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

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!!

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.