The Latest Setback

I'm getting more and more impatient by the day. In fact, for a couple of days, I almost forgot entirely about the transplant. Things are moving so slowly now. The hold up seems to be my possible gestational diabetes back in 2000. My doctor wanted to review my pregnancy records. However, my doctors from back then no longer practice (thank goodness) and their records disappeared. My doctor literally couldn't track my medical health any further back than 2004. Finally, this Thursday, my doctor was able to talk to a lady at Newman hospital in Emporia who thought they had my records on microfish. Remember microfish?? She spent most of her Thursday going thru film and printing off page by page anything she could find about me for the transplant center doctors to look at! What a gal!!

Then here is the email I received yesterday regarding what they found in my old records:

Hi Hilary. We discussed your history & lab results this am in our meeting. I explained the story - - Dr. Matt Reed , Dr. John Smith, and Dr. Charles Shield were comfortable with proceeding forward. The group voted that you could be a donor. After the meeting Dr. Mandayam expressed concerns to my manager with this decision. (He was not in the meeting to hear our discussion) He thought we should send you to a diabetes specialist for their opinion. I spoke with him this afternoon and explained the results I was able to find. He asked if we were sending you to a diabetes specialist. I asked why you should go if you never had an elevated glucose. He thinks we should discuss this with the diabetes specialist. I have not received a call back from the KU Med school regarding my message I left yesterday about an appointment. I will page the doctor to discuss your history with him. No appointment with him yet- -hopefully he will give an opinion which agrees with the other physicians to proceed. Mark

Mark Blackmore R.N., B.S.N., C.C.T.C.
Renal Transplant Coordinator
Transplant Institute Via Christi Health

I can't believe the possible gestational diabetes is causing this much havoc! Especially since I passed all the glucose tests with beautiful results that amazed everyone. I fully understand why the doctor is concerned, but everyone else is ready to proceed. Its just this one guy throwing a kink into everything....

So that is where we are. There hasn't been anything exciting to blog about. There hasn't even been anything boring to blog about. There just hasn't been ANYthing to blog about :(
~Hilary

Before/After

Before the transplant happens, both Hilary and I will check into the hospital on a Thursday. I guess there's a lot of last minute work that needs to be done before the transplant. They do the transplants on Tuesdays.

I always have to go in early due to my Leiden Factor 5...my blood clot mutation. Because of that, surgery is more dangerous for me. They have to wean me off of my coumadin (blood thinner pills) and put me on a heparin drip (blood thinner IV).

Apparently, there's a lot of last minute work to be done. They'll have to put in the IV, make me repeat ALL of my vast medical history to them, and I'll lay around for a few days. I'm not sure what else is to be done.

The transplant will happen on a Tuesday. One surgeon will take the kidney out of Hilary, and the other surgeon will put it in me. We'll both be unconcious for this. WHEW!!! Hopefully, they'll knock me out before they insert the cathiter too. ;)

According to the surgeon, there's a 15 minute wait while they bring the kidney over to me. Apparently, as soon as they hook it into me, I start to pee immediately. So, by the time I wake up, I'll have been peeing for awhile.

Hilary and I are both going to request little buttons for morphin pain killer. They wanted to give me epidural, but I don't like that. I prefer the button pain killer, even though the said the epidural reduces pain better.

They say the donor (Hilary) will be in more pain after the surgery. The recipient will be awake, excited, and bouncing all over the place. You see, after the toxins are cleared from my body, I will get all my energy, both mental and physical, back in full swing. I'm excited for that. Hopefully, as soon as they see the kidney works, they'll take the dialysis tubes out of my chest. It would be great if when I woke up from surgery, everything was back to normal. Well, as normal as life can get for me at this point.

They say that both the donor and the recipient usually stay in the hospital for a good 5 days after the transplant. I might have to stay longer, but we'll see. After that, I have a busy schedule. Asides from being in isolation for at least 4 months, I have to visit the doctor a lot.

For the first month, I visit the doctor 3 times a week. For the second month, I visit the doctor 2 times a week. For the third month, I visit the doctor 1 time a week. Then I go back every few months for a biopsy.

Once Hilary is released, I believe she is free and clear to go home and lay around taking LOTS of pain medication and being waited on hand and foot by her children. :) (hint, hint, nudge, nudge)

Well, time is ticking away. It won't be long now.

Grace and Peace,

-Nat

Advanced Meeting

On Tuesday, I had my Advanced Meeting for transplant recipients. It lasted about an hour. My dad and I went to it. I recorded it on my personal little recording device, so my mom could listen to it later on.

We arrived at the hospital by 8:30 because I had a meeting with the wound care people first. They said the same things as usual about my stump. They wanted to try a different bandage this time. That didn't work out so well. It made my stump bleed. >:( We'll never use that stuff again.

Then, we had a bunch of time to kill before the transplant meeting at 12:30, so we went to visit my sister at her bank. I wore a mask everywhere I went that day, so I wouldn't catch anyone's cold. I also carried a little bottle of Purell with me to keep my hands sanitized.

After visiting Hilary, dad was hungry and Hilary suggested a donut place. It took us awhile to find the Donut Whole, but it was worth it. I stayed in the car while dad went inside. Apparently, he couldn't decide what to get, and since he was SO hungry, he bought 3 different donuts so we could try them all out.

I had never had a donut with bacon on it. It was alright. The maple topping covered up the bacon for the most part. I liked the chocolate rice crispie donut best, but dad preffered the triple chocolate donut. Notice a theme? I didn't get any glazed or anything normal because dad went in by himself. The bacon donut was a suggested by Hilary, the other two were dad ideas. My dad LOVES chocolate.

Anyway, then we returned to the hospital and took a nap in the car. We still had lots of time before the meeting. Finally, the meeting time came around and we went inside to attend.

The meeting was hosted by the same lady that did the first meeting I ever went to. She's friendly and really funny. She keeps you awake even when talking about boring stuff. Some of the meeting wasn't relevant for me as it was intended for people who don't have a living donor.

Most of the information was about life AFTER the transplant. We covered the massive amounts of medicine I'll be on, how many times I'll have to come back and meet with people, and the worst part...how many times I will have to come back and get a kidney biopsy.

A kidney biopsy means getting shot. OK, not a normal shot. First you get a normal shot of pain killer to deaden your side. Then, they take a giant version of an ear piercing gun and shoot you in the kidney. It's quick, but hurts. It goes into you and yanks out a little chunk of kidney that they can run tests on. I'm not looking forward to that.

Other than that, I just have to come and talk to them all the time. It means a lot of time in the car driving to and from Wichita. Lots of gas money, and time off work for my mom to drive me.

Well, that's enough for now. Next time I'll blog about the transplant process and what happens immediately before and after. Later! :)

Grace and Peace,
-Nat

My View (By Braden Sullivan, 11yrs)

This whole kidney transplant between my mom and uncle is a very difficult time for me.

My mom is always going to the nephrologist and I can only imagine the stress my uncle is going through. I always feel bad because my mother shows me her little dots from where she gets shots and tells me how scared she was, and I feel like I should have done something. (even though that was clearly impossible since I am always in school when she is getting shot with a long, bloodthirsty, needle) I am very stressed out almost all of the time, even though I don't have to do anything! But it is also VERY relieving, knowing that after this my uncle has many more years to go.

Nathanial (my uncle) is one of the biggest role models in my life. Me and him are like cheese and crackers. Every Wednesday, from when I was little to fourth grade (when we moved to Wichita) he would pick me up and we would have 'guys night'. Nathanial would take me to a movie, or play a board game,or try out a new video game or, well, you get the point. I have memories of Nathanial and I for as far back as I can remember. I have always looked up to him and seen him as not just my uncle, but also my best friend and my hero. I am very excited to find out that he will be around for a while now!

My mom has been there for me since I was, well, a baby. I feel very happy for her, knowing that she has the chance to do a great and honorable thing like donating a kidney. But i also feel bad for her, because on top of normal, everyday stress, she also has to think, "oh no, what if this happens," or, "what if that happens!?" This also stresses me out. But, I will have fun messing with her rib.(which she gets to keep...BLECHKKK!)

All and all, I am very excited to see how this turns out. With Every inch of my heart, I want Nathanial to get better. I miss the guys nights, and guy trips, and everything we used to do together. I know that if i couldn't pee, getting a kidney would be at the top of my agenda, so i know how this is exciting for him. I wish him the best of luck in the near future so that everything will go according to plan. I want him to know that I pray for him and my mom everyday so that this will be okay.

Please Sign Here ---->

Today I signed on the dotted line. I signed and initialed and signed and initialed and then the doctors signed and then the coordinator witnessed and then.....the deal was sealed. It was like signing for a mortgage.

And its official.

My kidney will be oh-so-gently placed within Nathanial very very soon.

My day started out very early. Geoff and I had to be at the hospital by 7:30. I had been fasting for 12 hours prior to the appoitment so they could test my blood sugar first thing. yay...more needles. What I didn't realize, was that after the initial blood drawing, they were going to trap Geoff and I in a closet sized windowless room for the next five hours with nothing more than a TV and two chairs. B-O-R-I-N-G! A lab tech explained that I would drink this extremely sugary drink (that tasted like orange soda) and then they would draw my blood an hour after the drinking. And then two hours after drinking. And then three hours after the drinking.....you get the picture. I don't mean to sound like a baby, but I am going to whine just a little. I have been sick the last two days...killer sore throat, headache, body aches...just yuck. So prior to todays visit, because I had to fast, I couldn't take any medicine. Also, this meant no coffee for me this morning. Me feeling sick and not having my morning coffee made for a very unpleasant and uncomfortable morning for me. And my poor husband was trapped in there with me! Not only was he trapped in the small, overly heated room with a grouchy wife, but the lab tech actually thought he was my dad! (Geoff had just a rough of a day as I did, bless his heart)

By 12:45 I was shaky and I needed food and cold medicine badly. The lab tech finished the final draw just in time for me to run down to the cafeteria and get a baked potato before heading back up to the sixth floor of St Francis. I have to admit, I was a little anxious to meet this doctor. I have heard he is quite the stiff, old fashioned type guy that doesn't like to BS. I felt quite the opposite upon meeting him. Dr Shields made Geoff and I feel right at ease. He first went through a flip chart that begun like this: Renal Failure Options. Option #1 Do Nothing = death. (note the picture I took of the lovely flip chart above) We went thru the proceedure and he answered all of the questions Geoff had for him. We told some jokes and I found out that when they remove my bottom rib, they will let me actually keep my bone for a souvineer!! HOW TOTALLY AWESOME IS THAT!?!?!?!!!!! I was a little surprised to find out I wasn't the first one to ask if I could keep my rib bone. I just have to think of a good way keep the bone after I get to take it home. I doubt Geoff will let me mount it and hang it on the wall. I dont think it would look good hanging around neck. Oh, I'll think of something....

After meeting with Dr Shields, we met with the neprologist who is very concerned about my gestational diabetes. Although, my glucose test came back almost perfect (even better than most normal people) he still had his doubts knowing I had gestational diabetes. He recommended that I see a diabetes specialist prior to the surgery so that he can look over my records and make a recommendation. Just between you and me, even if they say I am in a higher risk catagory for diabetes, it won't stop me. I've made it this far with no problems, I'm sure I can skip some sugar and exercise regularly and be just fine the rest of my life. But I understand, from a neprology side of things, why the doctor wants to at least educate me.

Its been a long day. And I'm so glad to be back home! Now I can take my cold medicine and then go watch my daughters concert and then try to get some rest.

Peace Out Bean Sprouts~
Hilary

All the Lose Ends

I don't have much to blog about today, but its been a few days since the last update so I'll fill everyone in. Nathanial is headed to Wichita today (face mask and hand sanitizer in tow so as to avoid swine flu!). He is attending his final 'Advanced Transplant' class in the transplant center at St Francis. The whole family attended one of these classes last year when we first started planning. The class is EXTREMELY uncomfortable. They talk about flank incisions, and they talk about getting a tube shoved in your pee hole, and they talk about the epidural, and they talk about medications after the surgery, and they do their best to really really talk you out of going through with it if you aren't a 100% dedicated. I remember getting grossed out enough that I lost my appetite--and, FYI, it takes a lot of work to make me lose my appetite!! I remember them going over some statistics of survival rates and things like that. They also talked about the financials of the process. So, today's meeting is a follow-up to that original meeting for Nathanial.

I believe Nat also meets with the wound specialist today. For those of you that don't know, back when Nathanial went septic a few years ago, he also lost half of one of his feet. His entire foot had turned a nasty shade of green/black with oozies coming out of it and mom and dad had to make the decision (while Nathanial was still in a coma) to go ahead and remove part of his foot to save the rest. He lost both of his calves and his nose and a few fingertips, but the major thing was his foot. His foot still gives him problems to this day. He had another surgery just a few months ago to shave off a little more of the foot bone and the doctor added some shark cartlidge to help the foot heal better. Apparently, when you don't have kidney function, you don't heal well from other illnesses. For three years, Nathanials foot wouldn't heal from the original surgery. It was very painful for him. He couldn't walk very far or for very long at a time. He had to keep his foot bandaged at all times and change his dressings often. It was all very sad. Then just a few weeks before my wedding is when he had surgery to add the shark cartlidge. We were all very impressed with how quickly he was up and walking after this proceedure. Now he has special little shoes that go around his stub to make him walk better! But back to my original thought--today he follows up with the wound care doctor for his foot. They have to make sure the foot is doing alright before proceeding with the transplant.

I don't have any more tests or meetings until Thursday. Thursday I have to take the entire day off work. So far, I have managed to just take bits and pieces of my work days off for all my tests and meetings. The bank has been really good about working with me on my schedule. This Thursday puts a bit of a kink in things at work because we have several people gone, but no one has given me a hard time about not being here. Everyone at work seems to understand, and even though they don't really know Nathanial, they are all cheering for him. I know its hard on people that aren't part of the family to really wrap their mind around how important this is.

I have been scheduled a glucose tolerance test on Thursday. I guess they don't usually do this test for the donor, but because I had gestational diabetes when I was pregnant with Corynne, they want to make sure I don't have diabetic tendencies now. Then just yesterday I got a phone call telling me that I not only get to meet with the Nephrologist Thursday, but I also get to meet with the Surgeon!!!! So that is HUGE news! On my checklist of things left to do, that completely wraps me up. I am hoping we get to schedule the actual date of the transplant Thursday! We shall see....and when I find out, believe you me, I will blog about it! ~Hilary

Time is tickin' away...

Everything is mostly done. It's only a matter of time before the transplant happens. To be quite honest, I haven't really thought much about it. I get nervous if I think about it too much. You know, going to the hospital, getting poked, pain medicine, etc... I think it's part of my body's natural defenses to shut down thinking about that stuff.

I came upon an insight several years ago when all this medical stuff started happening to me. I would literally make myself sick, worrying about stuff. The more I thought about it, the sicker I got. My stomach couldn't handle it. I would worry myself sick.

After talking to God about it and reading the Word, I learned something. This isn't my life. I have no claim on it. That's a good thing, since all my decisions seem to end up hurting me in the end. So, I turned it over to God. It's sad that I had to be so far down in order to look up.

Every day is a gift from God. I only exist because He wills me to exist. Every heartbeat happens because He desires it to happen. I live simply because He has decided that it is so. I turned my life COMPLETELY over to God that day. I told Him that I was giving up trying to take and claim what never belonged to me. It was up to Him to do with me as He pleased.

I know cognitively that He and He alone knows what is best for me. I had known this for many years, yet I hadn't ever completely given up that desire for control of my life. This was an INCREDIBLY freeing decision. It is amazing the freedom found in releasing control of that which was never mine to begin with.

Since that day, I have been through tremendous times of pain, suffering and near death experiences. I have yet to worry about any of it. It doesn't matter in the slightest what happens to me. I know God has a plan, and I know He will do it no matter what I think about it. I will live here in the shadowlands as long as He desires me to do so. When He says it is time for me to go home, there's nothing I can do to delay it. God IS in control.

I haven't gone home yet. This means that God isn't done with me here in the shadowlands. Apparently, there's something I still have to accomplish here. Don't get me wrong. Times have been hard enough that I have often prayed for death. I longed to be clothed with my "heavenly tent" as Paul put it. But God said, "Not yet." I still have work to do. I'm not completely sure what it is that God wants me to accomplish before I get to go home. It sure would be easier if He would just tell me, and then I could do it. Perhaps not knowing forces me to show more faith in His providence.

Anyway, I tend to ramble on forever. The kidney transplant is coming up soon, and I'm not the slightest bit nervous. I really don't think about it that much. I spend more time planning on what I'll be doing AFTER the operation and my body has more energy. I'm working toward a goal that I believe God has set before me. Something that my particular make up has built me to be able to accomplish. That is what consumes my thoughts and desires. Until next time...

Grace and Peace,
-Nat