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Post by Jedimom/Cor-Al Gelkar on Apr 26, 2005 18:07:57 GMT -5
We just returned from Ann Arbor. Nerf is home now. He is still very weak and lethargic, but he is able to get around and is no longer vomiting. He still has a lot of recovering to do -- he says he feels only like 60-65% well. He is supposed to go see a gastroenterologist down here to have his stomach scoped since he is still experiencing nausea. I also have to make sure he keeps fluids in him as it is hard for him to drink and he still hasn't eaten. The docs think that the Imuran triggered his WG. They are still thinking about keeping him on Imuran, at a lower dose, but Mark is not happy about that idea. We will meet agian with his rheumatologist when Mark within the next couple of weeks to discuss other treatment options as his lung nodules have grown in size over the last two and a half weeks. There are no new growths, however, which is good news.
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Post by JediMistressDragon on Apr 27, 2005 9:44:21 GMT -5
Glad no new growths, JediMom! My prayers are with him, along with a friend, who I found out went through her operation for removal of the second breast (had cancer couple years ago in other one). Keep us posted. JMD
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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 Apr 27, 2005 11:24:39 GMT -5
Keeping both of you in our prayers
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Post by lazlototh on Apr 30, 2005 10:28:39 GMT -5
Sometimes good news is small - but it can be celebrated too...
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JediKai
Message Board Member
TJA Savior
Posts: 5,560
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Post by JediKai on Apr 30, 2005 12:44:16 GMT -5
Well said, Lazlo.
JediMom, I continue to keep you and Nerf in my prayers.
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Post by Jedimom/Cor-Al Gelkar on Apr 30, 2005 14:03:46 GMT -5
Yesterday was the first day I felt I didn't have to fear for his life. That's a good thing. Today he is up more and talkative, but still very very weak. We went to our family doc on Thursday and he lost about 20 pounds in 7 days' time. Wish I could do that -- just not the way he did it. LOL. He still ha to get his stomach 'scoped, but no one can get him in until May 10th for that. <sigh> He still is not eating much -- just applesauce and popsicles mostly. But I have had him off his nauea meds for about 24 hours now and he hasn't complained about nausea.
He was pretty far down. When I checked out his discharged papers, they read that he was in "acute renal failure" when he got to Ann Arbor. So I know its goning to take some time for him to recover completely. I hope he can handle that
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Post by Jedimom/Cor-Al Gelkar on May 26, 2005 3:59:00 GMT -5
Just a quick update. We went to Ann Arbor yesterday for Nerf's follow up from his bout last month. Pretty much his rheumy has kind of run out of options for ways of treating him and want him to go to Cleveland Clinic (which is where the #1 docor for his disease is) for a consultation. Well, we're a tad concerned since Cleveland is about 2 hours further than even Ann Arbor is from our house (go figure since we live in Ohio) and we don't want to have to make multiple trips there. Meanwhile, they are going ot start Nerf on another new medication. At this point you can bet that Nerf is just a little gun-shy about starting a new med. We are waiting to hear back from the drug manufacturer to see if we can get it for free. Overall Nerf is feeling pretty good, but this last bout has started up some stuff he hasn't had to deal with for a year or so, such as kidney stones. Plus his nerve pain (neuropathy) has gotten markedly worse.
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Clone Commando
Message Board Member
May Your Swords Stay Sharp - Christopher Paolini
Posts: 464
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Post by Clone Commando on May 26, 2005 14:03:10 GMT -5
wow I live in Canton Ohio, less than an hour away from Cleveland, I'm sorry to hear about Nerf, I'm still too young to understand completely what your going throu but I'm sorry this happened to you and your family.
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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 May 26, 2005 14:07:15 GMT -5
We pray not only for Nerf's recovery and health, but for your safe travels also.
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Post by Jedimom/Cor-Al Gelkar on May 26, 2005 18:06:46 GMT -5
Plo, I have a very good friend in Canton. Visited there a few times.
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Clone Commando
Message Board Member
May Your Swords Stay Sharp - Christopher Paolini
Posts: 464
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Post by Clone Commando on May 26, 2005 18:56:49 GMT -5
That's kinda kewl, that someone actually knows where Canton,Ohio is. Well I wish you and Nerf the best of luck.
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Post by Leda EmBorr on May 26, 2005 21:17:19 GMT -5
Another new drug? As always, you guys are in my prayers...
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Post by Xana on May 28, 2005 14:16:00 GMT -5
I'll keep praying for you both. And the little one too.
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Post by Nova Darklighter on Jun 5, 2005 21:10:15 GMT -5
How are things going? I hope that Mark is doing better, have you heard nything on the new meds, or Cleveland? Thinking of you, and sending all the healing thoughts I've got you're way.
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Post by Jedimom/Cor-Al Gelkar on Jun 8, 2005 12:45:07 GMT -5
Last night (Tuesday), Mark had a vomiting episode. He vomied about 6-8 times. However, what concerns me is that he said he experienced "pain so intense [he had] never felt anything like it before. The pain was a vibrating type that engulfed his entire body. Today (Wednesday) he does not have any nausea but is still complaining of the pain, but not as intense (although it is still quite painful). Today it hurts worse when he has a bowel movement, but the pain still radiates through his entire body. He also said that the pain is going into his -- uh, you know -- also. He is also complaining of severe chest/lung pain, worse than normal.
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