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Knee Infection* Three surgeries to clean out infection

@Maisybo Have you tried taking probiotics when you are on antibiotics? I don't have Chrone's but do have IBS, and the probiotics really do help me if I am on antibiotics. After my btkr in September I was prescribed antibiotics three different times for various stitch problems, and I am still taking the probiotics and dealing with minor colon difficulties, but would they ever be major problems without the probiotics. I don't have any input on Medicare, but I'm crossing my fingers for you and saying a prayer.
 
mlwreader - Thanks for the probiotics suggestion; I do take them. Since I had to take Bactrim orally for a year, both my Crohn's doctor & the infectious disease doctor told me I had to take probiotics because they were worried about me getting C-Dif.
The Nurse Practitioner at the new infectious disease doctor who's working on my case with Dr Maale also advised me to make sure I take probiotics, so am taking them.

Pumpkin - I talked to a Medicare representative & 2 independent insurance agents about changing from straight Medicare to Medicare Advantage & they all advised against changing to Medicare Advantage because I have to see so many specialists, & because most of my current specialists aren't in network with the Medicare Advantage plans available where I live; I think there are only 2 plans to choose from in the Lufkin area...
As far as Medicaid, I applied for it in 2014 & didn't qualify; again, I supposedly make too much money -- $17/month to be exact, at least that's what an insurance agent told me. Texas didn't expand the state Medicaid program when they had the opportunity when Obamacare went into effect.
I'm applying for Medicaid again, though, because if I could qualify for Medicaid, it would cover the amount Medicare doesn't pay for, or at least that's my understanding...I figure it doesn't hurt to try again. I don't understand how $17/month can keep me from qualifying for the help I desperately need, if that's really true...
It's extremely demoralizing & makes me feel like I don't matter; my needs don't matter.
 
Oh how dispiriting for you! And once Medicare and Medicaid stops as envisioned by the Trump administration? Where would THAT leave everyone?


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I’m so sorry to hear you’re having these problems because the IV antibiotics would be stronger than the oral. During my infection I took both, oral Rifampin and an IV antibiotic for 6 weeks. They did a real job on my stomach, but a good probiotic helped and now I’ve added daily yogurt to my diet. I’m wondering if someone at the Dr.’s office may be able to advise you on the best way around these issues. They usually have someone who just deals with insurances and may be able to help.
 
Hopefully you will be able to get the TX Medicaid as a secondary. I see a lot of Medicare with AZ AHCCCS (medicaid) as secondary with the disability patients. I am assuming you are getting SS disability?
 
PegGar16 - yes, I receive Social Security Disability benefits.
 
Hopefully TX has QMB or some buy in options for you. They may also have have an RX assistance program. You might also check with some of the companies for the medications they recommend. Some of these companies have assistance programs. You might also search for RX assistance programs on the net. I know these aren't a quick fix but maybe something to look into.
 
:cry:Latest update for Maisybo::sad:

I saw Dr Maale for my 2nd visit February 22; he very briefly went over my CT scans that show the lit up areas of my body that are inflammation/infection, & he said he is concerned my patella has infection & that it might have to be removed.

I've been having daily IV antibiotic infusions since Feb 12 of Rocephan & Daptomycin. I have to drive to the next town over, about 25 miles one way to have the infusion (the only way Medicare will cover IV antibiotics is if they're administered in a hospital or infusion clinic...). It's really taking a toll on me...I feel very tired after the infusions & it's hard to muster up enough energy to drive home. But I know it's crucial for me to get the antibiotics, so I'm doing it...

About possibly removing my patella; that absolutely terrifies me, because from everything I've read I won't be able to bend my leg frontwards, & I'll have to wear a brace all the time...I'm afraid I'm going to be even more handicapped than I am now, & I'm barely able to walk now with a walker. My right leg is my "stronger" leg; I've always favored it since the lawnmower accident when I was four years old that amputated 1/2 my left foot & my first 3 toes. I have major balance issues because of my amputation, so I've had to rely more on my right leg for 52 years of my life. My left knee is bone on bone & needs TKR, but that's way down the road; I can't think about TKR for it until my right knee is better. But my left knee is very stiff & really, really hurts; I'm afraid it's going to start buckling & making me fall. My right knee was so bad before my TKR that's what kept happening with it; it would just buckle & down I would go. And I'm afraid I won't be able to drive without a patella; I can drive just fine now, but I'm afraid I won't be able to drive if my patella has to be removed.

Dr Maale said he may go in & clean out all the infection but not take out the implant just yet; he would put a wound vac on my leg after cleaning it out & then do another surgery to remove the hardware later; he said it would depend on how the inside of my knee/leg looks that determines which course of action he takes. He told me revision surgery is much more complicated & painful than first time TKR, which I've read.

Surgery date is March 26 in Plano if all goes as planned.

I feel TERRIFIED, especially about the possibility of losing my patella. I understand if it has infection in it then it has to be removed, but I'm afraid I'm going to be so handicapped I won't be able to live alone & I'll have to go to a nursing home...I don't think I'd survive that, & not being allowed to have my little dog with me...I'm praying the IV antibiotics are helping clear up the infection, including in the patella.

Thanks for your support,

Maisybo
Lufkin, TX
 
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Maisybo said:
About possibly removing my patella; that absolutely terrifies me, because from everything I've read I won't be able to bend my leg frontwards, & I'll have to wear a brace all the time.
Click to expand...
Baloney! In the 90s, both of my patellas were removed. Neither knee has a kneecap and I'm doing just fine. I do just about everything a 'full-kneed' person can do. I can't do a deep squat, and don't want to anyway, so that's no big deal! In removing the patella, the patella tendon will have to be shortened, so that will have to heal after the surgery. If you read my recovery thread, you can see that my recovery was no different than anyone else's. Actually, without the kneecaps, I don't have to worry about kneecap pain or they not tracking properly, so I'm ahead of the game.

If yours has to be removed, don't sweat it, it's no big deal. You'll do just fine without it. The main thing I don't do is to get on my knees. It feels very strange and uncomfortable without kneecaps between the floor and the joint!

If you have any questions, please ask. I'll be more than happy to try and answer them for you.
Have a blessed day!
 
@Maisybo, talk a bit with sistersinhim. Visit her recovery thread and read about what she can do now. Her avatar is her with a bike that she rides. She’s lived the no-patella life.

You’re working with an excellent surgeon. Talk to him also about what will be possible for you post-surgery. If the surgery goes as planned, you will be much more able than you are right now. He’s wise to not promise what he will do until he sees what your knee looks like once he’s in there. He will do the best thing for you and your knee.

Please keep us updated. We are here to help in any way we can.
 
I am sorry you have to travel so far for infusions. I was able to do mine at home. I’m sure part of the reason you’re so tired is the traveling, but your body is working hard to fight the infection and heal. That’s taking a lot of energy also. I hope you’re able to rest throughout the day to give your body a bit of break.

Sistersinhim will know how to deal with no knee caps. To read her thread just tap on the blue underlined link in her post to you.
 
sistersinhim - I'd love to actually talk to you about your experience with no patellas.

Dr Maale told me he will have to remove tendons that are infected along with the infected tissue in my knee; he didn't specify if he'd have to remove the patella tendon. I don't think he'll know until he gets into my knee & opens everything up.

What if he does have to remove the patella tendon? Would I still be able to walk, etc? I can't kneel now; it hurts too bad, so that doesn't really bother me, since I can't do it anyway.

I've seen Dr Maale twice now, & each visit lasted about 5-7 minutes. I want to talk with him about the possibility of taking out my patella & the effect on me but his office is over 3 hours away & he only sees patients Tues & Thurs mornings. My sister has to take off work to drive me to my appointments with him.

I called his assistant & asked if it might be possible for me to have a short phone conversation with him or e-mail my questions, but the office manager said I'd have to make an appointment & come in, even after I explained how far away I live & how difficult it is for me to coordinate a trip to see him.

I was trying to talk to him when he was going out the exam room door at my appointment last week. I understand he's very busy, but I don't feel at peace with everything & I'd like to talk with him for just 5-10 minutes to make sure I understand possible outcomes & how I'll be affected.

sistersinhim, would you be willing to talk to me on the phone?

Thanks for everyone's responses & encouragement.

maisybo
 
I still have my patella tendons. Mine just had to be shortened to take up the slack from where the kneecaps used to be. I am certainly no expert by any means, but I think you need that tendon to walk. Let's ask @Josephine.

It is really a shame how busy these doctors are. They have to see some many patients in one day and everyone of us is squeezed into a small time frame.
 
Maisybo,
Call and ask to speak to his nurse, leave a message on the nurses voice mail and have them call you back if they are not available when you call.
Tell her what your concerns are about your patellar tendon, she should be able to pass on your concerns.

You can get along without your patella, you will need a patellar tendon to walk properly.
A hinged implant will take over the function of the rest of your tendons.
 
Maisybo said:
Dr Maale told me he will have to remove tendons that are infected along with the infected tissue in my knee; he didn't specify if he'd have to remove the patella tendon. What if he does have to remove the patella tendon? Would I still be able to walk
Click to expand...
Maisybo, you first need to know and understand how the knee is constructed so let me give you a little tutorial!

The patellar tendon is part of the quads structure and looks like this

You can see the big muscle at the top, the quadriceps tendon? Then there is the patella and below that the patellar tendon. This is the entire quads structure.

If the patella gets fractured and has to be removed, it leaves a big hole in the quads which has to be repaired with strong sutures, maybe even wire.

This muscle is a very important structure in the function of the leg as it is pivotal to almost every important move the leg makes: bending, straightening, weight bearing. So if - a very BIG if - any part of this muscle has to be removed, it has to be repaired as described before. So in short, he can't remove the patellar tendon or any part of it. Only the patella and that's not on the cards so far as I can see.

[Bonesmart.org] Three surgeries to clean out infection
 
@Maisybo, one patella tendon was sutured and the other knee had the patella tendon wired. If you go to my thread, you can see the wire on the right one. That's the one that's has the tkr. My OS said the wire was too embedded to remove it during my replacement, so it's still there. I was hoping it'd be gone, but he said it would cause too much damage to do so.
[Bonesmart.org] Three surgeries to clean out infection


With these two different shortening techniques, there is no difference in my knees' performance. If yours have to be removed, you'll have no problem because of it.
 
@Maisybo, how are you doing? Did you ever get to talk to Mr. Maale?
 
Dr Maale will only talk to me if I come to his office for an appointment, according to his assistant, & since I have to rely on my sister to take me, that's not going to happen before the surgery date because my sister is taking off 3 days to be with me for surgery & 2 days after. She only has a certain amount of time she can take off, & it's an all day trip from 7 am til 8 or 9 pm to see Dr Maale, so I'm not able to go see him before the surgery because I can't get to his office 300 miles away....

Maisybo
 
Maisybo,
Sorry you are not able to have you question answered over the phone.
I hope your question about the patella has been answered by both Josephine and Sistersinhim.
Be sure to arrive for your surgery with a list of questions to ask, before you sign the consent papers. Your sister should be with you during this time.
Do you have a surgery date yet?

Sending positive thoughts your way. :console2:
 
No, I still have lots of questions; hoping Dr Maale will answer them on surgery day.

Surgery is scheduled for March 26th in Plano, TX.
 
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