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

Thursday, December 22, 2011

...and Pouring

Well, my hip x-ray came back negative...except I have a kidney stone. Yeah, I know. It was an assistant to the doctor who called me, so she didn't know which kidney the stone was in, but since my x-rays were all of my left side I'm assuming that the stone is in my old, left kidney. My new kidney is on the right. I immediately called the kidney doctors who didn't seem too concerned. She's going to look up the x-ray and then get back to me if there's an issue. In the meantime, I see a chiropractor on Friday to see if he can relieve the pain that continues to be annoying.

Wednesday, December 14, 2011

And...My Hip

Have I mentioned the terrible pain I'm having in my left hip? It started almost 3 weeks ago and I don't know how. I saw my doctor about it and she said I pulled a muscle. So she gave me some stretches to do and she would not prescribe me any pain meds. I got my kidney doctor to do it because the only OTC pain med I can take is Tylenol. All you pregnant women out there who can only take Tylenol know it does NOTHING! Well, three weeks later and the pain is worse than before. I can't get up from laying and it hurts to walk. I'm going to see my family doctor this afternoon to see if I need an x-ray or something else. Ugh.

Tuesday, December 13, 2011

Back to School, Back to School...

Day two and things are off to a good start. Yesterday was nice, it was nice to get a sence of normalcy again. I wasn't too tired at the end of the school day. But then we had Alli's homework, dinner, girl scouts and a big grocery trip. That means putting away groceries and then getting everyone ready for bed. By 9:00 I was toast. Anna only woke up once last night, so I was able to get some extened sleep. Still tired...but excited about a pay check in January!

Monday, December 12, 2011

A Very Target Christmas

On Saturday the Delhi Skirt Game Committee gave each of my girls a $100 "shopping spree" to Target. We got some basics (sweaters, t-shirts, snow pants, socks, diapers), and then they could pick out a few toys. It was so nice of them, but I cried three times. I hate taking when I'm used to giving. But they were all so nice and Alli said it was the best part of her weekend. She keeps telling me, "It's okay, Mama, I still love you alot."

Friday, December 2, 2011

When It Rains It Pours

And it has been pouring lately. Proof? How about all of the water in my basement? Yeah, the sump pump stopped working. What a mess! This after we had a drain back up and had to pay a plumber and after Alli failed her distance vision test and we had to buy glasses. And we're trying to take care of Christmas, too. Thank God for my parents. And thank God I'm going back to work soon. It's starting to get rough.

Friday, November 25, 2011

Happy Thanksgiving

I do have alot to be thankful for this year. Debby, my health, my family, my friends, financial support from others, emotional support, my kids and my husband. There's a short list.

Wednesday, November 23, 2011

More Time Between Visits

I have to go to see the doctor on December 5th. That's two weeks after my last visit. And I DON'T have to give blood in between. So that's cool! And I can get my blood drawn on the Friday before close to home. Then I'll call the doctor on Monday and ask when they can see me so I don't have to sit around the office all morning. Hope it works! Weight The nurse practitioner told me again that it was time to stop gaining weight. I'm only 130, 5'8". But then she saw me standing up...she told me to keep eating! "I didn't realize how skinny you are!" she remarked. "I think you can stand to gain some more weight. Keep up the good work." Thanks.

Thursday, November 17, 2011

Would Have Been Nice to Know

I went for blood on Monday at 7:30 and had to wait OUTSIDE of the office since there were so many people waiting. I didn't have my blood drawn until 8:30. It was crazy! When the nurse practitioner called to tell me that all of my blood work was good she asked where I get my blood drawn. "At the hospital," I answered confused. "Oh, well there is a lab near your house on Rapid Run. In the future you should have your blood drawn a day or two before your appointment and then just call us to see when we think we can get you in." Seriously! This information would have saved me HOURS and HOURS of waiting around the hospital...eating bagels and drinking hot chocolate and caffeine free Coke. It could have saved me about 10 pounds! Went for a Visit Anna and I were going to Kroger and dropping stuff off at Good Will. Both were right by Davita, so we stopped in to say hi. The nurses, NP and dietitian were so excited to see me! I told them that I really don't know why people stay on dialysis and decide not to go forward with the transplant. It's like a whole new life after a couple weeks recovery. Well worth it! Energy I did some shopping on Tuesday. Some returning and some Christmas shopping with gift cards that I keep getting from people at school. Normally the amount of moving and carrying of Anna would have worn me out. But I think the more I did them better I felt and the more energy I had. I couldn't believe it! I feel like I have the energy to go back to work, but the doctors still want me to stay home and stay away from germs...do they know that Anna has a cold??

Tuesday, November 8, 2011

Sorry, Nothing New

I know, I haven't posted in a while. Still all good news from the doctor. I go back 7 days later to get blood work and 7 days after that to see the doctors. He last said I'm not drinking enough water. And I've gained 20 pounds since I left the hospital. The nurse said I'm going to over shoot my goal weight if I'm not careful...nice.

Tuesday, November 1, 2011

10 Days

I saw the doctor on Friday. Things are still great. So great that I don't have to give blood until Wednesday. And I don't see the doctor again until next Monday! That's 10 days between visits. He wants to get me to every two weeks really soon. I love it!

Thursday, October 27, 2011

More Tests, More Questions

Yeah, right? I saw my rheumatologist who I still really like. She ran a ton of tests. Most resulted the way we expected...my immune system is messed up (my ANA was high). Both of my Sjogrens anti-bodies were positive (they told me that when I was pregnant and that's why they were so worried about Anna's heart before she was born). My Sed rate was high (87 is apparently super high) so she knows that my Sjogrens is active because it shows that there is inflammation in my body.

But the most concerning test was a lupus test that came back positive. It was barely positive, but positive all the same. She asked me to double my steroid for a month and then come back to repeat the tests to see if the inflammation is down and is the lupus test was a fluke. The inflammation could be be a result of getting off of a high dose of steroids too quickly after the surgery. If you know anything about steroids you know that you have to step off of them slowly and carefully.

Lupus is similar to sjogrens but works in a different way. I'm pretty sure my friend's mom has lupus. I'll have to get some info from her.

Monday, October 17, 2011


Got your attention, huh. No, I'm not addicted to pain meds. I'm addicted to strawberry banana smoothies. They are helping me to gain weight. I have three or four a day. Crazy!

Healthiest Patient

The doctor told me that I'm their healthiest patient. Lots of other patients have been readmitted to the hospital for dehydration. Not me! I've got lots of people "reminding" me to drink water.

I'm doing so good that I had blood drawn today but don't need to see the doctors until Friday. Nice!

Friday, October 14, 2011

Stent Removed

I had a stent connecting my kidney and bladder. I guess it was supposed to keep the "tube" connecting the two open so I could pee. Anyway, it was removed on Wednesday. It was pretty easy. They gave me some "Jaco-juice" (Propofol) and I don't even remember seeing the doctor. Good thing. I was nervous once I saw the stirrups!


I keep gaining. I'm back to my pre-surgery weight (119). Still got some more to gain. Jason and the doctors think I should be at 140. I'd rather shoot for 135!


Saw the rheumatologist on Monday. She was nice and very thorough. She drew a ton of blood to see that I really do have Sjogrens and if it's active. I'll go back in two weeks to go over the results and come up with a plan. I like how she operates...get all the facts before you do anything.

Monday, October 10, 2011


The doc told me on Friday that I could start driving! Thank goodness. Tomorrow is 4 weeks. I drive myself this morning and after I had my blood drawn I drove to get a bagel and a coke. Ahh. I sat in my car instead of a hard chair in the hospital. I'm not as irritated as I had been.

Another Doctor

I see a rheumatologist today. My kidney doc got me in fast. She's supposed to be really good and in high demand. Hopefully she knows more about Sjogrens than my last rheumatologist. He was a joke.

Friday, October 7, 2011

Stir Crazy

I'm getting a little bit tired of sitting in the house all alone all the time. But I still need to stay away from people and germs. I watched Alli's soccer practice last night and then we went to Applebee's. It was a quick dinner, but it was nice to get out. The gift card from school helped out alot!


They told me last time that they like to take turns on who comes back first. We'll see. It should be my turn to be close to first.

Date Night

Jason is taking Alli to see the Lion King tonight. She's been so great through all of this...she deserves it. Anna and I will probably fall asleep on the couch.

Tuesday, October 4, 2011

Two Days a Week

Yesterday was another terrible waiting day. I had my blood drawn at 6:30, had a bone density scan at 8:30, sat at the kidney doctor's office until they called me back at 11:00, then didn't see the doctor because they didn't have my blood test results. I went to the urologist and called the kidney doctor to see if my results were back...they weren't. So, I went home. They called me later.

But the good news is that things are still going well and I only have to go to the hospital 2 days a week, Monday and Friday. Hooray!


My labs looked good. My creatinine is 1.0 (great), my white blood count is 8.5 (no infection), my red blood count is 10.5 (improving). My sugar was 78 after fasting (much better than it was before). Yeah.

Bone Scan

I had a bone scan since I've been on the steroid for so long. It said that I have osteopenia. It guess that means there is some thinning of my bones. It's hard to tell if that's because of the steroid or because of family history (my mom and grandma have bone issues, too). I'm supposed to start taking Caltrate with Vitamin D for the time being. I might have to start an osteoporosis medicine, like Boniva that Sally Fields takes.


He walked in and said, "So, you got a new kidney...awesome! Congratulations!" He was cool. He said they could remove the stint by just using some numbing cream and then it will take only a few minutes to "go up there" and remove it. Ha, right. He says most women are more comfortable when they are sedated and that will take a couple of hours to get me to sleep and then wake me up. Please, put me under... That will happen next week.

Sunday, October 2, 2011

"Things Couldn't Be Better"

Once the doctor finally showed up on Friday it was a good appointment.

My white blood count is down which means we are no longer worried about an infection...yay! My red blood count is up, so I should start feeling like I have more energy soon. My blood pressure was good, lower than I'm used to, but good. My creatinine level is 1.0. This is the big test that tells us if the kidney is working. Normal is between 0.5 and 1.2, so it's really good! Potassium and calcium are good. Phosphorus is still low (who would've thunk it).

My appointment was so good that he considered having me NOT come back in on Monday. Maybe we'll be down to two days a week soon! But I have other appointments on Monday, so I would be there anyway.

I get a bone density scan at 8:30 on Monday. I've been on a steroid for so long that he wants to check my bones out for osteoporosis. Then I see the kidney doctors like usual. And finally I see the urologist at noon to talk about getting rid of the stint that I have connecting my kidney to my bladder.


I went to church last week. I sat in the back, didn't shake hands and wore a mask. I got up and showered today to go again, but it wasn't meant to be. Every time I stood up I felt my blood pressure drop. I was fine sitting down, and would have been fine once I made it to church. But I had to get there and get to the back. I decided to stay home.

Friday, September 30, 2011

So Annoying

I got here this morning at 6: 20 for my blood draw. Got a danish and found a comfy seat until 8: 00 when I found some hot chocolate.

I got to the kidney doctors office at 8:30 right when the office opened. Now it's nearly 11: 00 and I am yet to see the nurse practitioner or the doctor. They are both here...I hear them ordering Chipotle right outside my door.

All I want to do is go home and lay down. I have a feeling I'm not getting much rest today.

Want to cry...

Monday, September 26, 2011

Best Day So Far

I know...from worst to best, right. We figured out why Anna wasn't sleeping. She has a cold. We set up her humidifier with some vicks. Then we gave her some tylenol and some all-natural cough medicine. It has made all the difference in the world.

I felt great all day. My bp is still low, so I'm officially off of all bp meds.

However, some of my bloodwork came back looking not so good. My white blood count was really high, so they think I have some sort of infection. I'm on a super strong antibiotic while they wait for my blood and urine cultures to come back. I could have Anna's cold brewing, or it could be a urinary tract infection.

I mean, I haven't peed in a year in a half, so I guess that wouldn't surprise me...

Keep you posted.

Friday, September 23, 2011

Worst Night Ever

I feel like maybe I've said that before. Anna wouldn't sleep. Jason got in the car and drive all of the way to Fountain Square before he finally got her to sleep. They stayed in the car for 10 minutes after they got home. He finally brought her in, kept her in her car seat and fell asleep on the couch.

I wish I could help more, but I can't pick her up for 5 more weeks. He's really stressing out...

And I felt horrible, too. My blood pressure is super low even without bp medicine. It makes me hot and cold at the same time. Sweaty and chilled as well as dizzy. Plus my pain is bad and it's hard to get comfy in bed. I need more pain pills.

I'm still loosing weight. I'm at 108. You can see my ribs.

Jason wants me to get some "weight-gainer 2000" from GNC...we'll see what the docs say.

Wednesday, September 21, 2011

Routine Hospital Visit

I'm here for my MWF blood work. I guess Wednesdays are the lightest day of the week. New people come MWF, older people only on MF and really well established people come only on M. Today they got me in before 6: 30. Now I have to wait two and a half hours until the kidney docs office opens.

They should really have beds here for us...

I get my last iv infusion today. It took for hours on Monday. hopefully we'll start earlier today. The visit with the docs took two hours since it was my very first one.

At the end of the day, Dad was waiting for me with a Snickers bar. Yum!

Monday, September 19, 2011

Things Look Amazing

Okay, blood pressure has improved. It's still low for me, but they think out could be a sign that it's going back to normal. Can you believe it? Not I! Meanwhile, we adjusted my meds and I will only take some of them if my pressure is above a certain number.

Self-medicating...I'm good at that!

My other numbers are great. Phosophorus is super low so more dairy, chocolate , nuts and cola. It's strange to go over board on the things I've been avoiding for so long.

Soccer parent is bringing us dinner tonight...stuffed shells, salad, bread and cake. Yummo! I'm hungry!

Waiting Game

Sitting in the doctors office. I was discharged on Saturday and their voicemail was down. So we are waiting for another report from the hospital.

My blood pressure had been around 88/72. Not real good. In fact, I feel like crap. So they brought me back to let me lay down. I think that and the salty peanut butter crackers and bottle of water are helping.

After this I go upstairs to get another anti rejection treatment. It takes 4 to 6 hours. So the longer I wait here the longer it takes up there.


Friday, September 16, 2011

Ohhs, The Fluids!

They want me to drink 3 liters of fluid a day. Plus, I'm on iv fluids. I'm peeing every 20 minutes. I have to unplug myself and roll my iv in to the bathroom with me. How annoying! But I guess it's better than the alternative.

I took a sleeping pill last night with my pain pill. I slept from 10 pm til 530 am. Pretty good for the hospital. I asked for another one for tonight.

Walking...In Pain

I felt better yesterday so I walked around alot. But this morning I'm in a bit more pain. And I'm peeing alot. It's kind of freaking out the nurses. They have to empty my catheter bag more than a normal transplant. Debby gave me a good kidney!

I washed my hair in the sink last night and changed into my own pajamas. It feels nice to be clean. I still might be here until Sunday instead of Saturday. I'm at a high risk for rejection because of the sjogrens syndrome, so I need an extra dose of an immunosuppressive drug. It's an iv drug and has to be done inpatient.

I've got an iv in my right arm, a central line in mt neck and a folly catheter too catch my pee.

It's hard to get around...

Thursday, September 15, 2011


Jason made fun if me. I ordered rice krispies,a banana, two milks, orange juice, an english muffin with cream cheese, turkey sausage and hash brown potatoes. Yummy! And I ate most of it, too! Lunch wasn't as good, but there was chocolate ice cream!

Wednesday, September 14, 2011


I had a great dinner and dessert. Then I ate an entire Snickers bar! Yummy! I'm not used to drinking so much and feeling like I have to peep. It's kinda nice, but kinda weird, too. My pee had been pink, like pink lemonade. But it's starting to yellow out.

I'm off off the morphine pump and now on pain pills. Hoping to get some more benedryl to help me sleep. They will wake me up every hour to drain my pee. And I'll be up at 5 am to sit in a chair for a few hours. Might even walk around before I'm moved to a regular room.

Oh, and then there is breakfast...

Super Duper

I feel great! Of course my side hurts, but other than that I'm doing really well. I had some frozen lemonade and it was delicious. It set well in my stomach so they let me order a real dinner: penne pasta, dinner roll, green beans, cheesecake and chocolate icecream. And a PEPSI. Yummy-o!

Debby, my donor came down to see me. She looks great. She said her right side hurts...but they took her left kidney! She's so excited that it is working. That was her biggest fear.

I had a fever this morning. 103° F. We got it back down to normal, so I will probably move to a regular room, out of the ICU. Debby gets to go home tomorrow!

Yeah, Debby!

Still Good

I've learned that it's hard to get good sleep in the hospital. It's okay, though. I'm still feeling good! They increased my pain meds and promised I can have some clear liquids tomorrow.


Tuesday, September 13, 2011

Hard to Believe

I feel awesome. They weren't kidding when they said i'd feel better immediately. I'm in pain, but otherwise great!

So far all of the prayers are working! Love.

On The Way

In the car. Ready to get started after a terrible night. I slept for 45 minutes. Looking forward to getting some sleep.

Better, But Still Awake

Finally! I feel much better now. I took my morning meds about an hour ago. I usually take them around 6 am. I figure they can always give me something if my blood pressure is high when I get there...

I've Never Felt This Terrible

Seriously. They told me to hold some of my blood pressure medicines. Now I have the worst headache of all times. I've been throwing up since 11: 30.

Please, God. Help me make it until the surgery.

Monday, September 12, 2011

Last Day of Dialysis

I can't believe today is my last. I think the last three hours are going to drag.

In every class today someone asked of I'm nervous. It's crazy, but I'm not nervous at all! I'm ready to start feeling better. I'm not really sure what feeling good feels like!

Most people have read the article from Sunday's paper. Now channel 5 is doing a piece. Channel 5, six o'clock tonight, on the website, and all weekend long.

Our gal Val...

Friday, September 9, 2011

More About Yesterday

I got one call around lunchtime. It was from the pharmasists at Christ. There was something in the blood work they drew that made them think I needed to stop the drug for the study. My immune system is always hyped up because of the autoimmune disease, and I think that's what they saw. So, I will have a better change of not rejecting the kidney if they go with normal proceedure of drugs. I'll get IV medicine to induce my immune system to stop working on the day of the surgery.

It's fine, though. Taking the meds that I did won't hurt anything. It just isn't going to work enough. The IV meds will work better.

Then another call came right after lunch. It was the transplant coordinator and she said that my nephrologist wanted me to see my cardiologist ASAP. I was freaked out. Apparently there was something wrong with my chest x-ray.

Are you kidding??

She said that my heart just looks big because I'm so small right now. So, I had to go get an echo at Good Sam yesterday afternoon. But, good news is that the results were perfect...better than they have been since Anna was born. Hallelujah!

I had to drive the results from the echo and films from a chest x-ray up to Christ right after that. The coordinator wasn't there, so I left them for her to look at this morning. And, thank God, she called at 8:30 am to tell me that the doctors all looked at the results and are thrilled and ready to go on Tuesday.

I've about had it with all of this...Tuesdsay can't come quick enough.


Our picture is on the top of the front page today. The column will run on Sunday, September 11. It will be on the front page of the Metro section.

Lots of running around yesterday. They needed me to get an Echo and bring chest x-ray films up to Christ.

Everything is fine...all has been reviewed and we're still set to go on the 13th!

Friday, September 2, 2011

New Medicines

I went to Christ yesterday to talk about my medicines. They actually told me that I qualify to be part of a study. Here's how I understand it.

There are two different kinds of immunosuppresant drugs: induction and maintenance. The induction drugs "induce" your immune system sto stop working. The induction drugs are given through an IV in the operating room and then 4 more times every other day.
Once your immune system has been suppressed then the maintenance drugs take over and I take those forever.

But there is one maintenance drug that they think I can start two weeks before the surgery (yesterday-ish) and then I won't need as much of the induction drug. So I started taking this medicine yesterday and will continue it until the day of the surgery. They will still draw blood to decide if it's working like they thought it would. And if it doesn't seem to be working then they will just give me the regular doses of the induction drugs.

Yucky Arm

My fistula is gross. If you've seen it lately you'd agree...although you wouldn't say anything because you're too nice! And many of you have asked if they will "take it out" after the transplant. The answer is no, they won't. BUT, one of the nurses told me today that it should shrink after not being used. It will take a while, but it will go down, and I'm so excited!!

Thursday, September 1, 2011

No Blood Group

Okay, Hoxworth doesn't encourage directed donation of blood. It takes too long to get it cleaned and all that stuff. But you can still give because it will replenish what I use.

Wednesday, August 31, 2011

Want to Help?

So, here's one thing I'm thinking. If you want to help, consider giving blood. I'm type O, but you can donate even if you're not. I'm looking into the idea of a "Blood Group." Apparently it's when I set something up with Hoxworth so that you can donate blood in my name.

I'm going to call them later this morning and I'll post again when I find something out.

Monday, August 29, 2011

Six More Dialysis Days

After six more days of dialysis, I'm done! Hopefully it will be forever. I suppose it could be only five more dialysis days if I don't come on the day before the surgery. But if I want to feel my best, I'll come on Monday night before surgery on Tuesday.

My donor and I will BOTH be meeting at Christ on Tuesday, September 6th. I think she's relieved to be able to meet with the surgeon. We'll be meeting with them together.

They told her to take 1 ounce of milk of magnesia before the surgery...

Friday, August 26, 2011

September 13th

Yep! We've set a date...September 13, 2011. That's only a couple of weeks from now. I'm getting nervous, but I'm so anxious, too.

August 30th

Next Tuesday, a person from the school district wants to come to interview me and my donor. They want to take our picture and write up an article to send to the media. Check out the newspaper, I guess.

September 1st

Next Thursday, I have an appointment to meet with the pharmacists at Christ Hospital. They want to do some education about my transplant medication.

September 6th

This is the day it becomes real, I think. I will get one more blood test, a chest x-ray, and an EKG. I will also meet one more time with the surgeon, the transplant coordinator and the social worker. I will also pre-register for my surgery.

September 13th

On the big day, I have to report to the hospital at 6:00 am. The surgery will start at 7:30 am. That doesn't give me much time to think about it!

Thursday, August 18, 2011


I got the call from the hospital...we're ready to go! Possibly as early as September 13th.


Twelve Weeks

That's how long I'll be recovering. Seems like forever, but that's how long I was out last fall when I had Anna. But I wasn't ready to go back to school when my time was up last year!

My donor will be out for six weeks. Although she said if she's not ready to return she'll take more time. I don't blame her!

Poor Alli

I think it's starting to hit her that I'll be in the hospital. Jason started to talk to her about it. And the tears started to flow. She has been through so much. What a tough little girl.

Monday, August 15, 2011

Here We Go

All of the tests are done, and all results are good! My donor got a call from the transplant coordinator. She told her to go to school and tell them it's going to happen.

We're going to tell them tomorrow!

Friday, August 12, 2011

Breakfast with Donor

She had her ct scan this morning and then Jason, the girls and I met her for breakfast. Of course, we paid.

We are nearly set now! After we hear back from the transplant coordinator we'll let them know at school. She thinks we should start school and give them a couple of weeks to find two subs. Makes sense, but I'll have to take a million more unpaid sick days. If only Jason could find a job. That would relive alot of or stress.

Wednesday, August 10, 2011

One Last Test

Well, the good news keeps on coming. Her test results are all great! She gets a catscan on her kidney on Friday morning. This is just to pick which kidney they'll use and look at all of the blood vessels and connections and stuff. It really is the last test!

More to come...

Tuesday, August 9, 2011

Poor Ms. T

I've mentioned her before. She's 90 and lives alone. She's super opinionated and isn't afraid to speak her mind.

Last week after dialysis she went home and turned off her air conditioning and started to fry some bacon. Seven hours later her daughter found her on the kitchen floor. She broke both of her arms.

They obviously didn't let her go home alone. They didn't even let her go to her daughter's house. She's in a nursing home. She'll be there until she recovers.

One nurse says she'll be surprised if she does recover...

Monday, August 8, 2011


She did all of the remaining tests today: 24-hour uterine, last blood test, ekg, chest x-ray. We could know something this week.

Hope it's a good something.

Thursday, August 4, 2011


Spoke to my donor this week. She's going to do the last test today. This could happen soon.

So, I had my arm worked on Friday. The bleeding was better on Saturday. But...Tuesday after my treatment I bled for TWO HOURS! I'm so frustrated. Getting it worked on again tomorrow.


Friday, July 29, 2011

My Arm

I had my arm worked on today. At the beginning I could feel everything they were doing. I could even feel the warm blood running down my arm. I was so uncomfortable. But when I started flapping my other arm, they got the idea. It wasn't long before they gave me a sedative and I guess I fell asleep. I say, "I guess" because I can never remeber what happens after they give me that medicine.

I rememeber getting in the wheel chair after I was done. Then I remember asking for some crackers. I remember eating my crackers, drinking a Capri Sun and then getting dressed. They walked me out to Jason and he walked me to the car. I called my mom, I'm told, but I don't remember that converstaion.

We had lunch, well I had breakfast, and then picked up my pain meds. I asked for something besides vicodin because it always makes me hyper and keeps me awake. I know, it's weird cause it's supposed to knock you out. I'm not sure what this new medicine is called, but I was able to come home and take a nap.

Even after having the angipolasy today, they can still use my arm at dialysis tomorrow.

Wine Tasting

My friend from high school had a brother who once had a liver transplant. I think I talked about him last year around this time. Her family is having a fundraiser for the Life Center who helped her family during his transplant. Last year they sent us a check to help us...we couldn't believe it. And this year, they are doing it again. The party is on Saturday. We get to go this year, so that's fun! I can't drink much wine, but it will be nice to see all of the people who are willing to help us out.

Still waiting...

Thursday, July 28, 2011

Giving Nothing Away

My principal called the other day to talk about my plans for the year. I told him that I cannot predict when a transplant could happen. I tried really hard not to tell him who my potential donor is. I know she wants to be involved in telling school when the time comes.

Hopefully the time will come soon.

Wednesday, July 27, 2011

Dialysis at Home?

Not for me. Not now anyway. I'm waiting to see how transplant works out. But one of the loud ladies came in on Tuesday saying she wants this to be her last week in the clinic.

"Have you been training?" a tech asked.

"No," she responded.

I think the tech was afraid to tell her that it takes up to eight weeks of training before they let you dialyze at home. Plus, you have to be pretty responsible since you have to do it six days a week. She probably skips her treatment once a week. Not sure she's such a great candidate.

I do not want to be there when someone tells her that.

Sunday, July 24, 2011

Almost Standing

Wow, she's moving quickly now! Anna just started crawling within the past month, and now she's pulling herself up on everything she can get a grip on. And she'll let go and try to stand on her own. She only lasts a second or two, but she's trying hard!

One of the doctors mentioned the possibility of her needing braces on her legs if she's not walking by the time she's 15 months old. I think she'll be fine.

Funny Doctor Story

I met with my ob/gyn on Friday. It was the first check up I've had with him since he sent me to the high-risk doctors. Here's how our conversation went:

"So, you're getting pretty skinny."
"Yeah, they keep me pretty dry."
"What are you using for birth control?"
"Oh, I had my tubes tied."
"Thank goodness! We were going to have to have a serious conversation about that!"


Thursday, July 21, 2011

Nothing, Still

My donor is still on vacations, two weeks in Canada. She's going to do the last test soon, she promises.

My arm is giving me problems again. It's been bleeding long after I'm taken off the machine. They say it could be a sign on stenosis of my arm. Not sure exactly what that means, but I might need to go to the Access Center to have it worked on again. It's no big deal now that I'm not in school. And Jason can bring me, so it's no problem.

I was very excited to find out that one of the loud ladies had her chair moved! Ha, ha! It's been much easier to sleep. Today I got almost 3 hours of sleep. Good deal.

Thursday, July 14, 2011

Aunt Kelly

Did I mention that I'm going to be an Aunt? Jason's brother's wife is due at any moment! In fact, I'm pretty sure she's nearly dilated 6 inches. Any day now! I'm so excited!

In Between Vacations

My donor just finished on vacation and is on her way to Canada for two weeks. She called and said she promises to finish the testing as soon as she gets back.

I hope so...

Wednesday, July 13, 2011

There's No Stopping Her Now

On my last post I said that Anna wasn't really crawling, just scooting. Well, now she is! Like a crazy woman, too. She's all over the place. It's kind of hard to explain how she does it though. She sort of keeps one leg bent underneath her body and the other one is straight out behind her pushing off. It's funny, but I'm so glad she's moving around.

She'll be one next month!

Tuesday, July 5, 2011

Back By Popular Demand

Sorry...I'm not sure why I haven't been posting. I guess it's because I'm not on my computer every day now that I'm out of school.

All that I have been doing is going to dialysis and going to the pool. Tough life, huh? I'm getting sun and getting rest. It's still hard to get up at 5:15 on dialysis days.

Alli has swimming lessons on Monday, Tuesday, Wednesday and Thursday. It's nice to have Jason home so he can get her ready while I'm at dialysis. We'll often have Anna take a nap during swimming lessons and I can stay home with her and rest a bit. Then, it's lunch and back to the pool!

Anna Update

Anna is now almost 11 months old. I can't believe she was born nearly a year ago! She's rolling around on the floor, but not really crawling. We have to keep an eye on her cause she can get from one end of the room to the other! She will pull herself up onto her knees by holding on to a table or the couch.

She is still really small. My mom asked if she'll start taking regular milk instead of formula when she turns one. I'm not really sure. Alli did, but I think Anna is still so small that she needs the extra calories. We'll see.

No, no donor update.

Saturday, June 25, 2011

New Donor Update

My newest donor had her physical and met with the social worker. All is well. She has to do the 24-hour urine test but she doesn't want to do it until August. Then we will have to go to school to talk to the principal to tell him our plans.

Thursday, June 23, 2011

First Time Ever

Today wasn't good. I forgot my dialysis bag. And that meant no pillow, no blanket, and no headphones. They offered me a pillow and a sheet. The sheet was made of paper. It was better than nothing. But I couldn't really block out the light. And having no headphones made the loud ladies even more annoying.

Tuesday, June 21, 2011

Dialysis at Home?

They asked me again today if I would ever think of doing dialysis at home. If I do peritonial then I would not be able to swim because I'd have a catheter. But I'd be able to do it while I sleep. If I do hemo dialysis at home it would be 2 hours six days a week. I would have to sick myself, too. Not entirely sure how I feel about that.

I told them I want to wait to see how things turn out with my latest donor. She gets her first tests done tomorrow. She said she would keep me posted.

Wednesday, June 15, 2011

Way Too Much!

Woah, it's been a while since I gained that much weight between treatments. I gained 3.5 kilos from Satruday to Tuesday. And I felt it during treatment. My muscles and joints ached the whole time. I just wanted to get off the machine. When I got home I had to bring the girls to swimming lessons. That was tough because I was worn out! After that I slept for a couple of hours, and honestly could have slept even more. I was counting down the hours until bedtime.

And, I guess I was wrong about the loud lady. She's back. And she's louder than ever. Terrible.

Sunday, June 12, 2011


It's not what you think...nothing more to do with transplant at this time...

But, one of the loud ladies has been moved. Not just moved to another chair, to another time or place all together! She was not there on Saturday and I slept nearly the whole! Wow, that makes it much easier.

Thursday, June 9, 2011

Just Keep Calling

I called the hospital this morning. She said calls are in to my final donor. She also said that we can get all of the testing done in two days. We'll see.

Even if we do get the tests done that quickly, my donor doesn't want to do the surgery until August. She has two vacations planned for July. Fine by me.

Wednesday, June 8, 2011


Well, my donor backed out. I don't blame her, her doctors suggest she not go through with it. For medical reasons. But what pisses me off is that she told the transplant coordinator THREE WEEKS AGO! And I had a back-up just sitting there ready to move forward. I'm so angry!

So I guess all I can do is call her EVERY DAY until we get this last chance moving.

Tuesday, June 7, 2011

Still Nothing

Yep, nothing.

Friday, June 3, 2011

School's Out For Summer!

This year more than ever I'm so excited for summer to be here. Last summer was dreadful. The three before that I was in class every day. So, for the first time in four years I'll actually have a "relaxing" summer. Of course, I will still have dialysis three days a week. That is until I have surgery, if I do. That would really put a hamper on my "relaxing" summer, I guess. But I'll take it, for sure!

Tuesday, May 31, 2011

One More Day??

Today is Tuesday, and my next dialysis day is Thursday. And that (should be) the last day that I have dialysis and then school. We're officially done with school on Friday, and I can't wait!

I suppose that I might have to do dialysis again in the fall when I start back to school. But things still seem to be moving forward for the transplant. I haven't heard from my donor in a while, but the last time we were in touch she said she's still on board. And I keep getting bills for her appointments.

Still waiting, and staying hopeful.

Thursday, May 26, 2011

Still Waiting

School is almost out. Just one week to go. I would love to have surgery sometime soon, but I'm still waiting to hear. I feel terrible bugging my donor, but I'm so out of the loop. I want to email her again.

Is that bad?

Wednesday, May 25, 2011

Not Again

So, my phosphorus is high again. It's got to be one of two things...

1. The protein shakes I've been drinking. Anything with protein has phosphorus. I need to take extra binders when I drink them.
2. It could be the several days when I had 5 bowls of Honey Combs each day. Yeah, that could be a problem.

I have to watch it for the next couple of days or the doctor may want to add my 15 minutes back on. I guess it's not that big of a deal since school will be out soon. I won't have to rush around to get home and back to school.

Remember when we were young-er and we could eat whatever we wanted? I miss that.

Thursday, May 19, 2011

New Seat

I got my new seat today and it is a little bit closer to the loud ladies. And they were loud again today. But, the good news is that I can't see the other lady that picks her nose. I guess that's good.

I've realized that the reason I'm getting so frustrated with the progress of the transplant is because I'm not in control of what happens. I hate that. I feel like I need to know where the kids are going to be when I'm recovering and I need to plan meals for the family while I'm in the hospital. I'm a planner...in case you didn't know.

Tuesday, May 17, 2011

Moving Again

Since my time was reduced by 15 minutes it apparently messes up the schedule at dialysis. So I'm getting moved to another chair. It will still be one chair away from the loud ladies, but away from the lady who talks to herself. Could work out.

My donor was supposed to meet with a social worker last week but the social worker had to reschedule. It seems like nobody is really in a hurry to get us in and checked out.

I never got my hopes up this time...but they are starting to fall.

Sunday, May 15, 2011

"Happy" Anniversary

One year ago...I was sick. Really sick. I was in the hospital on May 13th and started dialysis on May 14th.

One year ago...We weren't sure what was going to happen to Anna. Honestly, we didn't think she was going to make it.

One year ago...Jason told my parents I was dying. I guess I was.

One year ago...My life changed. It will never be the same.

One year ago...they saved me.

"Happy" Anniversary.

Thursday, May 12, 2011

Ahh...No Rushing

I was let off the machine 15 minutes early today. It was great! I had time to get home, shower, stop and get lunch, and still get to school to make copies and finish my plans for the day. It was great and I feel alot more relaxed.

We finished up transfering the title to my Cavalier to the lady on our street. It's nice to have a bigger vehicle.

Wednesday, May 11, 2011

Good Appointment

I met with my nephrologist today. He was happy with my blood pressure, to a certain extent. We made one medication correction. He was even HAPPIER with my phosphorus levels. So, I asked him how much a milk shake would change my phosphorus levels. He said he'd never admit that he said it, but I can have a milk shake as long as I take a couple extra pills. I just can't do it all the time.

Guess what I did on the way home...got a malt! Yep, it was delicious.

And he also reduced my time by 15 minutes. An eternity!

Tuesday, May 10, 2011


I spoke to three Anatomy classes yesterday because they are learning about the kidneys. It was great! They asked so many great questions and I let them feel my arm. It was the talk of the town! It's cool to be able to tell my story and think that someone may be learning something.

Maybe they'll become organ donors.

Monday, May 9, 2011


Saturday was uneventful. Not much happened during dialysis...but we bought an SUV afterwards! We got a good deal and since we sold my Cavalier it ends up working out well for us!

Thursday, May 5, 2011


The ladies at the end of the row were pretty quiet today. Not so bad. And the lady next to me that normally talks in her sleep wasn't too bad, either. But then when the nurse was unpacking a box the lady on the other side of me was so excited to see that there was bubble wrap in each box. She asked for the wrap since it was getting thrown away...

And instead of taking it home she started popping it! Each and every bubble...pop! Pop!

Are you kidding?

Wednesday, May 4, 2011

I Don't Remember

So, as I left diaylsis yesterday a lady yelled out, "You didn't get a kidney yet?" I turned around and looked at her, thinking "If I did, would I be here?" I guess I looked at her funny because she said, "You don't remember me, do you?" I didn't.

It was a lady from Good Sam Dialysis who apparently transfered to Delhi Davita. She asked how the baby is...very nice. I still can't remember her from the hospital. I keep trying to think of each chair, but I just can't remember. I'm usually pretty good at that.

Maybe dialysis sucks your brain out, too...

Saturday, April 30, 2011

Thank Goodness

Jason's night job is over. It was a two week deal...they finished grading all of the tests. They will probably ask him to start again soon for another project. Although we can use the money, I hope he says no. The money isn't worth the stress I've been feeling. But today we have no plans, so I think I get to take a nap!

The girls spent the night at my mom and dad's last night so Jason and I could go to a Reds game with my cousin. It was fun...cold...but we had a good time. I can't wait to see the girls this morning!

Thursday, April 28, 2011

Nothing New

Not much new to report. We're really busy at home since Jason is working a long-term sub job and a test grading job at night. He's home after 10:00pm, so I've been doing it almost all alone.

I'm tired...

Monday, April 25, 2011

The Latest From My Match

I got an email from my match today. Her first appointment went well...100% healthy! Our coordinator is supposed to call her about setting up the rest of the appointments. But my match is in Boston visiting her newborn nephew. Lucky her!

The Nurse Practitioner stopped by today. She's going to check my labs on Thursday one more time and if they look good then she'll reduce my time by 15 minutes! I never thought 15 minutes would mean so much.

Spring Break

I was on break last week and I realized that meant I didn't have my computer with me all week. So, I'm sorry I haven't updated my blog as much as many of you would like (Dad).

Things are going well. I'm going to get in touch with my match today to see how things are going. If she's having any doubts I'm going to ask her to let me know so that my OTHER match can start getting the rest of the testing going. We'll see!

The girls are great...Anna had a couple of doctors appointments last week. Her developement is that of a 6-7 month old (she's chronologically 8 months old, so we're okay with that). Her ears and eyes are great. They did mention that her ankles bend a little more than they are supposed to. So we go back in 9 months and if she's not walking by then she might need some short braces on her legs. Nothing to worry about right now.

Jason's doing great with his "diet." He says he's lost about 25 pounds since we found out abou his diabetes. Good deal...he looks great. That, and getting contacts and he's a whole different person!

Saturday, April 23, 2011

Blogging on My Phone

First time for everything. Expect some typos!

Things have been going well lately, I guess. I have felt weak this week. It's kind of unexpected because I didn't have to work this week. I was sick to my stomach on Tuesday. I felt much better after I threw up. I think I just need to make sure I eat when I get home. Sometimes I get a headache that makes me feel sick and eating helps.

Tomorrow is Easter and my phosphorus had been good enough that I think I can eat a Reece's peanut butter egg. I can't wait!

Thursday, April 14, 2011

Good Labs

My labs came back today and they were really good! My phosphorus is 3.6. It needs to be below 5...yes! I told them I was going to go home and eat some ice cream. They suggested I not do that. Dang.

I heard today that if your phosphorus is too high then certain parts of your body could turn black and fall off. Yikes! I saw pictures of toes falling off, but the nurse was talking about female and male body parts falling off. Yowzers!

Wednesday, April 13, 2011

Holy Headache

Yesterday after school was terrible. I had the worst headache ever! I'm not exactly sure what makes a headache a migraine, but it was a bad one. I threw up after school...thank goodness the garbage can was there. I had a rough time getting home. I almost pulled over. I was sweaty and cold at the same time...wonderful combination. And when I got home it was even worse. I took some advil and checked my blood pressure. It was a little high, so I took some BP meds.

About 45 minutes later I was able to get a little nap in and I felt 100 times better. I took the girls to get pictures taken (so cute) and at dinner like normal. I even had dessert.

Tuesday, April 12, 2011


Today I was moved over one chair. And it was so peaceful! Plus, the doctor said that we can talk about reducing my time if I can keep my phosphorus down. It was down this week, so yay!

Monday, April 11, 2011

Moving...Not Far

So, I made a comment on Saturday about how loud the ladies next to me are. And my nurse agreed. She said she's thinking about moving them, but it would be easier to move me. I'd only go over one chair, but it would at least be another 5 feet away. I jumped at that idea. But if there's another chair that opens up across the room, sign me up!

I've started to NOT bring my computer with me to dialysis. It's becoming more of a hassel. So if you don't see a blog post immediatly on Tuesday, Thursday or Saturday, it's not because something went wrong. I'll get to posting shortly after I get off.

Thursday, April 7, 2011


Today was not a good dialysis day. I felt crummy, but I figured out that was because I didn't' take my steroid this morning. And then the ladies next to me were incredibly loud again. I can't stand it! And another lady turns her TV up as loud as possible. Grr...

But today I am officially on the kidney transplant list! I got confirmation from our transplant coordinator this morning. Yeah!

This week I've been noticing that I'm having muscle twitches. It doesn't happen when I'm up and walking around, but when I'm sitting or laying down. They think it's my potassium. They told me to go to the ER if it doesn't get better. But in the meantime they changed my potassium bath so that less potassium is removed from my blood. I think I might eat a banana.

Tuesday, April 5, 2011

Long Weekend

Since we left for Cleveland on Friday, I went Saturday, Sunday and Monday with a treatment. I gained 3.2 kilos (7-ish pounds). So today's treatment was harder than usual. But my blood pressure was really good the whole time. Nice.

Monday, April 4, 2011

A Long Night

Sorry I didn't blog on Saturday. I actually was dialyzed on Friday night, instead. We went to Cleveland for the weekend...

But Thursday night was eventful to say the least. I had a nose bleed that started at 8:30 pm. I have never seen so much blood come out of a persons nose or mouth. It was disgusting! By 10:00 I was getting pretty scared, so I called my mom to come back to the house and stay with the girls while Jason took me to the ER.

They actually took me in pretty quickly. I think it's because I had just sprayed blood all over the public restroom. About a half-hour after I got a room the doctor came in to try to get the bleeding to stop. Do you know what they use to make noses stop bleeding? A mixture of Afrin nose spray and...COCAINE! Seriously, the bottle said "cocaine" and I just joked about it. But the doctor said, "Yep, it's the real thing." It apparently constricts the blood vessels and make the bleeding stop. It also numbed my nose and lips a bit.

But that wasn't the worst part. After another hour he decided to "pack" my nose. I thought he'd just shove some cotton up my nostril, but he had another idea. A "rhino-rocket." Sounds cool. Hurts like hell. It's a plastic balloon that gets stuck in your nose (I swear it almost touched my brain). Then they pump air into it to put pressure on the vessel that is bleeding. You should also know that a large hard plastic tube hangs out of the nose and is taped to the side of your face. Uh huh. Attractive.

Needless to say, the doctor told me to stay home from school on Friday. Another unpaid day. But it hurt so bad and I'm not sure I could have made it though the day if I did go. The pain meds are all fine and dandy, but they usually just make me feel drunk...and still in pain.

Thursday, March 31, 2011

The Blind Leading the Blind

Today both of the blind patients were dropped off at the same time, and left outside the front door. The door was locked so the driver just left them there. Nice.

Then, the one new nurse that I think I've blogged about before, started to walk one of them to his chair. BUT, he picked the wrong blind guy and took him to the wrong chair. No big deal, right? Wrong! We reuse our filters, so he could have been hooked up to someone elses machine and used someone elses filter! Could you imagine?!

And, finally, when I left the building today the driver had parked his big bus in front of my car so I couldn't get out. I'm starting to get really upset about it, too. Ugh.

Tuesday, March 29, 2011

The Better Match

So, I just got an email from the girl from high school. She's the better match! They also called my friend that I work with and said that she's still a possiblity, but she'll be my backup. This might really happen!

I will have less say in when we do the surgery now that the donor is not a teacher. But, hell, I don't care when we do it! It's totally her call.

Saturday, March 26, 2011


I almost got in a fight with a driver today. He's a driver from a private company that drives one of the blind dialysis patients. He drives a small bus and instead of parking in one of the three handicapped parking places he parked in all three! So, I just parked in the first available regular spot and there was plenty of room for him to get out. He came out wagging his finger at me and telling me that I needed to move.
"No, no. You realize that you're the one in the wrong, right?" I asked.
"The man is blind!" he responded.
"Yes," I said, "but you're not. Pick one parking spot next time."

Disprespectful. Why can't everyone think of other people before they do things?

Friday, March 25, 2011

Don't Get Your Hopes Up, Kid

I got a text from Martha yesterday. A girl I went to high school with got tested without telling me. And she's a match. I seriously haven't seen her since graduation. I can't believe it.

And the lady from work who got tested told me today that she's a match, too! They are going to Christ on Tuesday to see who is a better match. Then they'll continue the testing that Jason went through.

When the Reds went to the World Series in 1990, all my dad could say to me was, "Don't get your hopes up, kid." Heh...

Thursday, March 24, 2011

The Meeting

I know surgeons are busy, but a meeting set for 1:00 shouldn't begin at 2:15 and last only 5 minutes...

Anyway, it was a good meeting. On Tuesday of next week my files will be brought to the kidney transplant forum. That's a group of all of the kidney doctors at Christ. They will look over my information and then decide to put my name on the list. They say there is NO reason why they wouldn't approve it. Yes!

They are reluctant to put you on the list if you haven't tried to find your own donor. But she told me that she has had to rule out 16 people who want to give me a kidney. Sixteen people! I think I know of 7 people. If you sent in paperwork, Thank you!

So, the list doesn't work the way I thought. There are 241 people on the list for a kidney in the region. But I'm not "on the bottom." If they find a kidney that's a perfect match for me, then I get it. It could be 10 years or 10 minutes. I could get a call any time after Tuesday. I will have to get a new phone, though. We currently have Cincinnati Bell and the service is terrible. We don't get service at home or in many places at school. I hear Verizon is good...and I need my phone to be working all the time just in case I get THE CALL.

Tuesday, March 22, 2011

Bad Sleep

Not sure what it was last night, but I kept waking myself up snoring. I know I snore, but it usually means I'm sleeping sound. I guess it could have been my sinuses, so I took some sinus medicine. That was midnight. Didn't get back to sleep. My sinuses were better!

We meet with the surgeon today. I asked Jason to come with me. Hopefully we'll leave today knowing that we're moving forward in one direction. Still waiting on word about the other possible match.


Saturday, March 19, 2011

Protein Powder

My protein level is low and has been since I was pregnant. I don't eat enough meat and I'm not allowed to eat beans or nuts because of the phosphorus. So I bought some protein powder the other day. I can't have chocolate so I bought vanilla. It is TERRIBLE! I've been drinking it when I take my pills since I have to chug it anyway. Ugh. I'm going to try to mix it in a cold coffee drink. We'll see.

Still no word on a possible match. Should be hearing soon. And Tuesday I meet with the surgeon to officially get me on the cadaver list. It could take a while, like years, to get a call that they've found me a kidney. But, it could be quick too. You never know.

Can you imaging getting THAT phone call?

Thursday, March 17, 2011


Okay, so there's this lady who comes in every day in a Buick and has the music turned up so loud. It's terrible and the language is terrible and it just makes me mad. But this week I've noticed that EVERY time I look at her she's picking her nose. Ugh! She's so gross.

Tuesday, March 15, 2011


That's one way to keep others from waking me up. I haven't tried headphones in a while because when I first started here they didn't work for some reason. Git a set today that work and I'm ready for a good nap!

Anna has spent the past four nights sleeping in her bed instead of in our room. And the past two mornings when we left the house she was still asleep. Once we get her in there and settled down (around 8:30) she doesn't wake up until morning. Alli was a good sleeper, too. Guess we're lucky.

Saturday, March 12, 2011

Shut It!

I'm starting to get annoyed my Ms. T. Everyday we're here she tells me how the cost of her medications have gone up. That's after she asks me if I've ever heard of cancer of the sinuses. That's how her husband "recently" died...in 1981.

But she's not as annoying as the LOUD lady two away from me. She never shuts up. And nobody listens to her! She's just yelling at the TV or something. And if she calls someone one her cell phone she's even louder. She comes in after I do, so I try to get to sleep before she comes in. But she ALWAYS wakes me up. I think that is so disrespectful.

Thursday, March 10, 2011

Settling Down

My blood pressure has settled down since the weekend. I've been taking my blood pressure before I decide if I need to take a pill or not. I'm an expert at self-medication.

I think I'm having a Sjogren's flare. I had some itchy spots on my face and I felt tired and achy. I took some more of my steroid to counter act the symptoms. Queen of self-medication.

Tuesday, March 8, 2011

Oh, What a Weekend

I dialyzed on Friday evening and Saturday morning. Yikes! But on Friday my blood pressure was out of control...223 over something not good. So, the doctor on call decided to have me increase one of my meds. I was taking 1 pill twice a day. He wanted me to take 2 pills three times a day. Okay.

It worked, I guess. My pressure came down. It really came down. At one point it was 75/53. Not good. And if you've ever had your blood pressure drop like that, I'm sorry. It's the worst feeling in the world. I woke up at 4 am on Sunday sweating, freezing, cramping, achy...misserable. I took some ibuprofen, put on a sweatshirt, and Jason got me two extra blankets. It wasn't until I raised my feet that I felt the blood start rushing back to my heart and I felt better.

From then on I've been taking my blood pressure and medicating accordingly. It hasn't been that high, so I om only taking one of those pills 2 or 3 times a day. I'll be talking to a doctor today.

Friday, March 4, 2011

No Hot Water, No Dialysis

They tried to get me on in Western Hills and in White Oak yesterday since the hot water heater was broken. But, no such luck. I didn't get on at all yesterday. But I'm on now.

I gained alot since its a day longer than usual. I gained 3.6 kilos. And I gain it all in my face...so it's HUGE! They won't get all of the weight off today, but that's okay. I'm coming back for my regular treatment tomorrow morning. Yep, I'm done here at 7:00 pm and I'm back again at 6:00 am. But at least I'll be clean, right? I'm thinking I should be able to have a malt tonight since it'll just come off tomorrow. I'm not sure the nurses would agree with my reasoning.

UDF is calling my name!

Thursday, March 3, 2011


We're in the lobby of DaVita. Something's wrong with the water heat or something. They need warm water to make the bicarbonate. Without bicarbonate we'll get sick. So, we're waiting for the water to heat up and we're getting on really late. They said we can decide to stay on the whole time or get off at our regular time. I'll have to get off at the regular time so I can get to work.

Food, Glorious Food

While we're waiting, we're talking about food that we miss. It's making me hungry...and making me want a big glass of milk. The rest of the stuff they're talking about I can do without. But the milk is what I miss. And I've been really good about it lately...my phosphorus level was finally "good." Not just "better," it was GOOD! How about that?

Tuesday, March 1, 2011


What is normal? Nothing in my life has been normal lately. But, apparently my foot x-ray is normal. That must mean I have "the gout." Heh heh. How many 33-year-old women do you know with gout? How many 33-year-olds do you know with kidney disease? Lord.

Party Time, Excellent

Alli turned 6 yesterday. Six years since my life changed...for the better. We had a party for her on Sunday. She and her friends had a great time. I guess I had a good time, too, because I gained alot more weight than usual. I gained 3.3 kilos (7.26 lbs). I'm expecting a tough treatment today. But I finally remembered to bring a larger blanket today, so that will help. During a rough treatment my blood pressure will drop and I'll get really cold. The blanket will help.

Saturday, February 26, 2011


Gout is the build up of uric acid in your joints. People with kidney disease are susceptible because our kidneys can't flush out the uric acid. It's a type of arthritis that can be treated by anti-inflammatory drugs.

I might have gout. We aren't sure yet. The doctor took some blood to check my uric acid level. He gave me a prescription to get an x-ray and has me on a steroid. I'm getting the x-ray after treatment today. I hope the steroid makes me hungry! I'd love to gain some weight.

Thursday, February 24, 2011

Broken Rules

Yesterday was my birthday, so we had to break a few rules. Jason and I ate really well all day so we could eat bad at dinner. We went to PF Chan's and I had TWO iced teas. I also had the world's largest chocolate cake! I'm not supposed to eat chocolate and he can't have sugar. Oh, well.

Looking Better

My catheter sight looks pretty nasty, but it's getting better I guess. They told me on Tuesday that they've never seen anyone bruise like I did. Yeah, well that's how things have been going for me lately.

Oh, Lady

The lady across the room, the screamer, is in quite a mood today. There are two people holding down her left arm while a third person gets her needles in the right. She lives in a nursing home and they won't help put the numbing cream on her. Sad.

My Foot

Pile it on! What else could go wrong? How about my foot? It hurts like crazy and I'm not sure why. It's in one particular spot on the top of my foot and it feels like it did when I had the stress fracture a couple of years ago. Guess I'll go get an x-ray.

Tuesday, February 22, 2011


I had some blood drawn yesterday for another possible match. We should hear something in three weeks.

Another New Medication

Everyone seems baffled at my blood pressure. This morning it was 190/110. And I'm already on three BP meds! So, today I start another. This one is a diuretic. I'm not sure how it works, but I'm anxious to see if it will make me pee.

Saturday, February 19, 2011


I finally had my catheter removed yesterday. I had to take a day off of work, but I got to bring Alli to school and pick her up. I was told I could drive myself to the Access Center. They would not put me under, just numb the entrance site. I was so nervous. The catheter goes all of the way into my heart!

So, the doctor numbed it and the shots hurt. I didn't feel the actual removal of the catheter, but it had been in for so long that the tissue around it had attached itself directly to the catheter. So the doctor had to do alot of cutting and snipping. He said the site usually doesn't heal really nice. It's usually an ugly scar. But he said he'd do a bit of plastic surgery to "keep [me] looking pretty." They don't normally worry about it with their elderly patients.

But all the pulling and snipping left me in pain. I had a hard time sleeping because I couldn't get comfortable. Hopefully the pain won't last long. Tylenol is crap.

Thursday, February 17, 2011

Another Possible Match

Another person from school is getting tested. We both have appointments on Monday for the initial test. This is the one that takes 3 weeks or so to get the results.

I'd like to think that if I had a FAMILY member in this situation that I'd step up and get tested. But I guess you never know until you are faced with the decision yourself...

Starting to feel sorry for myself again. Things were looking so good.

Wednesday, February 16, 2011

Bad News

Well, he's diabetic. It's for sure. Jason has to take medicine two times a day to help increase his insulin levels. No shots. We'll keep an eye on his blood pressure and cholesterol, too. Apparently people with diabetes usually die of heart disease. But as of right now his blood pressure is great. He had an EKG last week and that was good. The last time he had his cholesterol checked it was great, too. So we'll just count our blessings that we caught it early, before he had any symptoms.

Remember how I said that Anna saved my life? Guess that makes two of us. Angel.

Tuesday, February 15, 2011


Jason sees the doctor today. He had to fast after 9:00 last night. We had a BIG dinner. He's nervous, so am I. I think he still wants to donate. He said he's going to "fix" the diabetes and then donate. Don't think it works that way.

I thought I was here on the wrong day today. There were extra cars in the lot when I pulled up. And there was a lady being brought in on a bed which doesn't normally happen. Then another woman walked in and I didn't recognize her. I finally saw Ms. T, so I came in.

It turns out that Ms. Haddie has been in the hospital for two weeks and just returned today. She was in a bed because she needs some physical therapy to get her strength back. The other woman was her daughter. She came in to get Ms. Haddie set up and to feed her some yogurt. Ms. Haddie is 89 years old.

Heart Day

Yesterday I had an echo of my heart. How appropriate since it was "heart day." Results to come soon.

Saturday, February 12, 2011


Jason made an appointment to see our family doctor on Tuesday morning. They told him to fast for 12 hours, but he doesn't have to do a 3-hour test this time. I suppose he may have to do another one of those if this test comes back positive. I'm relieved that he's going to get this figured out.

Moving Forward

Now that we're starting the donor search over, I'm going to talk to my doctor about home dialysis. If we do the one that I want to do, it would require another surgery to get a catheter placed in my abdomen. But then I could just hook up to a machine and dialyze while I sleep. I would do it every night, but at least I could lead a pretty normal daytime life.


If Jason really is diabetic then he'll need to change his diet. I've decided that if you take all of the things that I can eat and line them up next to all the things he can eat...you'll find very few matches. We may never eat a common meal again. Great.

Thursday, February 10, 2011

Two Sick Parents

Jason has diabetes. The results weren't even close to normal. We don't know if it's type 1 ore type 2. He needs to see our regular doctor to figure that out.

The nurses here aren't convinced that the labs ran the test correctly. One suggests that he has the test run again. He has had no symptoms and no family history and he's not obese.

I need him to get this figured out so that the girls will have one healthy parent. I'm worried about him.

This was a deal-breaker.


Grrr! No news yet. Jason isn't used to getting tests done, so he didn't ask how long we'd have to wait. He said he'd call later today. We'll see what they say.


With bigger needles comes faster blood flow. And when I left on Tuesday I felt terrible. My blood was getting cleaned faster than normal. It really wore me out. They lowered the flow today because I said something about how bad I felt. The nurses can't believe I can go at a flow of 450 for 4 hours. I'm just so tiny!

Tuesday, February 8, 2011

A Week And Then..

We're using the largest needles today and the highest blood flow. It's going well so far! And the head nurse said, "Let's give it a week then we'll get your catheter out." Super! I can't wait! Anna has started grabbing it if I'm wearing a tank top. The last thing I need is for her to pull it out. Could you imagine?

Jason's Tests

I feel terrible. He had to go through alot. On Sunday he collected his urine. On Monday he had to fast before going to the hospital. His tests started at 8 am, so he wasn't too worried about getting hungry. That is until they told him he had to do the 3 hour glucose test. Those of us who have been pregnant may know what I'm talking about. You have to drink this orange yucky sweet stuff and get your blood taken every half hour for 3 hours. I wouldn't normally feel sorry for him since I had to do the test when I was pregnant with Alli, but he is doing all of this for me. That's love.

Jason also had an EKG (which was normal) and a chest x-ray. I suppose this is it. The sugar test is going to be the one to wait for and then we'll know. More waiting.

Monday, February 7, 2011

Food I Miss

I know it's not a dialysis day, but I started to compile a list of foods that I miss. I thought I'd share it. We can call it my "MUST Have After Surgery" list. Here goes:
1. Chocolate Malt from UDF
2. Coke
3. Peanuts
4. Sharp Cheddar Cheese on Crackers
5. Milk
6. Yogurt
7. Snickers
8. Beer
9. Pizza
These are all of the things that are terrible for me and that I'm avoiding. I miss them.

Saturday, February 5, 2011

Very Nice

Ms. T is about 600 years old. But today she offered to help in any way we need when we have surgery. So nice. She won't stop talking to me today. She's half way across the room and doesn't talk that loud, so I'm just nodding and smiling. I hope she goes to sleep soon.

Latest Appointment

My appointment on Thursday was with my kidney doctor. He got a call from my cardiologist and that's why he wanted to see me right away. My blood pressure is out of control and it's putting a strain on my heart. So he decided to double one of my current medications and we have a plan if it doesn't improve in the next 10 days. We'll double it one more time and then we'll add another medication if that doesn't work in another 10 days. That would be my 4th blood pressure medication. Before May my blood pressure had always been normal to low. It's crazy what broken kidneys can do to your body.

Guest Speaker

One of the science teachers at school mentioned in passing that he'd like me to come talk to his classes when he teaches about kidneys. I have to find out what he wants me to talk about. Does he want me to tell my story or have a Power Point and "teach" about kidney function? Should be fun, though.

Thursday, February 3, 2011

A Possible Issue

Well, it couldn't be easy for us. Jason's physical was generally fine, but there was a possible issue. They found glucose in his urine. So that could mean one of two things: It could be no big deal, or it could mean he has diabetes. They say that a urine test for diabetes isn't a very good test, so on Monday he has to fast before going in for his other tests and they will draw some blood. Until then we just sit and worry about him. He has no other symptoms of diabetes.

And, yes, if he's diabetic it's a deal breaker. We start the search over again.

To The Doctor

My kidney doctor's office called this week to set up an appointment. No big deal, right? But his assistant said I need to come in TODAY. She said he's worried about my blood pressure...and probably about my weight, too. I'm worried now. So today I get off of dialysis, go to work for two classes and have a friend cover my 7th bell so I can get to his office by 2:45. Crazy day.

Tuesday, February 1, 2011

Bigger Needles

Yep, we're using bigger needles today. I was afraid they would hurt, but I guess I did an okay job with my cream. Plus, the lady across the unit didn't show up today. So, no screaming. That's always nice. And since the needles are larger they can set my blood flow higher. That means my blood will get cleaner faster and maybe my time can get cut down. That would be amazing!

It's a good thing that at least one person didn't show up today. When I pulled in there was only one car here, so I knew they were short staffed. They took us in late because several techs said they couldn't make it in. I didn't think the roads were that bad, but school is on a 2-hour delay.


Jason gets a physical today. It's with a nurse practitioner at the Kidney and Hypertension Center. She happens to be my nephrologist's wife. Jason has never had a female doctor before, so he's a little nervous. But he'll be fine.

Saturday, January 29, 2011

Too Dry

I saw my cardiologist yesterday. Before I even walked in her office she said, "You're too skinny. Are you okay?" Finally! It's about time someone noticed. I told her that the doctors here want to keep lowering my dry weight because my blood pressure is high. She is worried that I'm so dry that my heart rate is elevated. She prescribed another blood pressure medicine and called the kidney doctors to yell at them for drying me out so much. She used the words "dry as a prune." Nice image.

I'm still on 17-gauge needles. But on Tuesday they will use 16- and next week 15-. As the needle gets bigger I will get a better treatment because the blood can flow faster. And once we get to the biggest needles they will take my catheter out. I can't wait! The other day Alli woke up and said, "Mama, I hope nobody else in our family needs to have tubes in them." Sick Mom. She also said that I have to go to the hospital alot. Sick Mom.

Thursday, January 27, 2011

No Worries

Jason went to Christ yesterday to meet with the social worker. I was so nervous, and I think he was, too. But it went great! He said he "passed." He answered questions about his medical history, his family's medical history and our jobs and support system. He told her that almost all of our friends are teachers or stay at home moms, so we'll have a ton of support as we recover. We'll need help vacuuming and doing laundry. We won't be able to lift anything for a while. But we'll get through it with help.

The next step is a physical with a physician's assistant on Tuesday. Then he has to do a 24-hour urine collection on Super Bowl Sunday. Yes, he's allowed to drink beer, he just has to drink alot of water, too. He'll bring his sample to the hospital the next day and will have his EKG and an ultrasound. Then we set a date!

I'm still having a hard time believing this is really happening.

Now We're Cussing, Too

It's normal for the lady across the room to scream when they stick her. But today she must be in a particularly bad mood. Cause when they tried to stick her this morning she did more than just yell. She was cursing like a sailor. "I wish you'd stop this s**t," she yelled. "Stop, you MFer!" Yikes!

Lowering My Weight

If you've seen me lately you'd wonder what they are doing to me. Lowering my weight? I already look like a twig. But my blood pressure is still high and they think it's because I have too much fluid on. So they are bringing me down another kilo to 56.5 (about 124 pounds). I may shrivel away before we have the surgery! I meet with my cardiologist tomorrow, so maybe she'll adjust my meds so that I can keep some extra weight on.

Tuesday, January 25, 2011

The Screamers

We've got two of them today. The lady across the Unit always screams. But today, Ms. T was screaming. Her arm clotted on Saturday so she got to go home. Nice, but today's treatment will probably be hard for her. She said she had to go to the Access Center to have her arm worked on and she was afraid to use her cream this morning. I would have called to make sure I could use it. She uses much larger needles than I do, too. Yowzers!

Jason to Christ

Tomorrow is a big day for Jason, and me. He goes to the hospital to meet with the social worker. I'm afraid they are going to try to talk him out of it. He's afraid that his humor will make them think he's not serious. Like when he says he's only going to do it so he doesn't have to buy me a Christmas gift EVER again.

Big Gain

I gained 2.9 kilos this weekend, almost 6.5 pounds. We did alot of work around the house this weekend, and I guess I drank alot of water when I was tired and worn out. We took down wall paper...I should have had something stronger than water!

Thursday, January 20, 2011

Not As Nice

Getting stuck this morning was not as nice as Tuesday. I guess they missed the exact spot where I put the cream. And then it wouldn't start right so she had to dig a little. But I'm still alive.

Jason got a call yesterday about setting up an appointment with the nephrologist. He has to have a physical to move forward with the transplant process. Yay! We're moving forward.

Snow Day!

Tuesday, January 18, 2011

Yep, My Arm

I walked in and decided to tell the tech that the doctor wants to use my arm. No use delaying the inevitable. And I remembered my cream today, so I guess it's time. But as soon as we started the discussion the lady across the room screamed. Great. I made a face and everyone just giggled. Then another scream. Are you kidding? Today? The tech sticking her said not to worry. She screams just to be screaming. Fantastic.

So, I got up about 15 minutes early to put my cream on. I have to wrap my arm in plastic wrap after it's applied. Jason thinks that it helps it work better, but I think it's just so it doesn't get on my clothes. When she started feeling my arm I could tell it was numb. Promising, but I wondered how deep the numb was. "One, two, three, OUCH," says the tech. But I didn't feel it. Amazing! Again, "One, two, three, OUCH." Not a thing. I LOVE this cream! It's well worth getting up 15 minutes early.

Uh, looks like someone is leaving. Not sure what's going on, but a patient who is normally here with me is packing up. Weird. It's a day after a weekend, so she really needs to be here. But what do I know.

I gained 2.5 kilos this weekend. That's the most I gain. I was super thirsty yesterday. Last time I gained this much I had a tough treatment. Good thing the kids are taking tests today. I might need a rest.

Saturday, January 15, 2011

My Arm, Again!

Here we go. The doctor didn't know that I have a fistula. I guess I did a good job of hiding it...I hate getting stuck. But, he figured it out and now he wants to start using it again. Dang it! But he might need to send me to the Access Center again to have it cleaned up. I don't know why. It seems that every time they "balloon" it the pressure is still high the very next day.

Today I walked in and they had the needles ready to go. But I didn't put my numbing cream on this morning. I didn't want to sound like the lady across the way, so I talked them into using my catheter one more time. On Tuesday I'll put the cream on before I get here. But they tell me I should put it on about and hour before I get here. Problem is I only get up half an hour before I'm supposed to be here. Guess I need to start getting up earlier. Maybe I could sit and eat breakfast in the morning. Might be nice.

Thursday, January 13, 2011

Lots of Labs

They just drew some labs on me again today. It looked like the normal amount. But the tech who drew them said she hasn't drawn this many labs in years. Really? I guess I'm still a special case. Who would have thought?

Snow Day

We did end up being cancelled on Tuesday. Jason lost his sub job that day. But we ended up ahead because I didn't have to take my half-day. I guess my half-day is worth more than his full day.

Jason's been working every day since he stopped student teaching. Thank goodness! We like having two incomes again. Now's the time for him to start looking for a job for next year. That would be another prayer answered. He probably won't be able to interview during the summer if we have the surgery, so the sooner the better.


Apparently the Tuesday, Thursday, Saturday group is generally an odd group of people. A tech on Tuesday told me that they aren't all like me. She said that the MWF people are usually more interested in their care and have jobs. I always thought there was a pretty odd group here with me.


I think someone forgot her numbing cream this morning. We all have a prescription for cream to put on our arms so that when they stick us it doesn't hurt so bad. But this morning one of the patients was screaming when she was being stuck. Yikes! I'm glad they are still running me on my catheter. It's supposed to be dangerous to keep a catheter for this long. But I haven't had an infection, so they aren't really against keeping it until we have the surgery. I can't wait to get it out.

Tuesday, January 11, 2011

We'll See

A 2-hour delay without a flake on the ground. Interesting. They say the snow is coming and will be falling around 9:00, when we should be coming in to school. I bet we'll be closed. We'll see. But if we're not, I should be able to get into school without needing a sub. That means I should be able to save my 1/2 sick day. That would be nice...especially since I just figured out how much money I lose when I take a 1/2 day off. I think I'd rather keep the delay because Jason has a sub job today. If we're closed he doesn't get paid. That would stink.

The radar looks like a scary blue blob is coming our way.

Insurance Issues

I'm not sure what's going on, but recently I've been having insurance issues. They say they aren't going to pay for our trip to Gatlinburg because it wasn't pre-approved. Who's fault is that? Can anyone say BRENDA? And I just got something in the mail saying they aren't going to pay for the labs that were drawn on my first day here at DaVita. That's another $2,300. I'm going to talk to the social worker here to see what she can do about fixing it for me. She seems to be a bit more competent than Brenda. We'll see after this one.

Puffy Eyes

I've been waking up with really puffy eyes lately. When all of this started I was waking up the same way. I just took some extra anti-inflammatory medicine and called it a day. Then I read that kidney failure can cause puffy eyes. Great.

I got an email from a friend whose step-dad got a kidney transplant and he said that the moment he woke up from the surgery the world was different, better. He felt great. Food tasted better. I'm hoping so much that this is true for me. She also said that her mom, who donated the kidney, felt terrible for 2 or 3 weeks. I don't want Jason to feel terrible, but it will only be for a short time. And I'll feel great for a long time! It's a trade off, I guess.

Saturday, January 8, 2011

Nothing New

I don't have much to report on today. Everyone at school is really excited for us. I'm getting hugs and emails from people every day. Everyone questions when we'll have the surgery and is excited to hear that it will (hopefully) be after the school year.

Everyone here is really quiet today. It's not like at the hospital where everyone was screaming and moaning. I am surprised by the number of patients who are brought in by "transportation" from nursing homes and such. I thought you'd have to be more independent to come to a place like this.

Thursday, January 6, 2011

Now What?

Good question. They told Jason that the next thing he had to do was meet with a social worker and get a physical with a nephrologist. I remember hearing something about an ultrasound and an EKG as well. The transplant coordinator said these appointments could all be done in one day. Then it's just finding the date for the surgery. It's supposed to move pretty fast from here on out. I can't believe it!

Did I mention that I won the Mega Millions, too? Yup. $4 to split with 5 other people. That's 67 cents a person. How lucky am I?

They say luck comes in threes. What could possibly come next? A snow day tomorrow?

Wednesday, January 5, 2011

It's A Match!

Jason came into school today with a kidney-shaped note for me. It said, "I hear you're looking for a kidney. Well, I have two good ones and they say we're a match!" Finally! A prayer has been answered! We haven't had time to talk about our next step...but I'm just so relieved.

It's unusual for a spouce to be a match, but someone up there is looking out for us. That's been obvious from day one. I got sick right at the end of the school year, so I didn't miss many days of work then. My mom's job was eliminated, so she could start baby sitting for us. Anna came to us without a single health issue. Our insurance has been amazing. School has been amazing. I'm being looked after, for sure.

We've said from the beginning that we would like to have the surgery in late May or early June so that I can recover over the summer. Of course, if the doctors think otherwise then they'll make the call. If I can make it with dialysis until the summer then that's what we'd like to do.

I don't usually post on Wednesdays, but I thought this was deserving of a message. I'm sure I'll have more to say tomorrow after we go out to dinner to celebrate our good news! Yay!

Tuesday, January 4, 2011

Almost Didn't Make It

Yikes! My alarm went off like usual, but I didn't hear it I guess. I woke up 15 minutes late and almost didn't make it in on time. They were waiting for me at 6:00. I got on at 6:10.

Close Call

On Sunday they had to call the life squad for a patient. I'm not quite sure what happened, but they all ran over to him when the alarm went off. Usually that means a person's blood pressure dropped too low. The nurses and techs laid his chair back and were yelling at him to respond. They got no answer so they called 911. By the time the squad got here he was fine and they were able to take their time getting him into the ambulance. Scary.

Next To Me

I've been meaning to write about this lady for a while. She comes in a little after me every morning. She seems like a normal 40ish woman. But it's what she watches on TV that's got me thinking...She watches cartoons. And it's not like she turns them on and then falls asleep. She watches Arthur, Martha Speaks, SpongeBob, and other cartoons that Alli watches. I'm not judging, but...okay, I'm judging. I don't get it.

Sunday, January 2, 2011

Still Nothing

Now I'm starting to get nervous. Tomorrow will be 4 weeks since we started the testing. I'm sure they didn't work on Friday and Saturday, so I shouldn't get all worked up. But part of me is thinking they have bad news and they are afraid to call us. I'm sure they have no emotions about it either way and that can't be the reason they aren't calling. We'll just keep waiting and calling.

I felt like I drank alot of water and pop this weekend with the holiday. But my weight was good. My stomach is still feeling a little bad, so I guess that's why.

Slow Day, I Guess

I supposes she has nothing else to do. The nurse that put me on today is now on the computer, Googling things. Apparently the words like "BFF", "Ah-ha Moment", and "Facebook" as a verb have been banned. By who, I'm not sure. And Fargo, North Dakota is the drunkest city in America. If I lived in Fargo I'd drink, too.

It kind of reminds me of the day that Anna was born. I was in the operating room with my epidural when they told us there was an emergency and we'd have to wait a bit. So, while we waited Jason and the nurses Googled Pez Dispensers. Yep, I'm strapped down and they were trying to find which real people were made into Pez Dispensers. I was livid!

Back To School

It was a nice break, I guess. There was really only one day when we didn't have anything planned. It was Wednesday and that was the day we were sick. So it was busy. I'm hoping going back to work won't be stressful. I need another break!