Henry Cho

I just got an email from Henry Cho, one of my favorite comedians, sending me prayers for my upcoming transplant. How awesomely cool is that? Now, if I could just get a hospital visit from Hugh Laurie.. all will be right with the world. :)

Smaller government, more freedom

Please don't confuse the Libertarian Party with being "liberal". Unfortunately, people see the word Libertarian, and automatically think that. It represents liberty!! We are NOT just a 2 party system!!!!!!! I think that voting for either Obama or McCain is just voting for the "lesser of 2 evils". Why should we have to do this? They both seem to change their stand on the issues regularly, according to what they think we want to hear.

If you vote for the lesser of 2 evils, aren't you still voting for evil?

This is from the Libertarian Party website:

What is The Libertarian Party?

The Libertarian Party is your representative in American politics. It is the only political organization which respects you as a unique and competent individual.


America's Heritage

Libertarians believe in the American heritage of liberty, enterprise, and personal responsibility. Libertarians recognize the responsibility we all share to preserve this precious heritage for our children and grandchildren.


Free and Independent

Libertarians believe that being free and independent is a great way to live. We want a system which encourages all people to choose what they want from life; that lets them live, love, work, play, and dream their own way.


Caring For People

The Libertarian way is a caring, people-centered approach to politics. We believe each individual is unique. We want a system which respects the individual and encourages us to discover the best within ourselves and develop our full potential.


Principled; Consistent

The Libertarian way is a logically consistent approach to politics based on the moral principle of self-ownership. Each individual has the right to control his or her own body, action, speech, and property. Government's only role is to help individuals defend themselves from force and fraud.


Tolerant

The Libertarian Party is for all who don't want to push other people around and don't want to be pushed around themselves. Live and let live is the Libertarian way.


Bob Barr will be representing the Libertarian Party in the presidential election!!!!!!!!! He's got my vote!!!! Some people seem to think that this is "wasting" a vote, but if we continue to think like that, then this country will never change!!!

1:00 a.m.

Well, it's officially my birthday.. at 1:00 a.m. this morning, but we celebrated it yesterday. 38 years is a big accomplishment for someone with Cystic Fibrosis. I've known older CFers than that (and still know some), but unfortunately, I've known far too many who have only made it about half my age. I'm so thankful for all the years that God has given me on this earth, and for my wonderful family and friends!! Who could ask for a better birthday present than that???

Yummy Birthday!!!!!

Jason and Casey took me to The Melting Pot for my birthday. It's sooooo awesome. We fasted all day, so we could eat a lot tonight. Yes, we indulged!!!

HILARIOUS Stephen Colbert video

Economics of petroleum simplified! Remember to stop my playlist before watching.. you won't be disappointed!!! :)

Casey's new blog

My daughter Casey started a new blog. Here is the link if you are interested.

Random Fun

Can you tell we have nothing better to do on this rainy day??

Decisions

I spoke with my nephrologist in Charlotte this morning. He agreed that I go ahead with transplant and skip the dialysis. That's 3 docs now that agree (well really 4 because my pulmonary transplant doc suggested this a month ago). I'm really feeling like this is where God is leading me. I have peace about it, as do my husband Jason, daughter Casey, my mom, and the rest of my family.

I know that this transplant will not be nearly as traumatizing to my body as my double lung transplant. It's still a major surgery of course, but I keep telling myself that I've been through worse and survived, and I'll come through this just great too. I couldn't be in better hands than the docs at Duke.. that's for sure!!

I will talk with the transplant coordinator on Monday. She is out of town the rest of this week. We will then set a date. I am thinking the first or second week in November (I really don't want to do it on Halloween). I think that should work for them according to my conversation with her the other day. I'll post the date as soon as I have it.

I will have to go into the hospital in about 2 weeks for desensitization to some IV antibiotics that I will be on for several weeks prior to the transplant and about a week following the transplant. I still have bacteria (related to Cystic Fibrosis) in my sinuses that could potentially cause a problem during and immediately following surgery, so they want to make sure I'm covered with some pretty strong antibiotics to keep these at bay. I'll only be in the hospital for this for about 3 or 4 days, and then I can finish the IV's at home.


I want to thank everyone for your prayers, comments, and good thoughts! They mean so much.

Am I ready?

Yikes!!! My transplant coordinator at Duke called with my kidney function test results. It's at a level now where they want to do transplant as soon as possible. She said "We can schedule it for Friday, October 31". I'm like.. "What???????????? That soon??" The docs at Duke seem to think that peritoneal dialysis may be a bad idea for me. Since I'm so small, and this type of dialysis puts fluid in your abdomen to sit and collect the toxins that are drawn out of your blood, they are thinking that the fluid may cause me some respiratory problems. Because of the volume of fluid that is put in your abdomen, it may compress my lungs and decrease my lung function. They want me to discuss this with my nephrologist in Charlotte, but Duke docs are voting to skip the PD and go straight to transplant.

Mentally, I have been thinking January..ish for transplant. Hearing them suggest I get it next month is a little overwhelming at the moment. Plus, Jason only has a day or two left of vacation this year. If we waited until January, he could take vacation to be with me after transplant. If I got it this year, he would have to take days off without pay, which is not something we really want him to do with a lot of new medical bills coming in.

God is in control. I know that things will work out for the best... they always do. I would appreciate your prayers now. I need to make the right decision... for me and for my family. My mom is ok with any date. She's the best!

*Yay* for female surgeons!!

Well.. I met with the surgeon who will be performing my kidney transplant. WOW.. all I have to say is GO FEMALE SURGEONS. Not only did she have a great bedside manner (which is more than I can say for most of my previous surgeons), but she said she makes her incisions smaller than her male counterparts. She said she knows that we all care what we look like, and she tries to take that into consideration (I've never had a surgeon or radiologist care about this). Not that I don't already have tons of scars as it is, but at least she is being thoughtful and trying to minimize what will be another "victory scar" for me. It will probably be about a 6 or 8" across my lower abdomen.. not bad compared to the lung transplant scar I have.

I also met with the transplant nephrologist at Duke. This is the doc that will handle my care for awhile after transplant (before I return to my nephrologist in Charlotte). He wants to see what the kidney function test will show (results back tomorrow I think), before he decides on a date for surgery. He went into a lot of detail about that, but I will elaborate on that when I post the results. The test will basically give them a definitive answer as to how much kidney function I have left. The levels they usually check in my blood can only tell so much.

He is also thinking that a lot of my problem with nausea/weight loss could be due to a medication that I was put on for chronic rejection of my lungs last year. They drew my blood to check the level of that medication to see if it's high. It's not a medication that they usually check the level of, so it has to be sent to the Mayo Clinic to be tested. I won't get the results from that for awhile. He's thinking it might be a high level circulating in my blood because of my low kidney function. If it's high, he'll talk to my lung transplant pulmonologist to see if he will lower it.

The day went by pretty fast and we got home early. I was so happy about that. I didn't have to wait long at all. That's really a first for Duke!!

Jason was camera happy today.....



Contemplating my next chess move while we wait for my next blood draw. Jason beat me, but it was a close game. :)




I'm so thankful for ports. They save me from getting stuck so much!!




Riding the tram at Duke. They were supposed to stop running the tram in August, but thankfully they didn't!




A better pic of Jason... he actually looks sober in this one. Haha! Poor thing had to work until 2 am and then get up at 5:30 to take me to Duke.. he was exhausted.

Duke day of appointments

Waiting on a kidney function test, and to see the transplant surgeon and transplant nephrologist.



Where do these guys come from?

Boo.. no Hugh!

Well boo to the Emmys. Not only did Hugh Laurie not win for best actor in a drama series, but House didn't win for best drama series either. And to top it off.. Hugh wasn't even at the Emmys. So much for the reliable information that he was going to be presenting an award. The only thing I enjoyed was seeing The Colbert Report win an award for best writing. Thankfully, I Tivo'ed it and fast forwarded a lot of it.

UPDATE: Hugh had the flu!!!! :(

Hugh Laurie at the Emmys

This is Hugh Laurie presenting at the 2006 Emmys. It's absolutely hilarious. He is up for an Emmy award this year, AND will be presenting another award. I'll be watching it just to see him!! It is on Sunday night (9/21) at 8 pm eastern.

Once again, you'll have to stop my playlist first to hear the video.

Don't hate me because I'm skinny!

Which looks better to you????????????






In this world of "you can never be too thin", I find that some people hate me before they even get to know me. Yes, it's because I'm skinny, and they think that they should be too. What they don't realize is that I WANT curves, I WANT a nice big behind, I WANT to be able to eat my meals without the feeling of wanting to throw up.

I'm 5'5" and, as of this morning, I weigh 95 lbs. It's very difficult to find clothes that fit me without looking like I'm 13 years old. I want to look sophisticated! I don't want to look like a toothpick anymore!!!!! AND.. I don't want strangers or friends reminding me how skinny I am. It's not a good thing. It's not something to envy. It's not a reason to hate. Simple.

I actually had someone say to me one time... "I hope everyone here isn't this skinny." (She had just moved to the area). I just smiled, but what I really wanted to say was... "Nope!!! Just the REALLY sick ones." In the first 2 seconds of meeting me, she judged me because of my size. And I've had it happen since then. How wrong is that?

In college, I was a little pudgy.. to say the least. I dieted just like all of my friends did. I wished for skinniness. Be careful what you wish for.. you might just get it!!

Quote of the day

So true...

"Almost dying changes nothing; dying changes everything."

-Gregory House, MD

7 things about me!

I got this idea from Nate's blog. Thanks Nate! I'm not sure why it's 7 things though... why not 5 or 10?? Anyway, here goes...

1.) I am obsessed with white teeth. It's the first thing I'll look for when talking to someone (maybe because I'm a lip reader). I drink everything through a straw (except coffee) so that my teeth won't stain. I'm not sure where this came from, or how this evolved, but it's something I can't shake.

2.) Driving scares me! I used to not think anything about it, but since the meds have slowed my reaction time down, I worry that someone is going to pull out in front of me, or stop suddenly, and I won't have time to react. I still drive, but prefer someone to drive me to Duke or Charlotte to my doctor's appointments, or any other long distances.

3.) I have a hair phobia. I can't get in the bathtub because I almost have a fear of being in there with a stray hair. I will only take showers. LOL. When I go to a hotel room, the first thing I do is pull the top sheet back and "inspect" the bottom sheet for stray hairs. If there are any, I take a lint brush and get them off. It's also why I don't like cats or dogs that shed. I have a toy poodle that loses hair more like a person instead of a dog. I just use the lint brush on the furniture. If I find a hair in my food (even my own), that's it.. I'm done eating.

4.) I am always cold, but would prefer to live in a northern state. I love the New England states, but yet, I freeze when it's below 70 degrees. I also love rainy days, and fall and winter. Summer depresses me.

5.) I am very blessed to have a lot of friends I consider my bffs (best friends). They are all originally from Virginia. Some still live there. We have all been through a lot together, and will always be there for one another!!

6.) I have a thing for the British! 'Nuff said!!

7.) My medical problems really don't bother me that much. It's a way of life you get used to. As long as I can hang in here for my daughter.. I'm ok with it all. I totally agree with the words from Corey Hart's song "Never Surrender". I added it to my playlist. For all you youngsters out there.. it's a great 80's song.. but weren't they all??

Getting educated...

We had to go back to Charlotte this morning to the dialysis center to watch a training video and get "introduced" to all of the supplies/equipment I will need for home dialysis. I really didn't learn anything I didn't already know, but it was required!!! I have a consultation with the surgeon on October 2 to talk about catheter placement. The surgery will probably be a week or two after that, and then I'll start dialysis. I'll have to spend about 4 or 5 days in Charlotte at the dialysis center to train, and then I'll be able to completely do my dialysis at home. At first, I'll only be hooked up to the machine at night for dialysis. Hopefully that will do the job, and I won't have to do it more often than that.

One of the first things that you lose a taste for with kidney disease is meat. It's a natural reaction, because your kidneys can no longer handle all of the protein. BUT.. it's also the one thing that your body needs if you are in kidney failure.. haha. Makes no sense really, but I do hate the taste of meat.. for the most part. I started protein shakes recently, and I'm able to tolerate them without too much nausea. They are hoping that with dialysis, my appetite will increase. I'm not going to get the same results I will with transplant, but it should help me feel better and get me more ready for the surgery.

Peritoneal Dialysis

My nephrologist decided today that I need to start peritoneal dialysis (PD). He thinks I should do dialysis until early to mid-winter, and then get my transplant. He is thinking December or January for transplant, but I will find out more about scheduling when I meet with the surgeon at Duke next week.

Jason and I attend a PD class tomorrow morning in Charlotte to learn about it. I will then be scheduled for surgery to have a catheter placed in my abdomen for dialysis. This is different than hemodialysis where you have to go 3 times a week to a clinic/infusion center to have dialysis. I will be doing PD at home every night. My nephrologist didn't think I'd tolerate hemodialysis very well because of my consistently low blood pressure. He thinks the PD will help increase my appetite and get me in shape for transplant.

Ice Skating fun..

Well, for Casey and her friends at least.. not for me. After falling and breaking my arm the last time I went ice skating, my doc forbid me from ever going again. It's not as fun sitting on the sidelines. :(

Where I was... Where were you?

I know that we all know exactly the place we were when we heard about the tragedy on 9.11.01. I had been in the hospital for about one week, and was scheduled to be discharged that day. I had this student nurse come in that morning and want to do a history on me (it was her first day of clinicals), so I agreed. I knew I wouldn't be discharged until early afternoon, because they had to get home IV's set up with my home healthcare company, so she would have plenty of time to get all she needed before I had to leave.

After the student nurse had taken about 30 minutes of my history, a nurse came in the room and told us to turn on the news. It was then that we saw that the first tower had been hit. Everything was kind of a blur after that, but I remember she continued taking my history, trying to fill out that horrible packet of papers she had. We had the news turned down low, but saw when they announced that the 2nd plane had hit the 2nd tower. Of course we were all thinking then that our country was under attack, but this poor girl was STILL trying to take my history. I couldn't concentrate on what she was saying.

Having gone through nursing school myself, I know how eager you are the first day of clinicals, so I tried to sympathize with her, but at that point I just wanted her to leave. Her nursing instructor finally came in and told her that all of the students could go home. I was so thankful. My mom, Casey, and I continued to follow the story in the hospital, on the news on the way home, and then at home that evening.

Where were you when it happened? I'd love to hear some of your stories.

9.11 Remembrance

Remember those fallen, and please take the time today to pray for those left behind.

Monday smiles

Night at the ER

I had to go to the emergency room yesterday around 5:30pm. I woke up feeling bad, and was having some dizziness when I was walking around. I laid down and started feeling better, and then it started again when I got back up to do some things. There were several times yesterday where I felt like I was going to pass out. I knew it was my blood pressure again, and I knew I was dehydrated, so I laid down, elevated my legs and starting sipping some water. I was also very nauseous so I couldn't drink that much without the feeling of wanting to throw up. 

Jason took my blood pressure and it was 90/70. I laid around the house for about another hour, and then got up again hoping I could get ready to go to the night service at our church. Everything went black for a moment walking back to my bedroom. I knew then that it was time for an ER trip to get some fluids.

I got to the back pretty quickly, but they were so busy, that it took 4 1/2 hours to do everything they needed to do. They always run diagnostics even though I know what I need. They just want to make sure they aren't missing anything, so of course, I had to get a chest xray, an EKG, and blood work. I also needed Phenergan for the nausea that I'd been having all day, and some IV morphine for the fibromyalgia pain. Whenever I'm dehydrated, my fibro pain gets so much worse.

We got home a little after 10... just in time to get Casey to bed. She loves coming to the ER/doc/anything medical with me. She wants to go into the medical field when she grows up and she can't get enough of it! Not that she wants her mom sick... but if I've got to go, then she wants to go watch. :)

It is amazing what a little bit of fluids do for you. I felt so much better when I got home. I still had some pain and a little nausea, but I didn't feel as weak, and I could walk around without feeling like I was going to faint. I am going to try to drink a lot of water today, so this doesn't repeat itself anytime soon.

I find out if I will be getting dialysis next week. I see my nephrologist on the 16th about it. We will make the decision then. Since my weight is down even more, and my strength has also been down, I'm thinking he is going to lean toward some dialysis before transplant instead of just jumping right into transplant. I think he said I would only need a couple of months of it.

Today's Pondering

Why is it so easy to shop when you aren't feeling good, but cleaning house would take WAY too much energy??? hmmmm...

Bronchoscopy and such!

It's been a crazy, busy weekend, so I haven't gotten around to posting about my bronchoscopy/doc appt last Thursday. Since I had to go see the doctor that day in clinic after he did my bronch, I got to Duke early to get my blood work, chest xray and pulmonary function tests (pfts) done. I had just done all of this 3 weeks earlier, and that's when they determined that I needed to be bronched because my numbers on my pfts were very low for me. I was very tired last Thursday, because I had only gotten about 2 hours of sleep and then I had a 2 hour drive to Duke, so I just knew my numbers weren't going to look good. I was wrong!!! Here is the improvement on my lung function in just 3 weeks.....

8/7/08              FEV1     67% (my normal is 75% or higher)                                  FEF25-75%    47% 

 

8/28/08           FEV1     79%                                                                              FEF25-75%    71%

All of the other numbers were higher too, but these are 2 of the most important. If your FEF25-75 is low, then that might be an indication of chronic rejection. My pulmonologist was amazed at these results. He said that he can never figure me out anyway. :)

He went ahead with the bronch even though my numbers were up, so that he could go ahead and "clear" me for kidney transplant. I had no infection or rejection!

We discussed my insomnia... it seems to be one of those problems we are always discussing now. He gave me a new med that didn't work, so I got ANOTHER new med yesterday, and had my first good night's sleep last night, so hopefully this is the one.

My weight is down to 97 again. I was up to 102 at one point, but now I just think that was fluid instead of mass.. unfortunately. I see my nephrologist next week on the 16th to discuss whether or not I want to have dialysis before transplant. I also see the surgeon at Duke on Sept 22nd. She will be the one performing my transplant. I am not sure if a date will be scheduled then or not. If I decide to do dialysis first, then it probably won't be scheduled yet. I'll keep you posted on that.

Other than that, I enjoyed this weekend with Casey so much. We ran around and shopped and played for 2 days (and I probably overdid it) and then we hung out at home (mostly b/c of my pain) for 2 days. I didn't feel like getting online much, plus I like to save my blogging when Casey is sleeping, at her dad's, or in school. I hate taking time away from her.

I was just bragging last week to a friend of mine how my fibromyalgia might be going into remission like it did last year, but this weekend told me... "NOT YET". Unfortunately, I was in a lot of pain all weekend. I will be seeing the rheumatologist in November. 

I have so much to do around the house, but I will definitely be pacing myself the next few days, hoping that the fibro pain starts to lessen. 

End of Summer