Saturday, August 30, 2008

Wanna know something cool??

When you get a lung transplant, they just remove one or both lungs (it was both for me as it is with all transplanted CFers) and replace them with the new ones. Simple, huh?

When you get a kidney transplant, they don't remove anything (there are a few exceptions to this rule, but I'm not one of them). They just add the new kidney somewhere down in the lower abdomen. Sounds strange, but that's what they do. My question is... Where are they going to find space????

Do they just shove something else out of the way??? I'll have to be sure to ask my surgeon this question when I meet with her in 2 weeks.

Here's a pic...

Prayer needed

One of Jason's coworkers (Joe) was in a bad car accident 2 days ago. He was driving in the rain, and he hydroplaned and hit an electric telephone pole. His wife died instantly, and Joe has been in the hospital recovering from his injuries. He and his son really need your prayers now as they deal with their traumatic loss. Thanks guys!!

Wednesday, August 27, 2008

Photographer in the making!

Photography is something that has always interested me, but I have never taken the time to really learn about it. After talking to my cousin last Christmas, and hearing how she loved her photography class, I started thinking about taking a class or two. She is now on her 6th class, is learning photoshop, and absolutely loves it. I've been looking into some photography classes offered around my area, and am seriously thinking about it. I definitely will wait until after my kidney transplant though, because I would hate to be halfway through the semester and have to miss the rest.

Since my camera was my birthday present (and possibly my Christmas present too), it will be awhile before I can get the lens I want for my camera. Here it is on Amazon! Since I'm not very patient, I really want it now, but yeahh... I'll have to wait.

My Blog Design

I'm still working on my blog design! Yes, I know it's taking a long time, but I want it to be perfect. I originally looked at the ones offered online, but really wanted to create my own. With my husband's help, I'm getting closer. He is the computer genius.. definitely not me.

I'm hoping to debut it soon!

Tuesday, August 26, 2008

The Twilight Saga

I'm almost finished with "Breaking Dawn", the 4th and last book of the series. If you haven't read these books, you really should!!!! They are awesome. You can buy all 4 books by Stephanie Myers at Click here to buy the first book of the series, "Twilight".

More Allergies

I am allergic to so many medications now. They take up half a page in my chart! My nephrologist started me on IV iron last week, and I had chills that night, and itching for 4 days afterward. Yesterday, he switched it to another IV iron, and after pre-meds, and a test dose, I had very bad nausea that required some IV Phenergan. The infusion center called my doc and he said that I couldn't receive anymore IV iron. They are going to put me back on oral iron (a new kind with less GI side effects) and see if that works. They had upped my dose of Procrit (a weekly injection to help increase red blood cell production), but it only works if you are getting the iron supplements. My hemoglobin was 7.9, and it's supposed to be between 12 and 16.

I have my bronchoscopy on Thursday to see why my lung function dropped so much over the last 3 months. My doc seems to think it's because of fibromyalgia, anemia, and basic fatigue, but they will be checking for infection and/or rejection on Thursday!

Casey had her first day of school yesterday. She liked everything about it except her math teacher, and he was the one teacher who I thought would be "fun" when I met him at open house. That goes to show you what moms know!!! She was excited about seeing her friends again, but not very excited about all of the homework that goes along with it. This weekend, Jason and I are taking her to a German restaurant in Charlotte. It's definitely her favorite food now! I have cooked it at home, but it's nothing like getting it an authentic German restaurant.

Jason's leg is healing from the jellyfish sting. The infection is clearing up nicely. He had to take short term disability (which he was not happy about) in order to comply with the doctor's orders regarding this infection. It's a long story that I won't go into, but he goes back to work on Thursday. I think he is getting bored at home, even though I have had a very long to do list for him since his leg has healed enough for him to move around. Getting a house ready to sell is hard work. I can't wait to get it all done!!

Monday, August 25, 2008

Bob Barr on The Colbert Report

Jason and I tape every episode of The Colbert Report! It's a great news show with a comedic overtone talking about real headlines.. with a couple of punch lines. If you like politics at all, you should take the time to watch a show or two. Stephen Colbert will keep you in stitches.

Bob Barr is running for President in case you didn't know. He is on the Libertarian ticket!! So far he'll be on the ballot for at least 38 states.. *yay*!


Watching the sunrise on the beach... yeah, for all those who know me, I DID get up that early. :)

If you click on the picture, it will enlarge it for you. It really is beautiful!

Saturday, August 23, 2008

To do list

There are still so many things left to do before we put our house up for sale. We have more touch-up painting to do, some landscaping to do, we need our roof cleaned, our carpets cleaned, we still have to finish packing up some things and move them to storage along with some furniture, and we have some cleaning to do around the house.. the "eat off the floor" kind of cleaning that you have to do before showing your house to anyone. We have done a lot already, but I still feel overloaded at what's left.

We haven't been back to look at anymore houses yet. There was a house that went up for sale right before we left for the beach. It was a great deal and was VERY close to Casey's school, but it sold while we were gone.. in only a week. I knew it would go fast, but was surprised it sold that fast with the housing market the way it is. I know it wasn't meant to be, but it still makes me sick that we missed out on it.

Well, I'm off to do some more packing in the office. That has recently become our "catch all" room, and therefore has a lot of junk in it. Here is another pic of Casey from the beach. I used the antique affect that's available in iphoto on my mac. I really like what it does to pictures.

Sunday, August 17, 2008

Fun at the beach

Beach Trip '08

It was a really great week at the beach with my parents, my sister and her family, and Jason, Casey and me. North Myrtle is MUCH more crowded though than I remember. We are going to the OBX next year instead. It's quieter and also has our favorite restaurants there.

I was able to see 2 of my very dear friends from Virginia, Nicole and Rhonda, while I was down there. We ate at some really great restaurants and had wonderful weather. Casey and Jason both love German food, so we found this "hole in the wall" German restaurant. They LOVED it! I prefer seafood at the beach. We did get plenty of that while we were there.

The pool area/hot tub area was very nice, but the water in the pool was freezing. I wasn't able to do more than sit on a float or take a quick dip because it was so cold. It didn't bother the kids though. They are immune to the ice cold temperatures I believe.

We visited the Alligator farm, did a little shopping, bought a kite and had fun with it on the beach, and of course spent most of our time on the beach and by the pool. Casey and her cousin Caroline read most of the time. The adults also got some reading time in. It was relaxing and a lot of fun, but I'm happy to be home.

This week is going to be a busy one as I start IV iron tomorrow at the infusion center in Charlotte, have a bronchoscopy this week at Duke, and we also have Casey's open house at school. She starts back a week from tomorrow.

Saturday, August 16, 2008

Casey at the beach

I'll blog about our trip tomorrow when I'm not so tired, but here are some pics of Casey that I took. I had fun with my new camera... 469 pictures worth of fun!!

Thursday, August 7, 2008

Long day... good and bad news!

I saw my lung transplant pulmonologist today at Duke. I was due to see him soon anyway, but my nephrologist thought I should see him this week, since I had some dehydration and fever. He is essentially my primary doctor.

We discussed a lot today. First of all, he thinks that my sinuses are rearing their ugly head again. He seems to think that's the likely source of my fevers. There are 2 things that I can do for that now. I can have surgery of course, which is going to be due again sometime in the future.. I'm just not sure if I want it before kidney transplant. Then there is IV antibiotics. For me, that means being hospitalized to be desensitized, because I am allergic to all antibiotics that treat the bacteria I have in my sinuses. This will most likely be the first route we take. He wants to see how my fevers are in the coming weeks.

We also talked about my anemia. He is going to let my nephrologist take care of that since he is closer to my home, and it will require me to get IV iron once a week. He said with my antibody level already so high, that if the IV iron doesn't work, he won't hesitate to give me a blood transfusion before transplant. He said the transfusion might give you more anti-human antibodies (those antibodies that make me so incompatible with the general population), but it's not going to make that much difference with me since most transplant patients have an antibody level around 5 or 10% and mine is around 90% already.

Speaking of antibody levels... I was told when I got my lung transplant in 2001 that I would never be able to receive a second lung transplant if I ever needed it. This was because of my antibody level which required me to get lobes from my relatives instead of cadaver (stranger) lungs (and the fact that they had used the only 2 relatives I was compatible with out of approx 40). I hadn't really thought about that over the years. I still accepted that to be true. They had tried many rounds of plasmapheresis to try and reduce the antibody level prior to my lung transplant, but that didn't work. Since I seem to be having some chronic rejection (explained below), I thought to ask him about that today. He told me that now they give the drug Rituximab, and it does a great job of lowering antibody level. For those of you who keep up with Tricia's story, you may remember she was on that for her lymphoma, but it didn't treat it like they hoped it would. My doc didn't seem to think that I would get to the point of needing another transplant, but I do at least have that hope now.. that if I needed it, I could get it. It's the first time I've ever had that hope. :)

Ok, about the chronic rejection. I started some last year. I was put on some additional anti-rejection medications to treat it, and my lung function seemed to respond to it and got better. Today, my numbers looked pretty bad. My doc seems to think that its due to my fibromyalgia, fevers, kidney disease and general fatigue more than anything. He says that just about all transplant patients who are almost 7 years post-transplant, like me, will have some chronic rejection. They may never know it, but it's there. You can read here for a simplified description of acute vs. chronic rejection. Because my lung function has dropped, my doctor wants to do a bronchoscopy on me when I return from the beach. It's something that post-transplant patients get plenty of, so it's no big deal. It checks for all kinds of infection and acute rejection and can sometimes detect chronic rejection.

My nausea was a big topic of the day. My doc wants me to discuss with my nephrologist which would be best.. transplant now, or transplant after a few months of dialysis. Studies do show that those kidney transplant recipients who haven't had dialysis, tend to do better than those who have, but those results could solely be based on the fact that MOST people who get dialysis first, are doing so because they have a long wait for transplant, and their kidneys are almost not functioning anymore. My reason for dialysis would simply be to help build my appetite and give me some strength.

There you have it. I know I'm quite long winded lately. Sorry for that, but I hope that explains everything!!


Just sitting in the waiting room at Duke waiting, waiting, waiting (and having fun with the Mac)!!

Wednesday, August 6, 2008

Florida, Fluids, and Fatigue

Well, we managed to make it to Savannah and Florida last week. We spent one night in Savannah. I had never been, but had been told it was a small Charleston. It really was!! It was very charming. We dined on the riverfront at the Chart House Restaurant and had a very relaxing evening. The streets all have squares every few blocks which reminded Jason and me of Venice. The houses were very old and beautiful like the ones in Charleston. I wish we could have stayed there longer.

We headed to Florida and went from coast to coast. Jason had never seen the Gulf Coast, so we went to Tampa and St. Pete Beach and then came back to Daytona. The difference in the water temperature on each coast was amazing. St. Pete Beach felt like bath water.. it was THAT warm. Daytona was as cold as any south Atlantic beach.. very cold because of the north Atlantic waters drifting south. I have stayed in St. Pete Beach many times before, and we are planning on going back next year and taking Casey for a week. She was in the OBX all week with her dad and his entire family last week. She had a blast. Casey's dad flew them out there, so they were able to get there in 2 1/2 hours instead of 7 1/2. Because the roads going to the OBX aren't that great, it takes sooo long to get there from where I live.. which is in the same state.

We will be heading to the beach with my family on Saturday. I am a little hesitant to go away after the week I've had. Monday morning I had an appointment with my nephrologist in Charlotte. When I woke up, I wasn't feeling well, but just thought I hadn't gotten enough sleep. After arriving at the doc's office, I started getting very dizzy and feeling like I was going to pass out. They took my blood pressure and it was 80/40. The doc came in and said I was very dehydrated, so they gave me a liter of fluid there in the office. I was so thankful they had the supplies and the staff there available to access my port. We were there for 3 hours so that I could get fluid. He then asked if I was feeling ok, and I said that I was much better, so he sent me home.

Later that day, I started running a fever, and was feeling horrible, so I eventually went to the ER. My new port had been more sore than the ones in the past, so I thought it might have become infected. They just said I was dehydrated again and had some kind of virus they thought. They gave me more fluids. They also said my hemoglobin was only 7.7, which is very low. This is a major reason I have been having so much fatigue. My nephrologist called again the next day and said that they were going to start me on IV iron when I got back from the beach. They won't do a blood transfusion, because it can interfere with my compatibility with my mom (as far as her being a match to me in order to give me a kidney).

Tomorrow I am going to Duke for a follow-up appointment. My weight has gotten so low that I'm afraid he is going to recommend another feeding tube. I had a g tube prior to my lung transplant that was removed about 3 months post-transplant. My nephrologist talked about putting me on a few months of dialysis soon, to help me gain some strength and some weight before my kidney transplant. I will see him again in a couple of weeks to discuss that.

We just bought a new camera and I am so excited. It's the Canon Digital Rebel XSi. We have been without a camera for way too long now. We have a really cheap one that my dad found at a yard sale, but it doesn't take good pictures of course. The one we bought is very nice, and I just hope I can figure out how to use it. I will probably be reading the manual all the way to the beach. Jason prefers to video everything, but I would rather have pictures. The video camera is basically his and he says the camera is my birthday present.

That's all I've got for now!