Home!

Home home home!

Matthew and I are home together and Sabrina and the Baby Kitty are here too.  The whole family is sleeping right now around me.  I am so glad to finally be here.

I feel great.  I really do.  I mean physically too.  My red blood cell count had dropped quite a bit during the surgery and it has been creeping up slowly since.  But I think I am close to being not anemic at all soon.  That would be the first time my hemoglobin is normal without the use of drugs in about four years.  And the kidney?  It's kicking ass.  It is actually filtering better than it was when it was in Matthew.  How is that possible?  No idea.  Apollo is pulling more than his weight in there.

I can sneeze, I can cough, I can even do a sit up (even though I shouldn't).  I am five hours from our three week mark.  Even my scar is pretty much healed.  And I have progressed from looking five months pregnant to looking like I drink beer a lot.  The swelling is definitely going down.

Matthew is still a little stiff.  He hurts sometimes and is trying so hard to go back to work.  I actually feel like I could teach his classes easier than he could at this point.  Strange.  It will really take the full six weeks for him to be 100 percent, and I only wish I could make it easier on him.

Both sets of parents are here with us in Oklahoma.  Matthew's parents and my mom are still cooking, cleaning, driving, and lifting things for us.  But I feel pretty self sufficient.  And that is amazing.  I mean, it is 3:00 AM and I can't sleep because I have so much energy.  I am on the "new kidney" high. 

Everything tastes better, smells stronger, colors look brighter, tears come easier, and I have totally moved on from termites and impounded cars.  There is a huge stack of insurance bills I have to handle, mostly argue for coverage.  Not even a speck of worry.  One of them says I owe 76,000 dollars!  HAHAHAA!  I mean, normally that bill would make me sick.  But I know I won't really owe that.  It's just Medicare and Blue Cross playing hot potato with me, that's all.  (spoiler: Blue Cross is going to lose that one.  Sorry 'bout it.)

I even walked Sabrina tonight.  That. Is. Huge.  And the Thunder won, so...what problems?

Facing Fears

So about the stint removal: 

And this is why I love the University of Iowa so much:

They scheduled me with Urology.  I was groggy when we got there because I had taken two muscle relaxers the night before along with two Xanax to get to sleep.  I did this on purpose because I knew they would linger and help calm me for the morning.  We get into the room with the nurse and she explains to me in full detail what is about to happen.  Knowing details really helps me.  I don't like surprises.  She even shows me the size of the tube inside me so I know how big it is.  She told me they would apply lidocane (sp?) to my, um, opening to numb it a little.  Then they go in with a camera scope with a grabby contraption on the end to pull the tube out.  It just takes about 15 to 30 seconds to find the tube and once they do it is literally seconds to pull it out.

Awesome.  Now that sounded way easier than I was imagining.  But I still was interested in calming my anxiety a bit.  The doctor, who was a woman, came in to discuss the possibilities of sedation.  She never treated me like a wus or made me feel stupid.  She simply told me my three options: 1) I take a valium and wait until it kicks in to calm me.  2) They put an IV in my arm and give me a dose of a drug that makes you super high (tempting). 3) They wait until tomorrow and get an anesthesiologist to put me completely under for the procedure.

I didn't want to stay another day, and after they explained it, it didn't really sound as bad as my first impression was.  Remember it was originally explained by a surgeon.  Now I love surgeons, but they are a little desensitized to the "willies".  As they Should be!  So I picked option 1.  Give me a valium.

My only experience with valium was one time before a kidney biopsy I was given one literally within three minutes before they stuck the needle into my abdomen.  It hurt like hell, I wasn't calm, and I hated every one of them while I was on that table.  It takes a little while to kick in, Derps! 

I took the valium along with two painkillers and a Xanax.  Now, you may call this self medicating.  But as I mentioned in earlier posts, pain medicine doesn't seem to work on me anymore.  Neither does Xanax alone.  I have a huge tolerance.  I would wager that I could pill most of you under the table, even at 115 pounds (ok, 123 pounds post transplant).  Then they started getting me into the room for the procedure.  They said it would take some time to set up and that would allow the valium to take effect.  Swell.

 
My mom was able to come in with me, which helped.  The room was a huge operating table with stirrups.  There were two female nurses in there prepping me.  They were really nice.  First they gave me warm blankets so my upper body wasn't cold.  Yesssss, I love the warm blankets.  They put the numbing goo on me first.  This felt nothing but ick.  Cold finger in and around your pee-hole.  Very uncomfortable, but not painful.  Then they wiped me with iodine (actually I can't remember if they did this first, maybe the pills did kick in), and then they rinsed me with cold water.  Surprise!  Cold water on your Hoo Hoo!  Ok..

So then the doctor comes in and she shows me the scope.  It is about the width of a pencil, maybe slightly larger, with a light on the end that is the camera.  Those screens next to me in the above picture are actually about to show me the inside of my bladder, they tell me.  Ok.  So I brace myself.  Except when you brace yourself you clench the hole they need to get into.  The secret?  Wiggle your toes.  Apparently your can't wiggle your toes and clench your hole at the same time.  As a movement teacher, this fascinated me, but as a patient I was distracted.  I swore to look back on this later.

Then they put the scope in and Mom and I looked at the screen.  It was fuzzy, but I saw the tube pretty quickly.  I felt them pull it out and they said, "All done!  Want to see it?"  I said "YES!!"  and the nurse held it up.  She then said, "Do you want to take it with you?" 
 
What do you think I said?

 

So this is the stint.  It is really bendy.  The curls were each in my bladder and my kidney so that it is easier to grab to remove.  I have yet another piece of my gore to add to my collection.

 

So that was it.  Was I high?  Thanks to the extra feel-goods I took, yes a little.  I don't think the valium would have calmed me enough personally.  I walked through the hospital and ate breakfast right after.  I know my body.  But the women in urology were understanding, patient, and really cool about everything.  I felt like they listened to me without judgment and offered options for me to choose.  I was in control of how this was going to go.  I really appreciated that.

 

I was not left traumatized and I can honestly say being awake and aware probably helped me face a fear rather than catering to it.  I love and hate facing fears.  It is the reason I request IV Benadryl whenever I can.  I need to face that overdose fear as often as I get the opportunity or else the fear and anger will take over my life.  Fear is personal, and moving past it can only help.  I don't expect people to understand my fears, but I am no longer afraid to set boundaries when I need to set them. 

 

In all honesty, this procedure scared me more than the transplant.  It won't be the last time I get scared like that I know.  I have a long life of medical torture ahead of me.  Maybe not in the near future, but eventually.  For now I will enjoy Matthew's ultra filtering kidney and hope that I can retain this appreciation for the sweeter things as long as I can.      

 

 

Not stolen, but..

My car was impounded.  It actually makes me more angry than if it were stolen.  I know this has nothing to do with medical stuff or pin up stuff, but I still have to vent.

I have been parking my car on the streets of Oklahoma City for the past year with no problem because of my handicapped tag.  I don't have to pay for metered spots because handicapped people park for free.  But while I was being cut open in Iowa, they decided to enforce a rule that stated that you can park for free, but only for two hours at a time.  This means that I would have to move my car every two hours to park on the street.  No my apartment doesn't offer parking.  

Again, I had kidney failure.  Getting to my car every two hours is not an option, and the nearest parking garage is four blocks away.  The whole point of having a handicapped tag is that I need it to park close to my home.  Four blocks is not possible on some days for me.  I need easy access to my home.  

So we paid 420 dollars to get my car out of the impound and had four parking tickets to pay as well.   I am not sure who to talk to about this.  There must be someone who can help me.  

In other news, Matthew and I are selling our house in Norman.  We love living in the city and upkeep on the house has been difficult with all the health stuff.  The good news is we have someone already interested after being on the market for two weeks.  The bad news is we discovered we have termites in our garage and we have to treat those too.  The estimate was $800.  I just feel like this week has started out pretty poorly. 

I would say it can only go up from here, but tomorrow I am having a doctor yank a tube out of my urethra so.....

I try to never say that things couldn't be worse.  Things can ALWAYS be worse.  If there is anything anyone has taken from this blog at all, I would wish it to be that.  No matter how sucky your week has been, or what trauma you might have suffered big or small, it really and truly could be so much worse.  And you never know, someone really close to you who looks strong and put together could be falling apart on the inside.  I wear a mask all the time.  I call it my "What disease?" mask.  It is very important to me to wear it.  No one wants to hang around a downer.  And if I dwell on all the things wrong with me it would only make me feel worse. 

So tomorrow I am having a brief procedure that I am petrified to experience.  I don't know exactly how it will go, but I know i will survive, and I know I will get to see Matthew soon after.  And my car is safe.  And the termites can be treated.  And I am going to be healthy again.  That sounds pretty damned lucky to me.  Forget lucky, it's a friggin' miracle compared to my life six months ago.  

So all in all, I think I am a pretty lucky girl. 

Really?! From a handicapped person?!

So Matthew made it home tonight to Oklahoma with his parents.  When he got there, he wanted to check and see where my car was so he bleeped my keychain and didn't hear a sound.  He looked up and down the street and didn't see it anywhere. 

My car was missing.

So he called the police and they checked the impounds and it was nowhere to be seen.  Someone stole my car.  Someone stole my car with a handicapped tag.  Someone stole my car with a handicapped tag WHILE I was having a kidney transplant.  

I mean, this really is the best time for this to happen to me I guess.  I mean if it had happened three months ago, it would have really gotten to me I think, what with all the stress of not knowing if a transplant was happening.  And if it happened in six months when I felt healthy I would have really been angry because it would be an isolated incident that would really suck since everything else was going so well in my life.  Now, I feel like, "OK, but at least I have a kidney."  I mean, talk about putting things in perspective.  I feel invincible right now. 

Steal my car??  Fine!  I just had a kidney tranplant, Sucka!  Have fun with all the extra phosphorus binders on the floor and the seats of my super posh '08 Honda Fit that were left behind.  I am sure you will enjoy them when you think you might be taking something fun like painkillers.  Joke's on you.  Those pills are terrible for healthy people.  

Asshat.

Yes, there are four!

The one thing I have noticed that people have asked me the most is what happened to my other kidneys.  Did they take them out?  The answer is NO.  I still have all the other kidneys.

So that means I have my own two native kidneys (I believe I called them Mitsy and Ditsy), my Mom's kidney (she named her Aurelia), and now Matthew's kidney named Apollo.  Mom's kidney is in my pelvis on the right and Matthew's kidney is a little higher in my belly on the left.  They are pretty close to the surface of my belly so they are much more exposed than native kidneys are.  

The surgeons don't like to take kidneys out unless they cause problems like cancer or tumors or some kind of infection that can spread to other organs.  Dead kidneys shrink and shrivel up like raisins.  I have been told that they can put as many as three transplanted kidneys in a torso.  I kinda hope this doesn't happen for me.  I can do without the larger waistline.  If that makes me vain then so be it.  Who wants to look perpetually pregnant?  Not me!

In other news, Matthew and his parents left Chicago today for Oklahoma.  We had a tearful goodbye.  It will only be a few days but we haven't been apart for quite some time.  Mom and I are leaving Monday to go back to Iowa.  So this is a bit of an anxious weekend for me. I just want it all to be over.  Three more days and I can breathe a little easier.

Recovery at Nonna's

So it has been a little while since I posted, mostly because there isn't much to say.  Tomorrow will be two weeks since the transplant and we are doing really well.  Matthew still takes pain pills, but not nearly as many as before.  Three days ago I started sleeping on my stomach at night, which hasn't been that painful.  I look incredibly pregnant, but hopefully that will change as time goes on. 

 

So as you can see, my belly is distended quite a bit.  It is worst when I eat.  Mostly it is the extra fluid and swollen tissue in my belly.  Yes, it is uncomfortable but what can I do?  Hopefully it will go down soon.  Small price to pay as far as I am concerned.  I think I look kinda cute pregnant.  And let's face it, this is the most pregnant I will ever look ever.  Ever.

 

We are a little stir crazy in my grandmother's house, but it has been a good visit.  We really appreciate both of our parents being here to support.  Matthew's mother has gotten really sick for about two weeks now, so we have had to try to stay away from her unfortunately. 

 

My numbers have come back from blood tests I have been getting, and they look really good.  My creatinine has leveled out at about 1.1 and I am so happy with that.  I am still a little anemic, but it is getting better.  I can stand up straight now, and Matthew and I are moving a little faster. 

 

On Saturday, Matthew will be leaving with his parents to drive back to Oklahoma.  He wants to teach on Monday.  He misses his students.  I don't blame him.  Mom and I are leaving for Iowa on Tuesday.  The dreaded procedure is scheduled for Wednesday morning bright and early.  The word on the sedatives?  The transplant team has approved the use of them, but the urology team has to approve it now.  Keep your fingers crossed.

 

It has been amazing getting to eat whatever the hell I feel like eating.  I drink milk, eat cheese, drink TONS of water and don't limit myself at all!  Its awesome!  I know I will gain some weight, but whatever.  I have time to equalize after I get back home.  Nonna's food is just too good to turn down.

We have also had an amazing amount of visitors while we have been here.   We even had to turn some people away because we get too tired sometimes.  But it has been awesome seeing everyone. 

 

We are looking forward to going home and getting back to normal, and we miss our pets a LOT.  But we are thankful things are going so well and can't wait to see our Oklahoma friends. 

 

The Stint

I have been avoiding writing about this because it causes such anxiety for me that I would rather not talk about it.  Anxiety is a funny thing.  What gives a person anxiety doesn't have to make sense at all to others.  But it could be connected to something in your past that somehow got associated with a traumatic event in your head.  This is something that I wish doctors and hospitals would be more careful to notice.

On the 26th, I have a post transplant procedure planned that couldn't stress me out more.  The line that leads from my kidney to my bladder has a tube in it that was placed during the surgery.  It is called a stint.  It is holding up the tube so that it stays open while it is healing.  I had one for my last transplant as well.  After the transplant, this stint is removed sometime in the coming weeks.  During my last transplant, it was removed on day 8 and I was released that day.  I was put under and during that surgery, all my other drains and tubes were removed at the same time.  I requested Virginia Transplant to remove the drains while I was under at that time.  I know they thought me a big baby, but I had those drains removed when I had my breast reduction and it really hurts!   Why feel pain when it is so easy to do it while I am under?

Well, I am under the philosophy that if I am under anesthesia, I don't really care what has to be done to me.  I am not there technically and I won't have emotional trauma if I don't know what is happening. 

Let me specify what has to be done to remove this stint.  They have to remove it through your bladder.  Yes, through your pee-hole.  Just the thought of that is enough to send me into a mild panic attack.  But again, if I am under I am not there to experience the trauma, right?

Well I was informed before the transplant that I will be awake for this procedure.  Not only awake, but completely not under the influence of any sedatives or locals or anything.  Ok, the panic sets in.  I expressed my fears to my surgeon and he said, "It's funny, I have to consul people more about the stint removal than I do the transplant."  Well, maybe that should tell you something!  Have you ever had a stint removed from your body through your pee-hole?  I bet you wouldn't like it much either. 

So, like I do I have taken the opportunity to tell as many people as possible about my anxiety.  The six months of therapy I had to undergo after some of my past hospital visits have taught me that there are some things I can breathe through, but other things are just going to trigger a response.  This is one of them.  I don't care if I sounds silly.  Yes, you may even be thinking, "well she's been through so much at this point, how could this be any worse?"  And you are probably right.  But I want you to put yourself in my shoes.  It isn't that much work to sedate a person.  It is one, maybe two injections of some kind of drug that makes you not remember what just happened to you.  They do it for colonoscopies and endoscopies.  This seems just as intrusive as those to me.  It shouldn't be the most absurd thing to ask for.

I had a kidney biopsy once and was given nothing because it affected creatinine.  I was handed a valium on the operating table two minutes before they did it.  Not helpful.  It was one of the most painful things I have ever experienced.  I don't cry for pain very often.  But this was awful.  And it took an hour of tears streaming down my face and screaming for a nurse to give me anything for the pain.  I don't trust doctors when they say it doesn't hurt much.  They don't know, they haven't been on the other end.  And PAIN IS RELATIVE.  Just like anxiety. 

This is a soapbox of mine, yes.  And as you can see I am up at five in the morning typing about it losing sleep already.  All I can do is mention  it to as many people as I can at Iowa until they are sick of hearing it from me.  I don't care, when it comes to panic attacks so easily avoided, I will fight until I am forced down on that table with my legs in stirrups while a team of surgeons are looking at my genitals with whatever they insert into my urethra to pull that thing out. 

Insert willies here.

My transplant

Today we had our last appointments and said goodbye to some of the staff and doctors.  Matthew spent the morning trying not to throw up, and I had minor surgery on my chest.  They took my chest port out and that was cool.  Last time I had it out it was a crude process in an exam room at my nephrologist's office.  This was a production.  I was in actual surgery.  Don't get me wrong, I was nervous as I tend to be in awake surgeries, but I like knowing what they do.  And they let me keep my tube which was awesome.

This was a great transplant.  Not only did I feel I was in good hands at University of Iowa, I felt safe.  I haven't felt safe in a hospital in years.  I hate confessing that.  As you all may have read earlier, I had some anxiety issues from being at my local hospital and that was totally unnecessary.  Just about every visit there had resulted in a mistake that costed me a lot.  Don't get me wrong, I have some great doctors in Oklahoma.  But the hospital experience makes all the difference.

I had forgotten what a good hospital can do for your soul.  I trusted these doctors and staff members.  They were fantastic.  Being in a hospital isn't easy.  You are at the whim of a system that isn't always the most efficient for you.  You wait around a lot and get frustrated with things out your control while you are very uncomfortable and sometimes in agony.  Many people can't handle waiting around when they are perfectly healthy.  But when you know everyone around you is doing their best, it helps.  And it helps you get better faster.  Hell!  I can't remember the last time I was admitted for only FIVE DAYS!  What a breeze!

So I am grateful to the University of Iowa for their professionalism and skill.  They are a great team and I would choose them again if I had a chance.  The made us feel welcome, appreciated, and even special.  And my kidney is kicking ass.  My creatinine is 0.9!  Unbelievable!  I couldn't have asked for a better outcome at this point.

This has been a long journey for Matthew and I.  I have fought and fought for this for a long time.  I have suffered from this disease for more than 14 years now.  And I knew I needed a transplant three years ago.  I know it would have taken even longer if I hadn't gone to Iowa to learn everything about aHUS.  Now I feel like aHUS is just a thing about me that is under control.  As long as I have Soliris, I will be ok.  More than ok!  I will be amazing!  And Matthew and I can live a healthy life full of whatever we want.

Now if only I could poop...

A look back: Transplant Day 5

This was a big day for me.

Matthew came over and ate with me.  Then he went back to his room to get ready for his discharge.  I had a lot to accomplish.  I was supposed to get my catheter removed and pee on my own.  They do three bladder scans to make sure you are emptying your bladder before you get to leave.  I also had to get an ultrasound of my blood clot and get my chest tube removed.  These are all big time consuming things.

So the first thing was to get the damn tube out of my bladder.  I hate removing those things.  They scrape you on the way out and peeing hurts a little for a few days.  After two doctor's visit and a bit of whining, they ok'd taking it out.  My nurse came in and did the honors.  Then I had to drink a lot to get the urge.  About an hour later, I tried to pee.  I remember the first pee from my first transplant.  It is a little scary.  You are afraid it is going to hurt and it kinda does.  But I squatted and pee came out freely. It burned a little at the end, and...ok, this is a little gross, but air comes out.  I think it has been trapped up there from the surgery and from the catheter?  But you, well, pass gas with your pee and I have to say it is the most foreign feeling.  Super strange.  But I have come to love it in a strange way.  My first time peeing on my own with someone else's kidney.  It's a huge moment.

Then I was wheeled down to ultrasound.  The tech poked around for a while and said he would show me the clot when he found it.  Then he said, "I actually can't see it."  I gasped. What??  It is possible?  And he grabbed a different camera to be sure.  "Yeah, it's gone.  No more clot up here."  I almost cried.   I was so relieved about this.  I have hated that clot since I got it in July.  The blood thinners are a hassle and a nuisance.  And now I don't have to take my infusaport out!  I was so happy.

But when I got back to my room, they told me they couldn't take the tube out that day.  I might have to wait three weeks.   I was fine with that.  I figured they wouldn't remove it until they were totally sure I was ok.  But then another doctor came in and said we could remove it the next day at 11:00 AM while Matthew had his post op appointments.  Yay!

We still had to wait for me to pee three times and bladder scan each time.  Finally I did that and passed the tests.  Then they counseled me on physical therapy, medications, and financial stuff before they let me go.  We ended up leaving at 4.

That night we were pretty tired.  We ate Chinese food and passed out.  Only to wake up early and go right back to the hospital for more!

A look back: Transplant Day 4

We tried to eat breakfast together but it didn't work out exactly that day.  The doctors told me my creatinine was 1.2!  And that is an awesome number!  I couldn't believe it got that low so fast!

We were still really bloated and uncomfortable.  And on day 4 our clicky pain killers were taken away. I was fine with this because it meant that I might relieve some of the bloated constipation issues that come with every surgery.  It's a side effect  that gets better when you can get off the drugs.  And to me, the pain isn't as bad as the constipation.  I hate being bloated.  A lot.  But of course by now I have discovered that if you just pull the compression socks up a little, you can turn them into thigh highs.  This was a good discovery for me.

Matthew and I took our walks together and sat for longer in our rooms.  Sitting up was getting easier for both of us.  Matthew was starting to function better.  His creatinine had crept up to 1.5 :(  My mom was staying in my room every night on a pull out couch.  It was great for us because she prefers to be there the whole time, and she is so helpful to me.  I was so glad to have her there.

Matthew came over to see me at one point and we got in bed together.  I just wanted him closer.  We are experienced at sharing a hospital bed, just never when we were both sick.   He had developed a fever so the doctors wanted to keep him an extra day.

I didn't mind.

A look back: Transplant Day 3

So on Saturday, things started getting painful.  My numbers were fantastic.  My creatinine was down to 3.2 which is amazing for day 3!  I was allowed to eat food, so I ordered breakfast and Matthew came over to eat with me.  The food was decent.  Much much better than OU I have to say.

I didn't eat a lot, but after I put food in my stomach it ballooned out to looking 5 months pregnant.  Bloated and uncomfortable, things were pretty miserable.  They keep asking you about poop too.  It's really important.  Everyone wants to know about your poop.  Most of the pills you take are laxatives, stool softeners and suppositories.  There is no privacy in the hospital.  You just have to be OK with that.  I mean, there is a jug of urine attached to a tube attached to your bladder that people move around all the time.

Oh yeah!  Let me tell you about the catheter.  I hate it.  It is great on day 1 when you can't get up, but by day 3 it is agony.  The tube automatically takes pee out of your bladder, which is nice, but then it backs up in the tube and if someone moves it above your bladder the urine glubs back into you!  You can feel the bubbles in your bladder.  It sucks.  It just sucks.  And it gives me the willies.

So we were really uncomfortable on day 3.  But our spirits were high and we were appreciating the time we had together.

A look back: Transplant Day 2

So day two was pretty much a blur.  I seriously tried to get to my blog, but I just kept falling asleep with the computer in my lap.

I woke up and the doctors came to tell me my numbers.  My creatinine was 11.6 before the transplant and it was 6.8 on day 2.  My phosphorus was LOW!  I wasn't allowed to eat at all on day 1, and on day 2 I was allowed nothing but clear liquids.  The doctors were thrilled with Matthew's kidney.  It was making so much urine, I needed more saline just to keep up with it.  They had given Matthew and I clicky pain killers that we can click every 8 minutes.  It is nice to be in charge of that, but when you fall asleep, you wake up in pain because you haven't been clicking.

And, I am just going to say this:  They just don't give you painkillers like they used to.  I remember ten years ago being totally high so much in the hospital, and it was so awesome.  It was the ONLY bonus to being there!  Maybe I just have such a built up tolerance I don't feel anything anymore.  It is not easy to get even light sedatives these days, and its a damn shame if you ask me.  The closest buzz I got was just from the IV Benadryl, and that is pretty weak.

Soon after they left, Matthew had come over to see me.  he was a little groggy, but I think he felt like it was his turn to make the journey over.  He now doesn't remember these pictures.

                                                                                    poor guy

Here is the difficult thing:  You have been through all this crappy hospital stuff for years, you get used to the pain and the drugs and the discomfort and the vulnerability.  But then you take an organ from someone who has never experienced anything like this and it knocks them on their butt!  And all you can do is watch and say, "I'm so sorry."  It is really hard to describe the emotions that come.

We spent the day visiting each other and taking walks.  Someone snapped this picture of us walking.  We would hold hands and talk.  It felt so nice to be able to be together experiencing similar pain for the first time in our lives.  There is something about sharing pain, and there is even more when it is CHOOSING to share pain that results in less pain for both of you.  I can't even try to describe the experience.  What an amazing week we had.  

A look back: Transplant Day 1

So I am going back in time to write these few posts.  I think it is important to write the details down while I can remember them so well.  While I was in the hospital, every time I would try to type I would fall asleep.  The drugs were pretty strong.  But luckily I remember most of what happened.

On the morning of the transplant, Matthew and I, my cousin Kellie, and our parents arrived at the hospital at 5:15 AM with a bunch of luggage and a whole lot of nerves.  We waited together for about five minutes before we were called back into separate rooms to change into our gowns.  They gave us white compression socks and we waited to get called into surgery.  While we waited, we were visited by surgeons and doctors checking in with us.  The anesthesiologist came to see me and put an IV in my hand.  It was the most painless hand IV I have ever had. Those things usually take three tries on me.

After my IV I went to say goodbye to Matthew, who was about to be rolled out.  We kissed, hugged for a long time, and said "I love you".  I said the only thing I could think to say as my last words.  "Thank you."  Then they rolled him out on his bed and off he went into surgery.  It was quite overwhelming.



About an hour later, the anesthesiologist came in and told me it was time too go to the operating room.  I said goodbye to the Kellie and our parents and they rolled me out.  I was really nervous, but excited too.  They rolled me past Matthew's room and I found myself wanting to look in so badly.  He was opened up on a table right at that moment, poor guy.  I find in these pre-surgery moments my mind tries really hard to remember everything I possibly can before going under.  Look at all those tools over there.  Are they going to use all of them?  I wonder how Matthew is doing.  Which one of these people are going to put the catheter in me?

They transferred me to the table and I was pretty nervous.  They had me position myself where I needed to be, and before I knew it the gas mask was put on my face.  Literally moments later I was out.  I was a little disappointed that no one told me I was about to go out.  I do love that last moment.  But that's ok.

I woke up in recovery hearing women saying things like, "There's too much urine!  We need to give her saline." and "This kidney just won't quit peeing."  I laughed to myself and felt really relieved.  Sometimes the kidney takes a few hours or even days to start working.  But Matthew's worked right away and started cleaning me out instantly.  I was left in recovery longer than anyone expected I guess. I don't know because I kept dosing in and out.  But eventually they rolled me up to my room and my mother was the first one to greet me there.  The rest of that night was pretty groggy.

I expected to see Matthew come into my room to visit me, but I asked about him and my mom said that he wasn't doing too well, and that he was having difficulty getting up.  I knew they wanted him to get up on day one.  It was more important for him to get up early than me.  So when I felt I had a burst of energy, I thought I would visit him instead.  So with some help, I stood up and leaned on my IV pole.  It wasn't nearly as painful as I thought it would be.  But I was really determined.  I knew that I could cheer Matthew up if he could just see me.

So off we went down the fall and across the nurse's station.  I pushed my IV pole the whole way and took small steps.  I reached his room and I heard him say, "She's here?!  Let me see her!!"  Then I walked in and said "Hi Baby!"  He looked absolutely shocked to see me, like I wasn't real.  He kept saying "I can't believe you are here!  Look at you!  You are so beautiful!"  I kissed him, we both cried, as did everyone else in the room.  I kissed his hands and said the same last words I said to him when we last spoke.  "Thank you."  Then I sat on a chair and fed him some jello.  He was pretty drugged so I didn't stay long.  I leaned in to kiss him before going back to my room.  That was pretty much the end of that day for me.

So at that point, things were looking good and we were on our way to recovery.  I heard that after I left,  Matthew stood up and took a few steps, but couldn't make it to my room.  But I knew he would come see me the next day for sure.

It's a smile on my belly. :)

We did it, everyone!  And both of us are doing great.  I can't type long.  The drugs make me need to close my eyes.  I promise to try to post tomorrow though.

Check out the amazing job Dr. Katz did on my incision site!  

Super cool!

            And even more importantly, this is the picture of                           

my first urine output

                       Apparently Matthew's kidney makes golden urine

Hello followers of Kidneys and Pinups,
This is Blaz,  a friend of Matthew and Tonia and someone who has watched the two of them go through this amazing, frustrating and trying journey. I love them dearly. Tonia asked me to update everyone on how the transplant went today.

The transplant went without any problems. Both Matthew and Tonia are in good condition. They are in rooms right next to each other in the hospital with their families around them. They are recovering well, they have both been able to stand and walk, though this first day has been painful. It looks like everything went as expected, everyone is very happy and relieved to know they are ok. The next steps are controlling the pain, recovering from surgery and hopefully soon Matthew and Tonia will be able to enjoy life without medical concerns hanging over their heads or holding them back.

Tonia's wonderful Mother has kept everyone in the loop on the recovery today. She snapped the following photo of Tonia walking down the hall just to give Matthew a kiss and boost his moral and ease his pain.

If this isn't a true moment of the love between two beautiful people, I don't know what is.

Matteo

Matthew gave this to me on my birthday last September.  I was very sick at the time, just about to go on dialysis and resisting it every day.  I think I mentioned to him how I didn't think I could possibly survive past 60 or 70 with all my health issues, and that it scared me sometimes.  He wrote this for me.  I thought it was only fitting to schedule it to post on our transplant day.

This is the selfless man who is giving me a piece of himself to make me whole again.  He's a hero, a nerd, a warrior, a role-model, a lover, and my favorite person in the whole world.


2062 

I remove my helmet to depressurize
The airlock is loud and refreshing
The dog's spacesuit is like mine
But more comfortable, more dashing.

Once safely inside I call out
To my favorite star
In this wide galaxy, we've done so little
But we've come so far.

You're still here
And I am too
In the year twenty sixty-two

It's not so hard for me to move at 86
When gravity can be set for just one-sixth
Your kidney function might be slightly low
But your annual pill returns your glow.

It's your birthday, and the whole solar system knows
Thanks to Facebook which grows and grows.
You tune in to the video feed
Showing countless friends from every creed.

They call you Zia, Professor, Director, and Friend
The wishes come all day, and seem to never end
Hundreds and Hundreds filling the room with light
Our space station filled with warmth on a cold space night.

You've inspired so many
For eighty-two years
Fighting and clawing
Through the pain and the tears.

I'm completely bewildered.
How are you here?

What we've all learned in this fathomless space
The secret to resilience and aging with grace
Is to just love one another, day after day
Floating through time, coming what may.

And onward we go through another frontier
Health is no issue, neither is fear.
We'll live and we'll love with kindness and light
Knowing that each present's future is bright.

You're still here
And I am too
In the year twenty sixty-two.


~Matthew E. Ellis

                                                                 

One day more!!

Today was a long day.

I started with 6:45 dialysis in the center here for three hours.  At 10, we ran to the other end of the hospital (its a very, very large hospital) for an infusion of Soliris.  When I say ran, I mean my Mom pushed me in a wheel chair.  She ran like a champ.  After the Soliris infusion, we had a hematology appointment for my blood clot consultation.  Then we did an ultrasound.  After that we met up with Matthew and his parents.  He had a full day of consultations for donor stuff.

Now he and I are sitting together with a bit of anxiety, not quite sure what to do.  Matthew is really hungry.  His clear liquid diet is pretty rough.  They let me eat, but I tried not to eat in front of him.

So the plan is shower, cuddle, and wait.

We just want to thank everyone one more time.  We couldn't have done this without all the support from our amazing friends and family.  We love you all, and will I be back as soon as I can sit up and type!

And for your viewing pleasure:

One day more
Another day to go under the knife
this never ending road to change our lives
These doctors who will cut our sides
will surely need to hit their stride
one day more..

(Tonia) I did not pee until today...
how can I pee without your kidney?
 (Duet) Tomorrow you'll be right next door
and yet your/my kidney will be inside me...

(Tonia)One more day with my machine
One more day with dialyzing
What a life, I might have known
I'll go back to work again....

(Matthew) One more day before the storm
in one more day my wife won't suffer!
She will stand up on her own
And our life can start again....

(the time is now the day is here!!)

One day more!
One more day until the transplant,
we will face it standing tall
we'll get rid of all these chest ports, 
we will urinate like all

(Both) Watch'em run around
trying not to fall
carrying our kidney like its ten feet tall
here a little clip, there a little snip
most of them are doctors so they know their shit!!  

(all)One day to a newer kidney,
Every day she'll get to pee
there's a new world for the peeing 
can you hear the kidney sing?

(Matthew)My kidney's yours, I pee for you!!!

One day more!!

(This is the ensemble round part, everyone sings here)
~I did not pee until today, how can I pee without your kidney...
~One more day with a chest port!!!!...
etc..

Tomorrow is another day,
tomorrow is the judgement day
Tomorrow we'll discover what Tonia Sina Ellis has in store,
One more dawn,
One more day,
ONE DAY MORE!!!! 

Welcome to Iowa

We made it to Iowa!!

This is my amazing aHUS specialist, Dr. Carla Nestor on the right.  Monica Keleher on the left is the rare disease coordinator that helped me get in touch with Dr. Nestor and got the ball rolling for me.  They are both amazing women!

The countdown

The dialysis treatment countdown pictures: 

                                                        We are ready for Iowa!!!

Thank you

In case all of you that read this don't realize. We had a really hard time putting a donate button on this blog.  We really talked about it, and we almost didn't.  It is so difficult to ask for help.  It takes humility and vulnerability.  Most of our friends are struggling artists that don't even have expendable income, too.  We know that.  We have had help from strangers, acquaintances, family, friends, and friends of friends.  Some people we haven't seen in years that Facebook has enabled us to reconnect.  The money we have raised has done so much more than financially support us.

The truth is:  Matthew and I have felt pretty alone for so long.  Being sick isolates you.  It has this strange way of creeping into your thoughts and making you second guess every friendship you have.  But the donate button and just this blog as well as Facebook has helped Matthew and I realize how NOT alone we really and truly are.  I feel like I haven't seen anyone all year, yet I feel more connected to my community than I ever have been because of the internet.

There are many ways to reach out to someone.  Every time we get a "like" on Facebook, or a "You guys got this!" under a picture we post, we feel loved.  A text from a friend saying they are thinking of us, or a card in the mail reminding us we haven't been forgotten can change the course of our day.

People say the internet and technology is pulling us apart, that we no longer have personal connections because of it.  But I say that if we learn how, technology can connect us in ways we never dreamed.  Because at the end of the day, if life isn't about living and loving as much as possible, than I don't know what it is about.  It isn't about charity, it is about helping support the ones who need it because one day it might be you or someone you love that needs help and needs to feel loved.  And Matthew and I feel very loved.

So thank you.