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.
Saturday, July 31, 2010
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!
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.
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.
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.
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.
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!
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!
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