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pberggren1
06-16-2009, 08:39 AM
Got out of the hospital on Friday.

On about June 2 I started to have a congested feeling in my chest like it was in the upper lung and bronchial area. I started to have a fairly good wet cough with this as well. On the evening of June 6 the congestion and cough were much worse and I started coughing up blood with the mucus and sometimes just straight blood. I called in sick to work that night and my dad took me to the hospital.

I told the ER doc my whole history. He said he read about WG but has never seen anyone with it before. I told him it was best I had a chest x-ray done and to consult with my Rheumy in Saskatoon. They gave me 1g of Pred IV that night and another dose on Monday morning. On Monday, June 8, they finally did a chest x-ray. They released me on Tuesday morning.

As it so happened I had regular appointments scheduled with my Rheumy and Neph on June 10. My dad took me up to Saskatoon to see them. My congestion and cough were still bad and I still felt fairly weak. I saw my Neph first and he was doubtful that it was the WG flaring. I then saw my Rheumy and she talked with my Neph and looked at the chest x-ray. She said the chest x-ray looked more like pneumonia. She then admitted me for 2 days to the hospital to try to narrow this down.

That night they did a CT scan of the chest and a whole bunch of blood work. A doctor came to see me late that night and said that it looked like WG to him and the Radiololgist and said that another Rheumy would see me in the morning.

The next day the Rheumy came to see me and said they werenít sure if it was WG or a lung infection and that they wanted to do another CT scan of my neck area because the Radiologist saw something there. They did the CT later that afternoon.

The next day the Rheumy came back and said that the thing in the neck was nothing and that they were 98% certain that it is a lung infection. They released me that day, June 12, around noon. They gave me six days of an antibiotic called Moxifloxacin HCl 400mg and upped my Pred to 40 for 2 weeks and down to 30 for 2 weeks and then down to 20 again.

Itís nice to be back home. I am feeling a little better today. The congestion and cough are getting better and I am feeling a little stronger. The blood work they did in the hospital in Saskatoon showed up good. White cells were normal and blood and urine Creatinin were normal as well. CRP and ESR were good too. I wont know the results of the ANCA until about June 25. Does anyone else have to wait about 2 weeks to get their ANCA results?

jola57
06-16-2009, 04:56 PM
I'm glad you are out of the woods so to speak. I get my ANCA within a week, but if they are busy I don't get the mailed out copy unitl 2 weeks or even more. My doc however gets it in couple of days.

pberggren1
06-16-2009, 05:48 PM
Thanks Jolanta.

My GP doesn't get the results for about 2 weeks.

I was wondering about Actonel. My current Rheumy I've had for about 4 and a half years. She put me on Actonel in my first flare back in 2004 but hasn't brought it up again since. The admitting Rheumy in the hospital seemed to think it is necessary if I am on Pred. If I remember correctly I took one pill a week and it was about $10.00 per pill. Does this sound right to you? I should be seeing my GP this week. I will discuss it with him. Maybe he could give me some samples.

Anyone else out there with info on Actonel please post. I once heard that Actonel doesn't work as well as just taking Calcium. My Rheumy seems to be fine with me just taking Calcium. Maybe I should have one of those bone scans done?

Derek
06-16-2009, 06:40 PM
It takes me 2 weeks plus to get my anca results. I have asked and was told they have to culture and stain them and also do a PR3 test.

Glad you are feeling better

Derek:)

pberggren1
06-16-2009, 07:54 PM
Thank You Derek.

jola57
06-17-2009, 04:26 PM
Phill, calcium supplements are great and i take them in between the Actonel but being menapausal, I have to take both. Bone density test is what you want, ask your GP to send you for one. I think it is a personal issue whether you want to take Actonel or not. It is proven to help with bone density loss so see what the results will be and go from there

coffeelover
06-17-2009, 11:53 PM
Oh my Gosh Phil!

I am glad you are out of the hospital and starting to feel better. Sounds like a hassle for you for a while. My anxiety level rises considerably when doc are performing test after test. I hope you are a calmer and more accepting person than I am. I just want to you know that I feel for you and am wishing a speedy recovery.
My ANCA tests take at least a week, sometimes two.
LIsa

Doug
06-18-2009, 12:55 AM
Got out of the hospital on Friday....It’s nice to be back home. I am feeling a little better today. The congestion and cough are getting better and I am feeling a little stronger. The blood work they did in the hospital in Saskatoon showed up good. White cells were normal and blood and urine Creatinin were normal as well. CRP and ESR were good too. I wont know the results of the ANCA until about June 25. Does anyone else have to wait about 2 weeks to get their ANCA results?

It takes two weeks for me to get cANCA results as well. Congratulations on having normal Creatinine, white blood cells, red blood cells, etc. It really does sound good for you that the cANCA will look good for you too!
Let's cross our fingers and toes, and hope so! It seems odd saying "I hope you had pneumonia", but isn't that the way of us Weggies when we really mean to say, "I hope you aren't having a flare"? :)

pberggren1
06-18-2009, 07:08 AM
Thanks Jolanta,

I will look into getting a bone scan done. I'm not sure if I have to travel to Saskatoon for that or not.

Thanks Lisa and Doug for your concern as well. I am feeling a bit better today. The energy level is up some more and the congestion is almost gone and am barely coughing any more.

jola57
06-18-2009, 02:47 PM
That is good news Phill, take care of yourself

Doug
06-20-2009, 10:47 AM
I saw my pulmonologist today. No issues, really, just that my drug plan requires a doctor's visit before a renewal prescription can be processed. I had three such drugs; the visit served the purpose of initiating the process. Had blood drawn for cANCA testing. I have no expectation other than an acceptable outcome. Stay tuned. My blood pressure was high. This is the one thing that I don't take any heart-specific drug for. I will monitor it at home for a few days as I suspect it has more to do with the fact my brother came for a visit yesterday, we went stayed up late watching YouTube videos (lots of Japanese cats, others I find amusing, poor brother!)- about midnight. Got up early to meet friends for breakfast of the sort lumberjacks might eat (two eggs, fried; hashbrowns; wheat toast with real butter; coffee (a bit weak for this place)- precisely 5:23 we got up, but I had difficulties sleeping all night; a large glass of orange juice. I feel I've followed every wrong path possible for a weggie in the past 24 hours. :( Bad Doug. For those of you still working toward remission, do not do what I did today!

jola57
06-20-2009, 01:51 PM
No No No, good Doug. Once in a while have some fun, ooh I do love your breakfast. We have Home Restaurant close to where I am and every so often I go there to get just that mmmmm.

Jack
06-20-2009, 03:21 PM
Have to agree with Jolanta. Quality of life must be given its priority.

pberggren1
06-20-2009, 03:28 PM
Maybe that's what I'll have to breakfast or brunch on Saturday. That sounds absolutely delicious Doug. I wouldn't feel bad about that. I know I certainly don't follow a very good diet myself. But 05:23 is way too early. I've always said that mornings are enough to kill a person. So be careful.

Doug
06-22-2009, 06:36 AM
Guilty pleasures are, no less, pleasures! :(

Doug
06-29-2009, 08:42 AM
We've been wondering about our resident expert and friend Sangye for some time. I sent her an e-mail. It just isn't like her not to be involved on the forum! Here is her response, the answer to many questions and confirmation of some of our concerns. Unfortunately, I've had my three siblings visiting from out of town this week, and, as you can see below, I didn't have a chance to return to my computer for nearly a full day. Regardless, I plan on sending her another e-mail, just in case I can either catch her before she goes into hospital, or, if not, so that it's there when she gets out. Perhaps everyone else can send her a "get well" (or "find your new normal!") note. I think it'd mean a lot to her. Doug:)

Thanks
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Sangye Hatchion to doug
5:40 PM (22 hours ago) Reply

Hi Doug,
Thanks for your email! I'm not feeling well, but the reason I haven't been on for a few weeks is that for some reason my internet connection won't allow me to load the page! I've emailed Andrew about it and he's tried to help. He's in the middle of looking for work, though, so I don't want to bug him.

We had some internet problems a few weeks ago due to rainstorms, and it knocked out the house modem (I rent the basement, and the landlady includes internet in my rent). It took the lousy ISP a week to come fix it. But ever since, I haven't been able to load the WG forum or even Andrew's blog since. Andrew said they're on the same server, but that it's working okay in this area. Every other website works fine--how weird is THAT??

I've asked my landlady to see if it works on her computer-- maybe that would give us a clue. But she hasn't gotten around to it yet.... I think she's going to talk to the ISP this week. I've told her it's important.

I sure miss all of you. I can't tell you how many times I think, "I should check in on everyone" or ask about this person or that. I think it's 3 weeks now, which is like dog years for Weggies, huh?

I might wind up back in the hospital tomorrow. I'm trying to lay very low today and see if I can avoid it. I did way too much this week and already had non-stop sweats and an eye problem, (The eye isn't Wegs, just collateral damage) So today I'm incredibly weak, I'm pretty sure I have a chest infection, and my other ankle seems to have cellulitis now! But if I did everything to get to the hospital--shower,pack, walk to the car, sit in a passenger seat for 1.5 hrs, have to stay awake all day to talk to docs, etc...-- I'd wind up admitted for sure. If I rest, I might be able to recover enough and avoid the whole show. Hard to explain to the docs, but we all know how it is.

I hope everyone is doing okay. I got some of the posts via email for awhile, but unless you log in again, you stop getting them. I'm going to have a ton of catching up to do once I get back on. I'll be clicking on the Cytoxan Rabbit from Hell quite a bit....

Can you copy/paste this email on there so everyone will know I'm trying to get back? You guys are like family. Weird family, but family. :)

Take care,
Sangye
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Doug
06-30-2009, 06:33 AM
Everyone- Here's Sangye's update on her current health conditions (06-29-09) Doug T.:

Hi Doug,

Thanks for the good wishes. I spent 12 hrs in the Hopkins ER yesterday, assuming my symptoms were pneumonia. Chest CT showed "significant worsening" of lungs, which radiologist thought was Wegs. My hemoglobin was fine, and the lungs look inflamed but not bleeding. They wanted to admit me. They wouldn't try to contact my rheumy until today. It was midnite by then-- completely worn down and sicker than when I arrived. It would have been hours just to get a bed and I knew I'd literally be up all night with upstairs nurse and then doc exams. So I decided to go home and at least get some sleep. (I live 1.5 hrs away) I figured it'd be easier to contact my doc on my own.

I'm glad I did. Today I've started coughing up a little blood-- none for 3 yrs-- so I'm heading back. Trying to get "straight admitted" by my doc to avoid ER. I'd appreciate a prayer or good wishes that it be simple.

Thanks to everyone.

(Okay to post this. Gosh, Doug you've become sort of my ghost writer, huh?)

Best,
Sangye

pberggren1
06-30-2009, 03:33 PM
Thank You Doug! My prayers and thoughts are with Sangye.

jola57
06-30-2009, 04:02 PM
Thank you Doug, it eases my mind a great deal. I too feel that we are like this weird family and not hearing from one of us is upsetting. I am hoping Sangye will get back on her feet soon, I miss her common sense and quirky humor. Give her my best wishes and prayers

Doug
07-01-2009, 03:03 AM
Thank you Doug, it eases my mind a great deal. I too feel that we are like this weird family and not hearing from one of us is upsetting. I am hoping Sangye will get back on her feet soon, I miss her common sense and quirky humor. Give her my best wishes and prayers

Go to members, above. Sangye's on page 8, I think it is. Double click on her name, and it'll bring up her personal data and how to leave her a private message or how to e-mail her. I recommend yuou e-mail her since she's having problems with her internet connection. I think she'd get a kick out of a bunch of e-mails from us on the forum! :o