Finally, some good progress!

Hello all,

We are happy to report that today the nurse called me and the surgeon thinks I will be ok to give Tyler one of my kidneys!!!!! Now, of course, I do have further testing to do; the next step is to get evaluated by a doctor at University Hospital. The appt. will be 4 hours long (Yuck) but they will do all my blood work, chest x-rays, EKG, a medical history and who knows what else. A few days after that I will go back in and she will tell me all the results. The nurse is scheduling everything and will hopefully call me by Monday to let me know when this will be, but for know we are very happy that we still have a chance that it is me, how amazing would that be! Have a great weekend everyone.

Susanne and Steve

Recap from our appt. October 24, 2011

Hello,

Whew one long day at the hospital, but we are happy another set of appts are under our belts. Today we met with different people all involved with the Kidney Transplant team. Everything went well and we have a good idea of what is ahead of us. Tyler had all his blood work done and as to be expected, his body is showing signs of wear and tear. He is anemic and being put on iron, also his blood pressure was high and now he will be back on blood pressure medicine. This is obviously what starts to happen as you near kidney failure. His official kidney function today was 13%. They do tend to start dialysis around 10%, but his doctor does base it on the individual. If he starts to have nausea, can't eat etc. we would be forced to do it, but let's hope that never happens.

My results from last Thursday were sent to the surgeon and he still is trying to decide if I can be the donor. He sent them on to a few urologist and I will know something more by wed. or thurs. this week. So, the minute we find the donor the surgery will be scheduled. Information overload at this point.  We will keep updating as we find out results. Susanne and Steve

Written Test Results from Oct. 20th

Hello,

So far they said my function is 60/40, they really want it to be 50/50 equal in both kidneys. I may have to get yet another test, but it was sent on to the surgical team for them to take a look. At some point they may make me stop because it could still be that in the end after all this I would still be eliminated. I am trying to be positive and just wait until Monday to see what they have to say for certain. Another long waiting game and another long weekend. I will update everyone next week.
Thanks for all the support

Susanne

Next testing scheduled

Hello again,

My next test is now scheduled for October 20th. They will do what is called a nuclear gfr test at Childrens again. I attached the explanation below. I will have written results by that afternoon, but on Monday Oct. 24th we will be spending the day there for all of Tylers appointments so I hope that I will be able to get exact results that day from my tests. So, for now we have a week and a half off, then two big appointments in a row. So, we will update again when we know all those things. As for now, I am still keeping a positive attitude that I will be able to donate. Thanks to all who keep us in your prayers day and night!
Susanne and Steve

In-Depth

What is a GFR?
A glomerular filtration rate test (GFR) is a measure of the function of your kidneys. Glomeruli are tiny filters in your kidney that allow waste products to be removed from the blood. The rate refers to the amount of blood that is filtered per minute.
Aradiopharmaceutical called Technetium-99m DTPA is injected into one of your child's veins. Technetium-99m DTPA has a tiny amount of radioactive molecules in it.
After the injection, a 10 second picture of the injection site will be obtained. You will then be instructed to return to Nuclear Medicine for your blood to be drawn two, three and four hours after the injection.
When might a GFR be needed?
The GFR allows the nuclear medicine physician to assess the degree of kidney impairment and to follow the course of kidney disease. However, the GFR provides no information on the cause of the kidney disease.
A GFR test can help measure kidney function in:

• patients who are undergoing chemotherapy
• patients who have had a renal transplant

• evaluation of renal donors.                                                       

Further Testing

Hello,
So, I have decided to keep my testing going on my Kidneys. One of two options: either go to Dr. Burroughs at University then on to the Urologist or option #2, go back to Childrens again and they will inject dye into my Kidneys to see how both of my kidneys are working as far as making sure they are excreting everything in a 50/50 manner. The doctors opinion was option #2 to save time on all my tests. The nurse will be calling me back as soon as Dr. Goebel writes the order for my test and I told her I can come in any day any time. If all goes well after that test, then my last and final step (at least thats what they say) will be going to University for my physical/blood tests/chest xrays etc.

Tylers Dr. said he is still certain that he will need the transplant by late winter so I am trying to push them on all these tests so Ty does not have to end up on dialysis. Let's just hope next time they don't have to stick me 5 or 6 times like they did last week!  As always, thanks for all the support.

Susanne and Steve

Update on results from my CT last week

Hello all,

Well, the nurse called today again and said the surgeon thinks I need further testing. They would want me to go see the doctor at University first, then she would send me to a Urologist who would further evaluate my left kidney to make sure it would function if they take my right.  The major dilemma is it could take another 2 months for all this to occur and in the meantime no one else would be going forward with more testing.

We will be running a major risk that if I end up not being able to donate, then by the time Steve goes forward and so on will Tyler's kidneys last long enough before transplant to not be forced to start dialysis? As we ponder this decision we are waiting for Ty's doctor to call with his opinion about it. His function has dropped so much in the past few months, we are hopeful he can at the very least tell us what he thinks we should do. I don't want to give up on being the donor myself, but the only person hurt in the long run is Tyler if we take the chance and he has to sit on dialysis. Ugh.... either way I go it just won't feel right. I am about 98% sure I will go on still, but that little part of me would never forgive myself if he ends up on those machines while we could have already been working on another donor.We will let everyone know when we here from the doctor and if I can get into these doctors any faster!

Susanne and Steve