It's been awhile since I've posted. I truly just don't know what to feel anymore.... Right now I feel just numb. I will try & keep this short and would like any info or thoughts from all of you.
I'm 45 yrs old, very happily married w/2 great kids!
Hx of osteo & connective tissue disease for 13 yrs.
Havn't nelt down in 8 yrs on my knees.
Recently diagnosed in late May with Rheumatoid arthritis, Lupus(SLE), and diabetes. Yes, I have a very good Rheumy & ortho Dr's.
In April I hyper-extended my knee, would not heal (small dip in grass).
off work for 3 1/2 mo. During that time I had a scope, many aspirations, and 5 hyalgan treatments too...nothing worked & my knee only stayed the same & sometimes got worse. The scope brought bad news which is why it wouldn't heal. It has now been 5 mo since I injured it. The cartlidge is all shredded, virtually all is gone. I went back to work & within 5 wks the aspiration was all bloody fluid. Told it's completely bone on bone, but I was too young for a knee replacement. Was told to change proffessions & I would not be walking within 5 yrs cause my knees are so bad. He said not to worry we will get you fixed up....assuming he would go ahead with the replacement. Since June I've been on narcotic pain meds every 4 hours just to be able to walk. I struggle walking all day with pain & wearing the brace. I don't go anywhere or do anything, I come home & plop. My scope was end of June & he was hesitant with doing it...now I know why. He was just putting me through the motions.
They have been putting me off & never intended on giving me a knee replacement. Because I have Lupus he will not do a knee replacement of any kind. But he won't say that in those exact words. I'm being sent for aquatics for 6 wks, return to Rheumy for aggressive treatment for the Lupus & told to get off the narcotics. I explained they are whats keeping me walking & working & without them I can't walk across a room. Funny how the Dr can't be up front with me. I found out today from two other physicians that no surgeon will perform surgery on a Lupus patient. What treatments are available cause they don't have me on one? So, now I just wait....and worry.
Thanks a bunch for taking the time to listlen to my babbling.
__________________
~Roses~
*~* "Cherish every moment you share with your love, drink life every second you can, love like there will be no tomorrow!" *~*
I am so sorry for what you are going through. My mother had SLE very badly, and she was in your position a few years ago. She went through aquatic therapy and actually found it quite useful. Two years ago she had a bunch of rods and nails put into her spine because her medications deteriorated her bones. I do not know how old your kids are, but it was definitely hard to watch her go through that. But she fought like nothing I have ever seen, and I am sure your children are amazed by you just as I was with my mother.
You and your family are in my prayers. I hope that you do find somebody willing to operate so that you can have a better quality of life. There is no reason for someone so young to be in so much pain. Good luck to you =)
Did they give you a reason that they won't operate on someone with sle? Although I have never had oral surgery, I have heard of people with sle having that kind of surgery, and hysterectomies and being o.k.. Is the difference here because in your surgery they would be leaving artificial parts behind? I ask because long before I was Dx'd I tried to have my ears pierced (5 times to be exact). I had it done several different ways using several different types of earrings (nickle free, plastic, titanium,24 kt. gold, surgical steel) the reaction was always the same...My ears turned deep purple swelled horribly and had constant discharge, always migrating the earing out through the bottom of my earlobe. The last time I had it done, I was placed on antibiotics beforehand and was on Benadryl, same reaction. I also can't tolerate stitches, or i.v.'s I have the same swelling, redness etc.. Any how, if they are afraid of your body attacking the replacement parts, maybe that could be handled with anti-rejection meds., like people with organ transplants take? I hope they are able to come up with something soon, no one should have to suffer like you are . Best wishes.
I work in a Lg major hospital w/ a degree. I have access to the BEST Dr's available. I just had my 3rd opinion...they all agree. The surgery is too risky with the medical complications/conditions to have any kind of knee replacement. Could I find a Dr in my city to do it? Sure, but they would not be a respected Dr. for their expertise & they would cut on anyone for the old mighty $$$$. When you read everything about Lupus it is easy to understand their stance. Although I am very upset to think what my life would be like in a wheel chair in 5 yrs.
My kids are 17 & 22 yrs old & it hurts them to see me struggle so much at times. Before all this happened 5 mo ago I was thinking to myself, well it's time to start exercising & I was really gonna get about 40 pounds off. quit smoking. Then I felt I would be better than I ever was before...hahaha
With a total Knee replacement your leg is actually cut off twice (above & below the joint then replaced with metal, plastic & cement. You also have a 6-8 in wound. It's hard for a normal person to recover from this not to mention a person with a very long medical hx. Lupus causes your body white blood cells to attack all your good cells instead of the bad ones. Causing no healing, your body not only rejects your own tissue but also the replacement part.
I hope in time too something can be done. I agree this is too much for any one person to deal with.Thank you all so much for the prayers!
Take Care,
Roses
__________________
~Roses~
*~* "Cherish every moment you share with your love, drink life every second you can, love like there will be no tomorrow!" *~*
The question in one of the first posts was "Does Rheumie agree it is unsafe?" The answer is YES. I seeked out 2 opinions from orthopedic surgeons on my own without telling her...both said no KR for a very long time. I feel all the Dr's (ortho's & Rheumie) just dragged me along for the ride because they have a very hard time telling a patient...your life might as well be over.
My appt yesterday with one of them FINALLY came out & told me so. Saying my case was very rare, being someone who desperately needs a TKR & also having Lupus. Telling me how hard it was telling me know & how unfortunate it is that we as patients are bounced back & forth between Dr's because no one wants to tell you...the road ends. He told me they have a very hard time talking to a patient about their mortality. Why I ask myself? what I come up with is they want nothing to do with a patient "GIVING UP on life".....
I would like to know what other Dr's have to say in other area's. So if you all get a chance...ask your Dr's...for a friend.
Have a good day!
__________________
~Roses~
*~* "Cherish every moment you share with your love, drink life every second you can, love like there will be no tomorrow!" *~*
Dear Rose, For a person having the trials you have, I am in awe of your state of mind. Not sure I could post as nicely as you have. Being newly diagnosed with Lupus, I was shocked to learn that Drs will not do surgery. Never heard of a dr just refusing, and then not telling the patient why. My goodness, you have reason to be upset.
I have a good friend who is older than me (60 yrs old) with a history of polio, and she recently had the Synvisc injections in her knee as it was bone on bone. She is afraid of the knee replacement because all of her nerves are not normal, due to the polio. I will ask her to check with her orthopod--
if she remembers. She gets so nervous in the dr's office that she forgets to ask most of her own questions. If I lived closer to her, I would go with her to advocate for her...sometimes I wish we patients could have a whole group go with us so we would feel more confident. Bet the drs wouldn't appreciate that though!
I am so glad that you shared & I hope that you find a solution you can live with. God Bless you real good.
The question in one of the first posts was "Does Rheumie agree it is unsafe?" The answer is YES. I seeked out 2 opinions from orthopedic surgeons on my own without telling her...both said no KR for a very long time. I feel all the Dr's (ortho's & Rheumie) just dragged me along for the ride because they have a very hard time telling a patient...your life might as well be over.
My appt yesterday with one of them FINALLY came out & told me so. Saying my case was very rare, being someone who desperately needs a TKR & also having Lupus. Telling me how hard it was telling me know & how unfortunate it is that we as patients are bounced back & forth between Dr's because no one wants to tell you...the road ends. He told me they have a very hard time talking to a patient about their mortality. Why I ask myself? what I come up with is they want nothing to do with a patient "GIVING UP on life".....
I would like to know what other Dr's have to say in other area's. So if you all get a chance...ask your Dr's...for a friend.
Have a good day!
i hope that all will just keep your head up.
i have sle had it for15 yrs but know thing are getting real hard for,
me so you are not alone you are in my prey.
my God be with you.
I saw the Dr again last week & he could not look me in the eye when he told me they couldn't ethically or morally do a KR on me. Stating I would be 10x worse off by having one. His reasons were this: Long hx of osteo, connective tissue disease, now diagnosed with diabetes, Rheumatoid, & Lupus...past hx of sinus surgery & staph/mrsa 4 mo after. The sinus surgery was 1 1/2 yrs ago & still after testing negative I still have a bacterial infection every 6 wks & have to be on antibiotics. My ENT Dr is completely baffled & says he doesn't know why this is happening. The ortho's said all these medical issues stops the progress of healing & with a job where I'm walking all day the prostetic implant would loosen up in a short time causing the bones to splinter or break off while continueing the job that I'm doing.
I'm way past being upset over all this....I see my Rheumie next Wed & pray there is an aggressive treatment for the Lupus that will help with all this pain & suffering. I am way too young for this to happen too & I just want the Dr's to be up front, tell me what to expect, & be honest.
My prayers are with all of you dealing with your own illnesses.
__________________
~Roses~
*~* "Cherish every moment you share with your love, drink life every second you can, love like there will be no tomorrow!" *~*
Hi Rose, sorry to hear about all the you are going through. I too have had sinus surgery and face chronic infections that only respond to antibiotics. Once I'm off then it's a sure thing within just a few weeks another sinus infection will occur. It too baffles my ENT & he's admitted he'd probably have done surgery again but, since I'm on steriods he doesn't think it's a good idea. As for other surgeries I need to have corrective foot surgery & my surgeon has told me until I'm off the steroids he doesn't feel attempting a surgery would be good for me as I'm already very prone to infection & it could quickly morph into something far worse. Luckily both my ENT & poditrist have been very honest with me but, it's frustrating. There are many of my doctors that I know tire of constantly having to "deal" with my constant infections & the comments that I've overheard have amounted to, "...many doctors won't deal with Lupus patients as they require too much time with little results." They want to quick fix us & it's just not possible & for many doctors with egos they don't like it.
Have any of these doctors said under what circumstances they would be willing to do the surgery? IE clean blood counts including normal WBC ranges? Are you on steriods such as prednisone currently?
Again I just feel for you as I know how hard it must be not to be able to function at it's simpliest, walking pain free. But, don't give up. It's your life and you've come this far fighting - what a great example for your kids. Keep us posted on how things go.
They said under no circumstances will they do a TKR any time soon. I asked how long before you will consider it? He just shook his head no while looking at the floor. I asked do you still stand by your prognosis that I will not be walking at all in less than 5 yrs by what you found when you scoped my knee? He replied YES. So what do these Dr's know that I don't?????? He is even trying to help me get transferred to a smaller place to work within the same system. It does 1 /3 the business that the place that I'm in now does. So there I could do my full job (painfully still but on a smaller scale) but w/o restrictions of amount of walking. The bosses are fighting this change by the way. Bosses say I should work all areas or go on leave of absence..period.
Prednisone is a steroid & no the last time I was on prednisone was the first 2 wks of June. They are 2 of the best & most respected ortho's around as well as my Rheumie. I won't see her till Wed & then I want more answers. I was told last week by ortho's that it is real hard for them to discuss a person's mortality. Well, I told him it's even harder to live this so called life that I'm living...you don't have to suffer. They told me I was a rare case, try & decrease narcotic use & try aquatics for pain relief. For 4 months now PT was never suggested or warranted by them. Now all of a sudden that they will not do it, I feel like I'm being thrown to the dogs & to apease me saying try aquatics. All the cartlige in my knees are shredded (ortho's words) due to these hidious diseases & now they think aquatics is suddenly going to make me feel better???
I just feel like there is no hope for me to get any better. Was even told by ortho after my scope in June that the way I am now maybe the way it will be & worse to come? Ok, well that gives me a lot to think about...huh?
Thanks Suni for replying
__________________
~Roses~
*~* "Cherish every moment you share with your love, drink life every second you can, love like there will be no tomorrow!" *~*
I have a friend, who suffered from bone cancer in her legs during her mid 20's.
She had surgery and treatment (chemo) then later when she got pregnant it came back, she had more surgery etc.. Anyhow she was left with no cartilage in her knees, bone on bone, and severe damage to the bones left in her legs, so much that they can't do a joint replacement, the bones simply aren't strong enough. She was supposed to be in a wheel chair by her mid 30's.....she's pushing 50 now, and although she has two very large leg braces and a slight limp, and uses painkillers......she walks. She leads a somewhat normal life, she can get around the local supermarket (I'm sure leaning on the cart helps some), etc.. Granted she is not a speed demon, but she is mobile . I don't know that it will be the same for you, but, I don't know that it won't either. My point being, sometimes the Drs. don't know everything, in their science, there is no consideration of the human spirit, will, or Gods grace and healing. God Bless you in your struggle .
Your story of your friend was very interesting & it brought back memories of specific words that were said to me by my ortho. Thank you for taking the time to write.
I just recently in the last couple days kept going over & over in my mind the different things my ortho Dr DID say to me. Since I have been kinda concentrating on what they havn't said or havn't been telling me you know. I'm one of those types of people that even if I know something in my head - I want to hear it out loud. Anyway, I remember I was quite taken back when he told me they had to consider the effect it would have on me if my bones started to splinter or break off later after having a prostetic knee with all the walking I do in my job. Then amputations would be involved he said. Having autoimmune diseases such as Rheumatoid does cause your bones to weaken, causing osteoporosis. It all makes sense, that's why he said he will help me to get re-located at work to an easier site.
This is why it was so hard for him to talk to me at all regarding I'm just not a canadate for a TKR now or EVER...
I work with this ortho in the OR from time to time. He also told me once 2 wks ago...your smart, you know about a lot of this, or you will figure a lot of it out. I thought that was very odd at the time. Not realizing he couldn't bring himself to tell me everything.
I feel the truth or the exact precise reasons as to why they will not help me is real important, at least in the mind recovery department. So I can get past the "there's no hope syndrome" and try to prepare in my mind what the following years will be like.
I'm still living in the present about how to keep working, dealing with the pain while being on the most meds every 4 hrs that I can take, and trying to show a smile on my face to my family when really I want to scream. I suppose I should start back on the antidepressant I quit taking 1 1/2 wks ago!
__________________
~Roses~
*~* "Cherish every moment you share with your love, drink life every second you can, love like there will be no tomorrow!" *~*
I know this will probably be of no help , but I had my knee replacement, after charting out which month, over the last 3 years, I had the least problems, flare, or hypertension, It was April 2001. I have to say, in all honsety it was horribly painful, and and it hurt long after it should, and the scar tissue from the surgery caused a lot of pain. All I can say, and I am sure you have done this, but look into every possible outlet to help you with your knees. Im walking well still 4 yrs later, but it was not easy the first 6-8 months post-op, with physical therapy. I had shoes I wore in front of clients, and very light weight sneakers I wore the rest of the time, and I also carried a heating pad, that the back of my knees could rest on so they wouldn't get too cold , or stiff while I sat at the computer, and I also had a cane for when I had overdone my walking limit for the day. In 2000, I fell and hyperextended and dislocated my right knee. My bleesings and best wishes go out to you in this very stressful time. New things are coming up all the time, I hope they come up soon to help you.
. Best wishes.
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