Today was my long day of donor testing. I could go into detail but suffice it to say... it's over and I survived. The actual testing wasn't bad at all, it's the human factor that annoys the snot out of me. Everyone seems to think that things will be fine from this point forward, although there is still considerable drama over the one medication that I take that is typically a treatment for diabetes. The donor coordinator nurse said she will have all my results in about 2 weeks and will call me then to review them and let me know about any follow up testing required due to the results.
Katie has Dr. Voigt (her surgeon/urologist) and a renal ultrasound tomorrow, and then an EKG and echocardiogram on Monday.
So, that's where we are... any questions, ask away!
Thursday, September 18, 2008
Tuesday, September 9, 2008
Looking at Dates for Surgery
That's right, one of the things we discussed today with Dr. Mendley was possible dates for surgery.
I had a TON of blood drawn before our appointment with Dr Mendley, and also a urine sample. I'm very nervous because I have had protein show up in my urine before and I'm hoping that that either won't happen or it won't be a deal breaker.
Dr. Mendley wants to try to help Katie with her energy level between now and the surgery so we're going up on her Procrit (bed blood cell booster given as a shot) to every 2 weeks from once a month. And her phosphorus went up a little so we're adding more of one of her capsule meds called Phoslo.
Since we have me as a match, and all that's left is the workup Dr. Mendley said we should start talking dates. We asked that we please not do anything in October because of the birthdays adn that would likely be too soon anyway. The first week of November is out because of something going on at the hospital. She said the earliest would probably be the 2nd or 3rd week of November. Since Katie is relatively stable waiting a month from then wouldn't be out of the question either. She asked us to think about it, talk about it as a family and let her nurse know what would be our preference. Obviously there are doctor and surgery schedules that have to be worked around but they will work with us as much as possible. Steve and I would just as soon get the surgery done so we can move on, so I'll be emailing Nancy (the nurse) to let her know that the earliest they think will work is fine with us.
After the appointment Nancy gave us the order for the EKG and Echo, and the chest x-ray. The former are scheduled for 9/22 and the latter was done on a walk-in basis today. Katie also needs to see Dr. Voigt and I set that up for 9/19. On the 30th we will go to the pediatrician's office for her to get an MMR booster, a tetanus shot and a tuberculosis test.
We were able to meet with one of Dr. M's transplant patients today and his Mom who was his living donor, so that was great. They were very kind and generous with their answers and I have their contact info if we think of anything else to ask them. The patient is younger than Katie (only 7) and a boy, but it was still great. I do however want to get serious about trying to reach some of her friends from camp kydnie. Email hasn't worked so I'll be making some phone calls tomorrow.
So that's where we are... any questions, ask away :o)
I had a TON of blood drawn before our appointment with Dr Mendley, and also a urine sample. I'm very nervous because I have had protein show up in my urine before and I'm hoping that that either won't happen or it won't be a deal breaker.
Dr. Mendley wants to try to help Katie with her energy level between now and the surgery so we're going up on her Procrit (bed blood cell booster given as a shot) to every 2 weeks from once a month. And her phosphorus went up a little so we're adding more of one of her capsule meds called Phoslo.
Since we have me as a match, and all that's left is the workup Dr. Mendley said we should start talking dates. We asked that we please not do anything in October because of the birthdays adn that would likely be too soon anyway. The first week of November is out because of something going on at the hospital. She said the earliest would probably be the 2nd or 3rd week of November. Since Katie is relatively stable waiting a month from then wouldn't be out of the question either. She asked us to think about it, talk about it as a family and let her nurse know what would be our preference. Obviously there are doctor and surgery schedules that have to be worked around but they will work with us as much as possible. Steve and I would just as soon get the surgery done so we can move on, so I'll be emailing Nancy (the nurse) to let her know that the earliest they think will work is fine with us.
After the appointment Nancy gave us the order for the EKG and Echo, and the chest x-ray. The former are scheduled for 9/22 and the latter was done on a walk-in basis today. Katie also needs to see Dr. Voigt and I set that up for 9/19. On the 30th we will go to the pediatrician's office for her to get an MMR booster, a tetanus shot and a tuberculosis test.
We were able to meet with one of Dr. M's transplant patients today and his Mom who was his living donor, so that was great. They were very kind and generous with their answers and I have their contact info if we think of anything else to ask them. The patient is younger than Katie (only 7) and a boy, but it was still great. I do however want to get serious about trying to reach some of her friends from camp kydnie. Email hasn't worked so I'll be making some phone calls tomorrow.
So that's where we are... any questions, ask away :o)
Monday, September 8, 2008
Good News!
Small piece of news before we move to the big news... we found out last week that Katie's creatinine was back down to 4.6 and that made her happy, but it wasn't a dramatic enough drop to cause any change to our course.
We were out of town for the weekend and came home to a message from one of the donor coordinators that my blood work results were back. So I spent all day today trying to get in touch with her and finally succeeded at around 4pm this afternoon. The news is ALL good: we have the same blood type, our bloods mixed together well, and the cross match came back with a 4 out of 6 match. Typically parents are a 3 out of 6 match to their children, so we're better than average. So we have the go ahead to continue with the rest of my workup.
The timing ended up working out very well because we see Dr. Mendley tomorrow. Katie and I need to have blood drawn and having it drawn at the hospital is just a little better than an outside lab. They apparently have to take quite a bit from me but the donor coordinator says I will be able to go on living after the volume they're going to take.. seriously, that's what she said. Katie just needs one vial drawn and it is for UNOS purposes (United Network for Organ Sharing). They are ready to list Katie on the UNOS list so that her time could start running if she should need a cadaveric kidney. Your position on the UNOS list for a kidney transplant is completely based on the length of time you have been on the list so just in case a family or friend donor doesn't work out they want to list her now. UNOS requires monthly blood work so this will be the start of that, and we will do that until her surgery is done.
So, you may be wondering where we go from here. I have to have a full medical workup to make sure I'm healthy enough for surgery. On Thursday, September 18th I will spend the day at the hospital. I meet with a bunch of people, a social worker, the donor coordinator, the donor surgeon, and an adult nephrologist. And I have several tests, an EKG, a chest x-ray, and what's called a CT angiogram which is a specialized CT scan done with contrast so they can see how my renal anatomy is layed out. As long as there aren't any problems with any of those results we go forward.
Katie also has to have more testing done which we hope to start scheduling tomorrow, she also will need an EKG and an echocardiogram. She has to see her pediatrician for a tetanus shot, and she needs a renal ultrasound and a visit with her regular surgeon.
So that's where we are... any questions, ask away.
We were out of town for the weekend and came home to a message from one of the donor coordinators that my blood work results were back. So I spent all day today trying to get in touch with her and finally succeeded at around 4pm this afternoon. The news is ALL good: we have the same blood type, our bloods mixed together well, and the cross match came back with a 4 out of 6 match. Typically parents are a 3 out of 6 match to their children, so we're better than average. So we have the go ahead to continue with the rest of my workup.
The timing ended up working out very well because we see Dr. Mendley tomorrow. Katie and I need to have blood drawn and having it drawn at the hospital is just a little better than an outside lab. They apparently have to take quite a bit from me but the donor coordinator says I will be able to go on living after the volume they're going to take.. seriously, that's what she said. Katie just needs one vial drawn and it is for UNOS purposes (United Network for Organ Sharing). They are ready to list Katie on the UNOS list so that her time could start running if she should need a cadaveric kidney. Your position on the UNOS list for a kidney transplant is completely based on the length of time you have been on the list so just in case a family or friend donor doesn't work out they want to list her now. UNOS requires monthly blood work so this will be the start of that, and we will do that until her surgery is done.
So, you may be wondering where we go from here. I have to have a full medical workup to make sure I'm healthy enough for surgery. On Thursday, September 18th I will spend the day at the hospital. I meet with a bunch of people, a social worker, the donor coordinator, the donor surgeon, and an adult nephrologist. And I have several tests, an EKG, a chest x-ray, and what's called a CT angiogram which is a specialized CT scan done with contrast so they can see how my renal anatomy is layed out. As long as there aren't any problems with any of those results we go forward.
Katie also has to have more testing done which we hope to start scheduling tomorrow, she also will need an EKG and an echocardiogram. She has to see her pediatrician for a tetanus shot, and she needs a renal ultrasound and a visit with her regular surgeon.
So that's where we are... any questions, ask away.
Monday, August 25, 2008
Next Blood Draw
We finally heard back from Dr. Mendley's nurse today. Katie doesn't need to have her blood drawn again until the week before we see Dr. Mendley again. That appointment is on September 9th so we'll take her Tuesday the 2nd for that blood draw. By then it will have been 5 weeks since I had my blood drawn for the typing and tissue matching, hopefully we'll hear by then if I'm a match or not.
Grandma also had her blood drawn a week or so ago, and today we had a packet sent out to Aunt Maryann. Uncle Ricky found out he has to have his gall bladder removed so he's not going to be able to be considered as a donor.
Even if we run out of family, lots of people at our church have offered to be tested as well as some people that I work with so we'll find a kidney somewhere.
Grandma also had her blood drawn a week or so ago, and today we had a packet sent out to Aunt Maryann. Uncle Ricky found out he has to have his gall bladder removed so he's not going to be able to be considered as a donor.
Even if we run out of family, lots of people at our church have offered to be tested as well as some people that I work with so we'll find a kidney somewhere.
Friday, August 15, 2008
HI
hi its me katie/transplant girl i really am not happy about my lab results but i had alot of blood taken about 10 tubes. also i love getting emails or cards so if you want to ask my mom (amy in baltimore) for the info.
Thursday, August 14, 2008
Lab results
As you may recall Dr. Mendley wanted labs drawn again on Monday 8/11. Since we were at the hospital we had transplant services draw them. And as we were instructed before I called yesterday to get the results. I heard back from Nancy today and Katie's creatinine is back up to 4.9. I know that we all were secretly hoping that it would go down to 4.0 so that we could maybe stall the transplant process, but it seems that that isn't going to happen.
Monday, August 11, 2008
Evaluation Day
So today was our transplant evaluation. We arrived at transplant services at 7:45 a.m. and we left from there at 3:00 p.m. Obviously it was a long day. We had been told that it is a shorter day for peds patients, but it didn't end up working out that way.
First we saw a video and slide presentation. The video was about the benefits of transplant, mostly discussing how much improved someone's life can be after a transplant, mostly if you have been on dialysis. They also discussed how important the post transplant medications are, but we already knew we would just be trading one set of medicines for another. And I've already told Katie that the number one cause of organ transplant failure is noncompliance with medications.
Then we saw the financial coordinator. There was a bit of drama over how our referral was worded but that got worked out before we left.
One of the nurse coordinators for the transplant service reviewed the questionnaire that we had answered for Katie.
We also were visited by both of the living donor coordinators. They told us that Steve can’t be considered as a donor because he is under 50 and has high blood pressure. It sounds like a strange rule and I’m not sure I understand but if he was over 50 and had high blood pressure under good control, then he could be considered. They had me fill out some information, and then later went over that with me. As I expected there was a lot of concern over the medicine that I take that is used to treat diabetes. I’m not diabetic and my blood work will bear that out, I’m taking that med for a different reason.
Then we had lunch, I’d like to say it was yummy but it was at the hospital cafeteria, so… not so much.
After lunch we saw the dietician. She really didn’t have any information for us, she took information from us, and was pretty pleased with what Katie gave her as her typical diet. I’m not exactly sure what her role is, but I suspect they see a lot of diabetic patients, and those who are less diet conscious than we are, so maybe they need more assistance.
Then we met with the social worker, again, I’m not exactly sure what her role is. She said she could help coordinate school issues but we have to get any “orders” from Dr. Mendley. I doubt that I’ll need her because I’m used to working with the schools, but we’ll hang onto her information. Both she and the dietician were very nice, and very knowledgeable, and not thrown by Katie’s non-kidney uniqueness.
Finally, we met with Dr. Eugene Schweitzer the surgeon. He was… ummm… different LOL, and not what I expected, but very nice. He didn’t really say much. He looked at Katie’s abdomen, and he checked her pelvic and ankle pulses because the blood source for the new kidney will come from the main arteries and veins serving her leg (on which ever side the new kidney is placed.) He seemed to say that he doesn’t actually do the surgery, that he just directs the pediatric surgeons, but Dr. Voigt (her urologist/surgeon) seemed to say that he would “be in the operating room.” I’m sure that will all get worked out.
And even though those things could have been accomplished in just a few hours, instead they took 7 hours.
So, what’s next. We’re not completely sure. The transplant center doesn’t deal with pediatric patients that often so they’re quite bewildered and “off set” when they have one. But they seemed to think that we should be moving forward with Katie’s work up. However, I think Nancy intended for us to wait until a donor is chosen. We’re now less than a month from our next appointment with Dr. Mendley which is when Nancy wanted to move on with the rest of Katie’s work up, so I’m not sure a donor will be chosen by then. We were told today that the first round of donor testing (blood work) takes at least a month (Nancy had said 2-3 weeks), my blood was drawn today so that clock is ticking for me now. My Mom has asked to be considered next, her questionnaire has been completed, and we hope to get her blood drawn in the next week or so.
I’m going to call Nancy tomorrow and discuss a few things:
1. That my Mom will be the second donor considered and not Steve, or my brother as I had told the social worker.
2. That we will need some help with school because we’re not sure Katie can make it through a whole school day.
3. And to see if she’s willing to schedule some of the rest of Katie’s workup now so that we can get rolling.
Any questions? I’ll do my best to answer them. You can post them here or email me at steamy2@comcast.net, if you want to reach Katie I’ll forward your mail to her, I just don’t want to post it here.
First we saw a video and slide presentation. The video was about the benefits of transplant, mostly discussing how much improved someone's life can be after a transplant, mostly if you have been on dialysis. They also discussed how important the post transplant medications are, but we already knew we would just be trading one set of medicines for another. And I've already told Katie that the number one cause of organ transplant failure is noncompliance with medications.
Then we saw the financial coordinator. There was a bit of drama over how our referral was worded but that got worked out before we left.
One of the nurse coordinators for the transplant service reviewed the questionnaire that we had answered for Katie.
We also were visited by both of the living donor coordinators. They told us that Steve can’t be considered as a donor because he is under 50 and has high blood pressure. It sounds like a strange rule and I’m not sure I understand but if he was over 50 and had high blood pressure under good control, then he could be considered. They had me fill out some information, and then later went over that with me. As I expected there was a lot of concern over the medicine that I take that is used to treat diabetes. I’m not diabetic and my blood work will bear that out, I’m taking that med for a different reason.
Then we had lunch, I’d like to say it was yummy but it was at the hospital cafeteria, so… not so much.
After lunch we saw the dietician. She really didn’t have any information for us, she took information from us, and was pretty pleased with what Katie gave her as her typical diet. I’m not exactly sure what her role is, but I suspect they see a lot of diabetic patients, and those who are less diet conscious than we are, so maybe they need more assistance.
Then we met with the social worker, again, I’m not exactly sure what her role is. She said she could help coordinate school issues but we have to get any “orders” from Dr. Mendley. I doubt that I’ll need her because I’m used to working with the schools, but we’ll hang onto her information. Both she and the dietician were very nice, and very knowledgeable, and not thrown by Katie’s non-kidney uniqueness.
Finally, we met with Dr. Eugene Schweitzer the surgeon. He was… ummm… different LOL, and not what I expected, but very nice. He didn’t really say much. He looked at Katie’s abdomen, and he checked her pelvic and ankle pulses because the blood source for the new kidney will come from the main arteries and veins serving her leg (on which ever side the new kidney is placed.) He seemed to say that he doesn’t actually do the surgery, that he just directs the pediatric surgeons, but Dr. Voigt (her urologist/surgeon) seemed to say that he would “be in the operating room.” I’m sure that will all get worked out.
And even though those things could have been accomplished in just a few hours, instead they took 7 hours.
So, what’s next. We’re not completely sure. The transplant center doesn’t deal with pediatric patients that often so they’re quite bewildered and “off set” when they have one. But they seemed to think that we should be moving forward with Katie’s work up. However, I think Nancy intended for us to wait until a donor is chosen. We’re now less than a month from our next appointment with Dr. Mendley which is when Nancy wanted to move on with the rest of Katie’s work up, so I’m not sure a donor will be chosen by then. We were told today that the first round of donor testing (blood work) takes at least a month (Nancy had said 2-3 weeks), my blood was drawn today so that clock is ticking for me now. My Mom has asked to be considered next, her questionnaire has been completed, and we hope to get her blood drawn in the next week or so.
I’m going to call Nancy tomorrow and discuss a few things:
1. That my Mom will be the second donor considered and not Steve, or my brother as I had told the social worker.
2. That we will need some help with school because we’re not sure Katie can make it through a whole school day.
3. And to see if she’s willing to schedule some of the rest of Katie’s workup now so that we can get rolling.
Any questions? I’ll do my best to answer them. You can post them here or email me at steamy2@comcast.net, if you want to reach Katie I’ll forward your mail to her, I just don’t want to post it here.
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