucky to have had Stephanie there because she went into Nurse Stephanie mode, and the tech came in to check my vitals at the same time.  So they gave me rags to clean us and gave me a fresh gown.  I was grateful it only got on me and not the bed because I don't know if I could have gotten up for them to change the sheets.  After that episode I was pretty miserable.  The nausea didn't go away and I faded in and out of sleep, with someone coming into my room almost every hour for one thing or another waking me up.  
I swear I am trying to smile here.

In the morning I felt better.  My nurse came and took out the catheter I had to wear overnight.  Which although it sucked having it in, I am kind of glad it was there because I don't think I could have gotten up to use the restroom.  After that came out he pretty much said I had to get out of bed.  So with his help I stood up!  I then put on pants (which is exciting) and walked around my room a bit.  Getting up was a real turning point.  Once I was up I was up.  I instantly wanted to walk to Dave's room so the nurse who seemed unsure about the long walk led me anyway.  It was good to see him.  I was sore and didn't stay long though.  After I walked back to my room the nurse made sure I sat in the chair instead of laying down.  

I felt better then I looked, yay chair!
Eventually, a doctor walked in looked at my incision and asked if I wanted to go home.  I told him that it would depend on if I could eat anything first.  I did not want to leave before I could eat a meal.  I am assuming that because they said I could leave my blood work was good.  I should have asked about it but I forgot.  

Okay once again I am tired of writing and this is getting long so I will come back to it later with a part 3 which should be the end of it!  Thanks for reading.

Tuesday, May 27, 2014

EVERYTHING Part 1

Okay so I think I am ready to start updating everything one step at a time!

Wed. Night:
We didn't really do anything too special wed. night except I did buy us cupcakes to celebrate after we ate out light dinner.  I also got together some pajama pants, a robe, and a t-shirt to take with me.  Before going to sleep we both had to take a shower then use some wipes all over ourselves.

There were 6 wipes, one for each arm, one for each leg, one for the back, and one for the stomach.  They made me feel sticky and a little itchy afterwards.  After that we both went to sleep.
Thursday:
We woke up at 4am to once again take showers and use the wipes.  by 5am my parents were at our house, my mom was carpooling with us to the hospital and my Dad just dropped her off and wished me good luck.  My dad is not good with hospitals and things.  Shortly after Dave's parents showed up and Dave, his parents, my mom and I were on our way.  At this point it still didn't feel real, and I didn't feel nervous.  Not sure why I am almost always nervous about medical stuff.
We arrived a walked over to the same day surgery department, where both Dave and I signed in.  
Here is us with the we woke up too early look while we were waiting.  It didn't take to long before we were called up to the desk.  At the desk we signed some forms and verified some information before being sent back to a pre-op room.  We were in the same room which was nice.  Here we put on robes and socks, and I had to give a urine sample.  (something I should always be prepared for but I never am, I always seem to use the bathroom before they mention it too me.  fail)
They then set each of us up with an IV as well as took some blood from Dave because he took off his blood typing bracelet.  Then the wait began.  It was just a little past 6am at this point and my surgery wasn't supposed to start till 8:30.  So Dave and I just sat around for awhile waiting for our separate nurses to appear.
 
Then all sorts of people came in all asking us our name, date of birth, and what we were having done.  I signed more papers, spoke with the anesthesiologist, a person assisting my surgeon, my surgeon, and probably some other people.  My surgeon was sure to ask if I donated a kidney since I saw him 11 days prior which made me laugh.  He also marked my left side while his partner explained this surgery would have no benefits to me. Also, made me laugh.  I really enjoyed my surgeon he was very laid back and that made both my mom and me feel more relaxed about the whole thing.  Right when things were getting ready to go Dave's surgeon found out about the fluid he had earlier in the week that made him short of breath and wanted to do a last minute chest X-ray.  That had me a little worried but it turned out okay I guess?  I was on my way to the OR soon after it was over so I don't know how it turned out.

Right after the chest x-ray the anesthesiologist came back in, let me know the good news that I wasn't pregnant (that's what the urine sample was for), the gave me a dose of something to relax me but I didn't really feel anything.  Then I waved bye to Dave and everyone and was wheeled down to the OR.  When I arrived they asked what kind of music I listened to and unsure what to say I just said Ska.  They had never been requested to play ska before, but they put on some ska music using Pandora or something and I fell asleep.
Right before I went into surgery!
Okay, so I am going to post this now and update later with more of the story.  Writing it out takes a lot of time and I am still a bit tired these days.  So, look for more later this week!

Saturday, May 24, 2014

I'm Home

I am home.  I came home the afternoon after surgery which was nice!  It was boring sitting in the hospital room.  Dave is still there and may be home tonight or tomorrow.  I can currently walk to the end of our street which feels like an accomplishment even though it is really not that far.  I am going to try and increase my distance and steps every day (yay for having a fitbit to track my daily steps).  Feeling good at the moment, but definitely have my ruff moments.  Pain medications do not seem to affect me too much meaning it hurts a lot of the time but I am getting used to it.

I would update more but once again my computer chair is not very comfortable meaning I am going to move to the couch or outside and play Zelda on my 3DS (my treat to myself after surgery).  More updating and pictures coming soon....

Friday, May 23, 2014

Update from Hospital

Just a quick update to let everyone know we are both doing well.  The donor room has a computer with internet allowing me to update, but it won't be long because sitting in this chair is painful.  Both surgery went well yesterday and I was way more coherent then I thought I would be after it.  I had a lot of nausea yesterday thought so that was really the worst thing.  Felling better today and may go home this evening.

As far as I know my kidney is working in Dave!  He is producing urine!  Not sure on much else though, only have seen him once since and its a long walk to his room so it wore me out and I didn't stay long.  After he gets breakfast he is supposed to be walking to visit me.  :)

More updates late when I am feeling better!

Thanks for all the good thoughts and prayers!

Tuesday, May 20, 2014

Update

Dave is feeling a lot better, dialysis made the shortness of breath his was experiencing go away.  Unfortunately, he also had a really bad migraine yesterday due to some nitroglycerin patches they gave him to try and help him before they could give him dialysis.  This meant he didn't want to answer his phone or talk to anyone.  Because of this the coordinator at UMMC was calling me to see if I could get a hold of him.  When I called Dave he seemed very much like he didn't care about getting the blood work for the transplant, he was short with me and hung up before I finished talking.  It upset me a bit, I knew he had a migraine but I felt like I had been rearranging my schedule, and doing all these things to make the transplant happen and he couldn't even make a phone call/answer the phone.  It was frustrating.   He pretty much said it was just the headache speaking and he was feeling better when we discussed it later that day.  Luckily the coordinator called Dave's mom and allowed Dave to give the blood sample this morning.  Which he did!

With all the blood being given things seem to be going as planned.  The only real issue is that I think this bracelet I  am supposed to wear till Thursday is giving me a rash.  My arm from wrist to middle of my forearm itches and has little bumps.  Its weird though because it goes about an inch or 2 farther up my arm then the bracelet can reach.  If it doesn't get better I might just cut off the bracelet and let them know it was giving me a rash.

Okay, that is if for now, if there is any excitement between now and Thursday I will probably post again but I am hoping that everything continues to go as planned!

Monday, May 19, 2014

No Rest

Without the surgery this weekend Dave and I did all the things!  No Rest is the motto of our life and this weekend was a good example of that.  Friday night we spent time at the thrift store, getting burgers for dinner, and playing Civ 5 with out house mate Fi.  This was followed by an early morning Sat. where we Drove up to Piscataway, NJ for The Steampunk World's Fair.  We spent all day wandering around and taking in all the people watching!


At about 10:30 we left there and drove to my grandfathers vacation trailer in Seaville, NJ where we quickly fell asleep.  On Sunday we woke up and went to the Cape May Zoo.  They had a baby giraffe that was adorable, we are wondering if it was steam powered? 

On Sat. morning Dave was feeling like it was slightly hard to breath but we thought it was just dust in the trailer because it isn't used often, this feeling lasted him the entire day.  When we finally arrived home he took a shower and went to try and take a nap.  He couldn't fall asleep because laying down made it harder to breath.  He spoke with his mom who thought it might be a build up of fluid and she came and took him to the Good Samaritan ER.  After a lot of tests they decided it was probably fluid and he needed Dialysis, which they wouldn't be able to do until this morning.  So that is where he was the last I talked to him.  This meant he would not make it to the appointment we had at UMMC to get blood drawn this morning.  I went to UMMC alone and let them know what was up so hopefully they will find time to draw his blood before Thursday.  I on the other hand got one of those nifty bracelets to wear again until Thursday.  

Still hoping everything goes as planned and there are no more delays.

Friday, May 16, 2014

"Not enjoying my new kidney."

Amber: "I'm going to bed I don't know what you are doing."
Dave: "Not enjoying my new Kidney."

This is the attitude floating around right not, sad, but joking about it.  It sucks it was moved so close to the surgery time.  But we are making due and moving on.  Steampunk World's Fair is now happening this weekend so that should be fun!  It looks like they have lots of music going on throughout the day so we will be entertained.

It also means more blood work.  We are both going to the transplant clinic on Monday at 8am for blood work.  This means at least 2 more hours I need to take off work, but I am trying to work late 2 days to make up for it.  It makes me frustrated they can't do the blood work any other time, all this changing of times and rearranging is really messing with my scheduling, it is great I have such a good boss and work environment so I can rearrange things last minute.

Blah, just playing the waiting game.

Wednesday, May 14, 2014

Postponed!

Unfortunately the surgery has been postponed.  Due to Dave's insurance showing up inactive even though it is active the hospital will not perform the transplant tomorrow.  This means it is now next week.  I will have to go give them blood again for my blood typing which may mean taking off work again.  Taking off more would be sad because I have it all planned out time wise.

Rawr this is frustrating, but we are going to go have a Big Dinner and probably a boozy drink to make up for it.  I also will now try and attend the Steampunk World's fair this weekend.

Hopefully neither of us get sick before next  weekend!


:(

One more day! And breakfast!

Today is the last full day before surgery, this time tomorrow I will be in the middle of the nefrectomy!  Its and exciting thing to think about, I am ready for it to all be behind us.  I have a great support system of friends and family.  Lots of messages and phone calls yesterday to say they were thinking about us and I am sure there will be more today.  My only real message to people is don't worry about us.  Think about us in your prayers and all but try not to worry. Hearing about people worrying doesn't help me, plus the surgeons perform this surgery all the time and are pros at it.  Trust in the science, if these surgery goes successful most of the time it should this time too.  I know my surgeon hasn't had any serious complications arise from any of his patients and Dave's surgeon is supposed to be great at what he does as well.

Okay, on another note I had a great breakfast provided for me today by my coworkers!  They are awesome and love all excuses to celebrate things with food!
Muffins and Fruit


Waffles and Coffee

Eggs (a rare occasion where Joe made something! He will probably bring up the time he made eggs from now until he retires)

Bacon

Everything!

Breakfast was a great way to start my last day before surgery.  Now only light food till tomorrow I don't want to get nauseous.  

Reading over my Advanced Directive stuff today and planning the trip to the hospital later.  I want to spend as much time with Dave as possible because I know I'll be worried about him after surgery more then myself (I know I said not to worry and I know its hard not too) and I don't know how long until we are both up and moving and ready for visitors it will be after the surgeries are over.  

Optimism is the key at the moment and I think I am ready to go!
Thanks Everyone for your support!

Tuesday, May 13, 2014

all the calls

Today everyone is calling to confirm details and see if I have any questions.

First was the social worker.  She called to make sure I wasn't being pressured to do this.  She also wanted to make sure I wasn't receiving any money or things like a diamond ring.  (I rolled my eyes at that one)  She also wanted to go over the risks again and let me know this isn't a cure just a treatment and it could reject.  All things I know about.  She also said my room at the hospital would have snacks, drinks, a TV and a computers, donors get the upscale rooms.  She also wanted to make sure my family was doing okay and know the people I would be around after surgery.  I told her we lived with another couple and when she asked for their names I said "Kristin and f.... Bryon."  It would have been interesting explaining Fi's name to the social worker. (for those that read this and don't know my housemates name is Bryon but we call him Fi which is his nickname from high school that stands for fucking idiot) I should see her again on Friday after the surgery but she will be seeing my mom at least on Thursday while she waits for me to get out of surgery.

Then my coordinator (well 2nd coordinator my first one is out on maternity leave, which is funny because so is Dave's original coordinator) called to just go over what I should do tomorrow.  Eat a normal breakfast and lunch and a light dinner. Nothing after midnight.  Work is doing a breakfast thing tomorrow so I will just eat a bigger breakfast then usual and a smaller lunch and I think it should all work out.  The Coordinator told me to be there at 6am on Thursday ready to go.

Its so soon now!  I am going to try and get pictures though out the day and maybe one of my kidney.  I'll put my mom in charge of these things mostly because I will be out of it.  I think pictures will be a more exciting way to share my experience here.

So yeah, I'm excited to get this over with, one more day then Transplant Day!

Monday, May 12, 2014

Preop appointment and more.

Its almost here and things seem to still be on track!  Friday I went in for my preop appointment.  Met with my surgeon Dr. Lamattina.  Didn't really go over anything new.  My mom and I both like him and feel good about him performing the surgery.  Should still be the single port surgery (click for video of surgery)  and he said he has never had to convert it to an open nefrectomy. He has had to add a second port before, but I think that is on very rare occasions.  After meeting with him quickly I went over to the prepcenter where I had to wait 15 min.  (mind you they called me 3 times to make sure I would be there on time and then made me wait when I was there on time).  They took blood samples, urine samples, checked my airways, and asked a ton of questions most of which the answer was no.  It was quick enough and easy.  They also gave me this bracelet to wear until Thursday...
I did the Warrior Dash Saturday and cut it off beforehand so I didn't destroy it.  There has to be a better way to keep track of people then making them wear a bracelet for a week.  Dave cut his off before his kidneys were removed so I think it will be fine.  Plus I think the mud would have destroyed it.  I'll just take it with me on Thursday morning.
(Me all the way on the left and my Warrior Dash Group!)

Dave has to have some blood work drawn today and go to an information session about post surgery.  I think he is learning how to take his drugs and stuff.  I'll learn more about it all tonight.  The blood work they do today will make sure our blood still mixes well which hopefully it will since he has had 2 blood transfusions since the initial cross match.  

Now we are currently just trying to get the house cleaned up.  I want the bedroom clean encase people come upstairs to see us, all the laundry to be done, and other little things.  I'm working every day until the surgery so I feel like it will be here super quick. I think working right up to it will help keep my anxiety away and I think Wed. night I should go do some yoga.  I feel ready and calm about it all still and am glad I am able to donate.  It is weird though to think that by the end of this week Dave will have a part of my body inside of him.  

I also think that we should name the Kidney, probably something gender neutral.  If you have any suggestions post them in the comments for me!

Thanks for the support everyone!


Friday, May 9, 2014

Shout Out to My Coworkers

For people that don't know I am working in a grant funded position at a crime lab that does not have benefits and only gives me 5 sick and 5 vacation days a year that have to be accrued.  When I decided to donate most of my time was already used on other things.  I have the option to work Comp time which I started to do as much as I could (without getting burnt out) to get as much paid time off for the surgery as I could with a goal of 3 full weeks off.  This week I realized I was 2 days and 5 hours short with plans to find time to work 5 extra hours to make it only 2 days.  I only was able to do 2 extra hours this week, but thankfully my coworkers pulled together their comp time which my Boss let them donate to me.  This means I do not have to worry about missing pay while out, which is one less thing to worry about.  Hopefully, now I will only need the 3 weeks I have planned to heal.  I am grateful to work in a great environment with a awesome boss and such thoughtful coworkers.  Their support in my decision to donate means a lot especially since I know they are going to have to pick up some of my daily tasks while I'm out.

Also, I am going for my preop appointment today so hopefully everything goes well.  We are now less then one week away from surgery.  So I will update later with that.

Tuesday, May 6, 2014

Getting Things Together

I am feeling good about the surgery at the moment.  I only need 5.5 hours of comp time (which I can get) to take off just shy of 3 weeks of work.  Meaning if I stay out for 3 weeks I'll only miss 2 days of pay, which is exciting, and some people may still donate some of their comp time to me so I may be fully covered!  I also set up the spending log already so it will be easier for my coworker to do while I'm out, and I will try and put in payroll as far out as I can with the information I know on Thursday so that is take care of as well.  Its nice to have time to prepare things before the surgery.

Then at home Dave and I are doing ALL the laundry this week/weekend, and cleaning up our room and stuff so we don't have to worry about it much after the surgery.  I think we should probably go grocery shopping sometime next week so we have food around the house after the surgery and don't have to go get anything.

Its getting more real with every passing day, I keep waiting for something to delay it again (although I DO NOT want that to happen), but hopefully everything stays on track.  Some days I am anxious about the whole thing and others calm, but overall no matter what I'm feeling I cannot wait for the relief and freedom Dave and I will feel after the surgery is over, when the kidney is working, and when everyone is healed!  The idea of not living our lives around a dialysis schedule, the thought of Dave being healthy and happy, is enough to keep me excited and ready for the surgery.  

Friday, May 2, 2014

SocialMediaStoleMyKidney





There is a documentary being made called Social Media Stole My Kidney, about one womens decision to donate a kidney after reading a tweet.  She then travels the US to meet other kidney donors and talk about kidney donation.  I think people should check it out, so click here, to learn more.


Thursday, May 1, 2014

soon.

After looking at my calendar I am feeling a little anxious.  The surgery is only 2 weeks from now!  It feels so soon, but yet so far.  I know I feel like I have time to get stuff done before then like laundry, some work stuff, grocery shopping, buying another pair of my awesome yoga pants, etc. but I know that these next 2 weeks will probably fly by so I should make a list and start checking things off.

Dave had his pre-op appointment yesterday and they told him not to get sick. Mine isn't until next Friday but Dave said they looked over my lab work while he was there and told him things look good!  That is exciting.

As for me feeling anxious I hope it goes away, and I know its just me being stupid (I get anxious over the littlest things for no good reason).  Maybe I'll pay for some Drop in yoga classes these next to weeks so I can relax a little.  Plus there was a possible scheduling conflict with a work thing while I was going to be out, so that stressed me out a lot yesterday, but my boss was awesome and resolved it for me, so one less thing to be stressed about.

So that is really it for now.

P.S. I am looking for a cool Kidney Tattoo idea, so if you have any suggestions send them my way.  :D