Comments on: Karin’s Story http://www.bhdsyndrome.org/forum/living-with-birt-hogg-dube-syndrome/karins-story/ 'Research and Support' Thu, 02 Sep 2010 16:46:57 +0100 http://wordpress.org/?v=2.8.4 hourly 1 By: Karin http://www.bhdsyndrome.org/forum/living-with-birt-hogg-dube-syndrome/karins-story/comment-page-1/#comment-40 Karin Tue, 03 Nov 2009 02:20:11 +0000 http://www.bhdsyndrome.org/?p=840#comment-40 Hi Marva, Sent you an email a couple days ago - hope you got it. Karin Hi Marva,

Sent you an email a couple days ago – hope you got it.

Karin

]]> By: Marva http://www.bhdsyndrome.org/forum/living-with-birt-hogg-dube-syndrome/karins-story/comment-page-1/#comment-35 Marva Thu, 01 Oct 2009 02:09:23 +0000 http://www.bhdsyndrome.org/?p=840#comment-35 Hi Karin, I don't know if you remember me, but I have been trying to find your contact information since the last time we spoke via e-mail. Unfortunately, my computer crashed and I could not remember your e-mail address. It's so good to know that you are doing well and have great support from God and your loved ones. I am in the BHD study at NCI in Bethesda because of my diagnosis also. As a matter of fact, I just returned from NIH today, but I did not receive a good report. Well, I choose to believe the report of the Lord which is that I will not die, but live to tell what the Lord has done. I've had two surgeries in the last three years (a partial nephrectomy on the left with removal of one rib and a partial nephrectomy on the right ), and I was informed today that I need to have surgery immediately on the right kidney to remove two tumors that have increased in size. I was diagnosed with a growing tumor in the left kidney also, but it is only 1.8 cm rght now. I was told that there is no guarantee that my kidney could be saved. I informed them that I would try alternative medicine first, and they could test me again in six months. They advised against waiting, but I really do not want to undergo surgery and wake up with only a half a kidney that I may end up losing because it has a turmor growing in the center of it. Sorry for going on and on. I want to thank you for sharing your story here. Hope to read more of your posts. Marva Hi Karin,

I don’t know if you remember me, but I have been trying to find your contact information since the last time we spoke via e-mail. Unfortunately, my computer crashed and I could not remember your e-mail address. It’s so good to know that you are doing well and have great support from God and your loved ones. I am in the BHD study at NCI in Bethesda because of my diagnosis also. As a matter of fact, I just returned from NIH today, but I did not receive a good report. Well, I choose to believe the report of the Lord which is that I will not die, but live to tell what the Lord has done. I’ve had two surgeries in the last three years (a partial nephrectomy on the left with removal of one rib and a partial nephrectomy on the right ), and I was informed today that I need to have surgery immediately on the right kidney to remove two tumors that have increased in size. I was diagnosed with a growing tumor in the left kidney also, but it is only 1.8 cm rght now. I was told that there is no guarantee that my kidney could be saved. I informed them that I would try alternative medicine first, and they could test me again in six months. They advised against waiting, but I really do not want to undergo surgery and wake up with only a half a kidney that I may end up losing because it has a turmor growing in the center of it. Sorry for going on and on. I want to thank you for sharing your story here. Hope to read more of your posts.

Marva

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