Latest on t'plant and last clinic info

[Phyllis Ann Talbot]

Hi there everyone - I'm late updating from this last clinic honestly because we are in a bit of a funk. A little bit stalled on the medical stuff - so I'll run through that and then get to the fun stuff ;-).

For the #'s folks - things are rocking along, Potassium of 4.3, phos of 8.5 (this is back up this month so they may change around some meds), BUN 44, creatinine 10.5, Platelets 215 and HGB and HCT down a little to 9.1 and 26.2. We are increasing his Aranesp from every 2 weeks to every 10 days to try to help these last 2 - of course that means more frequent shots for Hyde - never fun- but we'll see what happens.

On the transplant front - the good news his his kidney transplant was approved by our insurance (kind of obvious seeing as how he doesn't have any kidneys ;-) - bu the bad news is - it doesn't really do us any good if the experimental drug we are hoping to use in conjunction with this isn't approved and as yet - it doesn't seem like approval for this has actually even been requested from our insurance - so we are going round and round with folks at the hospital. A little frustrating but we'll get it figured out....

The exciting stuff around here almost all has to do with school - Ruthie started kindegarten back on Aug 9th and is LOVING it - even to the point of getting up too early for the first 2 weeks (and that's saying alot since she catches the bus at 6:43 as it is!!! Hyde is also getting ready to start school - he'll be starting preschool after Labor day 3 days a week - and it will be his first time away from me - I'm actually pretty excited about it ;-)! His new teacher - Miss Leigh seems supper nice and he did really well at open house this week - I have a feeling it's his teacher that's going to need your thoughts and prayers more than Hyde on this one! We also gave up our paci this week (about time since the kids FOUR - but I've been a little slack with him!)

That's about it for now - we are heading to MD next Thur for Bill's parents 50th wedding anniversary and the kids are excited to see all the cousins - we'll update at next clinic or if/when we get any additional info on the transplant/ next steps!

As always - thanks!

Love, The Talbot's

[Jessica Olivia Frysz]

Phyllis,

glad to hear that the transplant has been approved, and yes usually insurance companies will approve it if the patient doesn't have kidneys, because I think my insurance company did the same for the work up for me. I'm glad that everything is going well and it's really good that Hyde's teacher is super nice, because it helps in a situation like this that teachers are supportive as well.

And, I know that it's frustrating that the drug hasn't been approved as of yet, but from what I am hearing it's getting approval for transplant as well, so keep your head up, because once that gets approved the transplantation can begin for both you and Hyde as well as for others like myself. I've already been told by my transplant team that that drug will most likely be one that will be used with me.

Keep your head up!

[Cheryl Biermann]

I can't believe his bun! That's so awsome on peritoneal, doesn't he eat a lot of protien? You guys are doin great on those labs!

Ruthie seems like my Katie, who started HS last year and had to catch the bus at 6:20-she was waking up at 4:00 to do a shower, straighten her already stick straight hair and do makeup and change clothes at least three times before leaving! She's calmed down a bit, so it's getting better, kindergarten jitters and excitement in the 9th grade!

If anyone is going to need prayers, your right it will be the teachers, until they figure out your just a phone call away! Good for Hyde, it's hard to believe after all he's been through that he's only four years old; and hats off to mom and dad too, it's not easy to let go is it? Have fun at the anniversary party and don't worry too much about the transplant stuff, the first time we thought we Nathan was going to get a transplant it took forever just to get the old kidneys taken care of, then we had a problem with his bladder that needed surgery, then blood work, then my work ups, then my visit with the phyc. We just had a meeting about getting things moving again and all we know will happen right away is the transplant team was consulted for their opinions, we will start paperwork for all needed approvals and the hospital also has to agree, because of the compassionate clause and the newness of it. So just keep chippin away, it will happen-and good luck!