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Please pray for Tracy! I receive information by registering to Google about CGD and this morning I opened one up to find out that Tracy's wife is asking for prayer for Tracy is sick and needs support. He has ulcers and he is in D.C. Sorry if this is incoherent, but I am so sad and wish to God I could do something. Please pray for Tracy! When we found out that Joey(he was 6 years old then..he is 15 years old now) had CGD Tracy's website was the first line of help and support for us. We didn't know what CGD meant or how it would impact our lives. Thank you and lets keep in touch! LaDonna Hunt
Submitted by LaDonnaKaye on Wed, 2007-09-19 07:54. categories [ General Discussion ]
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 Tracy, We're praying for you that you'll have a quick and complete recovery. Did they culture anything from the needle biopsy yet? Is your wbc normal? Stephen had a drop in his wbc many times and it was most likely caused by his Bactrim. Hope you're out of NIH real soon! Mary  Hi Mary, Two needle biopsies now and still nothing. The wbc was initially way high (24) then after a few weeks of antibiotics was normal (8). When I showed up last monday for a follow-up it was really low (1.6). Now, with a change of meds, it's normal again (7) and I'm back home. So now we play the game of change the meds, wait a few weeks, see if anything improves (the last few CT scans were unchanged). If we aren't successful at this game after several tries then I'm sure a surgical option will be discussed. After more than twenty years with no major infections I had almost forgotten what a pain it is. Thank you for your prayers, -Tracy
 Hey Tracy, glad to hear you are home. It's been about 20 years since I had any major infection. A small part of me keeps saying, its gonna happen one day. But I don't sit around waiting. Hang in there, you well know that medical technology has greatly advanced in those twenty years. We are just a couple of old-timers that own a few bricks in NIH. Take care, Joey  It's so good to hear you are home and doing much better. We will keep you in our prayers for a speedy recovery. Lizz Kirk
It's been just over two weeks now at NIH but I should be going home this afternoon. There was a little trouble getting the home iv infusions set up but the social worker here was very helpful and I think we're all set now. I'll be back in two weeks for another CT scan to see how things are going but things look pretty good. No pain or fever and the wbc is finally reaching normal levels. Thanks for all your thoughts and prayers. -Tracy Hi all, Thanks for the post LaDonna! It's interesting to know that Google is current on my medical condition! I did make it to NIH earlier today and since the rooms here have internet access (nice upgrade from when I was last an inpatient) I thought I'd check in with the community and provide an update. We had assumed something like a bleeding ulcer but the CT scan actually showed a liver infection. This was a bit of surprise since I have been mostly a pulmonary infection kind of patient. Needle biopsy has been scheduled for tomorrow. Hopefully, this is the primary cause of all the pain and fever symptoms and things will get back to normal with some antibiotic treatments. Well, that's all I really know for now. If any of you are at NIH let me know. I'm probably just down the hall. Thanks to everyone for your support. Your prayers are also very much appreciated. Cheers, -Tracy  Tracy,
I was so sorry to hear you were at NIH - how is the infection? What meds are you on?
We live close by - is there anything you need?
In appreciation of each and every healthy day, Marty Cowan
(Clayton's Mommy)
Hi Marty, Nothing has grown from the biopsy yet. I'll probably be here at least a few more days since my white cell count spiked a bit this weekend and they want to keep an eye on that. Aside from the usual orals, I'm on Vancomycin and Piperacillin. I don't think there's anything I need here but I really appreciate the offer. I came packed for a few days and between the laundry, the gift shop, and the nih pjs I should be fine on clothes and the gift shop had a few minor items (like nail clippers) that I forgot. Feel free to stop by if you happen to be in the neighborhood but certainly don't make a special trip. Otherwise, I'll be keeping an eye out here for messages. Thanks again, -Tracy Tracy, You sound like you are in good spirits, how are you feeling?
We would be happy to come visit - do they let kids in? Is that safe for you and the other patients? Our older son (almost 5) has CGD - is it safe for him? Sorry for all the questions. We've been to NIH only once before (Clayton is on the annual protocol screening there). The security was tighter than the Pentagon!
Thanks,
Marty Cowan
I'm feeling mostly pretty good. Still a tad sore from the needle biopsy but nothing serious. I'm not sure about the protocol for visitors but I can find out tomorrow. I'll send you an email then when I know how that works.
Cheers,
-Tracy
His was my first website also. Along with Mary Hurley I have received most of my information through the two of them. I pray all goes well and wish him a speedy recovery. Karen
Ditto...Tracy's website along with information from Mary Hurley was our first contact with a community for CGD. These are fairly old posts...is anyone still around? I've posted over in Medications, we're needing some help as well. Hope this finds things 'ok' out there...
Beverly Robinson, Nathan's Mom |
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Another quick update. I came back to NIH monday night (10/15) for a follow up CT and labs the next day. To make a long story short(er) the wbc was down to 1.6 which is way too low and probably an ill effect of one the IV meds. So I'm admitted again and they'll be doing another needle biopsy tomorrow morning (10/18) to see if they can find the specific organism in the liver abcess. Throw in a little pericarditis and that's my week so far.
Looks like I'll be here until at least monday and probably a little longer. I'm sure they'll want to juggle the meds a little, regardless of what the biopsy shows. At least I packed the balloon animals, some origami paper and some reading material this time. Unfortunately, my poor wife is seeing yet another short trip turn into a much longer time away from home.
I hope to be back home soon.
Thank you all again for your thoughts and prayers.
-Tracy