Splenomegaly

What? That was our response but we will get back to that.

back to the story: May/June 2011

So we arrived a little earlier than scheduled on Thursday, we weren’t supposed to have any actual tests on Thursday, just an appointment with the Psychologist and with the Surgeon.   Because of my iron levels were low we needed to have blood drawn again to test those levels.  Everything went smoothly and I was off to the Psychologist after a short meeting with my coordinator just to go over a couple of things.

If you have ever been to UNC Chapel Hill medical center you realize it is about 5 hospitals together (give or take), so they sent me on a long goose chase down some back halls to make my way to the Psychologist.  I finally made it to the correct place, even though I wasn’t quite sure where I gave the lady my name and asked for the Psychologist they had directed me too. 

It turns out that the normal Transplant Psychologist was on vacation and not available today so they had scheduled me with a different psychologist.  Well to make a long story short, I waited for what seemed like forever (45 minutes, and to be fair every other appt. went off right on schedule).  Then the Psychologist finally came out after I had asked the receptionist at least 3 times if everything was ok and I was in the correct spot.  She was very nice and let me know that there was a problem with scheduling and she wasn’t going to be able to meet with me.   It turns out that by North Carolina law seeing the Social worker was enough and she signed off on me so I wasn’t going to have to see a Psychologist at all, some people might say it was good I got to avoid that because I was never going to pass a Psychological exam.

So that left only one more meeting on the schedule, so after lunch, cheese steaks at a place off of 501 they weren’t bad, but not John’s Roast Pork (that will be a whole blog one day).  We headed back to the hospital to meet with the surgeon.

Kate were sitting in a room when a resident came in (let’s call her Christina Yang for you Grey’s Anatomy fans) and started feeling around on my stomach.  She asked if my stomach hurt and informed us that the CT showed that I had a Splenomegaly (enlarged spleen).  She didn’t have a great bedside manner, plus I had no idea what that word meant at the time, and all I remember her saying was you’ve probably had a lot of people poking at your stomach.  My response was no you are the first one to say anything about my spleen being enlarged, the other thing I remember her saying was that they probably wouldn’t want to use me as the donor (not what Kate and I were wanting to hear after traveling from Florida and going through all of these tests).

Next the surgeon came in, he was a very tall guy with a thick accent, which at this point I have no idea where it could be from.  He was much better to talk too than Yang but he basically gave us the same message. The majority of my tests were perfect but we had the problem of the low iron and the Splenomegaly that we would have to clear up before I could be approved as a donor,  a little bit better new that they weren’t eliminating me as a donor.

As I am writing this and I’m sure as you are reading this about now is when you start thinking, wait I know I want to donate but maybe the most important thing here is am I actually healthy what is wrong with me.  So next we went back to meet with the nephrologist, the second set of blood tests for my iron levels also showed low iron levels and low ferritin so we were going to have to determine the cause of that.  We had a lot of conversations and we determined the most likely cause was that I have been a 5 gallon blood donor over my life, plus Kate and I had been eating a diet known as the Daniel Fast, which pretty much eliminates all foods except fruit, vegetables, and whole grains, so I wasn’t getting any iron.

He recommended that we see a Hematologist for the iron issues and the enlarged spleen.  He thought it wasn’t probably that big a deal, however it could be cancer or some other sort of blood disease (leukemia, lymphoma, Hodgkin’s, or cancer), not really what we were looking forward to hearing as we are heading back to Florida from trying to donate a kidney. All of our sudden our focus has gone from helping Ashley to what in the world is wrong with me, and did I mention that I was going to have to get a colonoscopy and endoscopy to make sure there were no internal bleeds (just what a 36 year old guy wants to hear). 

Before we left we talked to our coordinator and she told us that at this point a lot of people would give up on the donation, it was too many tests to have to go through, and she asked us if we wanted to still try to donate.   Of course we said yes, just because Satan had thrown up a couple road blocks we weren’t going to quit, God had started us on this Journey and we were going to follow it until the end.

Did I mention that we still had to meet with Ashley that night to let her know what we just found out?  She handled it very well even though you could see the frustration in her eyes, we did our best to encourage her that we were going to follow through with the testing and not quit.  We had some very good conversations that night; she talked about the guilt she had felt that someone had to die for her to get her lungs and how much she has struggled with the idea of taking my kidney.  We talked about Kate going through the process if I didn’t and her comment was that she really wanted a curly kidney instead of a bossy one, which still makes me laugh as I write it.  It was night of tears and laughter (which there will always be a lot of if Ashley is around, laughter I mean) and another night I won’t forget.

Afterwards we went to dinner at Mami Nora’s a Peruvian place with very good lomo saltado, (beef with stir fry peppers and French fries) and to a Durham Bulls baseball game.  Crash Davis and Nick Luleoch weren’t playing but it was a good game and we had a great time.  Ashley went home and Kate and I went to bed ready to start a whole new part of this story, to find out if I was healthy enough to donate.

What it feels like to be a Lab Rat

Day 2 was the big day for appointments, I had 8 on the schedule that they gave me, so we were going to be running like crazy, we had to show up at 8 am and the last appt. started at 3 so it was going to be a full day.   So we woke up at 7, left the hotel at 7:35 and made it to the hospital on time, which is really quite an accomplishment for Kate and me.

The day started with Labs and an EKG, which were pretty uneventful, just drawing blood and putting a bunch of suction cups on your chest for the EKG.  The only thing is at this point I had an IV from the day before and now they are drawing blood again from pretty much the same location, after drawing it at least 3 or 4 times the day before, so I’m starting to look like a drug addict.

Next we met with the social worker, and Kate and I decided that basically a lot of these people’s job is to try to talk you out of donating, which I guess is a good thing, they are just trying to make sure you know what you are in for.  I think if more pre-marriage counselors took this approach there might be less divorces.   She asked us a lot of questions and at one point had to ask Kate to stop answering so she could be sure I knew the situation. 

After that we met with our transplant coordinator, this is the first time we had met her even though we had communicated a lot by email.  We had to watch a 40 minute video that took us through the process of donating and what that looked like, it was very informative, for me it was a lot of review since I had done thorough research on what the process was going to be like, however it was really good for Kate since she hadn’t researched as much as I had

Finally we are on to some of the real tests, at 11am I was scheduled for a renal ultrasound, or basically an ultrasound of my kidneys this test is to find out the shape and location of my kidneys, or to make sure I wasn’t pregnant I’m not exactly sure, but this is the second time in my life I have had an ultrasound, I’d rather not go into the first but this experience was much better.  Didn’t take very long and wasn’t very intrusive.  The next step was a chest x-ray, not 100% sure what the purpose of this test was, but once again no problem and done very quickly.  I will say that I was really impressed with how quickly these procedures went off and how on schedule we were.

Now my next appt at 1 was with the Nephrologist, and at 2 we had an appt with the Financial Coordinator, but the more interesting part was I couldn’t have anything to eat or drink after one o’clock  for the CT, it’s really not that long but when you are talking to so many people you get thirsty pretty quickly.

At the nephrologist we got our first piece of information to be concerned about, my labs had come back and my iron level was low, not anemic but for a young (ok I know I’m not that young) man it shouldn’t be that low, so we were going to have to redo the labs in the morning. He thought with all the blood that had been taken they could be getting a false reading and we would worry about it more tomorrow.  He also informed us of what the procedure was going to be like, and did his best to talk us out of it to make sure we were sure about what we were doing.   The financial coordinator was uneventful just gave us the information on the procedure, Ashley’s insurance would pay for all of my medical bills, but not for any of the travel, we are lucky that Ashley has been taking donations to help with that, and that I am able to use FMLA and sick time from work.

Finally the last procedure of the day, I am just as worn out writing about it as I was that day going through all of this.  The last step was the CT, which I was worried I was going to have to drink one of those thick glasses of stuff that I saw other people fighting down all day.  But they let me know that they were going to inject me with the dye, so they take you back to this big room, and lay you down on the table by the machine, it wasn’t a full body scan so it wasn’t anywhere near as claustrophobic as you see on TV.  I was only getting one done of my midsection up to my chest.  When they shoot the dye into you it makes your whole body warm and makes it feel like you have peed your pants, they warn you about this but it is still very surprising when it happens, and you really want to check to make sure you didn’t but you aren’t allowed to move. 

The procedure went well and we were done for the day, this would be our longest day of tests so we thought we were on the downhill stretch now but we weren’t quite prepared for the surprises we would get on day 3. 

Kate’s friend Liz from Asheville had come into town on Tuesday evening.  It was good for Kate to have someone else to talk to since I am not a very good patient and was getting asked so many different questions by so many different people that I had used up all my words for the day.  We went to dinner at outback to eat some red meat and to get my iron levels up for the tests tomorrow and someone (probably Kate’s Parents) had given us a gift card.  That concludes the marathon that was day 2 and now we are preparing for what we were expecting to be an easier day 3 with only 3 appointments but you know what happens when you assume, and if you don’t I’m not telling you.

Chapel Hill by way of St. Simons Island

We were scheduled to have our first tests in Chapel Hill on Tuesday May 31^st, this is one day after Kate’s birthday.  The hospital only does testing Tuesday through Thursday, I guess the transplant doctors don’t work on Monday or Friday I’m not really sure, but it makes it so anytime we go up there we have to take extra days off work on both sides.  We decided since we would have to take Monday off anyway we would do a trip over the weekend before the testing.  My brother Keith and his wife Stacy were planning on going to St. Simons Island Georgia for the weekend so we asked if we could piggyback and have a little vacation with them, and get a chance to see our niece Abby who we really don’t see enough. 

I really didn’t know what to expect from this location, I have a very low opinion of Georgia as a place to visit, to me it is just the place that smells bad on the way from Florida to New Jersey.  We rented a 3 bedroom condo of off VRBO (Vacation Rental By Owner) which is an excellent site if you haven’t used it.  St Simons is a really cute little area, and a beach town, and we thoroughly enjoyed it and have suggested take one or both of our families up there for a vacation some time, I definitely recommend it.  The highlight might have been Jekyll Island where there are literally hundreds of old trees on the beach, which make for some great pictures.

After the weekend of relaxing we headed north for Chapel Hill, I had booked a hotel through Priceline for 45 dollars a night(if you didn’t know already I am cheap, and I am willing to risk where I stay to save some money, and have had very good luck with Priceline) which was located in Durham, called the Millennium.  It was actually located really close to Duke, so we were staying on enemy turf.  It was a nice hotel the location wasn’t as convenient as we would have liked, and there was an extra charge for something, probably wouldn’t stay there again, but enough of the review and on to the testing.  This entry was actually written while I was at UNC, I had the idea to journal real time, but that only lasted one day, pretty much like every other time I tried to Journal.

Registration was a breeze and since I have never really been hospitalized or had much experience with being sick I was excited to have a hospital card.  When I think about that I feel guilty about that, but I guess it is the little things that keep you smiling and enjoying yourself.  Kate and I prayed before we went to this and I was grateful she came to the appointments.

The first test was for my Kidney function, they took my blood to test it, and then they injected a radioactive fluid into my blood.  The idea is to see how fast my kidneys remove the radioactive fluid from my blood.  This was the first time I have ever had an attached IV, I mean I have given blood before and am not scared of the stick, but to have it in my arm for 4 hours was kind of interesting.  After they injected the fluid we had 2 hours to kill so I went to Sams with my IV and we bought supplies for our mission trip.  Half the time I was wondering if blood would just start shooting out of my arm but everything was fine. 

During this whole time I was instructed to drink as much water as possible, and Kate made sure I was doing that.  I guess this is like cheating the system a little because it forces you to have to urinate to get rid of the radioactive fluid.  I really had no idea that things go through your blood so quickly.  I guess God had a pretty good system with your organs and the kidneys work pretty well.

After Sams we met Ashley in downtown Chapel Hill at Momma Dibs, which is an authentic famous Soul food Restaurant.  I ordered Chicken and Dumplings which was lovely, with two sides of corn since I don’t like soul food vegetables.  Also I ordered two glasses of water which the waiter thought was funny and visited the bathroom twice.

We barely made it back by 1:45 which was the cutoff time to get my blood drawn again.   Not to mention if we missed that time we would have had to do the test all over, and wouldn’t have been able to do it for another month, which isn’t a big deal if you don’t live 12 hours from the hospital.  Anyway the IV held up and they took my blood 3 times every half hour for the next hour.  Carol was really nice and did an excellent job; she did however seem to take a little too much enjoyment in pulling off the IV securing tape.  So far that has by far been the most painful part of this.  I really should have shaved my arm before I came since it pretty much looks like I did anyway (remind me to do this, this time).

Kate and Ashley picked me up after the test and we went to Wal-Mart to finish up the shopping for our mission trip snacks and goodies to give the team on the trip.  If you ever want a good laugh you should go with Kate and I when we do this preparation for the trip.   I want to buy the cheapest stuff, and Kate wants to buy nice stuff, so it pretty much guarantees an argument every time.  The funny thing to me is I think we are both so stubborn that I picture it looking the same way 30 years from now when we are preparing the nursing home mission trip to Pucallpa

It was really great to have Ashley along for the part of the experience with us; she has pretty much been through every procedure and knows half the hospital. 

Later that night we met up with Ashley’s family in Pittsboro NC, it was a quaint little town with a lot of character, we had dinner and an old diner with a soda fountain, and it was a really fun place.  They were really thankful and didn’t really have the words to explain it.  Her mother was in tears just trying to talk about it.  It was great to meet them and feel there appreciation, and the cheeseburger and Milkshake didn’t hurt the experience either.

Kate got a Pepsi Sunday since she is a huge Pepsi drinker.  For some reason I had to convince her to order it but they poor Pure Pepsi syrup over the ice cream and it was very good.  I told her that if she didn’t try it she could never have Pepsi again as long as she lives.  Ashley spent the rest of the evening with us at the hotel and we watched the Heat win game 1 of the finals.

That wraps up day 1 of Testing, everything seemed to be moving along smoothly at this point, we thought this whole thing was going to be easy, but that changed really quickly so we will see you tomorrow for day 2, the following days will have to be more from memory so that should be interesting. 

WE ARE FAMILY

The whole time you are going through this process you are asking yourself several questions.  How long the recovery is, how this will affect my life after, what will people think, what if I’m not a match, are they going to find something I didn’t know about, what kind of cool scar will I have.  All the Questions you tend to ask tend to be very selfish and only concerned with yourself.  Once you come to grips with those questions you start to realize, I am going to have to tell people, I’m going to have to tell my parents and Kate’s parents.  I know those seem like little worries coming from someone who has willingly decided to write a blog about this but they are daunting questions. 

Kate and I decided that we didn’t want to lie at any point about what we are doing, so that left us with a decision when we found out that we would have to travel to UNC to have the testing done.  We didn’t want to make up some story and then have our families ask us why we just didn’t tell them in the first place so we decided it would be best to tell them before we went to UNC.  It sure sounds easier as I write it now than it felt when we were preparing to tell everyone.

I’m not one hundred percent sure of the exact timing, and I am sure Kate will correct it later, but we got back from Europe at the end of April and were going to UNC at the end of May, so I believe in the beginning of May my family was in town so we decided we needed to tell them.  I remember we had just finished eating dinner and we were sitting out back at our house.  As you have probably figured out from my proposal story that I tend to be a little slow at being able to get things out.  I run them over and over again in my mind trying to come up with the best words until it is just time to blurt things out.

We told my parents, I really wasn’t exactly sure how they would take it, I mean I don’t have any kids yet, but my thought is you probably never want to hear that your child is having surgery, yet alone voluntarily having a surgery.  They had a lot of very good questions, they voiced a lot of very good concerns, and we talked about it for a good while.  The funny thing is that no matter how old you get they are still your parents, you don’t have to ask their permission, but it sure helps if you have it.  My parents were great, for my safety they would really rather I not do it, but they understand what I am doing and are willing to support me through something that they might not necessarily choose for me.  It really is all you could ask for; I can only hope I can follow their example someday with my own children.

Next we had to tell Kate’s family, her whole family happened to be in town including Betsy and Carl, Kate had made the mistake of telling Betsy (granted she had to or Betsy was going to leave before dinner) that we had something to tell them at dinner, so they had spent the whole day coming up with crazy ideas (Carl suggested I was getting a sex change) and mostly they thought we might be announcing that we were moving to Peru.  I’m not sure what to think but all of them would rather I give a kidney than move to Peru.  They asked a lot of the same questions, had a lot of the same concerns and were just as supportive, I feel very lucky to have them as in-laws.

There was a lot of needless anxiety and a lot of prayer leading up to sharing this with our families, but Paul says it better than I ever could so I am going to close with that.

Philippians 4:6-7 “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”