Cool Transplant Information

Just have been reading a ton of fantastic transplant information lately and wanted to stop by and post it.  Also, wanted to let the world know Dave and I are both still doing great with excellent Kidney health.

First The University Of Maryland Medical Center successfully transplanted the first organ delivered by Drone! I feel like that is very amazing.  They are always using new technology to make transplants better and faster.  I am so happy to have been able to donate through them.

Second Maryland's Living Donor Protection Act Passed.

Thats all for now.  I'll try and remember to update again in a week on our 5 year Transplantaversery!!!!

3 years!

Its time for the annual update!  Today marks 3 years since I gave Dave my left Kidney and I am happy to report we are both healthy as can be!

I wish I had something more interesting to say but I think that says it all.  Three years later and we are both doing great it can not really get any better then that!

So on another note Last Week Tonight did a Dialysis episode and I think it was really good.  So I am going to link it here and if you feel like it feel free to watch.  Its a DaVita one of the biggest dialysis companies around! https://www.youtube.com/watch?v=yw_nqzVfxFQ&feature=share

And just for funsies here is an updated picture of us enjoying the vacation we just came back from! Something we would not have been able to do if Dave was still on Dialysis!

2 Year Follow up with UMMC

So I know that our 2 year Kidneyaversery was a while ago, but about a month ago is when I finally had time to go do the lab work.  I took a day off and went down to the University of MD for my last follow up there.  After 2 years you no longer have any follow ups with them and are supposed to monitor your own kidney function with the help of you primary care doctor.  Everyone was super helpful and I was in and out quickly, which gave me plenty of time to go get copies of our marriage certificate (but that isn't important here).

After a few days the coordinator e-mailed me to say that my protein/creatinine levels were elevated and that she would like me to re-do the test because she things the results are wrong.  This immediately made me anxious because what if the test wasn't wrong and I was actually having issues with my solo kidney.  I didn't post here right away about this because I didn't want anyone else worrying about it till I knew what was up.  So I silently worried to myself while googling everything I could.  This is always a bad idea.

As soon as I could I went to labcorp and re-did the test.  Within a few days the coordinator e-mailed me again to say everything was normal!  This was great news and good to know.  So my one kidney is still doing its job!

Dave, also had an apt. recently where the Dr. said he was doing well.  He also mentioned how great it was Dave was on so few medications!   This is because transplant patients are normally on medications to control the disorders that caused their kidneys to fail in the first place, and Dave doesn't have to worry about that because he is healthy!

Well, I think that is all for now.  As always if you want to know anything else about my experience feel free to ask! 

2nd Kidneyaversery!

Yesterday was our 2nd Kidneyiversery meaning it has been 2 years since I donated my kidney to Dave!  Wow, time has flown by and it feels like we have done so much in these past 2 years that the days of dialysis are so much farther in the past then they really are.

Both Dave and I are doing well!  At least as far as I can tell.  His most recent blood work looked amazing and I feel fine so I guess that is good.  The only weirdness from the donation that I still have is that the muscles on the left side of my back where the kidney used to be become more sore then the right.  I feel this is something I wouldn't even notice if I wasn't spending most of my free time taking circus classes (aerial silks, lyra, and German wheel).  These classes require a ton of strength in all muscles which is why I think I feel the pain there more then a normal person would.  I'm sure with more working out it will stop too.

Within these last two years Dave and I have done so many things that might not have been possible had Dave not been able to receive my Kidney.  We went on a cruise, were married (only 3 weeks ago!), went to a ton of concerts and events, hung out with tons of friends, went on multiple weekend trips to places like the beach, dragon*con, Hershey, and wherever else we wanted, and got a dog.  Our motto has been "No Rest" because we know first hand that you never know what could happen in life so you might as well do as much as you can while you are able.  We hope to continue doing tons of things and that my kidney keeps working well inside Dave!

2 years down, hopefully many more to go!

Almost Married

With only 9 days left till we are married I was thinking on all that has brought Dave and I together.  I feel that one of the things that makes us a strong couple is all that we went through with Dave becoming sick, dialysis, and ultimately the kidney transplant.  I feel being able to share in each others struggles is a good ability to have when one enters into marriage.  I also realized I did not share our adorable Kidney Engagement photos with you guys and I think people interested in donation, kidneys or transplants would enjoy them.  So look below for some of those.

We used a plush heart and kidney as props.

He held the heart, and I held the kidney!

This one was used for the save the dates with the quote:
"She gave him a kidney and now he will give her his heart."
We are adorable, we know.

And some other random photos just because!

Thanks for reading.  If you have any questions about donation feel free to ask.  I feel I have less to talk about now that we are almost 2 years post donation, but I am always open to answering questions or taking requests on things to write about.

Update Update Update

It has been so long since the transplant it seems.  At the one year mark University of Maryland checked my levels and everything seemed to be going well, so as far as we know my solo kidney is still going strong!

The most challenging thing about donating is the need to drink more water!  Sometimes I forget and I do feel the effects of not drinking water more then I used to.  Luckily that is a relatively easy thing to fix by just drinking more water.

Dave's kidney is also working very well (better then the one I have).

Updated tattoo pic.

And Bonus: Dave and I celebrating our kidneyaversery on a cruise ship (I probably should have shared this earlier since this was taken last May!)

That is all for now.  As always feel free to ask me anything!

Kidney Love Story

So updates!
1. Six month blood work came back, things look good.  My Creatinine is 1.2 and they expect it to keep going down as time goes on.  Apparently Dave's is around the same, so we have equally functioning kidneys.

2. Dave and I are now engaged.  He asked me to marry him on Christmas and I said yes, have to keep that kidney I gave away close.  HAHA!  We are hoping to get married in May 2016 near the date of our transplant since that date means a lot to us.

 That's all for now so yay for all the good news!

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.

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!

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!

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 right 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!

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

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.

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!

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. 

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

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!

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?

Other Blogs

This isn't much of a real post, but I have been spending a lot of time reading other blogs written by kidney donors, because of this I have decided to link them off to the right so that way if anyone is interested they can read them too.  This way if my mom reads this she can see what is upcoming for me maybe (as well as anyone else that wants to know) and if any potential donors find this blog they can find more like it easily.