Wednesday, December 17, 2014

SAWBONES

One of my favorite podcasts did a transplant episode.  The Podcast is Sawbones: A Marital Tour of Misguided Medicine, and they normally focus on weird medical history.  I sent them a e-mail awhile back about transplants hoping they would one day do a podcast on the topic.  Turns out I should have put more back story in my e-mail then just suggest transplants because another listener who is going to donate his kidney, told them he was going to donate and that he wanted them to do a episode on transplants and they did!!! So needless to say I was excited about the episode!  I am going to link the episode below for people to listen to.  I would also recommend you check out their other episodes as well if you like learning about weird medical things. TRANSPLANT EPISODE!  SAWBONES!

Tuesday, December 16, 2014

6month Blood work

Was sent the form to take to Labcorp to do my 6month blood work.  Kidney is still working well and I am feeling good.  I guess we will see how my body is doing when the results come back.  I'm assuming everything is normal since I feel fine.  I will update again when I have the results.

On another note Dave and I planned a 1 year kidneyaversery cruise.  Its about a month before the one year mark because that was cheaper but it will be our little celebration.  It will also make up for the trip Dave missed when we originally found out his kidneys had failed.  Hopefully he will be able to go on this one (we did buy trip insurance just in case, learned our lesson).  We will be going to Cozumel, Montego Bay, and Belize.  Should be a blast!

That is all for now.  I just like to post mini updates to let you know we are doing well.  :D 

Tuesday, December 2, 2014

#givingtuesday

It is Giving Tuesday and that means I want to talk to you about the Cupids Undie run.  I know this is not Kidney related and I should really post an update about that soon (blood work in the next week or so to make sure everything is still good, as soon as I have that information I will share.).

The Cupid's Undie run is a run to help end Neurofibromatosis, a disorder that causes tumors to grow in and disrupts cell growth in ones nervous system.  It can be very painful.  The run is done in February in the freezing cold (at least in our location, it was snowing last year), and in ones underwear.  The reason for this is to show that we are willing to do anything to help find a cure including run in freezing temperatures, through a city, in our underwear.

I am raising donations for the Children's Tumor foundation to help find a cure for this painful disorder.  http://my.cupids.org/AmberWoo These donations go to help people like Meg Rowe Baltimores NF Hero!  She has Neurofibromatosis and it has turned into a form of cancer she is fighting.  She did the run last year and I can not wait to run with her this year as well as raise as much money for her and others who are battling with her.  For more on meg check out her page http://www.caringbridge.org/visit/megrowe.

So if you are looking for a place to give some extra money to this holiday season, check out my page and help find a cure for NF.  Feel free to also give to organizations who deal with transplants too, if not The Children's Tumor Foundation


Wednesday, October 8, 2014

Nothing that new.

Its been awhile now since my last blog post and since the surgery.  Dave and I are both doing well.  Our schedule has been a little over packed lately, possibly because we are making up for all the things we couldn't do a year ago, due to him being on Dialysis.

 I still get dehydrated faster and keep trying to drink lots of water, but I do forget sometimes.  I also on occasion get a slight pain where my kidney used to be.  I am assuming this is still from scar tissue around my muscles and over use of that area at times.  There is also still hardly any sign I had a surgery, people are amazed at the incision site being my belly button and looking so nicely healed.  I haven't forgotten about before and after pics, I have just been busy as mentioned above.  I am going to try and challenge myself to do it by the end of this week, so if you are interested keep an eye out.

Onto other fun things, Dave and I brought home a puppy, something we definitely did not have time for when he was on dialysis.  She is a Brittany and we have named her Echo.  She has a lot of energy and is keeping us both active which is great for the both of us.

Lastly, last year I ran In the Cupid's Undie Run and am planning on doing so again this year.  The run takes place on Valentine's Day and is a mile run around Baltimore City in my Underwear.  The run raises money for The Children's Tumor Foundation to help end neurofirbomatosis(NF).  NF is a genetic disorder that causes tumors to grow on various nerves.  This disorder can cause lots of difficulties for people who have it.  Knowing how bad tumors (B-9 or not) can effect the human body and having personally been effected by someone who has had a different type of genetic tumor causing disorder I feel like this is a great cause to support.  This is why I am passionate about raising money this year to help find a cure for NF.  By running this race I committed to help raise money for the cause.  If you are interested in helping me do that you can donate to my page http://my.cupids.org/AmberWoo .  All donations go to The Children's Tumor Foundation.  

My Team from Last years Run.

Monday, July 7, 2014

Update

It has been almost 2 weeks since I met with my surgeon about the pain I was having.  Luckily the pain is gone and I am getting back to normal again.

Dave and I had a chance to spend 4th of July at Ocean City, MD.  Its great being able to have him go in pools and things again since he no longer has the dialysis catheter.  We took full advantage of this and spent a day at the water park!

On another note, you can hardly tell I had a surgery at all.  Very little scaring!  One day I will post some before and after pics so you can see how minimal it is.

Lastly, a ECU tech at my job just had a stroke at the age of 28.  I know it isn't kidney transplant related but that is the same age Dave was when he was diagnosed with ESRD, and I know how hard having something major happen to someone so young can be.  So I just wanted to share her fundraising page, to maybe help give  her and her family some more support during this time.  So  if you want to know more feel free to click here.

Okay, that is all, I'll try and put up some before and after pics soon!

Wednesday, June 25, 2014

Pain in back and side

For a little over a week now I have been having a very sharp stabbing pain in my left side.  It comes and goes, normally being caused by heavy breathing, how I;m sitting/laying, hiccups, etc.  On Sunday I e-mailed my coordinator, just to see if it was something I should be concerned about.  I hadn't had pain in at least a week and a half maybe 2 weeks before it started, and was feeling great.  She suggested I talk with my surgeon so we scheduled a appointment for yesterday.  

I saw the surgeon for only like 10min. maybe, he is a busy person (had just run over to see me after a liver transplant it sounded like).  After seeing where the pain was he was not concerned, said it could just be scaring on the inside and stuff, but if it gets worse or isn't gone in 2weeks or so to give him a call and discuss it further.  Maybe set up time to do a CT scan.  

So in short, sharp pain isn't bad, but its definitely not fun.  It also a jerk because it had me feeling really good, thinking about jogging and NIA before it decided to show up.   

Stupid lack of kidney....


Friday, June 20, 2014

One Month Post Op

It has been 4 weeks since the surgery and things are going well.  I went back to work last Thursday and that has been good as well.  It is not making me as tired as I expected, but I still am more tired then I used to be.  I have developed a pain/discomfort on my left side below my ribs when I cough, hiccup or move a certain way.  I am thinking this is just from being more active since going back to work.  If it doesn't go away soonish I'll give my coordinator a call to make sure its normal, but considering the pain is where my kidney was, I'm assuming its normal.

My incision is looking better too.  That was where a lot of my pain was originally but not anymore (unless I forget and lean against a counter which is perfect height.  It does have some crusty-ness too it though, which I am hoping is also normal.

Dave is doing well too.  He will be going back to work on July 7th.  He just has to do blood draws once a week at lab corp as well as meet with someone once every few weeks.

Its nice to have all this free time with him.  He also was given the okay to use pools so his parents Hot Tub is open and has been used.  He is really excited about being able to use it again after so long.

Okay, I think that is it for now.

Tuesday, June 3, 2014

Everything Part 3!

Okay, to pick up where I left off.  The Dr. Said I could go home but having not eaten anything since 5:30pm on wed. and it now being Friday I wanted to make sure I could handle food first.  I was unsure when the breakfast tray would be coming so I grabbed a starbucks drink from the mini fridge they had in my room and some grapes that were also in my room.
It was great to have that coffee drink there.  Yum.  I was able to handle those things well.  I became tired of waiting so I once again got up and walked down to Dave's room.  
This time we remembered to get pictures together!  I even made him walk to the wall that honors all the donors that will allow their name posted, living and deceased, to take a picture.   It wasn't a long visit but it was nice to see him. 

 I then walked back to my room where I found a delicious breakfast sandwich waiting for me.  It was nice to eat a full meal.  I then also played a game of Tokaido on the computer they supplied me.  
My room had all the perks.  But I quickly was bored so as soon as the asked if I wanted to go home I said yes!  I was feeling good with the exception of some pain, I could eat, I could move, so I felt like it would be more relaxing at home.  They said they were sending some prescriptions to the pharmacy and they would be ready in an hour or so and then shortly after the nurse came by with my discharge paperwork.  So with the help of my mom (bending over was not an option) I put on normal clothes and waited around an hour till I could head to the pharmacy.  Before I officially had the okay to go home the Social Worker I worked with stopped by and gave me a shirt, a calendar, asked if I wanted to have my name on the board (I said sure), and just made sure I was doing well.
While I was getting my stuff together to leave my surgeon stopped by and seemed glad I was going home and feeling good.  He just told me not to lift anything over 10lbs and that he would see me in 2 weeks.  It was good to see him again before I left.  I really enjoyed him as my surgeon.  
So finally I gathered all my things (by I gathered I mean my Mom and Dad Gathered and I held the stuffed dog and balloon) and told the nurse I was leaving.  She kept asking if I wanted a wheel chair, but we decided against it so I could walk over to Dave one more time.  I saw Dave, and we said a quick goodbye, us both being tired and in some pain meant we would just have to talk more later when we were both more up to it.  As I was leaving Dave's roommates wife kept telling me how awesome I was.  I just said thank you and went on my way.  It weird having people thing I did something awesome/heroic mostly because I don't see it that way, but I think that idea could be a whole post on its own, so another day!

We went down to the pharmacy where they had not even received the prescriptions yet.  I was tired and sore and the benches by the pharmacy had no backs which made it painful to sit in.  Backs of chairs were very useful in the beginning.  My mom went back up to the floor I had been on quickly to see what happened and they said they would send them down again.  It was 4 things, Percocet, Ranitadine, Senna, and Dosculate Sodium.  Mostly just percocet and then drugs to help with side effects of percocet.  We waited about 10-15min. then stood in the drop off line to see if they had made their way down yet, and they gentleman said they had them and was working on them right away, I think he could see the discomfort I was feeling.  Instead of waiting for them there we went and had lunch at the food court.  When we came back they were ready, and I was treated super nicely by the tech, and was again called a hero, ick.  haha.  But then we went home!  Where I spent the rest of the day figuring out if the percocet really helped (1 tablet every 4 hours), which it did in the middle 2 hours of taking it, and relaxing. 
 It was great to be home and my mom spent that first night with me.  It was useful having her make dinner and things even if it felt very odd being waited on.  I am a very independent person.

Okay that is actually all for today.  I do have some more to say, and I want to read through these past 3 posts and add in anything I forgot.

But current time update, Dave and I are both doing well, I am trying to walk a lot, even if I am still a but slow.  The kidney is still working inside of Dave and he keeps having to go back for blood work (which is normal).  I can not wait to be 100% healed (still some incision pain and some side pain where I think I may have slept on my left side weird, as well as not having the same stamina I had before) and have Dave healed and not having to go to UMMC multiple times a week.

Once again thanks for your support!

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

Tuesday, April 15, 2014

One month!

There is officially only one month until the transplant.  Next week I will head back to lab corp to do the pre-op blood work (again) so it will be done and I won't have to worry about forgetting it.  Then my pre-op apt with my surgeon and anesthesiologist will be here before we know it, then finally the transplant!  It still feels like a long time away but I know with every weekend between now and then basically being busy it will be here sooner then I expect.  I feel like I should start getting stuff together, coming up with a list of what to bring, what we should have at the house for after the transplant, and stuff like that.

Either was everyday is a day closer to Dave being off of Dialysis and being pretty much healthy again and that makes me so excited!  I would expect myself to get nervous at some point but really I am just happy things are still going as planned and I am pretty calm about the whole thing.  I think my lack of anxiety is how I know this is what I am supposed to do, because normally I'd be super anxious by now.

Well, that is all for now, hope everyone has a great Easter this upcoming weekend!

Friday, April 11, 2014

Blue and Green Day!

April is Donate life month and today April 11th is National blue and green day.




Although I do not have any Blue/green shirts that are work appropriate (they all have dinosaurs on them or something) I wanted to let people be aware of this day.  People do not need to be living donors to help people who need transplants, they can do it just as easily by becoming an organ donor on their licence.  This way when one dies (hopefully from old age) any usable organs and tissues can be given to someone in need, making their lives and the lives of their families better.  Just something to think about.  Its an easy thing to do and doesn't hurt you at all.

"Fact: Anyone can be a potential donor regardless of age, race, or medical history.
Fact: All major religions in the United States support organ, eye and tissue donation and see it as the final act of love and generosity toward others.
Fact: If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ, eye and tissue donation can only be considered after you are deceased.
Fact: When you are on the waiting list for an organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information, not your financial status or celebrity status.
Fact: An open casket funeral is possible for organ, eye and tissue donors. Through the entire donation process the body is treated with care, respect and dignity.
Fact: There is no cost to the donor or their family for organ or tissue donation."

The above was taken from the Donate Life website.  Something as simple as checking a box when you renew you licence can save lives.


Tuesday, April 8, 2014

3D Printing Organs

Found a good article about the 3D printing of organs and different opinions on it.
"Basically what it allows you to do is build tissue the way you assemble something with Legos," Murphy said
 I feel the technology behind this is fascinating.  There are so many different things you can do with science these days it is amazing.  I can see some of the ethical debates about regulating organs grown through 3D printing and keeping up with the quality of organs produced.  But overall I think this technology that as it progresses will hopefully be able to offer more organs to people that need them.  To me getting people off of transplant lists having them be able to stop waiting so long for an organ, be it a organ grown in a lab or one from another person is what is important.  I know from experience now with Dave waiting for the Kidney transplant that Dialysis sucks and the waiting sucks.  Hopefully if he every needs another kidney (A long time from now I hope) science and technology will have progressed far enough to get him one right away, possibly by growing one specifically for him in a laboratory.  The Dr. at Johns Hopkins said that might be the case and I can only hope for more research into the creation of human organs.

On another note It would be really interesting to be on the teams researching this (organ legos sound awesome!), maybe I should have branched out a bit in my studies and learned more about the biology fields.

Tuesday, April 1, 2014

New Date

We have a new date!  May 15th.  This means I can still do the Warrior dash on May 10th!  Also due to it being pushed back I may have enough time save to take 3 full weeks off with pay!  At the rate i am going I only need to make up 22hours of comp time (and work good Friday) between now and the 15th and that is doable, might be difficult but doable.  Time to actually start coming in a half hour early and stay a  half hour late.

So what this means is I have to do the pre-op blood work again but I cannot do that till after April 17th!  I also have to meet with the anesthesiologist and do the pre-op apt with them and finally schedule a time to meet with my surgeon to sign surgical consents.  But things are moving along!

The only hiccup in this so far is Dave was given a blood transfusion yesterday and will receive more blood on Wednesday.  This can mess up the cross match.  But hopefully that doesn't happen!  A final cross match won't be done till the week before the surgery so no use in worrying for that long, just have to hope and pray everything works out the way it is supposed to.

Thursday, March 27, 2014

Dave's Kidneys

For all interested here is a picture of Dave's kidneys.  Keep in mind they are supposed to be about the size of a fist.  It is obvious why he needs a new one.

Click Here To see

I think they look like baby alien pods.  Your opinions? 

Monday, March 24, 2014

Dave Healing Update

Dave is doing much better.  He came home from the hospital last Thursday night.  It was a surprise to me because I went out to a concert we had tickets too with Jenny (my Dave replacement for the night) and when I came home he was downstairs sitting on the couch.  It was super exciting to see him home even if it was 12am and I just had to go to sleep as soon as I saw him.

It still seems undecided if he actually had an infection or not but they were playing it safe by keeping him at the hospital for so long so I guess I understand that.  But currently he is up and around almost back to normal.  We even went to lunch and a movie on Saturday.  It was nice to be out doing normal things with him again.  His incision is also healing well from what I can see.  He was worried about having a gigantic scar but I think it will heal well and be hardly visible based on what its looking like now.  The only issue he seems to be having is regulating his body temperature, I'm not sure if that is a side effect of having no kidneys or not.  He is always cold and yet always sweating.  Hopefully his body will figure it out with time and we will be transplant bound before we know it!  He meets with the surgeon and I think medical staff on Thursday so maybe they will give him a time line then.  I'm going to try and get him to ask about it, but without me being there I don't know if he will remember.

Okay, that's all for now.  I'm just hoping to have this transplant as soon as possible (after the warrior dash haha) so life can be normal (or as normal as it can be).

Wednesday, March 19, 2014

You have to go back to go forward sometimes

Dave is in the hospital again and has been there since late Sunday evening.  On Sunday I noticed he hadn't eaten anything but a few bites of fruit all day and then only about 3 bites of his dinner, he also slept all day long.  I was concerned and made him take his temperature because I felt something was off.  His temp. was about 100.2.  I was unsure if that was high enough to take him somewhere so he called his mom and she decided he should go get looked at.  He went to the ER at UMMC where they gave him some antibiotics and said it might be the beginning of pneumonia.  The surgical team made it seem like this happens all the time and that he would be fine and could leave, but then the medical team wanted him to stay.  Because he was already told he could leave he left and went to Dialysis at Good Sam.  While there his Dr. decided he wanted him to be looked at in their hospital so Dave went to there ER after dialysis.

This is where it gets complicated, it is now Monday morning and Dave is at Good Sams ER where they don't want to admit him because he is post op from UMMC.  So they decide to transport him to UMMC.  Dave then waited till 4am this morning to be moved to UMMC that is almost 48 hours from when they said he was going to be moved.  We are hoping that the antibiotics they have given him have cleared things up and that he can go home today, but that now depends on UMMC.  Its a bunch of weird hospital procedures that are causing Dave to stay in the hospital and it kind of sucks.

Either way he is doing much better.  He is not in nearly as much pain as he was the week after the surgery and seems to be adjusting to life without kidneys just fine.  Still hoping he heals quick so we can get this transplant over with and have things get back to basically normal.

Monday, March 10, 2014

Dave Update!

Dave had his bilateral nephrectomy last Friday.  The surgery went well.  The surgeon said Dave's kidneys were HUGE and mentioned he would get a picture of them for us.  Dave is doing better then I expected with everything, the incision is long (sternum to pelvic area) and hurts a lot but he is getting better every day.  Hopefully he will get past the pain and be up and walking a lot soon so he can go home!  Now all he has to focus on is healing and getting better so we can proceed with the transplant, which will now be a piece of cake compared to this surgery for him.

Tuesday, March 4, 2014

Transplant Pushed Back

So I found this out last Wed. but I also went to Reno last Wed. so I have not had time to update.  The surgeon looked over Dave's MRI and decided he could not remove the kidneys and place a new one in at the same time.  We are a little unclear on the reason why and just heard this from Dave's coordinator but Dave will meet with the surgeon tomorrow and is going to ask about it.  This means Friday he will have a bilateral nephrectomy (removal of both of his kidneys).  After about 2 months when everything is healed we can then go through with the transplant.  Dave is not happy about being cut into twice but if it is the best way to keep my kidney from rejecting then that is what will have to happen.

Also, received the results of the test they did because my Mom has lupus.  It came back negative which is a good sign.  Hopefully Dave will heal up quick and we can get him a new kidney as soon as possible (taking into account I have already paid for the warrior dash and it will have to happen after that, luckily he understands that I want to run the race before the transplant even if it can happen before it).  This would put the transplant sometime in May.

I do not know how many more updates there will be in the next 2 months with nothing happening on my part, but I will try and post updates about Dave's nephrectomy healing here and there and will definitely update when a new date is selected.  So if you just follow this blog randomly, you might want to subscribe using your e-mail at the right if you are interested in future updates (you might forget about this blog in 2 months and want a reminder in the form of an e-mail).

On a side note Reno was awesome!  Glad Dave had a small vacation before surgery.

Wednesday, February 26, 2014

Last minute stuff....

As I mentioned before Dave had an MRI Monday, this showed that the main big tumor on his kidney is a angiolipoma which is fine, but there are other tumors that they can not make out.  Because of this they are not sure if they will be able to take out and put in a kidney at the same time (the are definitely taking them out because they are big and such).  This would mean he has surgery sometime soon to remove the kidneys, then he heals up a bit for 3 months and we proceed with the transplant at this time.  We are waiting to hear back from the surgeon who is going to remove the kidneys to see if it can all still happen on the 7th.  I believe we all hope it can happen at the same time so Dave does not have to go through 2 separate surgeries and so he can be off of dialysis ASAP!  But I also don't want any increased risk of rejection, and I don't know if removing the kidneys at the same time would increase that risk or not?  Something to think about... But what this means is I still don't know whats going on and we are still playing the waiting game with only 10 days left till possible surgery.  Blah!

Monday, February 24, 2014

Getting Closer

Today Dave has an MRI and I am going to LabCorp to do some of the last blood work!  Things are getting closer and it will be here before we know.  Since my last post they planned my prep-center visit for Tuesday, March 4th  at 3pm so at least something is planned.  This just includes meeting with the anesthesiologist mostly.  Dave has this scheduled for the same day at 2:30, he also has a meeting with his surgeon on Tuesday Feb. 25th, I still don't know when I will have that done.  I am just going to have to trust the testing center to fit it all in before the 7th!

Overall, I am pretty calm thinking about the whole thing.  If Dave would finish looking into Medicare (they cover donor post op complications I believe) I would feel calmer but he said he was going to be doing that today.  I can only hope that everything continues to go smoothly and that before we know it it will be over and life will be getting back to normal.  

Thursday, February 20, 2014

Lets Play the Waiting Game Again

So for anyone that doesn't know, I am a planner I like having my schedule planned out, knowing what time I need to be place, whats going to happen when I get there, etc.  This kidney donation is messing up my planning.  Dave is having an MRI on Monday to look more in depth at the tumor on his kidney, my coordinator will not set up a pre-op date until the results from that are in.  With the surgery on the 7th and me being in Reno from the 26th till the 3rd I would like to know if getting a preop apt right when I get back is doable.  This way I can plan my days off and hours I am using accordingly.  But without knowing these things it is really hard for me to get a sense of time management.  Plus I want to clean everything, buy food, and do all of the laundry before surgery that way I don't have to worry about things immediately afterwards, but not knowing what days before surgery I will be free I don't know how to plan!

Oh well, I know that planning isn't that important, I just like to be informed and ready well in advance and things are not happening as far in advance as I would like. 

Friday, February 14, 2014

National Donor Day

It has come to my attention that today is national Donor day!  I just wanted to share that with everyone so they think about becoming a donor (not just a living donor but an organ donor after they die by selecting to be one when updating ones licence).  Also Happy Valentines Day!  Sadly, Dave will be spending it at Dialysis so no special plans with him, but we will probably go out some other night just because.




Also no kidney updates.

Tuesday, February 11, 2014

Dave Update

So update, still no clear idea on if it will be the 6th or 7th of March.  Dave had his CT-Scan yesterday and they found a cyst on his right kidney and can not tell if it is benign or not.  Because of this he is going to have a MRI.  This will be February 23rd (right before we leave for Reno so I hope everything is okay and there is nothing else we need to do).  Hopefully after this we will have a clear idea of the exact date!

I'm getting excited and feel ready for this, I'll be sad if it gets delayed.

Thursday, February 6, 2014

mini, mini update.

Tuesday I had to go to my personal Dr. for one last thing (that should turn out fine which is why no one is worried about it halting the process) and my blood pressure was normal!  This is really exciting for me since I knew all along my blood pressure was normal but it kept being high for things! First step to beating my bad white coat syndrome!

Also looks like March 6th or March 7th depending of if they decide to remove Dave's kidneys or not (he has a CT scan on the 10th for them to evaluate the need to remove them or not).  Soon but soon is exciting.

Also decided to just relax and not think about the money I have all my tax stuff so hopefully if I get them done soon I'll get some money back to help with it all (I know I've payed plenty of Student Loan Interest to be eligible).


Unrelated I am running (in my underwear) for the Cupids Undie run on Febuary 15th to help end neurofibromatosis and raise money for the Children's Tumor Foundation.  If you would like to support me; I am going to link my page below, all money donated goes straight to the Children's Tumor Foundation!
To donate: http://hopecur.com/amberwoo
Thanks

Tuesday, February 4, 2014

The Update You have all been waiting for!

Assuming the report on my EKG comes back normal, and one additional blood test (that will be done with my pre-op blood work) due to the fact my Mom has Lupus is okay, there should be a surgery in March!

I'm super excited, but also super anxious at the same time.  Looking over my work time saved up I'll only have 3 full paid days off (I accrue time at a slow rate), this combined with the fact I have never had surgery before makes me pretty nervous.  I know it will all work out, but I am still worried.  I am thinking of starting up one of those sites like kick started that help people for other situations to possibly try and raise money for when I am out so I can be confident in paying everything on time those few weeks.  But I also hate asking for money so I am not committed to that idea yet.

Well I just have to relax some more (going to see Jen the end of this month will probably help with that) and figure everything out.  But overall EXCITEMENT!

Friday, January 31, 2014

Mini Update

The University of Maryland wants Dave to do the CT-angiogram.  I haven't heard anything about the results from my full day of testing yet, but I am going to take this as a good sign since they didn't ask him about it until after I had my appointment.

Going to try to not get my hopes up though, don't want to be disappointed in the future.

Monday, January 27, 2014

Other Peoples Concerns.

I just wanted to comment on other peoples concerns and discuss how some have made me feel.  I think that although this is a public blog it is also a place for me to write out my feelings and my concerns about this process.  This meaning there may be some statements made here that people might not like, but this blog is so people know the truth about the donation process and sugar coating how things can make you feel, and how relationships can be affected would not be beneficial to me understanding how I feel or to anyone else who may stumble across this blog in the future who may be looking into living kidney donation.

First off when it comes to other peoples concerns I am willing to listen to all of them, this is a big decision and I would appreciate the opinions of the people that care about me.  This being said I do wish people would think about what they are saying and how they are saying it before they talk to me.  This is mostly because Wednesday night my dad called me to tell me he did not like my decision to donate at all.  He was worried about the things I can not do with one kidney, and "other things".  I just said okay to most of it knowing he probably hadn't done the research I have.  The conversation ended with him basically not wishing me luck for my full day of testing.  (I guess this sort of means he was wishing me to be unhealthy without realizing it?)  The way he said everything also made me feel like he thought I was wrong, hadn't thought about it enough, and was just doing it for my boyfriend without thinking about what may or may not happen in the future.  It really hurt.  I was upset, stressed out, and anxious afterwards.  It did not make me any less sure about my decision it just made me sad that someone I cared about disapproved of what I was doing so much without taking the time to have a real conversation with me about it, or look into it on his own.  I respect his opinion and I know how my dad acts and I should have expected this.  He does not like medical things and was a wreck when my mom was in the hospital 2 years ago.  He also worries a lot, and so do I sometimes so his worrying to me does not help the situation.  He did call me on Saturday though to tell me he didn't mean to upset me and he will support me even if he doesn't like it.  This is a step to him truly accepting my choice and I appreciate that he is at least trying. I think my mom talked to him a bit after coming with me to my apt. and hearing me talk about how he approached the subject with me.  But we will just have to wait and see how the future unfolds with this...

My mom as I said also is concerned about it but she trusts me and understands that I did not just spontaneously make this decision.

I also think most of my friends support me, or at least it seems that way so that is good.

Also the other general argument against me donating is that Dave and I are not related/family.  This argument is kind of invalid because, as my friends and I discussed Saturday, friends are the family you choose.  Dave and I are very close and I don't expect that to change.  I think that if anything this will bring us closer because we will have all the time together after Dave is done with Dialysis and one less stress in our lives.

Okay so if you are reading this and have comments or concerns about it, I invite you to leave them in the comments so I can respond to them!  This way everyone is learning together about everything!  

Friday, January 24, 2014

I have 2 Kidneys!

Yesterday was my full day appointment at UMMC.  This day was full of stuff to do with very little waiting around.  At Dave's appointment I felt like we waited a lot more.  I was accompanied to the appointment by my mom, who went with me to support me, and to learn more about the surgery and health risks involved.

Our day started early, and I learned there were 2 other potential donors there as well.  We all listened to a talk given by my Donor Coordinator.  This talk explained who everyone we were meeting that day was, what hemodialysis was and how out recipients had other options beside a living donor, fact about the transplant list, the transplant procedure, surgery, risks, after surgery, and pretty much anything else you might think would have to do with donating a kidney.  They also went into detail about the single port laproscopic surgery they do for kidney removal.  I believe that the University of MD is one of three hospitals in the country that use this procedure.  It allows them to remove the kidney using a small incision in the belly button.  We saw a picture of the cut afterward, its super tiny.  My mom felt they didn't go over the risks enough but they did mention them.  The risks then mentioned were, pain, possible conversion toe Open Nephrectomy (I think they said this has never happened or only once?), infection, pneumonia, blood clots, bowel dysfunction, depression, bleeding, improper healing, hernia, future high blood pressure, future kidney failure.  The most common one is a hernia due to people lifting too much after surgery.  

After this presentation I was scheduled for a CT angiogram and a chest X-ray at a different building.  So my mom and I bundled up and walked down the street in the cold with one of the other donor families.  When we made it to the building we were seen right away even though I was early.  They had me fill out some forms then took me straight back for the X-ray.  I had never had any x-ray outside of a dental one before and I have to say they are not that exciting. As soon as that was done I was given a cup of water to drink and led to a waiting room where I was told I had to finish the water in 15min.  and that after the time was up someone would come get me for the CT scan. It was at this point I was sad I left my bag with my mom.  She had both my kindle and my 3ds so I drank my water alone with nothing to do.  When they called me back I layed down and they hooked up and IV to me for the contrast dye.  (The contrast dye they use to look at your kidneys can cause kidney damage so after I donate I should't have it but apparently before hand its okay)  The strange thing about the CT scan is when they inject the dye and saline solution into you it can make you fee like you are peeing.  It is the weirdest feeling ever! I'm not sure how it does that but it does.  The test didn't take long and I was quickly back in the waiting room where I took the banana out of my bag and ate it super fast (I was not allowed to eat before the CT scan).  

My next stop was the social worker, her office was back in the first building we were in, so we bundled back up and ended up there early.  The social worker was then free to talk to me earlier.  She talked to me about all sorts of things.  She wanted to make sure I wasn't being pressured into this, that I had support, that I wasn't being paid in anyway (Including with a ring hahaha definitely something she asked about), that I was emotional ready to do this.  We talked about my relationship with Dave, my family, some stuff in my past, and how I would feel in different situations.  Afterward she said she didn't see anything that she felt at that moment would prevent me from donating, so that is good.  I am sane enough to donate!

Then we had some time to kill before my physical (which was back in the same building as the CT scan) so we went and ate lunch at Panera.  Right before I went to check in for my physical after eating lunch I went to the bathroom, then as soon as I check in they pass me a cup to pee in.  It always works that way for me I swear.  So I drank some water and was called back to get by blood pressure read before peeing in the cup.  My blood pressure was high and my temperature was non existent(the thermometer wouldn't read).  I was stressed about the blood pressure, one of the biggest factors in determining if a person can be a donor is blood pressure and I was anxious and messed it up!  The I had and EKG and had to wait to talk to the doctor.  The doctor was nice, she went through my medical history as well as my family's health.  She then looked at my feet and hands and listened to me breath.  She then took my blood pressure manually, it was down by almost 30.  So I think it going down will work in my favor but she kept trying to get me to relax which was hard!  She also said my heart rate seemed a little fast with the EKG.  She is going to look over all my stuff before making her report on my availability to be a donor.  I wouldn't be surprised if there are some more tests ordered because of my weird blood pressure.

We left there to go back to the other building so I could meet with the surgeon.  He was running late and they wanted to take some more blood so I went and gave them one tube of blood, after which they handed me another cup to pee in!  This was less then an hour after the previously mentioned cup.  Luckily I managed to make it work (had been told to drink a lot to flush my kidneys of the CT contrast dye).   I wish they were better at coordinating when I had to do it though, it can be hard to pee on command after just going, lol.  

After that we were taken into a room where we met one of the UMMC transplant surgeons.  He seemed nice and used the word awesome a lot!  Mostly telling me I was awesome for doing this.  He mentioned how he has never had any issues performing the surgery.  He also mentioned he was on my side and would not perform the surgery if he felt it was unsafe for him to do so or if he thought it would effect my health.  My mom talked to him a bit and I realized that what she is most worried about is the unknown, which is something I can not help her with.  I can show her all the statistics about how rare complications are, and how healthy donors are, but she will still be worried about my future (I may explain more about this later, possibly in a different post tomorrow).  But after all the talking was done he showed me the pictures from my CT scan that morning.  They were really cool!  I do have 2 Kidneys so one is free to be donated.  They will probably take the left one because it is the easier one to remove and attach because the vein connecting it is longer and it is not blocked by my liver.  

Overall, I still feel good about donating.  This appointment hasn't really changed my thoughts on it and now all I can do is wait.  They said it would probably be 2 weeks for all the results and then they have a meeting and look at all my heath information and make up there mind about me being a donor.  I wish it was faster, having finished most of the testing (they could request more if they wanted to look more in depth about anything) I just want to know the results NOW!  

Tuesday, January 21, 2014

Schedule for Thursday!

Received my schedule for Thursdays appointment.  A lot of back and forth between two buildings (google maps says its a 2 min walk outside), and the temperature is supposed to be in the teens that day.  Burrrr I better dress warm.  Its going to be a long day with the first thing starting at 8am and the last thing scheduled for 2 pm.  Plus I can not eat 4 hours before the CT angiogram, which is scheduled for 9:45 am.  That means no breakfast before hand I'll have to bring a banana for after or something.  Also, I think I have this blood pressure thing under control.  Just taking it at home makes me nervous a bit because I don't want it to be abnormal.  But within 5min I can lower my blood pressure by just relaxing and trying to get rid of my nerves.  It worked here at home so hopefully I can remember not to stress out on Thursday and it will all be okay.

Welp, off to enjoy my afternoon off because of the snow. :)  (schedule listed below for those interested)


Friday, January 17, 2014

Needing to relax

I hate my obsessive mind.  I keep thinking about this appointment next week and wondering if I am going to pass.  The weird Highish Blood Pressure I have been having at Dr. appointments lately is what has me most concerned.  I don't want to be ruled out for something that might not even exist.  It makes me really anxious!  But I get anxious about lots of things, think I am going to try and find a drop in Yoga class this weekend to try and relax.   I think I just need to get my mind off of it because I think about it too much (My brain likes to over analyze things way too much).  I've decided this process is kind of like breaking up with someone.  In a break up you try not to think about the person because it makes you sad so you need distractions, and with the evaluation to be a kidney donor you think about how you might fail the tests so much you need distractions.  (Swing Dancing Anyone? haha) 

Wednesday, January 15, 2014

Too Much Research?

So I think I have developed an addiction to reading Kidney Blogs now (most of which I have linked off to the right).  I read at least 3 donor blogs in their entirety, 1 recipient blog, and 1 blog that deals with both sides of the story!  I am just fascinated reading how this decision has effected other peoples lives and what they went through.  I should probably stop though because reading them makes me anxious and excited at the same time.  They make me eager to get t his process really started.  I can't wait to finish the tests and find out if I can actually do this.  I think that even though I have read about the pain and how hard it is to get back to normal after giving up your kidney, reading everyone's story has really confirmed for me that this is what I want to do.

I have noticed a few things though between the donor and recipient blogs.  It seems there are more donor blogs then recipient ones.  I think this is because for donors this is an elective surgery and they are eager to get information.  When they don't find all of the information they want they start a blog so that the information they didn't find is now available for other potential donors.  This is different then recipients because normally for the recipient getting a transplant is their only option, because of this they accept it without doing as much research, prompting less blogging (at least this is the case for Dave and I, I don't think he has ever entered the words Kidney Transplant into google).  Or if they are researching there are a lot of websites that talk about the process for the recipient and it seems there are less for the donor which might also be why there is this unevenness in blogs.  I have also noticed the donors seem to feel worse of the surgery despite having the smaller incision.  After thinking about it this makes a lot of sense though assuming the donated kidney is accepted by the recipient with minimal complications.  The recipient is going from almost no kidney function to one full kidney functioning meaning they have more energy because their blood is being filtered easier then it was before the transplant.  For the donor they go from having 2 healthy kidneys to 1 kidney so they are going to be more tired.  Fun reading.

For the most part it seems the worst part of being the donor is wanting to go back to doing everything you are used to too soon.  I know that will probably be a problem for me, I like to be way too independent.  The fatigue is definitely probably the second worst because it seems you are tired all the time and for some people this may last 2 weeks and for others a lot longer so I don't know if there is a way to prepare because I don't know how it will effect me.

I also realized that if I give my kidney to Dave how will we ever do laundry?  Lifting a heavy laundry basket and carrying it down 2 flights of stairs is a definite no I'm assuming for both donor and recipient for awhile.  haha all the clothes move to the basement?