Hospitalization and Recovery

What I have realized through this process is that I take a lot of things for granted.

·         Being able to sit up on my own

·         Being able to walk

·         Being able to go to the bathroom

·         Being able to eat

·         Wanting to eat

·         Being able to do any of the above on your own

·         Being able to move fast enough to avoid harm

·         Not being a burden on other people

·         Not being afraid

Going into the surgery I figured as soon as I could get out of the hospital I would want too.  But when the doctors did their rounds on Thursday and told me I could leave the hospital that night if I wanted to my immediate response in my head was no way are they crazy the surgery was barely over 48 hours ago.  I think what I said to Kate was maybe we should wait till tomorrow, which she was fine with because she had wanted me to stay until at least Friday all along.

There is a huge difference between visiting someone in the hospital and being a patient that I am not sure I was aware of.  When you can barely sit up on your own, and it is really painful to get up and go to the bathroom the idea of getting out of the hospital and having to do all of that on your own doesn’t sound so great.  As annoying as it is to have people checking on you every hour or so and waking you up in the middle of the night, it is nice to know that if something happens they are there, it is the ultimate safety blanket. 

Don’t get me wrong I was happy to get out of the hospital but there was definitely a part of me that was going to miss it (I mean they get excited when you walk the circle, and are able to get up and pee by yourself), where else to you get that kind of support and encouragement.  When I am home no one is excited when I go to the bathroom, actually sometimes people are upset about it. Stupid toilet seat.) I can understand how people who are chronically sick would be very scared to leave.

When you come home from the hospital, especially in our case there isn’t a huge greeting party, except for Kate she has been my cheerleader throughout this process.  The reality hits that you are fairly disabled.  The first night we were home I thought; let’s take a walk up to the market.  I was going to need to do this anyway when Kate went home for her show so why not get it out of the way to prove I could do it.

While it is only 3 blocks to the market what I hadn’t calculated in my head is that the 1^st block has about a 2 story incline.  By the time I got to the top of the incline I looked at Kate and said maybe we should go back, that was all I could do.  This was extremely humbling to realize that if I made Kate mad, which can happen more often than you think, or for those of you who know me, less often than you think, and she left that I was helpless to do much for myself. 

Another realization that hit me was when we were actually out somewhere.  I realized that I was actually in danger and a hindrance to people around me.  I am not moving very fast so if someone makes a quick move, or if I'm not carefaul about what I do I could run into someone.  Normally this wouldn’t be a big deal but if someone hit me right now I would probably fall down and not only would that hurt but what would it do to my incision. All of the sudden I was afraid to be out in public.

"The Illusion of Safety" (this will be a full blog post someday) that I normally live under had been lifted. 

When I saw people walk by who were kind of scary looking I knew that if they attacked us or confronted us there was absolutely  nothing I could do to prevent it, I couldn’t run, fight back, I really can’t even talk that loudly to have a scary voice.  Even last night Kate and I went to dinner in Durham in what wasn’t a horrible section of town, but it was dark and rainy and a guy went by on a bike and took a second look at us.   Instead of going to my door since he was on Kate’s side of the car I went to hers just so I was between him and her, but if he had bad intentions there was absolutely nothing I could do. 

It is hard to not let that fear overwhelm you. I have a much better appreciation for what people go through on a regular basis, and I hope I am able to appreciate the things that on a daily basis I take for granted. 

One of the biggest lessons for me during this process has been humility, and the perspective that God has given me through this process.  My only hope is that I can use what God has opened my eyes too and not forget it.

Ephesians 4:2 NIV – “Be completely humble and gentle; be patient, bearing with one another in love.”

Spotlight

*** Got this nice surprise in my in-box today.  JAB is an online newsletter for women and has become a great resource.  It is through JAB that Jeremy and I were able to find our apartment here in Chapel Hill.  They have featured a couple of blurbs following our story and then did this feature today.  Thanks Ashley S. for all the support.  If you want to learn more about JAB click here ***

We are pleased to bring you a regular feature called JAB Spotlight, in which we introduce you to a special individual who has made a profound difference in our community and in our world.

Ashley & Jeremy

Spotlight On: Jeremy Morris

Our inaugural spotlight is actually on JABBER Kate Merrill Morris' husband, Jeremy (an honorary JABBER if we ever saw one). Many of you have been following the story of the West Palm Beach couple since they first posted on JustAskBoo that they were looking for temporary housing in North Carolina while Jeremy donated a kidney to Kate's best friend. Yes, you read that right. He gave her an organ. It was his (and Kate's) idea. And they never once doubted that it was the right thing to do.

After receiving a double lung transplant in 2001 to correct complications from Cystic Fibrosis, the medications vital to keeping Ashley Quinones' new lungs healthy have had a damaging effect on her kidneys. Jeremy and Kate first started the kidney donation process in the Fall of 2010, and it has taken over a year to get the various medical and insurance approvals they needed - including overturning an initial denial for the surgery by Ashley's insurance company.

A week ago today marked the transplant, and I am thrilled to report that the surgery was "textbook" according to their doctors. Both patients were discharged after reaching all their recovery milestones on target, and are recuperating at home. Knowing Kate on a personal level for many years, I wasn't too surprised she and Jeremy went down this path. Regardless, reading their thoughts on the decision to donate, and seeing how their faith in God comforted them on their journey, was truly inspirational. On behalf of JABBERs across the country who have been rooting for you, we wish you a continued healthful recovery and salute you for this selfless and loving act of friendship and faith.

Oh, and if you were wondering, a JABBER did help them find the perfect apartment in Chapel Hill - as if there was any question that one of you would come through for them! For more of their story, click HERE.

Pain Management

This is the most important thing after you come out of surgery.  It was described to me in many ways, but the perfect cocktail to make you feel better is the one that stuck with me.  The most important word though is Management.

Manage means to succeed in being able (to do something) despite obstacles. (This really doesn’t help what I’m trying to talk about at all)  My point is that they don’t call it Pain Elimination, there is going to be pain.

Which brings me back to another reason I decided to write this blog; so that all the glory would be given to God? 

I haven’t wanted to force bible verses into the Blog but God has put one on my mind over the last couple of days.  It is Luke 9:23 then he said to them all:  “Whoever wants to be my disciple must deny themselves and take up their cross daily and follow me”.

You have to be thinking how this fit into Pain Management, and I really have been asking God that same question but follow me here and let’s see where it leads.  This is a verse I have meditated on many times in the past and every time I have focused on the idea of taking up my cross, what does that mean, what is my cross, how do I take it up.  What I realized is that I am focusing on the wrong part of the verse; the most important part is to follow him. Jesus has already lifted my cross.

When we follow him it will not always be easy, the beginning of that verse requires that we deny ourselves and this is bound to cause immeasurable amount of pain.  It is not if but when will we experience this pain.  The next question is what do we do when we are in the pain? How do we act?

We will get back to that; let’s talk about what it feels like after you donate a kidney.  The one coordinator told me I would feel like I had been hit by a bus.  This was not how it felt at all; it felt like I was stabbed right through the middle of the gut with one of those giant Ninja Swords (it didn’t feel like it was pushed all the way through my body, but just into my gut).

However, that doesn’t really finish it, and then it felt like someone took my insides apart moved everything around and put everything back together, only it didn’t quite fit exactly the same.  To be honest this isn’t all that far from the truth.

I have worked on cell phones for the last 7 years and I have become very good at repairing them.  Over time you learn the where the parts go and are able to take them out and put them all back in, but those first couple of times you try this you always end up with an extra part or screw (I hope they were able to figure out where all my extra parts went, even though I have been told on many occasions I have a screw loose). 

I can’t even imagine how hard this is for the doctors cause here is the catch, when repairing manufactured products they all come off an assembly line and are created the same way, every screw is in the same spot.  Well I don’t have screws, my insides are not exactly the same as someone else’s so every time they do this it is brand new, they do an amazing job, but in my mind sometimes I can see them just saying, close enough squeeze it back in there, as long as we can close it up should be good.  I know that’s not the case (at least I think I do).

The pain is significant, much more than I had prepared myself for (Kate is saying I told you so as she is reading this), the medications controlled it very well but I was very limited.   I did not respond well to oxycodone, it made me nauseous and completely knocked me out so I had them switch me to Vicodin (because I wanted to be like House) to see if it would work better.  It did a much better job of stopping the pain without making me useless, and I have been comfortable ever since.

Now you didn’t think I would forget the bible study at the top did you? I believe the answer is in Romans 5:3-5 “we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.”

It is easy to rejoice after we know the results and we are through the pain, however to rejoice while we are in the midst of pain is what Christ has called us to and shows the true character of a disciple of Christ.

Introducing Jash

JASH

Actual Age: 37

Transplant Age: 7 days

Weight: ¼ pound

Size: 4 inches long, 2.5 inches wide and 1.5 inches thick

Born & Raised In: Jeremy

Relocated To: Ashley

Occupation: Filtering Blood and Urine Production

Hobbies: Regulating Blood Pressure and Eliminating Toxins

After the surgery, we decided the kidney needed a name… after all there was a time when it was not Jeremy’s kidney and not yet Ashley’s kidney, but just KIDNEY.  Some names started being thrown around.  It was decided that the name should be a combination of Ashley and Jeremy – a Brangelina kind of thing.   

Ashley, Jeremy & Jash

 Kelly, Ginny (Ashley’s sister and mom) and I were sitting around talking about all the name options.  Meanwhile Jeremy was “asleep” in bed.  At this point he was very out of it and doped up on drugs… but he was coherent and heard everything going on.  All of a sudden, Jeremy raised his hand and starting spelling something.  He air wrote J-A-S-H and then drew a big ------------------. Like “the end” “that’s it” “the final say” “underlined” “it has been spoken”.  And from that day forward, it was known throughout the land as Jash (that was Ashely’s text response from the naming!).

Ashley with her new kidney

Jash is our super star.  He has already started working overtime.  We are so happy that Ashley is now home to Jash. 

Jeremy with his replacement kidney

 Dr. Cotton was kind enough to snap a photo of Jash during transplant.  Thanks Dr. Cotton!  View the picture at your own risk.

 Click to see Jash *warning: graphic material*

 

Ashley's Discharge

Ashley ready for discharge

Ashley got discharged on Saturday.  The orders came in around 11am.  Jeremy and I headed over to the hospital to say a final goodbye.  It is hard to accept that we won't be a few steps away from each other.

Jeremy back at the hospital - having some separation anxiety 

when we arrived, I went down to the pharmacy to pick up all Ashley's medication (and grabbed a starbucks!).  Once I got back, we had a little bit of a wait.  The nurses called for transplant, but they were not showing up.  It is hard to believe that a hospital this big shuts down on the weekend.  There was hardly anyone on staff.


When 1 o'clock started rolling around, we started to panic.  Ashley had to receive her next set of medication at 2pm and it was a 45 minute drive to Sanford.  This is the medication she is allergic too and had to be de-sensitized to.  It is also through an IV and the home health agency was already on their way to her house.  If she missed the timing, then she would just have to return to the hospital.









So we took matters into our own hands.  Genevieve got a nurse and a wheelchair.  We loaded everything up and headed downstairs.  It was our version of wheelchair racing!

Ashley was loaded up in her dad’s car and with one final hug, she was off.

We are so glad both Jeremy and Ashley are on the road for a full recovery.  Thank you for all your prayers and good wishes.

What it's like to be a kidney donor!

This is why I started writing the blog, when I started researching donating a kidney I had a really hard time finding firsthand accounts of what it was like, how people have felt afterward and what their experience was like.  So I am going to do my best to give you my account day by day. 

I want to make a couple blanket statements before I start this process because I don’t think these thoughts and stories are always going to be pretty, but they are going to be honest. 

• I have never doubted before or since the surgery that Kate and I have made the correct decision to donate to Ashley
• I am incredibly excited that she is doing so well with the new Kidney.
• I am taking pain medication (just in case I need an excuse for something I write)
• I reserve the right to add more to this list but can’t think of anything else right now.

So let’s start with the surgery day.

What is it like to have your kidney removed?

The honest answer is I really have no idea; you would have to ask the doctors.  This really is one of the harder things to deal with mentally.  My surgery was scheduled for 7:30 which meant I had to be there at 6 and I hadn’t eaten the entire day before because of the bowel prep.  I hadn’t had any trouble sleeping until that night, just the anticipation of the surgery has most of your nerves on end, so I probably only got 3 or 4 hours of sleep but it felt like a lot less.  To say the least I wasn’t in my best form that morning.

We showed up at the hospital met family and went up to the procedure waiting room.  There was a giant guy at the desk, but he had a really calming personality, seemed like he was perfect for the job (I will let you figure out why).  They took Kate and I back into the procedure suites (I like that they call them suites, makes it seem fancy, really it was just three walls with a curtain on one side).  There were an endless line of doctors and nurses that came in, that asked you all the same questions, and gave us the lovely gown.

Two things strike me about the gown, is there really not a better option for people in the hospital?  We have improved on so much but the gown they came up with 100 years ago is the best we can do. Secondly how did my super crafty wife not make me a personalized monogrammed gown, it just seems like something that would be right up her ally, not that I am complaining.

After the gown they put in the IV line and well you are pretty much ready to go.  There was one doctor who I’m not sure what his background was but he had a very raspy voice and he was one of the last one’s to come in.  He must have been my best man because his comment was you know you don’t have to do this you can still back out (we have a car waiting in the back and we can get you out of here).  I’m not sure if I am sharing too much guy information here, but that is the job of the best man, not the only job, but the day of the wedding he needs to let the groom know that there is a way out. 

Both.women and men are shaking their heads right now, women because they can't believe this happens, and men because they can't believe I told women that it happens, well it does and I'm sorry.

So they wheel you away from your wife as she is crying and you go down some weird halls that they don’t let anyone see and a bunch of half faces put you to sleep.  I’ve heard people tell stories of counting backwards or them saying something, but both times I have been knocked out a half face came at me and said this is an oxygen mask and I think I just passed out because of fear I have no idea but that is the last thing I remember. 

Then you wake up, you really have no idea what happened.  Your family is next to you and they have completely understanding of everything that is going on, and you are just thinking do I know where I am and do I have pants on (which you don’t) and to be honest you aren’t thinking that because I’m not sure you realize you still have legs. I remember talking to several people, Kate, Mom, Keith, some people rolling me around and then getting taken to my room, which until I went back to visit Ashley after we checked out I had no idea where it was in the hospital.

They ask you to roll from the rolling cart to your bed which is just mean and very painful but somehow I did it, and then you are in your room.

It doesn’t feel like anything has been removed from you, it’s not like they took a finger or an arm or a leg.  They took something you really didn’t know you had from a place that you really can’t feel or see.  You know you have a giant incision in your belly (4 inches) and two holes below your belly button.  It hurts, feels weird and is very uncomfortable, you have a button you can push every 10 minutes and I assumed it worked because the pain was controllable but I never felt a huge difference when I pushed it. 

The actual experience is to be honest the best word to describe it is disappointing.  I’m not sure if that makes sense, but they explained this very well and a lot in the process of becoming a donor.  You are healthy going into surgery, and in the reality of the situation they are making your body worse, they are taking something away from you, so you don’t feel better afterwards.  Besides pain maintenance there is really nothing for them to check with you to see if it took or if the surgery was successful.  If you are alive and breathing your surgery was a success.

That seems like enough information for today, I think Kate is going to post the kidney picture today and I will let her give the more fun updates, but I wanted to get started with the experience before it got to removed from my mind. 

Hope you didn't miss me

And that I am allowed to come back after Kate has been doing such a better job than I ever did. 

In my mind I figured I would come out of the surgery and type a post almost immediately but that was definitely not the case.  I mean I’m sure I could have written something, I just very much doubt that it would have been worth reading.  So today is Saturday at 11am, exactly 4 days and 4 hours approximately after the surgery started and I am feeling up to writing something.

It has been a crazy 4 days, you prepare for something like this but it is never quite what you expect, and if you get to know me any better you will know that I think the word expectation is a 4 letter word.  But that is a whole blog post after the kidney story.

I am doing really well according to everyone, not as well as I would like but I feel very blessed for what I am able to do and the support that I have.  I am very lucky to have a wife like Kate who has been by my side every step of the way since the surgery, spending three nights on what looked like a very uncomfortable chair and helping me every step along the way.

We had a great team of doctors and nurses to help us get started on the recovery and I couldn’t have picked a better place to have the surgery.  In the next couple of days I will update on what my experiences were like since that is one of the main reasons I wanted to write this blog.  When I tried to research what it was like for the donor I really couldn’t find very many firsthand experiences. 

But for now I am going to go see Ashley get discharged so that is just going to have to wait.

Discharge Day

Jeremy was discharged today!!!

Like every other day in the hospital, it started by multiple doctors visiting.  Dr. Watson, the surgeon, came and spied on us... he could not have been more pleased with how Jeremy's wounds looked and how he is recovering.  After the entire transplant team came around, they put the orders in for Jeremy's discharge. 

A little while later, Jeremy's prescriptions were ready, so I took the long walk to pharmacy on the opposite end of the hospital.  While I was in the long wait to receive the medications, Jeremy texted and said they discharged him!  I must admit it was happening all a little too fast for me.  But I rushed back up to the room and luckily found Jeremy's parents had packed up most of everything.

Before we wheeled Jeremy out, we decided to say goodbye to Ashley.  It was bittersweet to leave the hospital, especially leaving Ashley.  The departing moment was made even more special when we received a surprise... a very special gift.  I promise to post pictures and all the details.  But this gift deserves its own entire blog post (yes, it is that great).  So I will just make you wait in suspense {I know, such a tease}.


Back to the discharge.  Jeremy's parents brought him down when I brought the car around.  I had planned on posting all the pictures, but smart little me forgot to put the memory card in the camera – sadly no photo documentation.

Once we got to the apartment, Jeremy and I both crashed!  His parents came and help us move all our things into the house.  After lying on the couch for quite a while, we took a short walk.  Jeremy is now napping and I am going to do some unpacking.

I have lots of pictures and posts to publish.  I think I have already 3 or 4 in the works.  With all the commotion at the hospital, there was just little time to get it all done.  But I promise they are all on their way (just maybe a little out of sequential order).

Thanks again for all your prayers.