Thursday, August 6, 2009

Getting closer...

So today was Neil's appointment with his nephrologist here in Columbus. He goes to Dr Saunders and let me tell you.. we just love this man! He is so funny and spends a lot of good quality time with us!

Overall the appointment was ok. They checked his BP... 151/104.. YIKES! And he's gained some weight, but that can be attributed to him feeling better and eating more as well as the fluid in his legs that has been building up. His Creatinine is 7.5!!!! This kinda made me nervous but he said it's not much of an increase over the 6.8 that it was in early July. Last we had been told was 6.3 on the 6/3/09 appointment so it did seem like a big jump to me. He didn't change any meds except to increase the Lasix for the swelling.

I guess the big thing he told us.. or big things are..

* if we didn't have a good donor list going with several people on the list to be worked up, he would be referring him to a vascular surgeon for a shunt for dialysis today... but since they are working with 4 people and we have a long list, he said it's ok to not do the shunt right now (WHEW!) Now we just need to make sure our donors get on the ball with getting their paperwork in and do all the testing as quick as they can so that we can avoid the big "D"...

* he said he'd ideally like to see the transplant happen this year!!!!! I'm a teacher and I plan so I like hearing that he's also thinking forward and 'planning' when he'd like to see it happen. HOWEVER.. I asked him to clarify if he meant 'this year' as in 'by the end of 2009' or if he meant sometime in the next year from today... and of course he meant, by the end of 2009...
WOW.. deep breath.. ok.. hmmmm... exhale...

So.. I feel better knowing that he has this 'target' time frame in mind.. and of course it all depends on getting a live donor to be a match and making sure they comply quickly to get the tests and paperwork in... but I am starting back to school in 2 weeks and need to make sure I have a plan set for who is going to go where/do what/sub for me etc when all this goes down. Oh and I'm supposed to start classes at Ashland for the 4th/5th grade endorsement... which might not happen now.. need to talk to my professors about that when we start.. And I might as well get this out of the way right now.. anyone willing to watch our dog, Mojo, when it happens? If my parents can't make the trip up, my mother-in-law will come stay here and take care of the kids but she can't take care of the dog too.. so yea.. if you really want to help.. offer to take our sweet, loving, precious puppy for awhile! :)

I think that's it for now.. follow-up with the Dr is in 2 more months.. hopefully by then, we'll know if our original 4 are a match or if we need to move on!

Oh and thank you to all of you who have been reading and either responding privately in email, posting comments on here or talking to me in person.. I really appreciate the love and support.. it keeps me going!!!!!! XOXO

11 comments:

  1. Jen, you know you and Neil are always in my prayers. Marty

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  2. Good luck with it all. My husband has it too and I too am a teacher. We have a donor beinng worked up, but he offered us his friend to psychically heal Sean. Prior to this the removal was tentatively scheduled for this October and transplant Dec. 09. Now that I have my sub lined up, I'm not sure it's going to happen.

    If I weren't so far away, I'd watch your dog. Sorry. Hang in there-this too shall pass!
    Mary

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  3. Hi Mary! Thank you for commenting... do you blog too?
    Jennifer

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  4. I started one and haven't told anyone about it, so no comments yet. I can't figure out how to post as anything but Anonymous :-)
    Mary

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  5. Mary.. when you go to leave a comment for me.. do you see the drop down box for 'comment as'? do you have an account with any of the ones listed? if you started your blog with blogger, you should sign in as the 'google account' because google and blogger should be tied together... see if that works!
    jennifer

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  6. I think I got it!! At least I posted to my sister in law and it put my information right in. Here is my link if you are interested. It is VERY basic as I am not quite that saavy yet ;-) Thanks for helping me!
    http://hoefling-livingwithpkd.blogspot.com/

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  7. ohhh i think i got the connection now.. bruce and sean are brothers! i remember reading that on bruce's blog and aren't you the one i contacted on facebook in trying to look for bruce's blog?

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  8. I remember that, but Amy didn't get the connection at the time.

    Neil doesn't look to have a belly like our hubbies. How old are your kids?

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  9. lol.. he does have one.. in fact he gained about 8 lbs since his last visit! but it could be that he's been eating good and had the water weight gain! our boys are 9, 8 and 6 and go to the school where i teach!

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  10. Have you guys gone through a fund raising foundation to help with expenses? My mother in law got us in touch with NFT who manages the money and provides the tools for donations that people can use to claim on taxes. This money is good until they are 85 and with all being so young, we may be doing this dance a second time-I really hope not.

    All boys...oh boy! We have a 15 year old girl and a 9 year old boy. Fun all around!

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  11. Hey - We will be there and we will take care of my baby sue MOJO

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