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! 

A podcast on a Kidney Love story.

After Dave and I were married a friend sent me a link on facebook to The Modern Love Podcast.   The specific episode she sent me is titled "I see my Superhero" .  It is the story of a girl who needed a kidney transplant and was able to receive one from her boyfriend.  She wrote a short essay about it after she received the transplant and that essay is read and then they talk to the couple for a follow up.

 In the story the girl receives one transplant from her brother that rejects and then another from her boyfriend.  In the follow up you learn that the second kidney, the one from her boyfriend also rejects later on in life.  She was lucky enough to find a third person to donate a kidney to her.

With this all being said the podcast brought a lot of emotions out for me.  I relate to the boyfriend in the story, being ready to donate without ever being asked because the person you love needs you.  But the story talks about rejection and it makes the reality that that could happen to Dave and I so real.  You never know what might trigger a kidney to reject and that is a real fear I have.  It scares me to think about my kidney not lasting forever!  But it was also great to hear the positive attitudes of the couple in the story.  It is this positive out look I try and have for our own situation.  Where as I might be scared that one day Dave will need a new kidney I know that focusing on that is not the way to look at the situation.  Staying positive and keeping on doing everything we are doing, living life to the fullest is the way to combat any fears I or anyone else has in this kind of situation.

So if you are looking for an interesting listen check out this podcast.  Let me know what you think of it.

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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!

Awkward Yeti Joke!

This made me laugh.  That is all for now.  Hope everyone is having a great day!

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.

Undie Run!

So not super kidney related (except that people will be able to gawk at my awesome kidney tattoo) but Fiance/recipient and I will both be running in the Cupid's Undie Run on February 13th.  This is a mile fun run through the Baltimore, MD inner harbor!  Oh and the catch we will be in our underwear!  We are doing the crazy cold event to help raise money for the Children's tumor foundation and to help find a cure fore neurofirbomatosis(NF).  NF is a rare genetic distorter that causes tumors to grow on the nervous system at an uncontrollable rate.  It can cause deafness, blindness, paralysis,  physical deformities, learning disabilities and chronic pain!. There is no cure for NF!  Which is why we are trying out hardest to raise as much money as we can to help the children's tumor foundation continue studying this disorder.

I donated my kidney because of a different horrible genetic disorder, and now I am running in my underwear to help people with a different genetic disorder!  Because of this I am asking that if you read this blog and are able please consider donating to this amazing cause using my link or my recipients links below!

https://my.cupids.org/AmberWoo

https://my.cupids.org/DavidWilson

P.S. Last year we were batman villain themed with Dave being batman.  This year we are doing Pokemon themed!  So if you are interested in some underwear wearing pokemon donate then you will probably see pics posted here!

Fun Kidney Fact!

From the Donate Life Maryland Facebook today.  If you can't be a living donor this is why it is important to register as a Organ Donor!  

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!

All transplants are cool

I just came across this article that Donate Life Maryland Shared on facebook and I think it is really cool.  Its about an 8 year old who received hand transplants.  I think this is one of the coolest things.  Transplants in general have come so far with medical advancements and I think its something we should all support.

8 Year old gets new hands!

Two years since we discovered ESRD

According to Time Hop and Facebooks new feature, on this day, I was reminded that two years ago yesterday is when we first found out Dave needed a kidney transplant.  It is crazy to look back at all that has happened since then.  I am grateful that in those 2 years we have been able to get back to a Dialysis free life and move on the best we can.  Hopefully we can keep it up and remain healthy for years to come.

I'm not sure what else to add to this post, I just thought it was something that should be mentioned.

Oh and I did get a replacement kidney tattoo the other day.  Better pictures to come once it is 100% healed and I'm showing it off at the beach celebrating our kidneyaversery in a month (celebrating a month early haha)

Also, if you have any questions, or if there is anything you want to know about, please ask!  I'm not sure what to write about now that its all pretty much over, so if you have ideas let me know and I will make them happen!

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!

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!

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 

#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

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.

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!

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....

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.