Lemons

Sometimes life hands you lemons.....
Sometimes life shoots lemons at the back of your head from a cannon at close range.

I've noticed over the past few months that Nathanial tends to blog about facts and I tend to blog about emotions. I am warning you now, this will be an emotion-filled blog.

I believe in my very first blog about this transplant, I talked about why it was so easy for me to give Nathanial a kidney. I compared it to walking past a drowning person and wanting to save their life. Its natural to want to jump in and save someone you love. Well, now I find myself feeling like I tried to save that drowning person. I ran down to the shore and I tried everything I could to keep him from rushing further down stream. I even got a few injuries myself. And now I find myself standing here empty handed and scared to death ........and he's been taken too far into the rushing water for me to save him. I'm sad and I'm devistated and I'm angry! I'm really angry! I don't even know who I'm angry at, but I'm angry!

I'll tell you about yesterday. Yesterday was our meeting with one of the surgeons and the coordinator in the transplant unit at St. Francis. At first, it was just going to be Nathanial and mom and dad. I wasn't going to be able to attend because I had to work and we found out about the meeting short notice. Then, I had a sick kid yesterday. Having a sick kid sucks. But this did present the opportunity for me to go to the meeting at 1:30. I figured Corynne was old enough to stay by herself for just a couple hours. Especially since this meeting was when they were going to discuss the options we had going forward with Nathanial. What we were told was going to be a meeting to discuss future options and discuss maybe another transplant date to shoot for, turned into, quite possibly, the most devistating doctors appointment I have ever attended.

While sitting in the waiting room, I had the most dreadful feeling come over me that somehow things weren't going to be alright. I know what you're thinking ,'there goes Hilary with her cup half empty logic again!' But that really wasn't the case. It was more of a psycic thing I get. Sometimes when my husband is on his way home, I will open the garage door just as he is rounding the corner, because I can sense that he is near. And even when we were dating I would pick up the phone before it would ring just seconds before he called me. The night of Nathanials huge ordeal a few years ago, (when he lost his kidney function) I did the same thing. I fell asleep knowing something would happen that night. I even called mom before bed and told her I was sleeping with my phone and to call if she needed to, no matter what time. I received a call around 3am that night, if I remember right. It was mom, and Nathanial was not alright. Sometimes I know things. Its probably just womens intuition, but whatever it is, its usually right.

The surgeon that showed up for the meeting wasn't Nathanial's surgeon...he was the one that was supposed to be doing my surgery (removing the kidney). And the coordinator that showed up was also my coordinator instead of Nathanials. Odd. Very odd. The whole family sat on one side of the table .....dad, then mom, then me, then Geoff, then Nathanial was kind of at the head of the table in his wheelchair. The surgeon came in and the coordinator. Sitting opposite us, they looked nervous. My coordinator wasn't making eye contact with me at all. I feel almost as if he were a friend more than the coordinator throughout this whole process and I could tell he was upset about something. The surgeon began by telling the family that the meeting would not be a comfortable one and that he is sorry he has to deliver the news to us. He turned to me and began telling me that in the transplant unit, their main objective is to assure the safety of the organ donor above all else. He said if any little thing indicates that it would be unsafe for me to donate, then they will cancel everything. I understand all of that....they've been telling me that now for weeks. He then proceeded to tell me that due to a blood result they got back from the Mayo clinic indicating that I, too, have Leidens Factor V, they will not allow me to donate my kidney. It would pose too great a risk to go through a surgery like that for something that is not 'fixing' me when I have the Leidens Factor V (that 'V' is a roman numeral for five--Leidens Factor Five). Of course the first thing in my head is that I have been through so many surgeries and I have never had one single complication. But he quickly said 'I know you have had plenty of prior operations and never experienced any complications, but that doesn't mean you won't have any next time. We have to balance the risks and at this time we're not willing to take the risk on you'.

Then without even a hesitation, he turned to Nathanial and began telling him about everything else they found. To fully understand the issue, you must know what Leiden Factor V is. Leiden's is a clotting disorder. It is a mutated gene that is hereditary and it causes abnormal blood clots. Everyone who knows Nathanial knows he has been plagued with blood clots since just after college. One time he had a clot that went all the way from his ankle to the middle of his abdomen. Prior to a sugery a few years ago, Nat had a surgeon that insisted he get a filter surgically installed in him to catch any blood clots from getting to his upper parts....his heart, his lung, his brain, etc. They describe the filter as an umbrella shaped thing that they inserted thru his neck down into a main vein in his chest. Once in place, they 'opened' the umbrella so that it was permanently lodged there in Nathanial's big vein preventing blood clots from getting to the important area's. However, years later, this becomes a problem. The surgeon told Nathanial that the filter is completely clotted and obviously has been for some time. They said that his body has grown new veins around the filter. Those new veins now make Nathanials middle section VERY hard to operate on. Number two issue: Nat's liver is enlarged. They believe the cause is, once again, clotting. Blood is going into the liver, but no blood is coming out...they think. I stress 'they think' because they have to do more tests to exactly determine if that is what is going on. The doctor really danced around that because he wasn't 100% sure that was why the liver was enlarged. Number three issue: Nathanial doesn't have room for a kidney even if they found a new donor now. Between the clot filter, and the large liver, and the old kidneys, and the new veins......Nathanial is just out of room. The surgeon told us that even if they had a good donor at this point, the transplant idea would still be out of question.

There was a lot more talking than just that. I remember bits and pieces of it, but it was really hard to focus at that point. Geoff looked like someone shot his dog. Mom was handing me kleenexes. Dad was wanting more answers. Nathanial was getting out his little notepad of questions he had written down. The doctor told Geoff and I that the kids could also have the Leiden's Factor V and to make sure they were tested before any surgery or if they have any kind of injury. The surgeon also mentioned that there might be a doctor somewhere in Pittsburg that would look at Nathanial more. The surgeon wanted a full run-down of Nathanials medical history and while the family was talking through that, I guess I must have dazed out. Because I don't remember a lot of what all was said. I remember going from angry to just weepy then angry then weepy. I remember looking at Nathanial sitting there asking questions and being so polite. I remember Geoff asking a couple questions about what if they hadn't tested for this. (sidenote: the only reason I was even tested is because Geoff brought it up. None of the doctors thought about testing me prior to ME telling them about Nathanial having it and wondering if I should also be tested).

I excused myself, telling everyone I really needed to be at work. Mark, my coordinator, came over and hugged me on my way out the door. There weren't really any words exchanged. I mean, what can you say? 'Nice try' ? 'Better luck next time' ? Nothing at all is appropriate in a moment like that. Mom and dad and Nathanial were a bit slower than Geoff and I in getting out of the transplant unit. They have Nat's wheelchair and all....and I just kind of bee-lined it for the elevators. Once at the elevators, I just hugged Geoff and cried and cried. I tried to wait until we got outside, but sometimes the tears just turn on and I can't find the off switch.

Nathanial is talking about cashing out his life insurance policy now. And he's making a list of all the things he wants to do before he dies. This has a crippling effect on my mind. I am SO angry that Nathanial has to keep on suffering. I am so spent of worrying about little things, like if he catches a cold or gets the flu. I am exhausted of asking God why Nathanial. Why him.....of all the people in the world. Why him?

I slept okay last night. Until my alarm went off and I sort of came to. I immediately realized everything that had taken place the day before and before I even got out of bed, I had teary, bloodshot eyes. I was hoping to wake up and find out the last two weeks were a bad nightmare. No such luck. I got showered and dressed and packed lunches and saw the kids off. I went to work, but being the cry baby I am, my boss sent me home. I needed to be home I guess. I need to just re-colaberate and pray and digest everything.

So with all that being said, this will be my final blog. There's really no more stories for me to tell. No more drama for me to bring to the table. All my struggles seem so insignificant now with the IV's and the lab. I'm very sorry this didn't end with the happy fairy-tale ending I had dreamed it would. The family will search for any answers we can get for Nathanial. Everyone in our family will be tested to see if they also carry the Leiden's Factor V mutant gene. And no matter what life throws at us next, we will still have our faith.

Love,
Hilary