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

Not Good News

We talked to the doctors today. One poor fellow had drawn the short stick and had to give us ALL the bad news.

Hilary has Leiden Factor 5, just like me. This means she'll build blood clots easily. This means she cannot donate a kidney to me. It's not all that bad for her. 5% of all caucasions in North America have Leiden Factor 5. Most people never have a problem with it. For Hilary, it means she'll have to be aware and let her doctors know if she has any major surgeries. It also means she'll have to be a little careful that she doesn't lay around too much, keep her legs moving and drink a glass of wine every night(it's a blood thinner). I think she's OK with that.

As for me, I have an enlarged liver. After Thanksgiving, we'll do more tests and see if it's Budd-Chiari Syndrom. If it is, I have to have that taken care of before the kidney. I cannot have a kidney transplant while I have that.

Well, that's about it. Good news is all my bone marrow work came in positive. Later.

Grace and Peace,
-Nat

Gross Long Day

On Friday, I went to dialysis. I always go to dialysis on Fridays, but this day was different. I made a mistake. Normally, before I leave the house for anywhere (which lately means dialysis) I clear out. I go to the bathroom, and I pick my nose clean of all boogers. Yes, yes, I know that's gross. I have a big hole for a nose. I'm self concious about people seeing my nose boogers, especially at dialysis where the nurses get really close and I'm leaning back in a recliner. In fact, I carry a small pocket mirror with me, so I can check out my nose and make sure it's clear.

Anyway, I start dialysis around 6:00, by 8:30, I REALLY had to go to the bathroom. I had the nurses unhook me and I waddled as fast as I could to the bathroom. After a long trip to the bathroom, I went back and got plugged into the dialysis machine again. Not long later, I REALLY had to go again. I had only 15 minutes left, so I just quit early.

I had been feeling pretty bad for awhile. It wasn't just frequent trips to the bathroom with massive diarrea, I also had the chills. Normally, if I get the chills, I've got a temperature. Not so this time. So now I've got the chills, diarrea, stomach cramps and I feel like puking. I hadn't eaten anything all day. Every time I took a drink, I had to run to the bathroom. I was sitting at home in the recliner, rocking back and forth, pretty much just being miserable. Any plans I had for the day were shot!

Now, my dad was home, watching me like a hawk. He gets real worried when I start rocking back and forth. After an hour and no progress, he decides it's time to go to the hospital.

My mom has to leave work early, we need her van to drive to the hospital. She has missed SO much work to drive me to doctors and hospitals. Anyway, by now I'm dehydrated. The constant diarrea, along with dialysis has literally drained me. This tends to make my legs cramp. I've got an hour drive to the hospital in Topeka, with diarrea, and leg cramps.

I end up taking an oxycodone for the cramping pain as well as anti diarrea medicine. Things start going a little better. Unfortunately, (fortunately?) by the time we arrive at the hospital, I feel fine. I had been suffering for hours and when we finally arrive where I can get some help...I don't need help any more. This is annoying. Regardless of how I feel, we go inside. They do some lab work and do something I most needed...SALINE!!! I know that requires an IV, but my oxycodone was still working. I got the IV put in and that precious water began flowing through my veins. I felt MUCH better, very quickly.

I guess our bodies are made up of quite a bit of water. Being dehydrated stinks! It feels so bad not to have enough liquid in you, even though you probably don't know why you feel so bad. Anywho, a couple hours later, they let me go home. I feel fine now that the diarrea has stopped and I'm rehydrated.

Despite the long day, it ends up quite a pleasant evening. I even got some sleep that night. :)

Stand Still

The days are dragging by as slowly as possible now that everything is up in the air. Today should have been my day three with no kidney. I should be in a lot of pain today and on a lot of drugs, feasting on hospital food and being forced to walk even though I would rather not. Instead I am still packing the kids' lunches and going to the bank all day. I'm still coming home and letting the puppies out and making dinner and running kids around. I still have this extra kidney. And Nathanial still has none.

Monday, Nat and mom came to town for a bunch of hospital tests to see what all was wrong with him and what all the doctors think they can do. Nathanial described one test as the most painful thing, next to kidney stones, that he has ever lived through. He was in so much pain when he came to our house it made me angry. He kept taking his oxycodone (sp?) and wincing everytime he tried to re-arrange his legs. He didn't sleep at all Monday night. (Although, Mace, our little black puppy, slept quite comfortably next to Nathanial in the guest room!) The next morning Nathanial was scheduled for another test, a cat scan, at a seperate hospital here in town. Conclusively, the doctors think Nathanial has pneumonia....even though he says he feels fine. They also determined his liver is enlarged and they want to find out why. While I am frustrated to not be done with the transplant right now, I am thankful that the doctors are giving Nat the attention he deserves now. Next Monday, the 23rd, the physicians have scheduled another meeting with Nathanial. They said, provided all the tests look okay, they may set a new date for a transplant at that time.

I'm not holding my breath.

In fact, I'm doing the opposite. I painted my nails again (I had all my polish removed for weeks in preparation for surgery). I started taking my Advil Sinus again for my headaches....the nephrologist told me that was hard on my kidneys. I am doing whatever I can to temp Murphy. Murphey's Law and I do this dance often. You see, when I plan and I have things ready to go.....guaranteed something will go wrong. So, when I don't plan, sure enough things happen that should have been planned for. There really is a method to my madness!

Let Down

Well, by now most of you know, the transplant is not going to happen Tuesday.

Its kinda hard to write about this and not be emotional. I mean, we were admitted. We were sent home with our papers and our perscriptions and our 'after care' instructions. When I went back to work after being admitted, everyone from the bank was wearing their little green ribbons for us. I had my list of things I needed to pack for the hospital. The kids' teachers knew what was going on and they were getting the kids homework ready for them to be gone on Tuesday. WE WERE DOWN TO THE LAST MINUTE! ......and then the email came from my coordinator explaining things may be delayed. And then I saw I had a voicemail on my cell phone from Nathanial........I knew it wasn't good news.

Apparently, the doctors here in Wichita didn't fully understand the complications of having Nathanial as a patient. He's not your average kidney patient. He needs infectious disease specialists and blood pathologist specialists and neprologists and a bunch of other 'ists' that I can't even remember. I thought the doctors were acting rather cavalier about him all along. I was concerned that everyone on the transplant team was checking me out to death and not hardly even contacting Nathanial. But then again, I thought maybe it was just because I was so close here in town that they all knew me.

Nathanial will be here in Wichita again tomorrow. He is visiting with a long list of doctors and specialists and he is going to have his bone marrow tested (gag!). And after an exhaustingly stressful day for everyone in the family, I am hoping we have more answers. Its no fun to log onto my facebook and see my time-counter that says "two more days until transplant". It makes me cry. It was no fun to go to church today and have everyone say "oh Hilary, its almost here! We'll all be praying for you Tuesday" and then I have to explain the whole story again. Everytime I explain it, I start crying all over again like a little baby.

And Nathanial, on the other hand, is acting like this is no big deal! I admire his strength and his faith so much. I'm the one whining like the world is going to end on Tuesday and he's all like 'oh well, this is good. They'll fix whatever is going on and THEN we'll do the transplant. No biggie!' He's awesome like that. Its totally normal for him to be awesome like that. And its totally normal for me to cry a lot when things don't go my way. Thats why he deserves to have this kidney. And SOON!!

So please pray! Pray pray pray pray pray. There's a plan here--and none of us know what it is yet--we just have to have faith!! I am believing that this is just going to be a minor setback. I am going to believe that by Christmas Nathanial will have his new kidney. (because I was going to use that as my gift for him this year. lol) I am going to believe that by all these new doctors becoming involved with Nathanial, he will be even healthier than we ever thought! I am going to believe that there will be no more complications and operation kidney transplant will once again resume!!

~ Hil

Delays

Yet more delays. Some of my blood work came back bad, so now I have to run LOTS of tests and meet with specialists on Monday. Until then, the transplant has been delayed.

Oddly enough, one of their suggestions is stopping some medicine I have been taking. There is a possibility that it is causing the blood problems. Stupid medicine. It helps one part of me, but hurts another part of me. :(

Oh well. At least we're still in the end phase of this big project. I'm glad they caught this before the surgery. :)

Being Admitted - by Hilary

Its official. Nathanial and I are admitted to Via Christi St Francis for the transplant. They make this whole process so convienant--they let us use yesterday (Thursday the 12th) to get all our admission paperwork and lab done so that on Tuesday (THE day) we just walk right in and go to it. I have to say, I was starting to get really nervous about this transplant....until yesterday. Yesterday brought such a peace and calmness to me. I don't know why and I don't know how, it just did.

Yesterday I was to be at the imaging center at 6:45 in the morning. It was time for my MRA, magnetic resistance anatomy imaging. I knew this required an IV so I had been literally making myself sick about this day for two weeks. They were going to start and IV drip of some kind of radio-active material and then stick me in the machine so they could see all my insides and map out just exactly how the surgery would take place.

When Geoff and I arrived we had to circle the hospital a few times first to find the imaging center. It was hidden! It was all tucked inside a little C-shaped part of the hospital, but it was a seperate building. I get stressed out when I'm running late, and although this didn't necessarily make me late...it did make me feel like I was late so I got flustered. Upon entering, the desk clerk had me fill out forms releasing my information and consenting to treatment....all that rigamaroo that goes along with doctor visits. Then they asked Geoff if he was going to be in the room with me. What? He has the option!? Last time there was radio-active material in me they wouldn't allow him in the same hall!! So needless to say we were pleasantly surprised he was allowed to go with me!

They guided us to the dressing room and told us that we needed to leave all our things in there. They even made Geoff empty his pockets of his wallet because the room would suck the magnetic stripes right off of his credit cards. ...uh... seriously? We obliged and then I got to put on my little hospital gown. While the gown isn't dripping with sexiness, it sure is comfortable! The nurses guided us to the actual MRA room. It had this giant machine with a tube in the middle and a bed that slid in and out......and then over in the corner was a recliner and some magazines and a little plant. It was actually pretty funny looking because the room itself was so 'medical' and then over in the corner was a little piece of hominess. I immediately began asking which nurse was going to do my IV and with hardly any more questions, they assured me they would just request someone from the IV team to come over from the hospital :) I have determined I must get a look about me once IV's start getting talked about. Maybe its when I go white or when I start shaking uncontrollably, but something sends them the signal that they're going to need help! The nurses said we could do half of the testing before the IV team showed up and then we would stop halfway through for the insertion (gag) of the IV and we would finish up the tests after that.

I layed on the bed....well, I wouldn't exactly call it a bed.....it was a board with a little bit of cushioning on it. And they strapped me down. The nurses had straps around my hips and my belly and my under-boob-area. My shoulders had to line up just right and then I had to raise my arms above my head. Next they proceeded to explain how I must hold completely still for this test. Even when they pulled me out of the tube for the IV, I must NOT move my torso at all. Great. I don't usually hold still for very long. Geoff and I were then given ear plugs. Apparently the machine is so loud that even Geoff had to wear ear plugs....and he wasn't inside the contraption! They layed a nice warm blanket over my body and then they put warm pillow cases on each of my arms. I was told my arms would be the coldest during the test because they were above my head and they kind of stuck out of the tube. I was strapped (literally) and ready to go!

The giant machine lifted my bed and sucked me into the tube. I'm not clausterphobic in the least bit so this test didn't worry me a bit. I have heard stories of people being scared to death about being put into this tube. Not me, the IV was still the only thing on my mind. Or it was the only thing on my mind.....until the machine turned on. HOLY COW!!!!! The imaging machine was so loud that it sounded like someone was jack-hammering right there in the room!!! No wonder we were given complimentary ear plugs!! I was given a series of breathing commands...'Hilary, take a deep breath and hold it'......okay you can breathe now......'okay, now take a deep breath and hold it again'......etc.

Right about the time I was sort of drifting off into dreamland and really getting relaxed the IV team showed up. They pulled my little bed into the hall and reminded me not to move my torso while they administered the IV. Oh crap.....usually I flop around out of control while getting an IV. If I move my legs around wiggle, it seems to take my mind off the attack of my viens. This was going to be tough. The nurse started doing that slap thing where they slap the back of your hand to 'find a good vein'. THIS IS PURE TORTURE!!! I yanked my hand out of hers and the poor little asian nurse kept saying (in her broken english) 'wat wong wit you?' 'why you don't like?'. Then she would look at Geoff and say "wat wong wit her?" " I didn't do noting yet". I always feel bad afterwards for whatever nurse got chosen to give me my IV. But I went easy on this one.....I had to....because I was tied down and couldn't move my torso. The nurses got me cold rags for my head and they rubbed my feet and I prayed while they did their thing.....and amazingly, the IV went in fairly quickly and painlessly.

Crap! I will have to finish this blog later I guess. Its almost time for me to get to work!

~Hilary