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?

Tuesday, January 14, 2014

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.

Monday, January 13, 2014


This weekend driving to the Hershey Bears game with my parents my mom asked me if I had thought about how I would feel if I donate my kidney and it rejects, and I have.   This has prompted me to write down the possible scenarios and how I feel about them.

  1. I'm Unable to Donate- This is a real possibility and probably my biggest anxiety right now.  I am the type of person who when they decide to do something they go at it with their all, and this is something where no matter how much I want to donate my body and health might not allow that.  I feel healthy but how do I know I even have 2 kidneys? So if I am unable to donate I know I will be sad and probably a bit upset but I know that it is something I do not have control over so I will just have to go with the flow and hope it all works out and post stuff all over the internet to get Dave a kidney
  2. I Donate, Kidney Works- This would be the ideal solution.  This would make me very happy!  knowing that I have the possibility of making Dave's life better (and maybe saving him from the fistula he loves to talk about) is a great thing.  It makes me smile just thinking about it.  The only negative here would be if we broke up afterwards, but I do not see that happening any time soon.  Also, if we did break up for some unforeseen reason I think that I would be okay with him having my kidney.  I believe things happen for a reason so if he receives my kidney and we break up then at least I was able to help someone in need.
  3. I Donate, Kidney Works for a Limited Time- By a limited time I mean a few years.  The average living donor kidney can last 20+ years.  This being the case if I give Dave my Kidney and in 7-8 years or less he needs a new one I would be sad then because my kidney will not have lasted as long as I would hope for him.  I feel that overall I would just once again realize there is nothing I could do to fix this and be happy he at least had those few years off of dialysis.  
  4. I Donate, Kidney Rejects Right Away- This would be horrible, not only would it be sad it didn't work, it would also suck that both Dave and I had to be cut into to figure that out.  In this scenario Dave is not only still on dialysis but he and I would have just both had a pointless surgery.  I think I would be angry for awhile, in the end though I feel that its something I can come to terms with and move on from.  
So the overall Idea I have with all the outcomes is what happens is going to happen and if I don't try for fear of it not working or having negative side effects to my health then I think I would be letting myself down.  I do not know what is going to happen but I do have a lot of facts and have read a lot of stories and I feel it is better for me to try then to not try at all knowing that there are a lot of successful living kidney donations that happen.  I have read more positive feedback then negative on how people feel after the donation, no matter what the outcome.  Plus I feel Dave and I both have a great support system that includes lots of family and friends to be there if things go good or bad.

EDIT: This conversation came up on the way to the bears game where I was picked out of 9,555 people to win a subway gift card, maybe luck is on our side?

Tuesday, January 7, 2014

Holy kidney Batman, that was Fast.

So I did all the blood work and urine testing yesterday and most of the results are already back!  Talk about FAST!  So far everything looks good.  :)  My kidneys are working fine, my cholesterol is fine.  The only 2 things were some white blood cells, I'm nor sure why they were there but they are not concerned about it and my blood glucose was high for having fasted for the blood work.  But after doing some googling it turns out levothyroxine (the medication I take for my Hypothyroid) can cause an increased glucose level, and I took that tablet before getting blood work done yesterday.

So next step is an all day appointment at UMMC.  This can be any Thursday but after talking to my mom (I want her to go with me so she can ask all the questions she wants) we are thinking the 16th.  This is very soon, everything is going so fast which is exciting but also nerve racking.   I want to give Dave my kidney I want everything to work out, and the sooner the better its just kind of hard to process everything so fast.   I think that I am going to make sure to write down any questions I come up with between now and the 16th so I remember to ask them.  I think keeping track of all my thoughts will make me less anxious about it all.

Okay, so that is all.  I will keep everyone updated and possibly write all my thoughts and questions here too, great place to keep track of them.

EDIT: Thursday is set up for Jan. 23rd.

Monday, January 6, 2014

Check and Check

I have officially completed my responsibility of the next step, which was the 24hour urine collection followed by blood work.

The 24 hour urine collection wasn't that fun.  More annoying that anything but it did give me an excuse to stay in and have Video Game day.  11 hours of Skyrim played this weekend because I didn't want to tote around my urine jug. ick.  But I finished that at  6am this morning and am glad to be done with it.

Having finished that this morning I left early for work in search of the labcorp that opened at 6:45am hoping to get there when it opened.  But I drove by it the first time without realizing it (I think all labcorps have bad signage) making me get there at 7am.  Walking in after calling work to mention I'd be late I found a packed waiting room, and this isn't even the part of the office that does all the employee drug screens.  So I had to wait 45min to be seen.  But then I gave my blood and was told I would have to give another urine sample.  I found this ironic because I had given them a whole container and been told not to eat or drink anything that morning because of the blood work.... I don't know where they expect it to come from???  But I gave it to them and left with the tech there wishing me good luck as I walked out the door.

They told me that UMMC should have the results in 3 days but to give them another day or two to look at it, so maybe by the end of this week I'll have all the results.  UMMC has been doing things fast so hopefully everything turns out okay and its on to the next step.    Progress.

Kidney in 2014, is the goal of this year.