Laura and David are still doing well. Laura’s creatinine level is now down to 0.8, which is at the low end of normal. The doctor took out 10 of the 22 staples. All her blood work looks good with two exceptions.

First, her phosphorus levels are low. This is pretty ironic considering that before the transplant her phosphorus levels were so high that she had to take 5 phosphorus binders with every meal and three with snacks. Now, they said her kidney was working so well that it is getting rid of all the phosphorus. She’s going to need to take a phosphorus pill three times a day.

The other thing is that her triglyceride levels are still a bit on the high side. They are just going to keep on eye on this and see how it does with time. They said that with a good diet, it should start improving on its own.

 

Laura got her transplant one week ago yesterday. We had our first checkup yesterday and things couldn’t be going better. Almost all of her blood work was in the normal range.

First, let me say that we’ve never been so happy to see so much pee! It’s really weird to say it, but Laura’s kidneys had completely stopped working and she was no longer producing urine before the transplant. Her kidney is working great!

Creatinine is one of the tests used to determine how well your kidneys are functioning. Normal range is 0.7-1.1 and before the transplant, Laura’s creatinine was at 9.6. About an hour after surgery it had come down to 9.0. The day after surgery it was 5.8 and when she was released on Friday it was at 1.1. Yesterday it had come down to 1.0.

 

Laura and David are both doing fine! Their recovery is coming along great. David was released from the hospital on Wednesday afternoon and Laura was released on Friday evening.

The morning after surgery, David manned-up, endured the pain, and walked over to Laura’s room to have breakfast with her! That evening, Laura managed to walk over to his room for dinner. As you can see, she was very grateful for the gift of life!

 

5:10am

Laura has kissed our kids good goodbye. We’re heading off to the hospital.

5:45am

Family pics – Only David would show up for surgery in a suit and tie!

 6:10am

David was called back to get labs drawn to make sure everything is good to go.

Still don’t know what I signed up for.

 

 7:50am

David has been taken back to the OR.  One last hug before he changes her life forever.

 

 9:30am

Laura was taken back to get prepped for surgery. She made a call to the kids to let them know everything was going to be okay.

 

 10:50am

Nurse came out and said David was doing fine and the kidney was out. They should be taking Laura back for surgery within the next 30 minutes. She brought a few pics of Laura’s new kidney. Thank you David!!

 

  11:20am

Laura is getting wheeled away. Her surgery should be about 3-4 hours long. She should be out of surgery by about 2:30-3:00pm.

11:55am

David is out of surgery and he is doing well. He’s going to the recovery room for a couple of hours. We are not allowed to see him until they take him out of recovery and put him upstairs.

2:15pm

David is getting taken upstairs. He and Laura will both be on the 10th floor, but in separate rooms.

2:25pm

Nurse came out and said the kidney  is in place.  They are closing her up now. They said the doc should come and talk to me in about 20-30 minutes.

3:05pm

Doc came out and said everything went well and everything looks good. He said they’ve done an ultrasound of the kidney and it has really good blood flow. They will repeat the ultrasound in the morning to make sure the blood flow is still good. She is being taken to the recovery room for a couple of hours and I’ll be able to see her around 4:30-5:00pm when she gets upstairs to the 10th floor.

3:20pm

I got to spend some time with David. He’s in pain, but doing quite well. Still has his sense of humor; although laughing really isn’t a good idea for him right now. Sorry I made you laugh David and thank you again for such a precious gift!

4:35pm

Laura is upstairs on the tenth floor now. I didn’t get to see her very long because they are getting her situated in her room. I’ll be able to go in  and see her after they get her settled. She looked like she was in quite a bit of pain, but I’m glad everything is going well.

Tomorrow is the big day! We have to wake up around 4:30am because we have to be at the hospital by 5:30am. We should be asleep already, but we’ve got too many “butterflies in the stomach”.

Laura doesn’t have to be there until 9:00am, but we’re going to be there with David at 5:30am. His surgery is scheduled to start around 7:00am and should last 4-5 hours. Laura’s surgery will start 30 minutes before David’s is over and should last 3-4 hours. We’re hoping everyone will be in a recovery room by around 3pm.

If all goes well, David is expected to be released from the hospital on Wednesday and Laura will be there until Friday or Saturday.

Many of you have asked me to keep you updated tomorrow so I’ll try to post often. We’d like to once again thank everyone who has helped us get here. We are VERY grateful for everything. Please continue to keep us in your prayers.

Short Version

Laura’s brother and sister were tested to see if they were a possible match to be a kidney donor. Laura’s sister, Esme, was a 4 out of 6 match, which is good but since it’s not an exact match, it would require Laura to be on more anti-rejection drugs. However, her brother, David, was a perfect 6 out of 6 match.  Surgery is scheduled for 11/24/14. That’s the Monday right before Thanksgiving.  His recovery is expected to take 2-3 weeks and hers is going to be 6-8 weeks. Please keep us in your prayers.

If you’re interested in reading all the details, you can read the long version below.

Long Version

I haven’t posted anything in the last 11 weeks because it’s been one heck of a ride. We really didn’t have any good news to report so I didn’t even feel like writing anything. Soon after starting dialysis on August 21st, Laura had 4 visits to the ER in 3 weeks. She had two more ER visits in October. However, three things happened in the last 11 weeks that made the transplant possible so fast.

First, Laura’s sister, Esme, and younger brother, David, were tested to see if they were a match for a possible kidney donor. Her sister was tested first and she was a 4 out of 6 match, which is pretty good. They could actually do the transplant with her as a donor, but it means you have to take more anti-rejection medication in the long run. Then they tested her brother and he was a perfect 6 out of 6 match. You can’t get any better than that!

The second thing that happened was that about 9 weeks ago, in hopes that they could get rid of the virus, she started an IVIG (intravenous immunoglobulin) treatment.

Laura was given IVIG last year and it helped knock down the virus levels. However, she never got the treatment like it was recommended. You are supposed to be given two “loading” doses in the first week and then booster doses every three weeks. For Laura, that meant two 80 gram doses followed by 30 gram doses every three weeks. Laura only received 1 and a half of the loading doses and none of the booster doses at the time. This was because our insurance denied the doctor’s request to use it so and refused to pay for it. They said it was “experimental” for her diagnosis. I believe they just didn’t want to pay up since it costs $150 per gram. In comparison, gold is only about $36 a gram. Our current insurance did approve the IVIG and now that she’s been on IVIG for 9 weeks, the virus levels are undetectable.

Finally, Laura’s health had improved significantly. Her severe anemia was much better and her albumin levels had come up. All of her other blood results showed that everything was at a level were it was considered safe to proceed with a transplant.

When the transplant doctors learned that David was a perfect match, Laura showed no signs of the virus, and her health had improved, they wanted to perform the transplant as soon as possible. We were first told that we’d have the surgery Dec 1st or Dec 8th depending on which date was available. However, both dates ended up being already taken so that’s when they asked us if November 24th would be okay.

Honestly, there was a flood of emotions. We were excited, shocked, happy, concerned, and everything else all at once. We were thinking it would be June or July at the earliest.

We’ve come a long way. Last year on November 24th, we were getting on a plane to the Mayo Clinic in Rochester, MN and this year on November 24th, she will be getting a new kidney thanks to her brother, David. I’m saddened that we were unable to save her kidneys, but at the same time, I’m grateful that she gets a second chance at a somewhat normal life. Yes, she will need to take anti-rejection medication the rest of her life. Yes, there is still a 30% chance that the disease could come back and infect the new kidney. However, we just need to have faith and pray that everything will work out fine.

The next few weeks will be pretty tough. Laura’s recovery will take 6-8 weeks and David’s will be about 2-3 weeks. The hardest part on Laura is that she’s been told to limit the time she spends with our kids for the first 2 weeks. Since she will be on very high doses of immunosuppressants, any little germ from a cough or a sneeze, could cause major problems. I guess she’ll need to FaceTime with them!

From the bottom of our hearts, we’d like to thank everyone who has made this possible for us. Thank you for all of your prayers and support. There have been many days where we just wanted to throw in the towel but someone was always there to make sure we kept moving forward.

 

Laura was released from the hospital last night. She ended up getting three consecutive days of dialysis. They went back and forth several times on whether or not they were going to release her yesterday.

First, they said they were going to keep her there the entire weekend because they couldn’t find a dialysis center that would be able to do the dialysis on Monday. Then they found one so we were told that she was going to be able to go home.

However, when they did her lab work, they found that her red blood cell count was very low. It was so low that they said that if she weren’t on the transplant waiting list, they would recommend a blood transfusion. (They try not to do blood transfusions on transplant patients because it could cause them to produce antigens that could potentially attack a donor organ.)

About eight hours later they re-tested her RBC levels and it had not dropped any lower so they said they would go ahead and release her.

Laura’s in the hospital again. I brought her into the ER at about 9:30pm last night. She’s been feeling pretty bad for the last 5 or 6 days and had gained about 25lbs of fluid in the past 4 days. She really didn’t want to come to the ER but we both knew it was time to come.

After running a bunch of labs they gave us the bad news. Her kidney function is basically all gone and she will need dialysis immediately. We were admitted and finally got a room at 2:00am.

She’s currently in the operating room getting the access line put in her chest. This is NOT the way we wanted this to go. We were hoping that she was going to have time to get the PD surgery done on Sept 2, but unfortunately that’s not the way it went.

Once they put the access in, they will start dialysis later today.

I’ll post another update later.

 

I have the most “bestest” sister-in-law in the whole world! Lala, I’m not just saying that because you’ve babysat for us a few times and endured the pain of four needy kids. I really mean it.

All joking aside, as soon as you learned that your sister was on the list, you took it upon yourself to call the hospital and insisted on being the first to get tested. This in spite of being told that if you donated a kidney, you would automatically be considered a high risk pregnancy if you ever decided to have a family. It’s going to be a week or two before we find out if you are compatible, it doesn’t matter if you are a match or not, I will forever be grateful for your kindness and unselfishness. I can see that you really love your sister and I can tell you that she loves you just as much. And so do Alex, Jacob, Jayden, Gabriel, and myself.

It’s official!! Last Monday we received a letter telling us that Laura has finally been placed on the Kidney Transplant Waiting List. Now that she is on the list, they can actually start testing to see if we have any possible donor matches. If we don’t have a match, it’s going to be a long 3.5-4 year wait.