Thursday, August 21, 2008


Current mood: calm

Hello friends,
SO I just got back from my first follow up with Dr. Post who is my Nephrologist (kidney doc) and I must say an AWESOME doctor at that.... All good news! He is becoming the only one of all the other Kidney docs I've been seeing that I feel like I can trust and who KNOWS what is going on, and tells it like it is... I asked him today If I can just deal with him from now on (unless of course its an emergency and he is off) and he agreed, so I'm really happy about that. I was dealing with about 6 different doctors this week and all but one were totally and completely unfamiliar with my case and telling me all sorts of conflicting things.... two kept telling me things weren't looking good and giveing me test results that god knows where they got the "bad" numbers.... I feel like I've been in a PANIC of PANICS all week and according to the one Dr. I trust completely with my life it was pretty much all for nothing. The aspect of my illness that could land me back in the hospital with more blood and plasma treatments would be the "blood disorder" half, and according to Dr. Post all of my test numbers are holding steady or improving, so that is looking GOOD. The other half is the "kidney disease" portion and in some ways I doing well there too.... Dr. says right now we are focusing on that portion and just monitoring the blood portion to make sure it stays steady or keeps improving.... On the kidney homefront, I am still retaining fluid like crazy so I am on a VERY sodium restricted diet, and I have to find myself a pool to go in for at least an hour a day (I know it sounds weird but its called "submerssion therapy" and this dr. swears it works even better than the dieuretics I'm on most of the time), He also really wants to do a biopsy but I am still bruising very easily and then they don't go away so he is concerned about the dangers of bleeding still.... Anyways, all in all it was a great visit and gave me the first peace of mind and relief from worrying about ending up backin the hospital that I've had since last thursday when I was discharged..... YAY!

oh yeah, and this Dr. just might be the coolest MD I've ever met, lol... Today he says to me something to the effect of " You are a very unique patient and I respect very much that before all this happened you were a health conscious person, eating organic and healthy food, taking good care of yourself.... Not that ANYONE deserves this but YOU of all people DEFINITLY didn't deserve this"... I thought that was really nice of him to say.... he also said that my case is the strangest case he's ever seen.... out of a disease that is 1 in 100,000 mine has been so unpredictable and weird that it is another 1 out of 100,000 of that original 1 out of 100,000..... so I asked him if he thinks I should go buy a lottery ticket, lol.....

ANyways, in other areas of life things are going pretty good... I'm starting to get over this cold and stomach bug I've had since sunday... Lennon is back to being completely in LOVE with his Mama.... I discovered a couple days ago that I am STILL LACTATING with is totally bizzare and in my opinion a complete MIRACLE.... I am on so many meds right now I don't dare try and actually breastfeed him but I think I may start trying to pump and dump and once I am off the meds I will offer it to him and see if he is interested in another go.... then maybe we can someday have the gentle and loving end to our nursing relationship that I had hoped for.... I am also feeling stronger every day... I can climb stairs without having to pull myself up on the hand rails, and I can get back up from a squatting position which I couldn't do without TWO people pulling me up just a week ago! I can also carry Lennon short distances now too! So..... things are looking positive as of this afternoon.... I'm not getting too excited cause I'm still straddling a very precarious fence and there is still something VERY not right with my kidneys BUT I am staying hopeful and trying to focus on the small victories..... one day at a time I am going to kick this thing's ASS. Thank you all for all your thoughts and prayers, they are working wonders so far! I haven't really been up for visitors all this week with my cold and stomach issues on top of just the general effects of the HUS/TTP.... we shall see what next week brings, I will be sure and keep you all updated on here.... I LOVE YOU ALL!
Kalee and Lennon

Currently watching:
Monsters, Inc. (Widescreen) (2 Discs)
Release date: 2002-09-17

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