Medical Forum / Diseases and Disorders / Arthritis / May 2006
Update & a question or two...
|
|
Thread rating:  |
Newsgroup Spambuster - 30 Apr 2006 09:08 GMT Hi Gang,
Well, just got home from the hospital yet again!!!
Had to go back in because I really never got back to my baseline from when I was in in late march. After a month of multiple rounds of antibiotics and jumps up in the steroids, I still was having troubles with my breathing and had multiple infections going on despite the continuous antibiotics. So, got readmitted for both IV antibiotics and IV steroids.
Had a sinus CT done, and as usual, my sinuses are a total mess and infected. Seems as though the constantly changing weather we are having here in michigan this year and the alergens in he air are really beating me down hard this spring!
Also had a nasty ear infection going on which ended up rupturing the eardrum. ENT says expect some hearing loss and will have to wait to see if eardrum will heal on its own or if surgery will be needed to repair it. In the mean time, the ear has developed a most annoying high pitched squeal that crops up intermittently throughout the day.
Chest x-ray showed beginnings of pneumonia, so am now home, but still on an additional 10 days of 2 different IV antibiotics. Each antibiotic is done 2x a day, so have a visiting nurse coming in to help with the IV stuff and a picc line in for now. The antibiotics are new ones to me, one is vancomycin and the other is cepheme. Anyone heard of either of these or had any experience with either of these?
Any of you have any experience with ruptured ear drums before??? If so, did yours heal on its own? Did you have the high pitched squealing at all? Did you experience any hearing loss, and if so, was it permanent or just temporary?
While I was in the hospital, my RD's office called and left me a message about the orencia. I am responsible for the first $1000.00 each year if I go with the orencia, wihich is a bit more than I can afford, so they also left me the number of a foundation to call that often helps people secure additional financial support for stuff like this. So, will not start the orencia until I can see if I can come up with some additional help in paying for it!
In the mean time, I am off of my enbrel yet again and my RA is NOT happy and letting me know it loud and clear, with my hands and wrists screaming the loudest!!!
In the big scheme of things, all of this is not really all that big of a deal, but I must say, I am a bit exhausted and a bit discouraged at this point. Sigh, I need a couple of strawberry margaritias!!! Pass the blender please.......LOL!!!
I'm so sorry that I haven't been around much or posting much, but please know, dear friends, that I sill think of all of you and pray for you all the time. Always praying that you all are doing better, finding your magic bullets, and living more productive, happy, & pain-free lives.
Blessings to each of you and continued prayers for many a pain-free day for all of you!!!
Hugs,
Donna G
spodosaurus - 30 Apr 2006 09:25 GMT > Also had a nasty ear infection going on which ended up rupturing the > eardrum. ENT says expect some hearing loss and will have to wait to > see if eardrum will heal on its own or if surgery will be needed to > repair it. In the mean time, the ear has developed a most annoying high > pitched squeal that crops up intermittently throughout the day.
> Any of you have any experience with ruptured ear drums before??? Yes, through violence though, not infection
> If > so, did yours heal on its own? yes, but it can still be problematic. No further ruptures, but I am EXTREMELY careful cleaning it, even after so many years.
> Did you have the high pitched squealing > at all? Loud noises cause static. Even loud conversations around me, say at a dinner party. If I join in the conversation with a raised voice, it happens faster. Watching terminator III in the theatre set it off a lot!
:-) It sounds like static from the radio and it's very unpleasant when it gets tripped.
> Did you experience any hearing loss, and if so, was it > permanent or just temporary? Only at one extreme, and it is just a dip in my normal curve. It is permanent, though it can only be detected using sophisticated testing.
The static sounds, though, get progressively worse each year.
Regards,
Ari
 Signature spammage trappage: remove the underscores to reply
I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/
DeeTee and Bob Taggart - 30 Apr 2006 11:35 GMT We have a friend in Maryland who has been in and out of the hospital, too, with the pneumonia and other associated breathing problems. She was just finally diagnosed with Legionaires Disease. YOU BE CAREFUL!! Make sure your doctors stay on top of this one, kiddo. We are going back to Maryland for a week this coming month to visit with her. As soon as she's out of the hospital this time, they're moving to Kentucky to get away from the high polution of the DC area they live in. I can't wait to see her even if I have to wear a mask to do it.
You take care of yourself, Donna.....we love you.
DeeTee
> Hi Gang, > [quoted text clipped - 58 lines] > > Donna G DianeW - 30 Apr 2006 20:48 GMT Donna - Major gentle hugs to you! You'ver really had a hard tie of late, haven't you? When I was in the hospital in Dec I was given both of those IV abx. They made me very nauseaus and I had to have an additional drug IV before they gave them. I had the vanco 4 times a day and the other 2 times a day. I think it was the vanco that caused the nausea because I had the cepheme.fir my sinus infection last year and it did not make me ill. Worked great on the infection tho. Just be glad you have a pic line because the vanco burns your veins bad! I had one dose and insisted on on pic line. They couldn't even touch my IV without it hurting. Not to mention that it's not so good on your veins general health. Vanco is hard on your kidneys. My kidney enzymes are still slightly (1 pt) elevated but the dr said it should return to normal in about a year.
Are you being treated by an ID or by an E & T? I was treated by and astute Infectious Disease doctor who tested my IGG levels to see if they were low. He said that people with low IGG are suseptable to upper respiratory problems and perhaps that was part of my problem too. I had tossed it up to years of steroids, Enbrel, etc and really didn't think he would find anything out of the ordinary. So when he asked, "Do you mind if we run some tests on your immune system?" I said, sure, why not? know full well they would come back normal or inconslusive like they had for every other doctor. He ran the standard lupus panel, etc with the addition of this IGG test. He also ran the IGA I believe. Surprise of Surprises, it came back low and I was diagnosed with Common Variable Immunodeficiency. http://www.primaryimmune.org/pubs/book_pats/e_ch03.pdf You can imagine after all these years how surprised I was that something finally showed up. There are 4 sub-classes of it and while most people are only deficient in 1 or 2, all four were low for me. One of the sub-classes cause your body to make auto-antibodies instead of fighting what they are supposed to. Wow. So as the ID said, the good news is that it is treatable with Intravenous Gamma Gobulin. Once a month IV's of IVIG were not enough to bring my numbers up so now I get it every three weeks. After 6 months my numbers were almost normal and I haven't had ANY URI issues in over a year. Apparently if you don't find out about it as a child, it usually shows up in your 50-60's when your immune system naturally slows down.
So, not that I want to wish another dx on you, you might want to check this out. My E & T was very negative about this whole idea when I went back to him after I was treated by the ID. I had been seeing him for two months before my rheumy sent me to the ID because I had the infections for 4 months and nothing was helping. When I first saw the E & T I had asked for IV abx and he pooh-poohed the idea saying that if I was on oral abx long enough it would work but guess what? We know what works and doesn't and oral abx just doen't cut it with me anymore. I couldn' t believe that faced with proof that the IV and IVIG had helped he stood there and told me it probably a coincidence. Some kinda ego.
Anyway...Hope you feel better soon. Cyberhugs-DianeW
vickie b. - 30 Apr 2006 22:36 GMT I've been told that I've lost both eardrums at least twice. But have no appreciable hearing loss. My son lost an eardrum due to infection at the age of four and it completely healed itself. He has no hearing loss.
The body is a wonderful living thing,
Vickie B.
Newsgroup Spambuster - 03 May 2006 08:29 GMT Ari and Vickie,
Thanks so much for both of your inputs on the ruptured ear drum issue. Your posts give me hope that things will take care of themselves and not leave me in too bad of shape.
Saw my pcp today and he said the ear looks soooooo much better, in terms of inflammation, then it did a week ago, so I am happy about that!
Hugs,
Donna G
Newsgroup Spambuster - 03 May 2006 08:38 GMT Diane W.,
thanks so much for all your input and information on the IV meds and the other stuff.
I initially did start off with a regular IV, and it went bad very quickly. In fact, the vanco infiltrated and burned like crazy. Now that area is as hard as a rock. It was the IV tech that insisted they put in a picc line with the IV meds I was on. I am thankful to him for pushing the issue.
I have had mild queasiness with the IV meds, but am haviing an incredible amount of fluid retention from the meds. My pcp said it is likely due to the potent antibiotics and the fact that I am on increased doses of steroids as well. I went from 1+ edema on saturday to 4+ edema by last night. Can't even get a pair of shoes on my feet because of the swelling. PCP is having me start lasix, 40 mg plus some potassium to cover me. Hopefully that will pull some of this fluid off of me! Can't wait to be done with all of this mess.
I see my lung doctor next week and plan to talk with him about the stuff you mentioned here. May even print off your post and take it with me to show him. I will push for the testing of the IGG and such. My pcp is also going to have me get some bloodwork done to check my kidney function status.
Will let you know if anything shows up.
Hope you are improving and doing better, as you sure have had a rough go of it as well.
Hugs,
Donna G
DianeW - 03 May 2006 19:38 GMT I'm glad to hear you are going to talk to your dr about the IGG. Hopefully, it's nothing but it caught me totally by surprise. I think the biggest surprise of all was that it was the ONE thing they hadn't ever tested me for before.
I swelled up like that as well. Had the lasix and potasium. What was supposed to be two days in the hospital turned into 3 weeks with all the complecations. Then my PT went way way up and I had to get plasma. Not a fun time. Hope you continue to improve. Keep us posted. Cyberhugs DiW
Nann Bell - 04 May 2006 13:00 GMT Ouch! Vanc is known for being rough on the veins at any time and having it infilitrate must be really nasty! Tahnk goodness the IV tech had the sense to push for a PICC.
Meanwhile, I hope you can get some rest between runs to the bathroom! With that kind of edema, the lasix may be keeping you up all night and all day. ;-)
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
> Diane W., > [quoted text clipped - 30 lines] > > Donna G Paul T. Holland - 01 May 2006 00:50 GMT orencia (abatacept) is not [afaik] included in the BMS foundation assistance program - but to find out for sure:
Pharmaceutical Company Bristol-Myers Squibb Company Program Name Bristol-Myers Squibb Patient Assistance Foundation Program Address PO Box 1058 Somerville, NJ 08876 Phone Number 800-736-0003
> Hi Gang, > [quoted text clipped - 58 lines] > > Donna G ladylove77 - 01 May 2006 01:44 GMT Donna, have they named that hospital for you yet? Surely they should by now! So sorry you are still going through all this hard stuff. Do pray the IV antibiotics will completely clear up all the infections and you will one day really feel good again. Surely hope you can get financial help for the orencia so you can try it; it just might be your magic bullet. Please take care of yourself as much as possible; we love you and miss you. Gwen
> Hi Gang, > [quoted text clipped - 58 lines] > > Donna G Newsgroup Spambuster - 03 May 2006 08:40 GMT LOLOLOL..............Gwen, I think I am financing the hospitals new wing they are building!
Thanks for the prayers and well wishes, the mean a lot to me!!!
Praying you are doing well also.
Donna G
Newsgroup Spambuster - 03 May 2006 08:42 GMT Thanks, Duckie and Alix for the hugs, can use all the hugs I can get.
Praying that you both are doing well and enjoying life!
Alix, how are things with you these days? Hows your partner doing?
Duckie, how's John doing these days? Have those two little fur babies of yours adjusted to their new surroundings? Are you dancing yet?
Donna G
Alix M. Hall - 04 May 2006 02:28 GMT Well, I am recovering from a flare which I precipitated by working way more than I am allowed to though brush fires that threatened my home on Easter Sunday and Monday helped out a bit!! But I am doing a little better--
Unfortunately, my erstwhile partner decided that I and Melbourne were too boring for her.....sigh.....so I am single and rather enjoying it!!
right now going through the end of the school year and my baby who is taller than I am is graduating from High School--she has been awarded a scholarship which will pay 75% of her tuition at a state school, had gotten into the college of her choice, got a superior with her choir at state competition and very wonderful comments about her solo--of the WOW variety--and was nominated for her performance in the school musical Aida for best female vocalist in a musical by the Cappies--Gala is Friday and we will see if she is the BIG WINNER!! then prom on the 12th and graduation on the 20th--then we all heave a gigantic sigh of relief!!
 Signature Love, Alix
Always remember, a cat looks down on man, a dog looks up to man, but a pig will look man right in the eye and see his equal". - Winston Churchill
> > Thanks, Duckie and Alix for the hugs, can use all the hugs I can get. [quoted text clipped - 7 lines] > > Donna G Harvey R. Stone - 04 May 2006 04:22 GMT Lots of positive stuff and good things happening to those that mean the most to you. Here is hoping that the flare goes away soon and you keep on keepen on. Harv
> Well, I am recovering from a flare which I precipitated by working way > more than I am allowed to though brush fires that threatened my home on [quoted text clipped - 13 lines] > we will see if she is the BIG WINNER!! then prom on the 12th and > graduation on the 20th--then we all heave a gigantic sigh of relief!! Squirrely - 11 May 2006 09:25 GMT Alix,
I hope you are doing better. I hope those fires I am hearing about are not close to you again. Know you are in my thoughts.
Take care and lots of hugs to you.
 Signature Love and hugs Jo
(\__/) .~ ~. )) /O O ./ .' {O__, \ { / . . ) \ |-| '-' \ } )) Warning: squirrels. .( _( )_.' '---.~_ _ _&
> Well, I am recovering from a flare which I precipitated by working way > more than I am allowed to though brush fires that threatened my home on [quoted text clipped - 13 lines] > we will see if she is the BIG WINNER!! then prom on the 12th and > graduation on the 20th--then we all heave a gigantic sigh of relief!! Alix M. Hall - 11 May 2006 12:27 GMT The current crop of fires is north of me by 15 miles--close enough that the air quality is smoky and my asthma does not like it--but since we already had a burn, it won't burn again--nothing left to burn--thank you for the loving thoughts Squirrely--hope you are feeling better too---
 Signature Love, Alix
Always remember, a cat looks down on man, a dog looks up to man, but a pig will look man right in the eye and see his equal". - Winston Churchill
> Alix, > [quoted text clipped - 20 lines] >> we will see if she is the BIG WINNER!! then prom on the 12th and >> graduation on the 20th--then we all heave a gigantic sigh of relief!! Nann Bell - 11 May 2006 16:47 GMT > The current crop of fires is north of me by 15 miles--close enough that the > air quality is smoky and my asthma does not like it--but since we already > had a burn, it won't burn again--nothing left to burn--thank you for the > loving thoughts Squirrely--hope you are feeling better too--- ahhh, I've been worrying about the state since hearing how the fires are kicking up again. Rainy season is still a ways off, too. I'll never forget the fires of '98 down there - grim. We finally got rain up here the last couple of days to save us from several weeks of extreme fire danger. I'll try to blow some of it down to Florida now.
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
Duckie - 04 May 2006 10:02 GMT John has found paddling friends and work is going well so he is happy. Just been handed the San Antonio hospital and is popping off to TX every now and again. Fur babies are happy and love the sunshine. The especially love the carpeted stairs to John's office. They never had wall to wall before. It allows them to lie on their backs and slide head first down the steps in slow motion. Pretty funny. I am dancing and my lesson is tomorrow. Do a tiny spotlight with Kevin on a Sunday in May [19? is that a Sunday]. All of 45 seconds long but it will be my first time in front of this crowd. He said something about making my skirt move. I have dance costumes and pants. I don't have skirts. Been digging in my closet and found one I made which is nice but the top is missing going on me by several inches. Managed to find extra cloth in a drawer and I am in the process of attempting to sew something to go with that skirt. lol You get better in a hurray. Hopefully, the doctors will find something in the tests which will help set you right again. Duckie
> Thanks, Duckie and Alix for the hugs, can use all the hugs I can get. > [quoted text clipped - 6 lines] > > Donna G Duckie - 01 May 2006 06:55 GMT {{{{{{{{{{{{{{{{{{Donna}}}}}}}}}}}}}}}}} Duckie
> Hi Gang, > [quoted text clipped - 58 lines] > > Donna G Alix M. Hall - 02 May 2006 02:11 GMT ditto Duckies hugs--no words--just gentle loving hugs and positive energy winging your way
 Signature Love, Alix
Always remember, a cat looks down on man, a dog looks up to man, but a pig will look man right in the eye and see his equal". - Winston Churchill
> {{{{{{{{{{{{{{{{{{Donna}}}}}}}}}}}}}}}}} > Duckie [quoted text clipped - 61 lines] >> >> Donna G Newsgroup Spambuster - 03 May 2006 08:24 GMT Yikes, DeeTee, sure hope your friend is going to be ok. Scary stuff!
My doctors are working very hard to gain better control of all of these infections and such, so hopefully we are at the tail end of this mess.
BTW, what's the latest on your house search situation?
Hugs to you and Bob!
Donna G
Newsgroup Spambuster - 03 May 2006 08:26 GMT Paul,
The foundation that my RD's office told me to contact is called the Healthwell foundation. I don't really know much else about them, but need to get a call into them to find out if they will be able to help me with financing for the orencia. I am hopeful!
How are you and Susie doing these days?
Hugs,
Donna G
Donna G. - 05 May 2006 18:01 GMT Paul,
The foundation that my RD's office told me to contact is called the Healthwell foundation. I don't really know much else about them, but need to get a call into them to find out if they will be able to help me with financing for the orencia. I am hopeful!
Are you familiar with this foundation at all?
How are you and Susie doing these days? Hugs, Donna G
Donna G. . . . ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS......
Paul T. Holland - 05 May 2006 23:02 GMT hey there!
yup - they're just up the road from me. the foundation treasurer, Jerri Scarzella, works at holy cross hospital, and the vp, Nancy Carteon is a Rheumy out in california
for those that don't know of it, The HealthWell Foundation can be seen at:
www.healthwellfoundation.org
NOTE: the patient must receive treatment dispensed in the United States.
The HealthWell Foundation P.O. Box 4133 Gaithersburg, MD 20878 info@healthwellfoundation.org 1-800-675-8416 9:30 am to 5:00 pm EST Monday through Friday Fax: (800) 282-7692
from the time they get the filled out application form [can be done on website], To begin the application process, please have the following information available:
* Patient demographic information (name, address, telephone number, social security number, date of birth) * Patient insurance information (i.e., insurance card(s)) * Patient income information (total household income, total household size) * Prescribing/treating physician information (name, address, telephone number, contact name if appropriate)
you can also apply by mail, takes a bit longer...
it takes at least a week and a half to get a decision. - if approved, it is good for one year.
this is not a 'huge' outfit, so money can run out for any given fiscal year, so sometimes someone is qualified, but they don't have enough money for an entire year, to approve it.
"The HealthWell Foundation reserves the right to change its program in its entirety or with respect to any applicant at any time with or without notice."
but they also get new monies throughout the year, so you 'can' go back
i'm doing better, not there yet, but better. susie is all atwitter - going to portland for mom's day and will be seeing new grandbaby Penelope for first time...
be well
paul
> Paul, > [quoted text clipped - 8 lines] > > Donna G Adelle - 03 May 2006 16:13 GMT No wisdom, just hugs. As many as you want.
Do you have any Lemon Zinger Tea (a Celestial Seasonings product)? Good diuretic.
Adelle
> Hi Gang, > [quoted text clipped - 58 lines] > > Donna G Nann Bell - 04 May 2006 13:00 GMT ((((((((((((((((((((Donna)))))))))))))))))))))))
My sister has had both eardrums pop from ear infections, though at different times. No permanent hearing loss either time, she healed up just fine.
I remember one of them popped overnight after Mother had to take her to the ER the night before for pain medication until the ear infection meds kicked in because the infection was so very painful. It was a major relief to her when it popped.
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
Squirrely - 11 May 2006 09:25 GMT Donna,
I hope you stay home from the hospital this time. I am always thinking of you. I sure hope you are getting well this time and healing right up with all and that you are headed to the great road ahead.
I hope you will be able to get the med.
Here come some strawberry margaritias just for you. With a side of choc. too. Take care sweetie.
 Signature Love and hugs Jo
(\__/) .~ ~. )) /O O ./ .' {O__, \ { / . . ) \ |-| '-' \ } )) Warning: squirrels. .( _( )_.' '---.~_ _ _&
> Hi Gang, > [quoted text clipped - 58 lines] > > Donna G
|
|
|