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.
Wednesday, December 31, 2008
Wednesday, December 10, 2008
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!
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!
Monday, October 20, 2008
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!
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!
Saturday, September 13, 2008
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!
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!
Friday, September 5, 2008
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.
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.
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.
Friday, August 29, 2008
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.
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.
Tuesday, August 26, 2008
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 !!!!!!!!!!!!
Sunday, August 24, 2008
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.
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.
Wednesday, August 20, 2008
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
Will post more data later
Chris
What is IgA nephropathy
What is IgA nephropathy?
IgA nephropathy is a kidney disorder that occurs when IgA—a protein that helps the body fight infections—settles in the kidneys. After many years, the IgA deposits may cause the kidneys to leak blood and sometimes protein in the urine.
Many people with IgA nephropathy leak blood in the urine, but this leakage does not mean they will have long-term problems. Others leak both blood and protein in the urine. If too much protein leaks into the urine, the hands and feet can swell. After 10 to 20 years with IgA nephropathy, the kidneys may show signs of damage. About 25 percent of adults with IgA nephropathy develop total kidney failure. Only 5 to 10 percent of children develop total kidney failure. Symptoms of kidney failure include swelling in the hands and feet, nausea, fatigue, headaches, and sleep problems. By the time these symptoms occur, total kidney failure is near. Total kidney failure means the kidney damage is permanent. People with kidney failure need dialysis or a kidney transplant.
For more information visit -
http://www.kidney.niddk.nih.gov/kudiseases/pubs/iganephropathy/
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