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

Wednesday, June 30, 2010

Dialysis Day 35

Issues Yesterday

When I got off yesterday and weighed myself I was WAY under weight. I was supposed to be 64.5 kilos and instead I was 63.2. They wouldn't let me leave. They said I "over-filtrated." I'm not sure what that means except they took off too much fluid. They had to give me some fluids through my catheter. It took another half an hour. Since I had problems breathing they decided to lower my dry weight back to 63.5 kilos. The 2 pounds that I gained last week are gone again.

More oxygen, please!

I had problems breathing again last night. I don't really understand why. I can breath fine if I'm sitting straight up. My muscles were really weak this morning when I woke up, too. Weird. When the nurse listened to my lungs this morning she said she heard some wheezing. They're going to call the doctor. Until they hear from the doctor it's more oxygen for me. The nurse is convinced that it's fluid related. I'm not really sure how extra fluid can effect your breathing...

Good Baby News

Today's nurse said we have a happy baby. She said she's having "nice accelerations." I had to ask what that meant. It means that her heart rate is speeding up when she moves and that is good! She told me that it's unusual to see that before 28 weeks. Good stuff!

Transplant Update

I called to get an appointment to talk to the transplant team at Christ. The doctor sent over the referral the other day, so they were expecting my call. Since I'm hard to schedule with all of this dialysis it's going to be a while before they can get me in. Our appointment is scheduled for July 26th. It's a three and a half hour appointment! First we talk about the process of getting everyone tested and ask all of our questions about the surgery, etc. Then we talk to the social worker (great) about insurance. I'm supposed to come with a list of questions. I'm really bad about thinking of questions, so it's a good thing Jason will be coming with me. If you have questions, send them my way. We'll surely have enough time to ask a boat-load of them!

Tuesday, June 29, 2010

Dialysis Day 34

What a mess.

You should see me today. All these cords and wires. Today I have two dialysis tubes, two blood pressure cords, my headphones, my computer power cord, oxygen, and two monitors on my belly. I keep getting tangled up.

I'm getting some oxygen today. I had some trouble breathing last night. I had to sit straight up in order to breath deeply. They listened to my lungs this morning and said they didn't hear any congestion but not much air in my lower lobes either. I left a little heavy yesterday, so that might be the reason. I got a cramp in my back during my treatment which means they were taking off too much fluid. They gave me saline and the cramp felt better almost immediately. But extra fluid can cause breathing issues. Hopefully that's it and we can get it figured out today.

New nurse monitoring the baby today. She's talking to me even less than yesterday's nurse. Fine by me! She's pregnant, too. I used to think of pregnancy as being so benign. I didn't realize how many possible issues there are. People with uncomplicated pregnancies are very lucky.

Wiggle worm.

This child of mine won't sit still! We are having to chase her all over my belly. She went about 25 minutes without changing position too much. The other night I told Jason that every time she moved I was going to punch him in the stomach. He wasn't too happy when I really did it...over and over and over.

Monday, June 28, 2010

Dialysis Day 33

On a monitor today.

Twenty-four weeks once seemed like such a long way away. But it's here and today I'm on a fetal monitor. I'm sure the rest of the people in the Unit are really excited about it. The monitor is LOUD and she is moving all over the place! They can hardly keep track of her heart beat because she's moving all over the place. It's good news, though, that she's moving. I'm glad that nobody else is blogging about their time in dialysis. I'm sure they would have some nasty things to say about the noise I'm making today. Little do they know that it will continue for many more weeks!

The nurse is nice. She's letting me watch TV and type, so I don't have to keep talking to her. I hate talking to people I don't know.

We're gonna try to keep me pregnant as long as we can. I found out this weekend that baby can't go home until 34 weeks. I don't know what I'll do if she's born really early and I have to leave her here until 34 weeks. I already spend nearly 25 hours here at the hospital. I'm sure I'll start spending even more than that!

I was told that if my blood pressure drops below 100 that the nurses are to call the doctor immediately. Since it's been around 140 (which is high) since we started I don't think this will be an issue.

And the horror stories continue.

Okay, maybe not horror stories...
Apparently second born babies are crazy! Every time a nurse sees or hears how much my baby is moving the feel it necessary to tell me that their second born was INSANELY active. When I say active I guess I mean CRAZY. I was the second born and I wasn't ever crazy! Alli is so nice and calm. I'm not sure I'm ready for a crazy child.

Poor "Martha." She's asking for the Lord's help again. They had to explain the heart monitor to her. She was getting confused about the noise.

Saturday, June 26, 2010

Dialysis Day 32

When I came in today they didn't have me on the schedule. They apparently wanted me to have a day off. Would have been nice, but since I'm off on Sunday that wouldn't have been a good thing. Baby can't handle two days off in a row.

Mrs. Spock was right, 28 weeks gives her a 90% chance of survival. That's definitely our next goal. Although I'm not really looking forward to 28 weeks because of the added doctors appointments. The OB wants me to have a non-stress test TWICE A WEEK starting at 28 weeks. It looks like a non-stress test measures the baby's heart rate compared to her movement. Babies are supposed to have increased heart rate when they are in motion. Not really sure why I would need to make a separate appointment for that since starting Monday I'll have a monitor on every day during dialysis. Maybe I can convince them that they should do the test while I'm on dialysis.

Did I mention I need a kidney?

I was finally able to ask my nephrologist about starting the transplant process. He knows that my schedule is very busy and asked if I really wanted to start the process while I'm still pregnant. I told him my Thursdays are free...so, yes! I want to start the process. They sent a referral to Christ Hospital and the transplant coordinator called me on Friday. I missed her call, but she needed some information from me and wants to set up an appointment to come in and talk about the process. Of course, Jason wants to be there. He's much better at asking questions than I am.

Here's where we start: My blood type is O+. So, I can receive a transplant from someone with type O blood. If that's you and you're willing to get tested, please let me know! He told me that I need to get a "perfectly healthy" person. But I say if you're willing then get tested and we'll let the doctors tell us if you are healthy or not. Family members are usually better matches, but we'll try anyone.

Friday, June 25, 2010

Dialysis Day 31

Officially 24 weeks...yeah!

At the beginning of this mess we were told that 24 weeks would be our first milestone. The baby is officially "viable," although a 50-50 shot at survival isn't much to get excited about. But we'll keep being hopeful and doing what we're told to get her as far along as possible.

Slept today during dialysis. Not sure why I was so tired...maybe because I have kidney failure and I'm pregnant. Just a thought.

Wednesday, June 23, 2010

Dialysis Day 30

Good news after all these appointments. Baby weighs 1 lb 4 oz and everything looks good! That's 36th percentile for weight (which means 36% of all babies her age weigh less than her). I had and echo and there were no problems. Met with the OB and there were no problems. Ultrasound...no problems! I'm exhausted after all of the running around, though.

Tuesday, June 22, 2010

Dialysis Day 29

Sorry if you've been checking in. Another computer glitch so we're getting it checked out. I'm at Best Buy now using a sample computer.

This weekend I started to get some cramping in my legs and stomach. It's a sign of dehydration, so they raised my dry weight. If you don't what that means, remember that when you're in dialysis they are removing the toxins from your blood. They do this by draining fluid. Each time I get there I weigh myself and they check to see how much water I retained (by finding out how far I am over my dry weight of 63.5 kg). Since I was cramping that means they took off too much fluid. The doctor decided to add 1 kilo to my dry weight. That's 2.2 lbs for us Americans. That means on Monday they left on some fluid and I gained 2.2 lbs in my four our treatment.

Most people would probably be upset to gain weight, but I'm excited. My belly keeps getting bigger and now I'm gaining weight, too!

Tomorrow is a BUYS day. I have dialysis from 7am till noon, then and echo at Children's at 1:30, ultrasound back at Good Sam at 2:30 and an OB appointment at 3:30. If I can get the computer to work I'll blog on Thursday or Friday about all my appointments.

Wednesday, June 16, 2010

Dialysis Day 25

85 days and counting.

Tomorrow I will be 23 weeks along. Theoretically I will have 17 more weeks to be full-term. That means 85 more days of dialysis before the baby's due date. Since I've only done this for 25 days, I guess that means I still have a ways to go. But, realistically I will deliver before that.

Starting next week I will be on a monitor every dialysis day. A neonatal nurse will sit with me for all four hours. (I'm not really looking forward to that. I'm the type that prefers the hair dresser not talk to me while I'm getting my hair cut...and that doesn't take four hours.) I'm told that babies start to feel stress from dialysis at 32 weeks. But if there is any sign of stress before that they will have me deliver early. Most people think that I will have a C-section, but the doctors prefer I do it vaginally. That way I won't have to recover from one surgery before having the transplant. If the delivery goes anything like it did with Alli then I'd rather do it vaginally. It was a piece of cake. And Alli was nearly 8 pounds...this one won't be!

Stop the beeping!

Jason made a comment early on that once a nurse or tech gets his patients hooked up then their job is easy. Just waiting around for 3 1/2 or 4 hours till it's time to take them off. That's not really the case. Every machine has a ton of different alarms that go off all of the time. The BEEPING! There are ways to save off one of them. For example, when they hook me up they "reverse my lines." My catheter has a "push" line and a "pull" line (one that pulls the blood out of my body and one that pushes it back in). But they switch the lines to make the "push" into the "pull" and that helps the machine not beep as much.

The nurses also administer medicine pretty much the whole time. I get a drug called Epogen three times a week. I also get iron. Both of these are to treat anemia or lower than normal red blood counts. Anemia is common in people with kidney failure. I had a couple of blood transfusions when I was still in-patient to get my blood counts up, but since then they've looked good. If you are looking for some way to help, consider donating blood. I only used three units, and you won't be able to donate directly to me, but you'll help replenish what I used. You never think you'll need blood, but I don't know what would have happened to me if it wasn't there when I needed it.

Then there are the non-medical things that the nurses have to do. It's really cold on the dialysis floor, so they are constantly getting blankets for people. It's kind of funny to see they way some patients are wrapped up. I've learned to keep my computer running and sitting on my lap and it keeps me warm. Other patients are nuts for the ice they serve here. If you know the kind of ice they serve at Frisch's then you know the ice I'm talking about. So, the nurses are running to and from the freezer throughout the treatments.

The nurses are also constantly talking to patients and calming them down. If you've read this blog before you know how often "Martha" moans and groans. There are others who are not happy to be here and are pretty vocal about it. With "Martha" the best way to handle the situation is to ignore her, but others just need someone to talk to. The nurses never really have a chance to relax.

Tuesday, June 15, 2010

Dialysis Day 24

Today has been interesting.

They had me hooked up and then one of my lines came detached. There was air in the line and they worked for about 10 minutes to try to get it out. It's bad to get air back in your body. They finally had it worked out but the blood had clotted. So, there was alot of blood in the machine that they had to throw out. My blood counts have been okay for a while, so hopefully this won't cause any problems.

"I'm so sorry."

I guess they can't do anything at this point except apologize. Everyone is apologizing. Without using too many technical terms, one of the reasons the docs in Florida said they wouldn't dialize me was because they didn't have a 3K bath. All of the patients there are on a 2K bath. One of the techs here just told me that they could have sent me with a 3K bath. Damn it!

My nephrologist left me a message. He's so sorry. He did tell me that he is going to write me a "strongly worded letter" that will get us our deposit back from the rental and our money back from the airlines. My mom doesn't believe it will work. We'll see.

Are you serious?

I'm in a different pod than usual today, so I'm seeing people I don't normally see. There's a guy who seems to be about my age and reminds me of my brother. He's got a fistula, so he's not hooked with a catheter. He just gets needles into his arm...and he's doing it himself! They're just letting him stick himself. Blah!

Speaking of sticking yourself...that might be my future, too. Once the baby is born I will have several options for dialysis. One is to have treatments at a satellite place (not the hospital). There is one on Delhi Pike right near the house. I'd still be there three days a week, four hours each. Another is home hemodialysis. That would mean Jason would need to stick me with needles and I would be dialized while I sleep. I think this sounds great except I wouldn't be able to jump out of bed to get the baby when she needed me. The last is weird and I don't really understand it completely. I would get a catheter in my stomach and pour some sort of water in it and hold a bag of sugar water over my head while the toxins are flushed out of my system. This would be every day but only an hour a day and I would do it at home. I have some research to do, for sure.

Monday, June 14, 2010

Dialysis Day 23

More on "G-Money."

This morning "G-Money" asked a new guy if he lost his kidneys from drinking. The guy was weirded out like I was. Of course, he responded with a no. Then "G-Money" told us how he go sick. Apparently SWALLOWING COCAINE will mess up your kidneys. Who would have thunk it?

Back from "vacation."

It's never easy to get up at 6:00 am to come to dialysis, but even harder when you're "out of town." Yes, we did go on vacation...to Covington. We had a seafood dinner (at Joe's Crab Shack), went to the zoo, swam at the hotel pool, and went to Gameworks for some fun. Not Florida, but Alli thinks that any hotel with a pool is a vacation.

Saturday, June 12, 2010

Dialysis Day 22

This has been the worst 4 weeks of my life.

Packed, ready to leave the house, even had a confirmation letter in my hand. Then the phone rang...

The social worker here in Cincinnati didn't send my paperwork to the site in Venice Beach until Monday. Then the people in Venice Beach decided not to read it until Friday afternoon. The bastard doctor decided he "didn't feel comfortable" dialyzing me and had his secretary call me to tell me the bad news...at 5:30 yesterday. We were set to leave at 6:30.

Long story short...I can't go. Then I was left to make the decision about whether Jason and Alli would go. Now I'm the bad guy because I didn't want my family to go without me. So, not only do I feel terrible that they told me not to go, but now I have to feel guilty about asking them not to go. Alli's fine with it. No tears. Jason's pissed. I feel like he's pissed at me.

I'll get over it in time. But we're out ALOT of money. Had we known earlier we could have worked with the doctors, airline, and condo to get a refund. Nobody's going to refund our money at the last minute. We could find some things to do here at home. Stay-cations are fun, right? But we can't afford it. I'd love to take Alli to Kings Island or The Beach. Guess we can go to the zoo or the museum.

People have been telling me to accept help when it's offered. I accepted help from the social worker. Lots of good that did me.

Wednesday, June 9, 2010

Dialysis Day 20

She looks like an alien, Mama.

Ultrasound went well yesterday. I was a little nervous because she was very still at the beginning. It wasn't till about 5 minutes in that she started moving around like a crazy woman! The tech spent a lot of time looking at her heart, but the doctor said everything looked fine. I'm 21 weeks and 4 days, but she's measuring at about 20 weeks. She's in the 12th percentile for weight, so she's a little one. We knew that. But, nobody at the OB's office seems concerned.

Nor do they seem concerned about my weight loss. I have lost 4 pounds since my last OB appointment. They are thinking that I've been retaining so much water over time that dialysis is still getting me equalled out. I have another appointment in 2 weeks and we're going to re-evaluated my weight at that time.

I go to Children's today to have the echo done. It is apparently another ultrasound but focuses specifically on the heart. They look for certain arteries and such. They will also be checking out the interval between her heartbeats. This interval will be tracked over time to see if she is moving toward heart block. Heart block is when the heart rate goes from 120-160 down to around 60. If they notice the heartbeat going down then they can give us some medication to help improve the rate. The ultimate would be that she would need a pacemaker shortly after birth. I have will have an echo done once a week.

Tuesday, June 8, 2010

Dialysis Day 19

Ultrasound today. Alli's going to come see. I'm excited.

I woke up feeling a little funny this morning. My back was a little tight. They said my lungs sound fine. Now that I'm hooked up I feel even funnier. My arms feel like they are going to fall asleep. Might be a good day to just take a nap.

Yesterday we decided that I should take my blood pressure medication twice a day. So, I did. Now my blood pressure is 112/61. That's low. I took it this morning but now they are telling me I should take it at lunch time instead. I suppose maybe that's why I feel a little funny this morning.

Blood pressure update: It's perfect! Again, it's not often that someone in the medical profession calls me perfect. I'll take the compliment when I can get it.

Saturday, June 5, 2010

Dialysis Day 17

Cheese, cheese, and more cheese!

This is my last chance to get my phosphorus up without medication. Yesterday I had a salad with lots of cheese for lunch, mozzarella cheese sticks and alfredo noodles for dinner and orange sherbert for dessert. Add that to cheese and crackers with a Coke for breakfast today. Never thought I'd get sick of cheese.

My blood pressure is still a bit high. If it's not better this weekend then I'll have to take my blood pressure meds twice a day. I'd rather not, but I guess the blood pressure is worse for the baby than the medication is.

I'm starting my exercise to help my fistula mature. I have to squeeze a ball (in my case a blue rubber kidney). The idea is the same as when they draw blood from you and have you made a fist. It makes the blood flow through the veins faster and makes them "pop out." When my vein and artery have "popped out" enough they'll use them for dialysis instead of the catheter. It's supposed to take 8 weeks to mature, but since your body produces more blood when you're pregnant it might happen sooner. That means I'm getting closer to being able to take a shower!

Friday, June 4, 2010

Dialysis Day 16

They took away my chair neighbor. I can't see "Martha" today, but I can already hear her. I guess lots of people rearrange their schedules on Fridays so they can get in early and go away for the weekend. So, there are more people here than normal and I got banned to the back Pod. No big deal. I'm with "Mike" who brought in donuts for the nurses. Nice. Think they'll share? Not so much.

Finally got a hold of the people at Children's to have the baby's heart monitored. I go next Wednesday. The appointments last 2 1/2 hours because "we are at the mercy of the baby." She told me that the appointments will be weekly, but she did say possibly biweekly. Why not!? My doctors appointments are becoming a full-time job.

New guy came in and walked straight over to his chart to check out his numbers. I'm always afraid to do that...like the chart they keep on me is some sort of top secret document that I'm not privy to. It is all about me, right? I need to start taking control of things and learning where to find all of my numbers. Woah! New guy is also changing his own dressing and getting himself hooked up. I don't think I'm going to be taking that much control!

My phosphorus is still low, 1.9. They want it around 3. I haven't been limiting my dairy or tomatoes, so I guess it's time to start drinking more soda. They say that dark colas are the highest in phosphorus. You know I'm a Coke-girl, but I haven't craved one in a while. I guess that's good, but I'll have to force myself to drink one now. Apparently I can also eat kidneys to increase my phosphorus. Ironic, huh?

Tuesday, June 1, 2010

Dialysis Day 14

No news is good news, right?

Nothing new to report today. I'm sleepy, but not worn out in any way. We did alot of walking in the sun this weekend, so I'm not surprised.