Monday, August 31, 2009

Transplant Date OMG

Well we have a transplant date of Dec. 29, 2009! Wow-this is really happening. Our friend and my husband will need to go for pre-op work on the 22nd. So I guess we'll have to treat our donor VERY well while he's here for the week. Actually, we haven't talked to him to see if he'll be staying or going to FL to visit family. He is certainly welcome here anytime, but don't know his plans yet. He may not either. This has all come about since Friday afternoon.

We won't get the date for removal until our appointment on Sept. 28th-my son's birthday which sucks a bit. We are told though that it might be as soon as a week or two after that appointment. I hate to say it, but that is too soon! We thought it was going to be 6-8 wks prior to the donation. So I don't know how early Oct. is going to work. Three trips to Nashville a week for dialysis makes a difference in how soon we'd like the removal to happen. We will push for later in Oct. or early Nov. for that reason alone. It's also a bit stressful to think of the lack of income for an extra month. I guess a wing and a prayer might be the motto for this time.

Saturday, August 29, 2009

Next Visit

We visited the surgeon on Tues. The decision has been made to remove both kidneys as the function has fallen to 14 GFR-a 5 point drop in two months! Frankly the appointment was quite an awakening of sorts. It was difficult to watch my husband nearly jump off the table in pain when the doctor was feeling the kidneys (left in particular).

We are happy about it in hopes that there will be less trouble with infection after donation.

We've gotten the information for the fund raising and passed it along to our bowling alley who is helping during Saturday leagues in which our kids bowl. Today they raised $156 on pocket change! We love the Pinnacle!

We go on Sept. 28th to meet the urologist who will do the kidney removal. We hope to have the donors dates so we can schedule these.

Oops-we think he's already scheduled for the removal on October 26th! We looked at the packet they sent and there is a date on there for Oct. 26th. Sean is calling tomorrow to confirm this with our coordinator. I will post when we find out definately. This date works IF our donor is willing to spend the new year in the hospital. If not, we can push it back to the first week in Nov. Since we will have to travel 3-4 times a week to Vanderbilt for dialysis it will make a difference.

Monday, August 24, 2009


We got word today that our donor was approved by the panel. So tomorrow, it's off to the surgeon to set some dates. So I imagine things will seem to fly by while we tidy up loose ends and start getting helpers their assignment-lol. Our family is great! Mom is already asking what to do and where to stay things that I haven't figured out yet.

Friday, August 21, 2009

Qualifying the Donor

Well we found out today that our donor is set and ready to be presented to the "team" that determines if he's a good match. We have our appointment on Tues., so we hope to get dates then if all comes out okay. We hope and pray for no surprises! We'll keep you posted.

Thursday, August 20, 2009


Our donor had his last test LAST Friday and was due to talk to the donor coordinator this past Monday. (He was told at the conclusion of the test that his heart looks good.) We were kind of hoping to get a call at some point this week informing us of dates for nephrectomy and transplant. However, it is late Thursday night and no such call.

Sean is due to go in for retesting to make sure he's healty-his expired as they are only good for a year. So that appointment is on the 25th. On this day he has to have "some tests" redone although I don't know which ones. He also has to meet with the surgeon again. At this point, I am hopeful to get dates. October is right around the corner, so dates are helpful to plan life. I worry I'll be disappointed and no dates will be discussed. Oh well there's always the appointment the following week since his doctors work on different days.

We are planning things just as normally as you would. It does seem a bit weird to know that it might need to change. They are all on the calendar, but my mind knows some things will have to give. That's why dates are good!

Just can't wait for the further information like what happens next. I imagine it'll be like a whirl wind of things at once.

Friday, August 7, 2009

Donor Testing

We had our donor come for testing in July. We were excited about the tests getting done, but still reserved about it. We ran into a few obsticles. First a 24 hour urine test and a 3 hour glucose test were not done prior to arrival as it was supposed to be. It seems that this might have been an important piece of information prior to spending nearly $100K on testing.

Then to my surprise, our donor was told during the "whole day visit" that he needed a cardio test/scan of some sort. Instead he went back to LA and now it is complicated! First, he had to go to his regular doctor to get a referral for a cardiologist. The cardiologist has to order the test. (The hospital won't take Vanerbilts orders for it.) All of this because someone failed to mention that he might want to call the donor coordinator to set it up immediately. They have been faboulous about doing these things in a timely manner. All of which is costing us (via insurance) money.

Although our donor says he'll still get the test done when his schedule allows, he did offer us a psychic healer as an option. We do believe in miracles, prayer and devine intervention, but "healing" is not something we are willing to accept. So here we wait.....

We do have two other potential donors. However, it is a husband and wife. The wife is pregnant and expecting to be on bed rest in the next few weeks. So the question comes, do we wait or move on? How do you decide? And what about all the money already spent? Ugh!

On the positive note, Sean got told the other day that she "can't believe he's really that sick" because he is still so active. I am blessed that he hasn't given up and he tries to lead a normal life. We tell the kids he's sick sometimes if he's dragging, but for the most part he trucks right along without notice to his pain. This is the way we want it. (They do know that he needs a transplant, but we are trying to keep the details of it quiet so their school doesn't suffer.)