Going to Cleveland Clinic tommorrow

[Debbie C]

I had been getting ready for a garage sale for the past few weeks, going thru boxes that I haven't unpacked since I moved back home..about 11 years ago. They have been in the basement where it has recently gotten wet from the rain. And after all that time the things in my boxes were musty and mildewy. WELL needless to say I started having a hard time breathing. I went to the e.r. Fri and they did some bloodwork and shot me up with benedryl and a few other things that knocked me out ,then sent me home.I ended up back at the main e.r. on Sun. they did some blood work, a ct scan and they wanted to give me a shot of prednisone ( 125 mg.) but I talked them down to 80 mg. and also gave me 3 breathing treatments of albuteral sulfate. I was a space cadget when I left. I was supposed to see Dr. Hoffman on Monday but he went on vacation and referred me to Dr. Villa-Forte but her schedule is full so now I'm seeing a Dr.Khasnis. When I looked him up he knows vasculitis but does not say anything about Wegeners so I really don't want to go. I got a copy of my ct scan and all the report as well as all my blood work. It did show 2 out of the 4 nodules I had are gone and the others are 4 mm and 3mm so that's better than a few months ago But on Fri my bloodwork was fine and on Sun my glucose was 126 (a little high ) and my bun was at 20 ( has never been that high )so I'm wondering why the change in 3 days..could this be going to my kidneys ? My creatine was at 6 which is good.
The only thing really bothering me know is my sinuses draining into my throat but I go see my ent next week. Last nite I took a walk carrying two hand weights so my chest was a little sore today. I asked if it were neccessary if I still come up there and they said Dr. Hoffman wanted me to be seen but I think ( hope ) the worst is over. Anyone else going up there tomorrow ???

[mishb]

No sorry, I wont be going there tomorrow but it would be lovely for you to catch up with someone who is

I just want to wish you luck and hope that Dr. Khasnis turns out to be one of the good guys.

Have fun

[Debbie C]

Thanks Michelle.I'm sure it'll be a blast !!! Wish you were going !

[Alysia]

Hi Debra,
I also wish I was going... I hope things will only get better now.

[Barbara N]

I had been getting ready for a garage sale for the past few weeks, going thru boxes that I haven't unpacked since I moved back home..about 11 years ago. They have been in the basement where it has recently gotten wet from the rain. And after all that time the things in my boxes were musty and mildewy. WELL needless to say I started having a hard time breathing. I went to the e.r. Fri and they did some bloodwork and shot me up with benedryl and a few other things that knocked me out ,then sent me home.I ended up back at the main e.r. on Sun. they did some blood work, a ct scan and they wanted to give me a shot of prednisone ( 125 mg.) but I talked them down to 80 mg. and also gave me 3 breathing treatments of albuteral sulfate. I was a space cadget when I left. I was supposed to see Dr. Hoffman on Monday but he went on vacation and referred me to Dr. Villa-Forte but her schedule is full so now I'm seeing a Dr.Khasnis. When I looked him up he knows vasculitis but does not say anything about Wegeners so I really don't want to go. I got a copy of my ct scan and all the report as well as all my blood work. It did show 2 out of the 4 nodules I had are gone and the others are 4 mm and 3mm so that's better than a few months ago But on Fri my bloodwork was fine and on Sun my glucose was 126 (a little high ) and my bun was at 20 ( has never been that high )so I'm wondering why the change in 3 days..could this be going to my kidneys ? My creatine was at 6 which is good.
The only thing really bothering me know is my sinuses draining into my throat but I go see my ent next week. Last nite I took a walk carrying two hand weights so my chest was a little sore today. I asked if it were neccessary if I still come up there and they said Dr. Hoffman wanted me to be seen but I think ( hope ) the worst is over. Anyone else going up there tomorrow ???

If your Creatine is good at 6, then I shouldn't worry about being at 5.??..¿¿¿

[Debbie C]

If your Creatine is good at 6, then I shouldn't worry about being at 5.??..¿¿¿

No, I'm sorry Barbara,mine is at 0.6. The range is between 0.5 - 1.1... So 6 is pretty high.Sorry for the mistake.Did you go see the kidney dr that your country doc. was setting you up with ? I never went to Cleveland today,since my ct scan came back good and my blood work was pretty good and my reg. doc. is on vacation I thought I would wait. My regular appt. is in Oct. so hope all stays well until then. I hope you get to a doc soon

[Barbara N]

No, I'm sorry Barbara,mine is at 0.6. The range is between 0.5 - 1.1... So 6 is pretty high.Sorry for the mistake.Did you go see the kidney dr that your country doc. was setting you up with ? I never went to Cleveland today,since my ct scan came back good and my blood work was pretty good and my reg. doc. is on vacation I thought I would wait. My regular appt. is in Oct. so hope all stays well until then. I hope you get to a doc soon

I was quite pleased when you said your creatine was at 6 but 0.6 makes my 5 look terrible. I have an appointment witha kidney specialist at the end of the month and my country doctor is taking all of the information I am sending him about medication and treatment and symptoms and we have translated them for him and he is sharing them with a specialist doctor friend that he has. He discovered both of my rare diseases and has taken a great interest in there development but he keeps in mind my desire to not be on meds if possible . I would make him Doctor of the year. I am feeling a bit better, the ribs are slowly healing but now I have lots of muscle and joint pain. I' sure I will get back to normal( whatever that is) and feel much better again soon. thanks, Bsrbara

[Debbie C]

Barbara,do you have to wait till the end of Aug? too bad you can't get in sooner,is there any way. I'm glad to hear you are starting to feel a little better. Are you able to ride yet ?

[Barbara N]

Barbara,do you have to wait till the end of Aug? too bad you can't get in sooner,is there any way. I'm glad to hear you are starting to feel a little better. Are you able to ride yet ?

Hi Debra, I feel much vbetter now but I had to go back on pred for 6 weeks to help clear up my problems. My ribs feel all better but I have to be careful. On top of all of this I got a hernia that almost ruptured but just as I was go to the hospital it went back inside. I am so glad I didn't have to have an operation. August is the earliest I can see the kidney specialist. The last on was a joke, she said well I guess it is in God's hands now. Some of these doctors that don't understand WG feel that the only thing left for me is is bed and medication until I pass away since they can't cure me. This doctor I am seeing is supposed to be really good. How are you holding up? I hope to start riding this week.

[Alysia]

Hi Debra, I feel much vbetter now but I had to go back on pred for 6 weeks to help clear up my problems. My ribs feel all better but I have to be careful. On top of all of this I got a hernia that almost ruptured but just as I was go to the hospital it went back inside. I am so glad I didn't have to have an operation. August is the earliest I can see the kidney specialist. The last on was a joke, she said well I guess it is in God's hands now. Some of these doctors that don't understand WG feel that the only thing left for me is is bed and medication until I pass away since they can't cure me. This doctor I am seeing is supposed to be really good. How are you holding up? I hope to start riding this week.

Hi Barabara,
don't give up finding a good doc that can help you.
I believe that experienced doc can do a lot for you.
of course we are all in the hands of God.
I hope you will soon ride your horse.