july 7th update

Once again, I've neglected updating. I came home from the hospital April 29th and started hemodialysis at the center May 1st. My arm still wasn't ready to handle 2 needles at the center so we've been using both my arm and the chest catheter I have.
We were anticipating a transplant the middle of June, but my body wasn't ready to handle another surgery evidently. I reacted with my potential donor. We are praying that it was just because of the virus I had in the hospital and the trauma of being in the hospital. The transplant center wants to retest me and my donor in August, giving my body time to 'calm down' a little.
So with the transplant not happening as soon as we'd hoped I decided to start doing peritoneal dialysis. This type of dialysis uses my abdominal cavity and a solution to filter my blood while I sleep. I am hopeful it will also be easier on my body. Hemodialysis is starting to get tougher each treatment. The process itself isn't so bad, but I feel very run down the day I have the treatment. So on the days I don't have treatment I have to be in overdrive to get everything done. It is exhausting for sure. I've been told PD (peritoneal dialysis) is easier on the body, so we'll see.
I started day 1 of 4 for PD training today. It's a little overwhelming but should be pretty easy. It's a matter of consistency and organization. Definitely something I need to work on in my life anyway. lol
I'll try to update more often. It's kind of like the old saying, No news is good news.

still still here...........

Yep it's Mon April 27 according to my phone and i'm still a resident of Lake Norman Regional Hospital. We've become quite the regulars and been through all the nurse rotations.

I think every one is still holding on strong. The girls are being spoiled rotten by friends and family. They actually went swimming yesterday with the dogs. Under daddy's supervision:-) It was great for them all to have a little fun!

I had dialysis and blood work again today. Made it through 2hrs 25min before getting sick. Creatine is still in the 6's and hemoglobin 7.8. Other than that everything looks normal. I am not making red blood cells. A condition they are calling red cell aplasia. My bone marrow is not making just the red cells. Every thing else looks good. There are about 40 causes, with 2 really standing out. I've been on Cellcept for @ 3 years and that can cause this. Thanks to a friend of mine that just went through something similar, they are testing for b19 virus which can also cause this. I'm really hoping for something easy here. If things don't improve in the next week they want to do a bone marrow test to rule other things out.

Back to dialysis....I'm still getting sick. We've decided to try peritoneal dialysis (PD) so I'm getting a catheter put in tomorrow. I've been poked and prodded so much whats once more while we're hear.:-)

No definite on a check out date but I'm thinking Wednesday (this week).

Well getting ready to get a pint of blood........yea it looks as disgusting as it sounds, but we do what we have to do:-)

Still here

Well it's Thursday, I think, and I'm still hanging out at the hospital. Today was a dialysis free day! First one since last Saturday. I'm starting to feel a little better. I had a headache when I woke up this morning, but after some pain medicine and a shower I feel a little more human.

We are still not sure when I'm going home. The doctors (and us) want to be 100% sure I'm stable enough to go home. I think Chris and I are spoiled to the 'room service' and being able to have medicine injected into an IV at a moments notice. We will know more tomorrow after the dialysis run.

So far I'm reacting with our current donors. CMC is continuing to work all angles and processing all those interested in donating as quick as they can. We continue to pray for a donor.
Anyone still interested in donating can contact CMC at 704-355-6649 or 800-562-5752

Thank you for all the prayers and well wishes.

Dialysis beins......

Well it's been a while, things have been going along. Met with CMC in March, we are officially on the Transplant wait list. My brother is not a match for me, but he is still a donor candidate. They are continueing to test him to see if he can donate to someone else. Maybe we can make a 4 way donor swap and help save someone else! We have friends continueing to get tested and we are beyond grateful for everyone!
Tuesday (April 14th) I had a routine nephologist appoitment. I was not feeling well because my hemo was low. Lab work was done. By Thursday (April 16) doc was calling. It was time to start dialysis. My kidney function was about 6%. As most of you know, we'd been trying to hold off until my arm was really ready. We couldnt wait any longer. The toxins were too high and my numbers were not good. We decided to go to hosipital on Friday for in-patient dialysis thinking the nurses were top notch. Our plan was to be there Friday/Saturday then come home. Well as my 5 year old often reminds me, I don't do good sticking to a plan. LOL It's Monday and I'm still hanging out.
So back to Friday, we checked in Friday morning. Lunch time they came and got me for dialysis. The best dialysis nurses around tried for an hour to use my AV Fistula. Chris stood by my side letting me cut the circulation in his hand off squeezing because it hurt. My arm was not ready for the blood flow. IT HURT. It's not like the movies they show you. lol. So next step was to get a cathader put in my neck to start dialysis that way. It is temporary, we will still be able to use the arm, but for now the catherder is the best option.
So on to Saturday. All I remember is trying dialysis, getting sick. Taking meds and getting sick and sleeping.
Sunday was a bit better. Tried dialysis, was able to run for about 1.5 hrs before feeling sick and stopping. Was able to walk around and did not get sick all day. Stayed awake most of the day.
So now it's Monday. Went to dialysis this morning. Felt ok for a while. Ran for 1.5 hrs, started getting a head ache and vomiting so they stopped it. I felt better after that. Came back to the room where Chris helped me shower and wash my hair. That was great. Feeling light headed but not really sick to my stomach. Still can't eat much. Drinking some Nepro by Ensure for vitamins and calories.
Not clear on what comes next. Obviously we'll be doing dialysis 3 days a week now. I'm not sure when I'll get to go home. We're thinking Tuesday or Wednesday. Thanks for all the prayers, well wishes, visits and flowers. We need all the support we can get and everyone has been wonderful.
I apologize for all the typos and misspellings, still not thinking clearly:-)

Yay! It's working

I had the 2nd AV Fistula done on Wednesday, the 11th. Everything went well. Not much pain at all.
I can feel the pulse and the blood flowing through its 'new' route. It is very exciting and I feel very good. I have not had to take much pain medicine.

The bandage comes off today, so we'll see what it looks like. The incision is bigger this time, but as long as it works I'm happy!

Also, my labs were just a bit different than 2 weeks ago. The creatine was at 6.7 vs 6.1, Potassium was down to 4.5 (i think) vs 5.9 (lower the better on this, so its good news), BUN was 83 (i think).
I'll go next week to have my doctor do labs so she can compare to the past labs done there.

My brother is in the process of getting tested to be a donor. Hopefully we'll find out something soon with him.

much love

have to go back for round 2.......

WELL................................
unfortunately my neighbor was right. I went to the doctor yesterday because I couldn't feel the 'thrill or buzz' and sure enough, nothing was going on in my arm. Meaning blood was not flowing through like it should, so it must have 'clotted' off because the vein was too small. The good thing is it has not affected blood circulation. So I'm going back to the OR on Wednesday the 11th at 9:30 to have him do it again. This time he will move further up my arm where the veins are a bit larger. Before you ask Eddie, we really thought it would work. They tend to start at the lower part of your arm then work up if they have too. At least we know what to expect this time so hopefully everything will run smoothly.

AV Fistula

this is going to be short because it hurts to type still. i went in 4 days ago for the AV Fistula. Everything is going well. Had some bruising and minor pain. Still numb in parts of my arm which is good I'm thinking:-) Can't feel the 'buzz or thrill' they talk about over the incision, but hoping everything is ok with it. Feeling good, been nauseous over the weekend, but I'm thinking its from not eating enough.
Found out in the hospital, my labs are getting worse. Currently showing 8% kidney function. Potassium is up to 5.9 , creatine is 6.1 and BUN is 69. All numbers indicate dialysis is coming soon. I'm trying to hold on and let the fistula heal, but not going to wait so long I get too sick. We're just trying to buy some time at this point.

Thanks for the prayers and well wishes. Chris probably needs them as much or more than I do. He is doing wonderful at taking care of me, but I'm sure he's a lot more worried. The girls are also doing great taking care of mommy, but are equally worried I'm sure.

Our day at CMC

Monday was a very exciting and busy day! We met with one of the Transplant surgeons at Carolina Medical Center. From there I had a chest x-ray, EKG and blood typing lab work done. Every thing went well but the lab work sucked! They had to 'stick' me twice to get 2 different readings to confirm my blood type. I am A+ but they seem to what to be sure. lol

The surgeon seemed to think IF we had a living donor that was a match I could have a transplant sometime in the next 6-8 months. He said there was really no reason things should not move quickly seeing I was pretty healthy otherwise. I am certainly not counting on that, but it would be a nice surprise. Chris is not a donor candidate at this point because of the girls and needing to take care of me (this was our thought the whole time).

The gentleman doing my chest x-ray was a kidney recipient. It was very cool to speak with him. He was probably my age, and doing great. He received his kidney from a deceased donor after waiting 1.5 yrs. He said he could not believe how much better he felt after the surgery. He had also done Hemo dialysis (we're planning this for a backup) and said it was kind of painful. However, he gave me a few pointers on why he thought his was not pleasant. It was very encouraging speaking to someone my age that has been through the whole process.

It is exciting but I think things are going to move quickly at this point. It would certainly be a blessing if 2009 was the year of the "kidney". lol Chris tells me his going to start calling me 'kidney bean', I'm think a flower garden in the shape of a kidney would be a nice touch:-)

Thanks again for all your encouraging words and support. We are truely greatful to have such a great support group.

Donar Form page 1 and Donor Form page 2 for any one interested or with quesitons.

Happy Friday!!!!!!

YAY! I finally have an appointment at Carlina's Medical Center in Charlotte to start the process of getting in the Transplant Program! I am so excited! I was referred in October, and after many phone calls from my doctor I have an appointment on Monday the 12th!

They are going to do some lab work and x-rays. They also will be able to start testing some of the willing Donors we have, once I am officially in their system.

This is a very exciting Friday!

Happy New Year!

Lets hope for a great 2009. We went yesterday to meet with a surgeon to get prepped for dialysis. I go January 29th for him to put in an AV fistula in my left arm.
Let me back up a little.........
As stated in the last post, my numbers keep getting worse. We are definitely headed to dialysis, unless CMC gets on the ball. I am in the 10-12% kidney function range. Looking at the numbers over the past few months, I'm losing about 1-2% function a month. Hopefully things will steady off and I could remain at this point for a while, but unfortunately when the kidney function gets lower it tends to go a little quicker. Kind of like when you're running low on gas in the boat, the gas seems to go a lot faster! We certainly do not want to run out.
We've thought a lot about our choices, why does life have to be so complicated? I'm going to do hemodialysis, that's the one done in a dialysis center. It seems to have the least chance of getting an infection, but I'm really mixed about going to a dialysis center. I think it will make it too real. It's easy to 'forget' about things when I feel good.
It just really sucks to get a dose of reality. The day before Christmas Eve was one of those days. I had been feeling nauseous for a few days, but tried to blow it off. Unfortunately that is one of the major signs of kidney failure at my stage. It can mean the body is not filtering all the 'bad' things out, thus making you feel like crap. So things got worse. My doc was great, called every few hours just checking in. Then, I vomited. Not good, at all. When I told her, she was willing to wait just a little longer because I actually felt a little better after getting it out. However, we were looking at having to go to the hospital if I didn't get better for emergency dialysis. Thanks to my wonderful husband, mom and neighbors I was able to get some rest and started feeling a lot better. A Christmas wish granted. I was really not willing to spend Christmas in the hospital.
I think we're all just on edge because it is such an unknown. I've known for years this was the out come but every time I'm reminded of it it's like being told for the first time. I think we'll also feel a little more at ease once the Fistula is in. It takes about 6-16 weeks to heal so it can be used. Once that's done we're good to go for dialysis. Now we just need CMC to get on the ball getting me in so we can get the transplant stuff started.
So I'm sure this is a lot of rambling but the bottom line is, we're on our way to starting dialysis and hopefully we'll be able to wait until the fistula is ready.
We are very thankful this is something that can be fixed.

Time Flies

Wow, time flies when you're having fun.

Here's the latest:
I went last Thursday (12/4/08) for a hemoglobin (finger prick) check and lab work. My hemoglobin was 8.6 so she tested again and it was 8.9. Those are not good numbers. A 'typical' person is in the range of 11.5-15. When hemoglobin gets low it makes ya feel tired and run down. So I had to get a Procrit shot to help my body boost up the hemoglobin. Hopefully that will help. I go back 2 weeks from then to get it tested again most likely another shot. Fortunately they don't really hurt.

Second part, got my labs yesterday. They are not very good either. My kidney function is continuing to get worse. The last Creatine test (11/7/08) was @ 4.2 this time it was 4.9, that translates to about 10% function. SO, after talking to my doc today she's trying to speed things up at CMC. Chris has also called them to see what is going on. Doc is still shooting straight for transplant and skipping dialysis. Obviously, if I continue to get worse and the transplant is not in the near future we'll do dialysis.

I can tell you I would have never thought we'd be in this position this time last year. When we met with Dr Fox (previous kidney doc) in January for a second opinion, he told us I'd probably need a transplant or something within a year if things continued the way they had been going. I believed every bit of it but boy does a year sneak up on ya. I can't believe that I could seriously be looking at needing a transplant or dialysis in the near future. I think at this point we're talking about needing it in months, not years.

So I guess my Christmas wish if I can't get better is to find a match and an easy recovery!

Thanks again for all you!

Just checking in

>So things have been going pretty good lately. I am feeling back to my old self.
I went to the doctor last week for a check up. Creatine is still high which mean kidney function is low. The last test 10/16/08 was 4.3, previously 9/16/08 it was 4.26, in August it was closer to 3.3 range I believe. The doctors still think it is from being sick in August and are hopeful the numbers will get better. Currently, I have about 12-14% kidney function. Most people start preparing for dialysis but the doctors say as long as I feel good we can continue doing things the way we are.
My iron levels were also better this time than 2 weeks ago so no shot this time!

So not much more to post but I am feeling good and thank everyone for the prayers and well wishes!

Feeling pretty good

So the past few days have been good days. I'm starting to get my energy back, but have to remind myself to take it easy. I can finally breathe without coughing and sleep without cough medicine. My ears are still 'clogged' but hopefully that will clear pretty soon.

I've been trying to take it easy and drink lots of water. I check in Tuesday with the doc and more blood work.

We are looking for better test results this time!

Kidney Donation

A lot of people have been asking us how they can be a kidney donor.

We would first like to thank you and be sure everyone knows we do not expect anyone to donate their organs. We are sharing our story so everyone can understand what we are going through in our life.

For those that are interested, there are many websites and organizations that can probably answers questions better than we can but I'll touch on a few facts.

http://www1.wfubmc.edu/nephrology/procedures/Kidney+Transplant.htm



-Kidney donors are typically between 17-60 years of age. Donors should be in good general health. Typically, someone who has high blood pressure (both treated and untreated), cancer, diabetes, kidney disease, heart disease, liver disease, sickle cell disease, HIV or hepatitis will not qualify to be a donor. However, these diseases are not all absolute contraindications to donation. Every donor will be considered on an individual basis.



-The recipent's insurance or the medical center pays for the medical cost associated with the donation of the donor.

-Donors AUTOMATICALLY go to the top of the transplant list should they themselves ever need a kidney.



-The average person only needs 25% of 1 kidney to live their whole life.



-Donors are matched up based on blood type, antigen match, and cross match. If a willing donor does not completely match the recipient they intended a 'swap match' may occur. This means if person A wanted to dontate to person B, but did not match and person C wanted to donate to person D but they didnt match and A matched D and C matched D they would preform a dual transplant at the same time and both recipients would benifit. My example may be a little confusing but the counslers and such can make it clear.



The best thing for anyone wanting to be a donor is to contact a donor cooridinator. I am currently working with the Transplant team at Wake Forest Baptist Hospital in Winston Salem. I will also try to get on the Carolina's Medical Center transplant list once we have everything in place at Baptist. Being on more than 1 tranplant list can speed the time for recieiving a transplant with out a living donor.

A donor cooridinator works independent of the recipient team. They really work hard to be sure the donor is making the right decision and does not feel pressured.

Some interesting sites

http://www1.wfubmc.edu/gs/Kidney-Transplant.htm

http://www1.wfubmc.edu/gs/residency/training/clrotations/Transplant.htm

http://www.carolinashealthcare.org/services/transplant/

I will post contact information for the donor team at Baptist.

thanks again for all of your support.

Up's and down over the past few days

We've had a few up's and down's over the last few days.

On Tuesday I went to the hospital for an IV iron, basically an infusion of iron to help boost the iron in my system. It is a 2 day process and hopefully this will be the only time I have to have it done. When I went in on Tuesday my blood pressure was high, 140's/95. The nurses weren't too concerned about it, we went forward with the 1st dose of IV iron.
Wednesday it was even higher 155/105 consistently. The head lady was concerned as were we. She called the doc on call and Chris called my doctor directly. After a scary few minutes it was decided I would go straight to see him after the 2nd dose of IV iron was complete.
Chris some how made it to WS from Mooresville in less than 50 min....Once he was by my side my BP started coming down a little and I took a nap:-) while the IV finished (@ a 2 hour process).

We met with the doc, he was not as concerned about the BP as much as he was about me still being sick (@ a month now). He feels, as do we, that the BP is probably a result of my body trying to fight off the bronchitis. I was sent for another chest x-ray and had more blood work drawn. I was also told to rest, drink plenty of fluids and written out of work. I was given a steroid and inhaler.

We were feeling a little better at this point, but still concerned about the BP. BP has a direct effect on the kidneys. If it stays high it can cause more kidney damage, which in turn can cause high BP. Very weird to me.

So doc called yesterday (Thursday);
Good news: chest x-ray was cleaner than a few weeks ago, means I am getting better. Just taking some time.
Not so Good news: kidney function worse than a few weeks ago. My Creatinine levels have been in the 2's consecutively until August when it went to 3's, now it is showing 4.1. HOWEVER, being sick can cause these numbers to be skewed. (by the way, a normal person is less than 1) So again, Doc is not too concerned right now. Reinforced lots of fluids and getting rest while out of work.

So I've been resting and doing a little work from home and trying not to get my BP up. Hoping to take this time and get the test results back to where we want them.


The other good news is I think the latest medicine or the IV iron is helping to make me feel better. I have more energy now and I'm coughing less. I just have to remind my self to take it easy. I have so many things I need to do and catch up from the past month, but I guess they've waited a month so what'a another couple of weeks.

A little background on me

About 10-12 yrs ago I was diagnosed with IGA. It started out as a regular checkup at the doc. After some really weird lab results I was sent to a Nephrologist . He was a little stumped as well because I appeared to be a very healthy female in my early 20's. A kidney biopsy confirmed the
IGA.

The disease more or less was controlled for about 10 years, even through the birth of our daughter. About 2 years ago test results started coming back a little weird again. After changing medication around we decided to get a second opinion this year. Really just another set of eyes is what we were looking for and hoping someone may some other ideas.

We weren't really expecting to hear what we were told. When looked at on paper things appeared to be a lot worse than we had anticipated. So we are in the process of trying to get me on a transplant list. I do NOT need a transplant right now, but with the way things have changed recently we are unsure when or how long before I need a new kidney. It can take quit a while to go through the process of getting on the list, much less actually having a match. We are just trying to prepare in advance.

Fortunately things have been pretty stable over the past 9-12 months. One of the problems is I am on an immune suppressing medication. Therefore, colds and such hit me a lot harder than the average person (kind of like a baby). When I get sick I get tired and it's hard to fight it off. This also puts a strain on my kidneys.

I am currently getting Procrit injections every 2 weeks to help boost my hemoglobin. This will also hopefully boost my energy level.

I am waiting to go in for a day of testing for the next step in getting on the list.

We'll keep you posted.

More Meds today

Well we're hitting another round of antibiotics. hopefully this will help. Augmentin 2 x's a day. Looking forward to a relaxing long weekend !!!!!!!!!!!!

Good Weekend so far

Julie Seems to be doing better this weekend. She's getting some much needed rest. I'm working on getting some lab stats together to post. Her and Isabella are sleeping in this morning. She's hoping to be able to go back to work some this week since she's been out for a while. We're also hoping to hear from the transplant department at Wake with the timing of getting her on the waiting list. They told us in march with would take about 5 months to complete everything. We've done most of the preliminary stuff so we fell like we're on the home stretch...... its just one of those hurry up and wait kind of things.

Thanks to all that have reached out to us with support. Its certainly a scary time for us, but we really believe that everything will work out fine.

today we're going to relax and enjoy the lake.

Turn for the worse

Julies Kidney disease has taken a turn for the worse. Unfortunately total Kidney failure now appears to be imminent. Her disease was relatively dormant and stable for many years. Her function now (both kidneys) is around 20% +/- and decelerating somewhat rapidly. Just a couple years ago she was over 80% function. We are in the process of being put on the waiting list at Wake Forest Baptist Medical Center in Winston Salem, NC.

Will post more data later

Chris