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Post by Jedimom/Cor-Al Gelkar on Jun 9, 2005 5:14:08 GMT -5
Spoke with both his rheumy and pulmy last night. The rheumy is pretty well perplexed and doesn't understand why Mark is having all these odd symptoms. He pumped up the Prednisone to 20 mg (poor Mark! He lost so much weight, he doesn't want to put it back on!) The pulmonologist suggested it may be kidney stone related. Mark has had so many kidney stones that he can pretty much tell when one is coming and he said this is a totally new type of pain. He isnot passing any "gravel" and there is no blood in his urine, but I will keep monitoring. Someone on my Wg list mentioned Shingles. That's something I don't think we've thought about. Will keep an eye out for rashes. This morning, Mark is feeling somewhat better. Now the pain is centered in his chest/lungs. Makes me think the ole granulomas are acting up again...
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Post by amber on Jun 9, 2005 9:32:20 GMT -5
Praying for all of you, keep the faith.
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Post by Jedimom/Cor-Al Gelkar on Aug 2, 2005 20:14:35 GMT -5
I will be out of town Thursday and Friday as Nerf will be having eye muscle surgery. Nothing major. He had crossed eyes as a child and the surgery he had at age 4 is no longer holding. He had it done again about 2 years ago but it didn't take well, so he has to get it donw again. But it still adds to the stress. At least I won't have to worry about Karm, he is staying with friends. I'll let you all know how it goes but I don't expect any complications
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Post by ayanabashu on Aug 2, 2005 22:47:19 GMT -5
Good luck Nerf.
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Post by Leda EmBorr on Aug 3, 2005 1:22:50 GMT -5
Yeah... be well!
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Post by lazlototh on Aug 3, 2005 20:25:32 GMT -5
Good Luck, Nerf
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Post by Jedimom/Cor-Al Gelkar on Aug 7, 2005 10:43:04 GMT -5
Mark had eye muscle surgery this past Friday, so I was away from the computer Thursday until today pretty much. Had a few chances at the hotel, but that is one slow computer! The eye problem is not directly related to his WG, but the WG has complicated it. He had crossed eyes as a child and had muscle surgery back then, but it needed to be re-done. He had it done about 2 years ago, but due to the WG, it did not take well and had to be re-done now. So right now his eye is swollen and red and icky. And I came home with a sinus/upper respiratory infection so my concentration isn't where it should be either. Mark started new medication about a month ago now. He seems to be tolerating it well. We had some mixed news when his last chest x-ray he had showed that the lesions were smaller, but his blood test showed that the disease was still extremely active. Overal he has been feeling lethargic and in a lot of pain due to the nerve damdge in his legs and other parts, but okay. Tolerating the heat has been hard this year, though
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Post by Jedimom/Cor-Al Gelkar on Jan 5, 2006 22:10:36 GMT -5
Well, we went to the local Cancer Center yesterday for our consultation to see if Mark could get Rituxan treatments here in town rather than having to drive up to Ann Arbor each week for a month. This will be Nerf's second round of chemo... basically used as a maintenance drug with his disease, not as a cure. His forst round was about a year ago and they prefer to have the treatments about 6 months apart. The oncology docor seemed somewhat knowledgable on WG but he thinks he should treat Mark like a cancer patient -- that is 8-16 weeks instead of 4 -- and see how that goes. I have already contacted our rheumatologist up at U of M to make sure that this does not happen (or at least not without his consent) since there is no data saying that any extended treatment is beneficial for WG. I have already heard back from U of M saying that no, there is no reason to extend treatments and that he will tell Dr. Gerad so. This Dr. Gerad just seemed like he has to be in control and it just seemed like he wanted to take over Mark's case completely. But we will not allow this to happen. Anyways! Mark starts his four weeks this coming Monday. So my Mondays will be occupied for the next month. But at least we don't have to go to Ann Arbor every week!
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Post by Nova Darklighter on Jan 5, 2006 23:32:59 GMT -5
I'll be thinking good thoughts for you. Blessings.
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Mon-Jas Charan
Message Board Member
"Poena Vigoratus. Pullus cavo vix. Palma , est eternus"
Posts: 2,630
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Post by Mon-Jas Charan on Jan 5, 2006 23:40:03 GMT -5
Our thoughts and prayers are with you.
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JediKai
Message Board Member
TJA Savior
Posts: 5,560
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Post by JediKai on Jan 6, 2006 2:28:28 GMT -5
As always, you and Nerf are on my prayer list. It's good you won't have to drive to A2 in the winter!
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Post by Ani-Chay Pinn on Jan 7, 2006 20:27:35 GMT -5
Glad you don't have to do all that driving. Bring a whip and chair next time you see the new doctor. Or con him into thinking that what should be done was his idea all along. At least he wants to go after Nerf's case.
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Post by Jedimom/Cor-Al Gelkar on Jan 14, 2006 20:52:19 GMT -5
Well, Nerf didn't get his infusion. We sat at the cancer center for 2 hours on Monday before they told us they basically refused to treat him because they are afraid they won't get reimbursed by Medicare for the treatments becasue the medicine is not FDA approved for his disease. (Well, nothing really is.) Yeesh. U of Mich. had no problem last year with it. But maybe because that is a hospital setting. I am looking into trying to get them done at a local hospital, but am afraid we'll run into the same situation. <Sigh> All the joys of having a weird disease. We'll probably end up having to go to Ann Arbor again every week. But if we have to do that, we'll wait for spring and (hopefully) better weather (at least not have to worry about snow every week)
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Post by Ani-Chay Pinn on Jan 15, 2006 21:19:42 GMT -5
Sorry, to hear that the local plans fell through. I hope the hospitals work out after all. My brother-in-law has an auto-immune problem; doesn't even have a name; it's just "not-ALS". They try different things to keep it stable and so far it's been that way, but he can't work with it.
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Post by Jedimom/Cor-Al Gelkar on Jan 15, 2006 21:25:33 GMT -5
Wow Ani. These autoimmune diseases are horrible. I swear my mom had one too but was never diagnosed. She just ahd so many things that reminded me so much of Nerf's experiences. What are they doing for your brother?
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