"We cannot change the cards we are dealt, just how we play the hand." ~Randy Pausch



Saturday, July 31, 2010

Dialysis Day 57

A Bit of a Mess

Boy, was I a mess yesterday! They stuck me with one needle, and since it was the first time they had to run the machine slower than usual. Then the system clotted. Most people are on blood thinners to prevent that, but not me since I'm pregnant.

Next, once I was back on the machine I started to have contractions. I think they were taking off too much fluid. So, the OB nurse called the doctor down twice and the second time they did an exam. I'm not dilated so they weren't too worried about the contractions.

When the doctor came to talk to me I started to feel light-headed and dizzy. They took my blood pressure and it was 84/64...really low! This is another result of taking off too much fluid. The nurse squeezed the saline bag and gave me a little more fluid and my pressure went back up.

The same doctor checked out my fistula and wasn't happy that they started to use it. He wants me to have an ultrasound to check it out to see if it's ready to use. Another appointment. I'm doing this one on Thursday after I have my gall bladder ultrasound (for transplant prep).

When I came off I was light, so they had to put me back on to take more fluid. It was not a good day yesterday.

Dry Weight

The doctor that saw me yesterday wants to raise my dry weight by 0.5 kilos a week. He's the first doctor to be concerned about my weight. He knows that I should be gaining. The third trimester is most important as far as weight gain goes.

In-patient

An in-patient came in today. She's new to me, but the doctor and nurses recognized her. She had one concern this morning: Her fistula was growing. She said it hadn't grown until now. The doctor told her it looked "great." He explained that although it doesn't LOOK pretty it is MEDICALLY a great fistula. So doctors like to see fistulas that are ugly like the ones you see online. I'm hoping that takes years. I'll have my transplant before it starts to look bad...I hope.

Friday, July 30, 2010

Dialysis Day 56

Fistula

It's gonna be harder to blog now. They are starting to use my fistula today! I have to keep my left arm still so I'm typing with one hand. I'm going to have to be less wordy. It will be 5 weeks before we can think about removing my catheter. Can't come soon enough. After seeing some fistulas online I'm hoping it takes a long time before mine looks that nasty. They can get pretty big and gross. You might not see me in sleeveless shirts for much longer.

29 Weeks

Each day we get a little bit closer to our goal of 32 weeks. Today I'm 29 weeks! We will be happy to deliver any time after 32 weeks, but thrilled to wait as long as possible. Babe is still small. We'll find out how small on Wednesday during the next ultrasound. Hoping for a gain of 200 grams since last time.

The Puker

"Monica" is sitting with a bowl under her chin. No throwing up yet...let's all hope she doesn't!

Wednesday, July 28, 2010

Dialysis Day 55

Fluid Test

I had a fluid test yesterday. It's just another ultrasound where they focus on the fluid around the baby. It was really quick, only 5 minutes, and the ultrasound tech said the fluid looked good. I'm assuming they are worried that since dialysis takes all of the fluid off of me then it could be taking fluid from the baby. Apparently not.

Math

I've been trying to limit my fluid intake. One way of monitoring this is to keep an eye on my weight at home. I've been multiplying my dry weight (in kilos) by 2.2 and then adding 2.2 lbs to it to see how much I can weight at the end of the day. Then, I realized there is a switch on the bottom of my scale that changes the measurements to kilos. Much easier than doing the math!

Yesterday's OB Nurse

The nurse they sent down yesterday was about 12 years old. That was kind of annoying, but then she kept trying to diagnose me. For example, my blood pressure is taken every half an hour and the dialysis nurses write it down. The OB nurse asked if they have tested me for preeclamsia because my blood pressure is high. Really? I have 100 doctors and nurses down here who see my blood pressure all the time. Do we really need to give it a name like preeclamsia? I think I'm covered without having another diagnosis. "You really should be on blood pressure medication," she told me. No kidding...and I already am.

Charlie St. Cloud

I've been reading the novel "Charlie St. Cloud." this week and it's really good! I'm bummed cause I left it at home today. I was so looking froward to finishing it today! Not sure if I can handle seeing the movie. The book is pretty sad.

Tuesday, July 27, 2010

Dialysis Day 54

Transplant Meeting

I knew there would be alot of information and there really was. Alot of it was stuff I had read about and it was just a refresher. It was nice to hear it rather than read it. But some of it was new and pretty cool to hear about.

Like the 6 markers that are in everyone's body. The first blood test is to check for these markers. Everyone gets 3 makers from their mom and 3 from their dad. Matching 3 with someone is good and that's what they look for first. Then they will take my blood and the potential donor's blood and put them together in a dish to see if my t-cells start attacking the other person's t-cells. If they attack that's bad.

They will do a financial and psychosocial evaluation to make sure that being a donor will work with their lifestyle. It really does sound like they will not let someone go through the donor process unless they are 100% sure that it will be okay. And if you aren't a match with me you still have the option to donate. There is something called an Altruistic Donor which means you donate to someone at Christ Hospital that you don't know. Then there is something called a Paired Donor. Let's say that you don't match me, but you match "George." "George" has a friend who doesn't match him but matches me. You would give your kidney to "George" and his donor gives to me.

What I was also excited to hear is that the potential donor works with a team of doctors and nurses and that team has no contact with me at all! I have my own team and there is a liaison between the two teams. And remember, if you get tested and match but decide not to donate all I know is that you aren't a candidate. No hurt feelings.

So, we aren't really supposed to make a list like I thought. Instead, you can just fill out this paperwork if you want to be tested and send it in. They will set you up to come in for some blood work. They will take 7 tubes of blood (which isn't really that bad) and they use a very thin needle. Then they will let you know if you are eligible to go forward. If not, then you're done!

If you have already told me that you're interested then I will be sending you the papers. I might even send them to you if you haven't volunteered so you can send the papers out to people you know. No pressure...and you don't have to tell me if you filled them out or sent it on to someone else.

Monday, July 26, 2010

Dialysis Day 53

Fluid

I think I did pretty well restricting my fluid this weekend. I had a day off, so I gained 2.2 kilos (4.84 pounds). I had a little bit of trouble breathing last night, but nothing like before. I think that restricting the fluid is the solution. I'm hoping that over time they'll let me gain some weight, though. I'm eating alot more than I was before. I have to say, it's not because I'm more hungry than before. I'm forcing myself to eat more meat and take in more calories. It's hard! The food has no place to go since my stomach is so small.

Protein

I'm increasing my protein. My new favorite thing to have for dinner is a hamburger with no bun. Jason thinks it's funny that I don't eat the bun and I don't get cheese and veggies that he prefers. The thing is, if there is lots of "stuff" on the burger then I get full fast. Then I eat less meat. So, a plain beef patty with a slice of tomato and maybe some mayo is the way to go. I also have to work on eating the protein before I eat the side dishes. Side dishes have always been my downfall.

Transplant Meeting

Our meeting with the transplant team is today at 1:30. Thanks, Jill, for taking Alli for the afternoon. My mom and dad are joining Jason and I. I'm happy about that. I'm not really good at relaying info from doctors to my parents. Of course, they are always interested in every aspect of my doctors appointments. I can't blame them. Plus, my dad always comes up with good questions that I don't think of until afterwards.

I'm excited to have this meeting. It's been a long time coming. I know that there are several people who have volunteered to be tested who have questions. I hope to be able to answer those questions soon. I want to get a complete list together of people who are willing to be tested. So, please email me at stauke2000@yahoo.com if you want to be on my list. I'll just need your name and phone number so I can give those to the team. Remember, my insurance will pay for all tests and the surgery itself.

Saturday, July 24, 2010

Dialysis Day 52

Fluid Intake

Instead of lowering my dry weight the doctor decided that I need to limit my fluid intake. This is supposed to help with my breathing problems. I am to gain only 1 kilo over night, so I can drink 24 ounces of fluid plus whatever I pee out. Yesterday I peed a total of 4 ounces...wow.

So I really limited my fluid intake yesterday and I'm so thirsty today! But I only gained 0.8 kilos, so that's good. And I had a good night sleeping and breathing. Maybe we found the solution?

Mean "Martha"

When we get here in the morning, the first thing we do is weigh ourselves. Yesterday I went up to the scale and "G-Money" had just finished and there was a line of people in wheel chairs waiting their turn. They need help to be weighed because they have to remove their blankets and bags. So, I went ahead and weighed myself while they waited for the techs to help. Suddenly I hear, "I guess I'm a the end of the line, huh?" "Martha?" She's usually so out of it that she can't make comments like that. I offered to help her get weighed but had no idea what I was doing.

Then, a nurse asked "Martha" if she was going to be quiet during the treatment. "I don't know," said "Martha." The nurse explained that I have a baby in my belly and I'm having so much trouble breathing and "Martha" should feel bad for me and stay quiet so I can rest. "Martha's" response..."I don't care." Nice. The other day they told her that the baby was sleeping and she shouldn't wake her up. That worked.

The Weekend

It's the weekend again, so everyone's happy. Lots of laughing and joking. There's a new out-patient here, too. Maybe she'll leave thinking this place isn't that bad.

Friday, July 23, 2010

Dialysis Day 51

Bad News?

I had an ultrasound and OB appointment on Wednesday. The news wasn't terrible, but not great either. They take certain measurements (head, abdomen, femur, humorous) and a couple of them were a bit smaller than we'd like. The baby's head and abdomen are measuring small. Baby is are supposed to gain around 400 grams in a month, but this one only gained over 300 grams. Given the fact that I'm not gaining weight and my kidney issues, they aren't completely surprised by all of this. The nurse practitioner said that if all of the measurements were small she'd have me in the hospital. I'm not sure if that means in the hospital to deliver or in the hospital until I deliver.

In the meantime, we're going to have a growth ultrasound every two weeks instead of every four weeks. I'll also have a fluid test every week.

Good News

The good news is that today we are at 28 weeks! We're all really excited down here in the Unit. The baby is almost 2 pounds (1 pound 15 ounces). The NP said that we should expect her to be in the 20th percentile for weight when she's born. That means around 5 pounds. Alli was 7 pounds 15 ounces...not a chance this time! We still have all of Alli's newborn clothes, but we had to go out and buy preemie things this week. We bought one pack of diapers that are for babies up to 6 pounds. I can't believe how tiny they are. They are even too small for some of Alli's baby dolls.

No Pain, However...

The pain in my side is gone after my dry weight was raised one kilo. That means they raised my weight 2 pounds. Exciting! But, when they raise my dry weight I have trouble breathing at night. That's exactly what happened last night and this morning. It was a rough night. I had to be sitting exactly straight up in order to breath fully. I don't normally sleep during dialysis, but I might just need to today.

When I had the pain in my side on Wednesday they decided to send me for another chest x-ray. The results last time said that I had plural effusions (fluid around my lungs) but not enough to worry about. The result this time said that the effusion around my left lung has gotten bigger. Makes me think that they shouldn't be raising my dry weight...more weight = more fluid to gather around my lungs.

My nephrologist did say that I could be having this trouble because I'm not eating enough protein. My BUN levels are really low. They are normally low in pregnant women, but he said they are REALLY low. He offered protein supplements, but I declined and decided instead to go shopping for some high protein foods. The best things I could eat are meats and eggs. I've never really eaten much of either. So, I got some Carnation Instant Breakfast (more protein than eggs), whole wheat bread, Greek yogurt, and deli turkey and ham without nitrates. Surprise, surprise...most of those things raise my blood sugar. Great. That's something I need to worry about now.

The NP said that my sugar looked good EXCEPT for after lunch when it was high. I'm sure it's because I'm running around so much after dialysis and before other doctors appointments. I have to grab something to eat on the run and it's hard to find something really healthy. We're going to look at my sugar for another week and if things don't improve then I'll be giving myself insulin shots at lunch-time. This pregnancy thing is not easy!

Wednesday, July 21, 2010

Dialysis Day 50

Pain In My Side

It's the same pain I had over the July 4th weekend. It is a sharp, almost burning pain that hits me in my left shoulder, left chest, and left side. It's a constant pain. I was starting to think that it's maybe the way I slept. But I've been avoiding sleeping on that side for this very reason. So, the nurse is calling my nephrologist and keeping my weight even until she talks to him.

Echo Yesterday, Ultrasound Today

My echo was good yesterday. No issues. Since I'm just about 28 weeks I will now get an echo every OTHER week. Yeah! My schedule just freed up a bit! We'll go every other week through 32 weeks. If everything looks good then we'll just stop.

The echo tech did not measure the baby's femur and head, so we don't have a weight estimate. They'll get an estimate today when I have my ultrasound. Alli will come with me to get this ultrasound today. Last time she wasn't very interested and couldn't tell what we were looking at. Hopefully now that the baby is bigger it will be easier for her to see the baby's face. She'll think it's cool if she can see her face.

Contractions?

I had some contractions yesterday...and I felt them. It scared me a bit, but the nurse said since they were not regular we had no reason to worry. Baby is very active today. She's staying on the monitor but moving alot. It's the strangest feeling in the world! I think that since I'm so small this pregnancy I'm feeling the movement alot more than with Alli. I don't have enough padding in my stomach.

Labs Today

One of the labs they took today was for renal function. They're checking to see what kind of work my kidneys are doing. I had a dream that my kidneys came back and this was all just a terrible road bump that went away. They say it's possible. There are been people who have been on dialysis and they got to stop when their kidney function improved. Wouldn't that be amazing?

Crazy In-Patient

There's a new in-patient getting dialysis today. We'll call him "Chris." He was doing fine for a while, but then he started to try to get out of bed. The nurse told him to lay down because his blood pressure is too low. "Chris" started YELLING, "Get me off this f***ing maching! I don't want to be on this G** D*** machine!" They had to strap him to the bed. He was not happy with that! I'm totally uncomfortable with this situation. He's right next to me. I want to cry.

Tuesday, July 20, 2010

Dialysis Day 49

Much Better

My breathing was good last night. I'm not sure if it's because they took off the right amount of fluid or because I took some benadryl before I went to bed. Either way, I slept well and that's a good thing!

My blood pressure was really good this morning. It hasn't been good in a long time. But my heart rate is still really high. They put me on a heart monitor this morning. My nephrologist said he doesn't want me on a beta blocker because I'm pregnant. I have a feeling they'll call him today to tell him about my heart rate again.

Oprah

I don't know if anyone was watching Oprah yesterday, but they did a show on diabetes. There was a lady who was a nurse who had one leg and the other foot amputated. When Dr. Oz was talking to her in her hospital room she was on dialysis. She had a catheter in her arm like I do. I wanted to call everyone I know to turn Oprah on so they could see the machine and see someone on dialysis. I have heard that you can search the Internet for video of people on dialysis.

Monday, July 19, 2010

Dialysis Day 48

Breathing...Again

I had trouble breathing again last night. The shortness of breath is accompanied by a hacky, phlemmy cough. I think they are right that I get this when I put on too much fluid. I added 2.8 kilos over the weekend...that's almost 6 pounds in one weekend. It was really hot on Saturday. I've really got to watch what I'm drinking.

They Were On A Roll

For the last week or so the nurses were waiting for me when I got her or they were on their way. Today we had to call to see if someone was coming. "Good question," is how they responded. It's not like my schedule has changed over the past 3 weeks. They didn't get here until 7:30 and I didn't get on until almost 7:45. I'm supposed to get on at 7:00. I don't have any other appointments today, but I do on Tuesdays and Wednesday. I have to get home and pick Alli up and then get back here to the hospital. I hope they are here on time the rest of the week.

Almost 28

Today I'm 27 weeks and 3 days. We're getting really close to 28 weeks which is our next big milestone. They tell me the survival rate is 75%. After that we're shooting for 32 weeks when the survival rate is 95%. Right now I'm hearing that they are going to keep me pregnant as long as possible. Who knows, maybe I'll make it to my due date (October 15th). That would be amazing!

Daddy Brain

The Today Show is doing a report they are calling "The Daddy Brain." They are going to talk about what happens to a man when his mate is pregnant. Do men really gain sympathy weight? I'd say if they are stress eaters then they probably do. But maybe other women's pregnancies aren't quite as stressful as mine. If other women were under as much stress as I am right now I'm not sure why we were continue to have children.

Saturday, July 17, 2010

Dialysis Day 47

At Least I Was Early

It was bound to happen sometime. I woke up at the wrong time today, but at least I was early. My Monday, Wednesday, Friday time is different than my Tuesday, Saturday time, so I got up at the wrong time today. I was ready to go a half an hour early. No wonder I felt extra tired this morning.

Weekend

Fridays and Saturdays are much more relaxed than other days. I guess it's because it's the start of the weekend for most people. Everyone else gets two days off in a row and that is considered their "weekend." One day. One day.

Friday, July 16, 2010

Dialysis Day 46

Again?

"Monica" is puking again...she's killing me!

Yesterday Was a Good Day

I met with my principal who is totally on board with helping me out this year. I'm so excited to have this taken care of. I'm going to work afternoons on Monday, Tuesday and Wednesday until the baby is born. This way I can still get treatments in the morning. Then I'll work full days on Thursday and Friday, getting treatments on Friday after school. I'll get my fifth day of treatment on Saturday. I'll use one sick day a week and have one half-day unpaid. This way I can stretch my sick days until maternity leave.

I won't have enough sick days to cover my maternity leave, either. But I will take 6 weeks off anyway. And the treasurer's office told me that I will not go without pay during that time. They take my unpaid days and stretch them out throughout the rest of the school year. Each check through the rest of the year will be less than normal, but at least we won't go through November without pay. I'm feeling a bit of relief about the whole thing!

Since I'll still be considered to be "full-time", my insurance is not in danger. They will post a job asking for someone to work Monday, Tuesday and Wednesday mornings then 6 weeks full-time and finally 1 day a week after the baby is born. My principal told me that, without going into too much detail, they will also tell the candidate that there is a possibility of needing them full-time next year. That is if I get my transplant. My job will be safe when I return.

Oh, and if this plan takes a nose dive and needs to be reworked, the school and the district is 100% okay with chaining the plan. They're going to work with me...and I'm grateful.

Yay, Jennifer!

My friend, Jennifer, isn't type O blood, but she's found a friend who is willing to bet tested. She wins the award for best recruiting! I feel like there should be prizes. Remember when we were kids and we got prizes for selling the most candy or wrapping paper? One recruit wins you a...beer? Two recruits...several beers? I'll have to work on that, huh?

No Fair

"G-Money" brought himself a snack today. What's the snack? Microwave popcorn. Microwave popcorn? Really? Is there a snack that is more tempting? Boy, I'm hungry.

How Cool is That?

I emailed Tia Robertson, Oscar Robertson's daughter, to ask her questions about the transplant process. She wrote me back today and had lots of good questions to ask. I also think it's cool just to have made contact and have support from someone who's gone through it.

I also emailed Lisa Cooney from Channel 5 news. She donated a kidney to her family friend. She wrote me back, too! She is going to talk to the recipient to see if he'd be willing to talk with me. I asked if my donor (once we find one) can email her. She seems great and willing to be another support for us. Yeah!

Wednesday, July 14, 2010

Dialysis Day 45

Social Worker

The social worker needed to ask me some questions yesterday. Thank goodness it wasn't the one that was supposed to set up my vacation. I pretty sure I could hurt her if I had to have a conversation with her. This one asked me silly questions like, "I see you have your Masters, can you read alright?" And, "Does having this diagnosis add any stress to your life?" Really?

What The...

I'm not sure what's going on around me today, but the two patients next to me have their curtains closed. That usually means someone soiled their linens...great.

Fire Drill

Every so often they need to discuss fire safety procedures with each patient. Today was the day for me. If the dialysis machine catches on fire I'm supposed to put my hand IN the fire and turn the machine off. Sounds great. Then I'm supposed to clamp my lines and disconnect the catheter. Oh, Lord. I hope my machine doesn't catch on fire! At any time there is only 3 mm of blood in the machine, so that's what I would lose. They say that's not a big deal. Fire and blood at the same time...fun!

Medicare

I'm having another "meeting" with someone from Medicare today. I was supposed to find out how much Anthem is paying for and decide if it would be worth it for me to pay $110 a month for Medicare. As I said before, Anthem is paying for 100% of my treatments, so no need for Medicare. The social worker did tell me that some patients are required to get Medicare before they go through transplant surgery. That's something I'll have to ask the transplant team in a couple of weeks. They have open enrollment starting at the beginning of the year so if I don't enroll now I can still do that later on.

School

I spoke to my principal at school and he is totally on board with helping me next year. He wants me to come in this week with the exact number of sick days I have and we're going to go through a few scenarios. Scenario 1: The baby comes in October like planned. Scenario 2: Baby comes in August like was once suggested. He doesn't think I'll need to be part-time. I am scheduled to have a special ed teacher, Susan, in the room with me for the first 3 classes every day and he said he would feel comfortable having a sub take my place while Susan teaches. Susan is great, so I think it would work. But in the beginning that would mean she'd teach every day but Thursday. How would you feel about that if you were a parent? Not sure. Once I go to dialysis 3 days a week then I'll only miss 2 mornings a week (I'll do one on Saturday).

I guess we're getting closer to a solution, though. It will be a huge load off of my shoulders once we get it all figured out.

Tuesday, July 13, 2010

Dialysis Day 44

Oh "Martha"

Yesterday was a tough day for "Martha". She was here before me which is unusual, and she was sleeping. Most of the day was okay, but at one point she woke up and started yelling. "Where are my shoes?! I need my shoes?!" "Martha", you don't have legs. Then she changed her refrain. "I'll be quiet. I'll be quiet. I'll be quiet." Alright, already! Just do it!

"Hattie"

"Hattie" doesn't have legs either. She comes from a nursing home on Tuesday, Thursday and Saturday. I looked over at her today and Jim was placing 10 bags of saline on her. I thought he was just messing with her until Norma explained what he was doing. Apparently "Hattie" took on alot of fluid over the weekend and they were trying to show her how much weight that added to her body. That's one way of doing it. They say that nursing homes are big on patients rights, so alot of the patients use their room phones to order pizza and other stuff all the time and they just let them do it. I guess I'm okay with patients rights...but only to a certain extent.

Nephrologist

My nephrologist came to see me yesterday and was pleased with how things are going. No problems. He expects me to start gaining weight soon...so do I! If I start feeling cramping then they'll raise my dry weights.

My heart rate is still high, but doc said he can't give me any beta blockers while I'm pregnant. He said it's okay as long as the accelerated heart rate doesn't make me feel bad.

Monday, July 12, 2010

Dialysis Day 43

Can't Stand It

When you're a mom, you can handle when you kid pukes. There have been times when I've had to catch my daughter's vomit. But there is something about the sound of a stranger throwing up...I can't stand it! Add to it the fact that she's a LOUD puker and I'm in trouble. Please stop!

Blood Sugar

It's been one weekend of testing my sugar and it's looking pretty good. It's a little high after lunch, but that's it. I'm getting used to doing it. It's not hard.

My Little Acrobat

She's still extremely active. Each new OB nurse makes a comment about how active she is. I'm sure the other patients on the floor are getting frustrated by the noise she's making.

Alli is starting to warm up to me having a baby in my belly. She tells me every day that my belly is getting bigger and then she kisses it. She'll say hi to the baby and ask me if she's awake or sleeping. I think she's going to be a great big sister.

I'm getting anxious for her to come. Intellectually I know she needs to stay inside as long as possibly, but emotionally I just want her to come so we can see that everything is okay. I spoke to an old neighbor yesterday and she delivered her daughter at 30 weeks. She was 2 1/2 pounds and now she's 18 months old and doing great. She delivered here at Good Sam and loved the nurses and doctors. She had nothing but good things to say. The baby had to stay in the NICU until she could eat and breath on her own and regulate her own temperature. The amount of time had nothing to do with her age.

Surgery Questions

Several years ago, Oscar Robertson and his daughter went through kidney transplant surgeries. He donated to her. Her kidney failure was lupus-related, very similar to my situation. She is one of Jason's customers at the bank. I have an email in to her to see if there are any questions that I should ask. Since we haven't met with the transplant team, I'm still too uninformed to come up with my own questions. But I asked her if there were things that she wasn't prepared for that she wishes she knew ahead of time. Hopefully she'll write me back and help us get ourselves informed.

Saturday, July 10, 2010

Dialysis Day 42

Cat Update

The doctor gave him a shot on Thursday that was supposed to stimulate his appetite. It worked! Since the moment we brought him home he's been eating or begging for food. It's like he's back to himself. Not sure how long that shot is supposed to last, but it seems like he's okay now. I think he might have just eaten something that made him sick for a couple of days.

Back to Me

My blood pressure was high yesterday. The doctor thinks it's because I put on too much fluid. I gained 3 kilos between Wednesday and Friday. That's 6 pounds! The nurse said it's normal for people to go overboard drinking on hot days. But, the doc wants me to watch the amount I'm drinking. I did better today.

I met with a nurse to learn how to use my glucometer. It's pretty easy, but it kinda hurts. You're supposed to choose a different finger each time you test. I only have 10 fingers and I need to test 4 times a day.

Yesterday's echo was fine, too. Baby is at 1 pound 10 ounces (plus or minus 4 ounces). BabyCenter.com said she should be 1 and 2/3 pounds. That's pretty much right on. Things are looking good.

The OB nurse was here before me today. She said she thought it was 7:00 today, too. I like when they are early!

Since there was a holiday on Sunday the Housekeeping department is on vacation today. Not sure how that works. But the result is that there are NO BLANKETS on the floor. Now, for me that's not a big deal, but the other patients are FREEZING! The nurses were told that they can't get blankets until 11:00. Yikes! I have a feeling someone might go to another floor and start rummaging for blankets.

The Vet Called

I guess maybe I was wrong...he's not 100% okay. The doctor said he's got early kidney disease. It seems like something we can control with diet, and maybe medicine. If we can increase his water intake and lower his protein then the doc said we can virtually reverse the kidney disease. I guess it's not ESRD...and I guess I'm not getting a kidney from my cat, huh?

Friday, July 9, 2010

Dialysis Day 41

The Cat

I don't normally blog about things outside of dialysis, but how about this one. Our cat spent most of Monday throwing up all over our carpet. Since then, nothing, but he hasn't been eating well. So, I called the doctor and we went in yesterday. The symptoms weren't telling the doc much so he took some blood to check his KIDNEY FUNCTIONS! Seriously, the cat might have kidney failure, too? I know it's common in cats, but let's be real. We don't need this right now! They are also checking his liver, thyroid and white blood count to see if it's an infection. Let's hope it's something easy...and cheap!

Back to Dialysis

My iron is low...common in pregnancy and in dialysis patients. I'll bet getting 100 mg for 10 treatments and then once a week after that. I was only getting 50 mg once a week.

Around 28 weeks it's common practice to get a glucose test. It's a half-hour test where you drink this orange fizzy stuff and then they check you blood sugar. If you "fail" this test then you take a test that lasts 4 hours. You drink the same stuff and they take your blood every hour or half hour to see if you truly have gestational diabetes. Since I'm on Prednisone, my doctors are sure that I will "fail" the short test. They said there's no reason for me to go through that test. So, I would move straight to the 4-hour test. It can't be done during dialysis since they are cleaning my blood while I'm here, so it would be another 4 hours probably on a Thursday. We've decided that instead of that I will just get a glucose meter and test my blood at home for a while. I'm sure that if my levels look good I won't have to keep it up for long. But in the meantime, I got my meter and have prescriptions for supplies to last 3 months. I'm meeting with the diabetes nurse this afternoon to learn how to do it.

I also have an echo today. Should be quick and no big deal. I just hope I have time to get something to eat between all of these appointments.

Today's OB nurse got here before I did today, so that was nice. I got on really quick. She looks surprised by how cold it is. She's got a sweater but is still shivering. It is a little chilly today. Uh oh, she's already standing up and staring out the window. We're only 1 hour in!

"Martha" had a little fit this morning. She told the nurse that she just put on her earrings and one fell out. Nope, "Martha," no earrings around here! I can't imagine that she's with-it enough to put earrings on before she comes to dialysis. We don't normally get all dolled up before treatments!

...nurse just got herself a heated blanket...

Wednesday, July 7, 2010

Dialysis Day 40

Yet another new OB nurse.

I don't think that anyone told her what she's gotten herself into today. She seems completely clueless. She stood around for 10 minutes waiting for someone to bring her a chair after I told her she'd have to get one herself. She has bumped into my legs/feet several times. She brought NOTHING with her to work on while we're here...for four hours! Right now she's staring at the monitor. She's been trying to talk to me for a while, too. I have headphones in, so I think she's getting the idea that I don't want to talk. It's going to be a long day...for her and for me!

Pain on my side?

I left yesterday feeling good, again. And I felt okay until about 3:00 when I started feeling pain in my side again. But, I realized that I hadn't taken my Prednisone since I had to get the prescription refilled. So, I took my regular dose plus 10 mg and the pain went away. I'm feeling really good today! I have tomorrow off, so we'll see how it goes.

OB appointment.

I have an OB appointment this afternoon. I worked out the conflict and moved the Echo to Friday. Jason is not coming to this OB appointment. There's no ultrasound and last time they did nothing but ask if anything had changed. I think we'll probably talk about my weight (which is unchanged or lower than last time). They will measure my stomach to make sure that I'm measuring at 25 weeks 5 days. Maybe they'll listen for the heartbeat. That's getting really old. I have another ultrasound scheduled for two weeks from now.

...Nurse is still staring at the monitor and she's hit my legs three more times since I wrote about her last...

Tuesday, July 6, 2010

Dialysis Day 39

I forgot the latest GOOD news!

On Saturday we got a message from AirTran. They wanted us to call them about our request for a refund. I was nervous but anxious for the situation to be resolved, so I called them back right away. They were great...they said they would fully refund our flight (fees, taxes and all)! BUT, we had to call Traveloicity and tell them to call the airline for some sort of waiver code. That wasn't as easy. However, after 30 minutes on the phone with Travelocity we had success! We will receive a full refund...all $1400 of it. We're super excited. Of course, as quickly as it comes in it goes back out. We had to buy bedroom furniture for Alli since the baby will be getting her's. We were going to have to do that anyway...

Scheduling

I'm surprised it took this long for me to make a mistake. I arranged an echo and an OB appointment on the same day and time. I've got to make some phone calls today to straighten that out.

Medicare...it's not just for old people.

Did you know who is eligable for Medicare? "Generally, Medicare is available for people age 65 or older, younger people with disabilities and people with End Stage Renal Disease (permanent kidney failure requiring dialysis or transplant)." How about that! That means we (people with kidney disease) don't pay for dialysis treatments. Our financial responsibility hasn't been that great so far. I think it's only been the $250 when I was in-patient and $20 for the copay to start my OB appointments.

The real financial struggle will begin in August. Jason is quitting hit job at the bank to start Student Teaching. That will be rough for a while. I am also going to start negotiating with school to see if I can work part-time next year (only mornings) so I can continue my dialysis treatments. Since I will have to continue treatments for 5 days a week until the baby is born my only other option is to quit my job all together. I don't think I should have to do that...school really should work with me on this one.

More Wires

How about three more...for a heart monitor. I've been coming in with an elevated heart rate for about a week. Since I've had the cramping with it the nurse called my doctor. He wants my heart monitored and for me to get and EKG. Another test, another appointment! It could be because my potassium is low, so they are going to check that again, too. My potassium has been low all of my life, really. I think it was high in May when they brought me in the first time, and it's common for people with kidney disease to have high potassium. They tell me to stay away from potassium-rich food. Maybe that's causiing the problems.

Monday, July 5, 2010

Dialysis Day 38

Cramping

I asked them to keep me at 63.0 kilos on Saturday. But I over-filtrated. I left at 62.4 kilos. I felt terrible on Sunday. I had pain on my left shoulder and all down my side. I assume I was dehydrated...so I drank ALOT of water and Gatorade. Jason and my dad wouldn't let me go more than a few seconds without taking a giant gulp! It got to the point that I started feeling full and my ankles started swelling. I think that somewhere between 62.5 and 63.0 kilos will be where we need to be for a while.

Volunteer Donors

I've already had a few people volunteer to get tested. All of the testing is non-invasive and not painful. There are blood tests and possible ultrasounds and CAT scans. My health insurance will pay for the tests and the surgery. Plus, I learned that they can do the donor's surgery laparoscopically! There are three small incisions in the abdomen and a small cut down low by the groin. It's an easy surgery to recover from. Within a year the remaining kidney gets larger and take over the function of the other kidney.

I know I've said this before, but if you are even remotely interested in being a donor, please let me know. You can get tested even if you aren't sure if you want to go through the surgery. If you are a match and get cold feet, you just have to tell the transplant team and they will tell me that you aren't a match. That way I don't have to know who is declining. I understand that this is a huge decision to make and I will have no hard feelings either way.

Another Nurse

She seemed nice enough...until she called me chubby. I know, I really should be gaining weight and being chubby wouldn't really be a bad thing, but I'm not anywhere near chubby! In fact, alot of people are saying I'm "skin and bones."

She's got the monitor turned so that I can see it and not just hear it. I'm not sure I like seeing the heart rate. Every time baby moves off the monitor it drops really low and scares me. But, we always find her again and everything is fine. They tell me that when she gets bigger and has less room to move around it will be easier to keep the monitor on her.

Saturday, July 3, 2010

Dialysis Day 37

Contractions?

Okay, maybe not PLURAL, but I had one contraction yesterday at the end of my treatment. I didn't feel it and no one was worried about it. I wonder if I've had any others. When they monitor the baby's heart beat they also have me on a monitor for contractions. We'll see what happens today.

Lowering my dry weight.

Yesterday the doctor decided that the way to fix my breathing problem is to lower my dry weight. The nurses and techs are still a little worried about this. The tech asked me today if I wanted to go down to 62.5 or stay at 63. I don't know! Aren't they supposed to decide that for me? I told him to keep me at 63 today and we can go for 62.5 on Monday. They aren't usually worried if I leave within 0.5 kilos of my dry weight, anyway.

Friday, July 2, 2010

Dialysis Day 36

It's never easy.

Toward the end of my treatment on Wednesday I set off an alarm. Apparently the dialyizer clotted. I thought that as long as the blood was moving that couldn't happen. But most patients get a dose of blood thinner when they are on to prevent clotting. Since I'm pregnant I don't. So I lost a bit of blood when that happened.

After I left on Wednesday I went to Children's for another echo. Everything looked fine, no changes. In fact, the doctor asked me how high my antibody levels were. She said there were studies saying that unless they were at a certain level then there is really no reason to monitor as closely as we are. It seems she's pretty convinced that everything is going to be fine. It's always nice to leave with some good news.

My next stop was back here at Good Sam for a chest x-ray. Since I was having the breathing problems earlier in the week they wanted to make sure everything looked okay. I think I scared them because I told them about the pneumonia I had in October, so they wanted to be extra sure. I didn't hear anything from the doctor until I came in this morning. They said everything looked the same as the last time I had an x-ray. More good news.

And Wednesday and Thursday night were great! No breathing problems at all and I slept without a problem. Jason said he knew I was sleeping well because I was snoring. They took off a little more fluid than usual on Wednesday, I left a little light on Wednesdsay. I think that really helped. The doctor is still going to come down today to check on me.

"G-Money's" got no clue.

Everyone knows I'm on a fetal monitor now. It's really loud and annoying. "G-Money" asked me about it this morning. "How long do you have to be monitored?" he asked. Till the end, I answered. Next question made me want to laugh, but I didn't. He asked, "Is she crying alot?" What? Crying? Really? Does he really think they are listening to hear if she's crying? "Just listening to her heart," I answered trying not to crack a smile. I wonder if he has any children...I'm gonna say yes, isn't that scary?

OB nurse came prepared today.

She was a school nurse for 13 years...and she wanted to talk about it. I was afraid she's talk the entire time, but thanks goodness she's stopped. She came prepared for our treatment. She brought her own computer to check her email and Facebook. As long as she keeps an ear on me and lets me do my thing I could care less what she's doing.

Doctor came down.

A doctor came down to talk to me about my breathing. It's not my primary nephrologist, but one that I saw alot when I was in-patient. He wasn't concerned about my chest x-ray, but said I still have some fluid on me. So, he wants to LOWER my dry weight again. He said 0.5 kilos today and 0.5 tomorrow, two pounds in two days. Since he isn't my primary, the dialysis tech said he's going to call my primary to make sure he's okay with this. Removing 0.5 kilos two treatments in a row isn't a big deal for most people, but since I'm here two DAYS in a row, the tech is a little concerned. We'll see what my primary nephrologist says.