Re-Introduction - Caregiver to young dialysis patient

I am re-introducing myself since it has been awhile since I've posted. I've been a member for a few years, and prior to that a long time lurker.

My name is Shauna and I am 32 and caregiver to my husband Tony (age 30) who is on dialysis. He has been on dialysis since 5/2009, so coming up on 6 years. He currently does in center hemo 3x per week using a chest catheter. He previously had an AV fistula that didn't work well, and ended up clotting off when he started PD about 9 months into our dialysis adventure.

His kidney failure was caused by a birth defect - Vesicoureteral reflux - that went undetected for many years as a child. He had numerous kidney infections requiring hospitalizations. When he was about 10 or 11 they did surgery to try to correct the problem and at that time his kidneys were so damanged from the frequent infections that they were underdeveloped. The doctors at the time figured he had total the function of one regular sized kidney and that would be enough. When he went to join the military when he was 22 they found extremely high blood pressure and that is when he found out he had the beginnings of kidney failure.

In 2008 he started the search for a living donor as a preemptive move to keep him off dialysis. When his brother and sister were unable to donate, I volunteered and on 9/16/08 I gave him my kidney, which he promptly clotted (and later was ruled rejection).

In 9/2009 I gave birth to our son who is now 5 and so far, has none of the genetic kidney issues that seem to run in his family.

On 6/15/12 Tony and I got married because he got the call that a cadaver kidney was a match and available. Yeah, we got married in town hall so he could be on my insurance post transplant. The surgery went well, and since they had thought he clotted my kidney, they had him on a lot of blood thinning medications in the hospital. He came home with a transplant but started rejecting the kidney by the time we went back for his first post-transplant appointment. He was readmitted to the hospital, they thought they were going to take the kidney out right away because they assumed it had clotted like mine, but when they went in to remove it, they found the blood flow was fine, took a biopsy and ruled it rejection and started a long, fierce battle to try to save it. He was in the hospital about 2 weeks (and were waiting on an experimental medication) before they lost the battle and the kidney was removed.

He is now highly sensitized and in need of either an exact match or a living donor so that they can use desensitization protocols to make the kidney and him compatible.

We plug along, our lives revolving around dialysis it seems. The one blessing is that he is home every day when our son who is now in school gets off the bus and can take him to after school activities, but it limits a lot of family things like vacation because we always have to be back in time for the next dialysis session. Living this way for 6+ years had really started to take it's toll on me, but I recently started to become more assertive in my needs (especially now that our son is older and doesn't require so much one on one attention and is independent) and done things like take short vacations to see friends so I don't lose my mind between work, home stuff, dialysis stuff etc.

So that basically sums up me and my story. Happy to meet all the new faces and see some old familiar ones as well.