Knee Infection* Three surgeries to clean out infection

[Josephine]

That's excellent! We had member who had a lot of treatment from Maale and recommended a few members to him directly. He's a very compassionate man and always ready to advise and help out. I actually met him in the UK myself a couple of years ago and found him very interesting to talk to.

 

[Jamie]

This is great. I'm happy that things are progressing in a positive way for you finally.

 

[Maisybo]

I called Dr Maale's office a little after 8 this morning to verify they received my records from my current orthopedic surgeon & infectious disease doctors. I was informed Belinda, the New Patient coordinator isn't in the office, yet. She's the person I spoke with last week about my dilemma.

I left a voicemail message for her & asked if it is possible for me to just go to one of the hospitals at which Dr Maale is on staff & be admitted thru the ER. I've been feeling really bad for several days; extremely tired & drained, my heart is beating much faster than usual; 110 beats per minute or right at 100. I also feel a little short of breath & dizzy. In my message I left, I said I'm concerned about developing sepsis, & I am; I know I have some of the symptoms now, which I said in my message.

It's 9:40 am here in Lufkin, now, so I plan to call Dr Maale's office back around 10 am if I haven't gotten a response. I know it's the Christmas holidays & there's a lot of people on vacation. I'll just talk to whomever answers the phone about my situation & hopefully they'll help me.

I did call my current orthopedic surgeon last Thursday to tell him what's going on, & he said the implant has to come out, which I know. I asked him if he thought it would be better if I went to a revision specialist, & he said no; he hadn't even heard of any specialists...I asked him how many infection revisions he's done & he said "not that many", but it "wasn't really that difficult", but he's done a lot of revisions for implants that have worn out.

If Dr Maale can't or won't see me within the next few days, I feel I will have no other option other than going back to my original orthopedic surgeon, & I feel very scared to do that. But I don't want to go into septic shock & die!

Any advice or ideas for convincing Dr Maale's new patient coordinator to expedite my visit or just have me go straight to one if his hospital's ER's is greatly appreciated.

I feel like I'm stuck between a rock & a hard place & I don't know what to do.
I don't feel it's safe for my health to wait any longer, considering how bad I feel.

Please help!

Maisybo/Dana

 

[sistersinhim]

This is sounding really serious. I will tag @Josephine and ask her what she thinks you should do.

 

[Josephine]

asked if it is possible for me to just go to one of the hospitals at which Dr Maale is on staff & be admitted through the ER

It's not always a good idea to lay down requirements when talking to a new doctor.

my heart is beating much faster than usual

That's anxiety.

I asked him if he thought it would be better if I went to a revision specialist, & he said no; he hadn't even heard of any specialists

Well he won't have! "Revision specialist" is a term we tend to use here on BoneSmart. It doesn't exist as a defined speciality.

I asked him how many infection revisions he's done & he said "not that many", but it "wasn't really that difficult", but he's done a lot of revisions for implants that have worn out.

Well he's wrong there. There is a world of difference between to two.

I feel like I'm stuck between a rock & a hard place & I don't know what to do. I don't feel it's safe for my health to wait any longer, considering how bad I feel.

Two or three days isn't going to make that much difference. If Dr Maale had thought there was any real urgency, he would have said so. And to be honest, I would think that having your knee opened and messed about with might cause an upsurge in the infection so it's 'possible' that it's better left alone.

But all your bad feeling and everything is mostly anxiety which I can fully understand. But it's just that now you've started the process of referral you want it done immediately and the anxiety is the result. So try to keep your cool and wait just another couple days until you can talk with Dr Maale again. You can trust his opinion on this, you really can.

 

[Jockette]

Hugs and prayers that things will go well for you!

 

[Jamie]

@Maisybo .... how are you doing this evening? I hope Jo's comments were at least some comfort to you. Were you able to get back with Dr. Maale's office this afternoon? Please do take Jo's advice and take a deep breath and let the process with Dr. Maale work it's way through. I agree with Jo that if he felt there was a potential problem, he would say so. Remember....unlike your current surgeon, he sees many, many problem cases.

 

[Maisybo]

It wasn't my intent to "lay down requirements to a new doctor" by asking if it might be possible for me to be admitted to one of the hospitals Dr Maale practices; I was asking this at the suggestion of Administrator Jamie, who posted this message in regard to my situation on December 19:

"Call immediately to talk to his office. If necessary, could you take a bus there and a cab to his hospital to check in to the ER?"

I spoke with the new patient coordinator this afternoon and asked if she thought it might be possible for me to check in to the ER at one of Dr Maale's hospitals because of this suggestion. Did I misunderstand?

She told me Dr Maale is out of the country for at least the next 2 weeks and that none of his hospitals are going to admit me and wait 2 weeks to be treated when Dr Maale returns.

The amount of pus draining from my knee has increased in volume and seems thicker. My knee is more red and swollen, too, and the skin feels very tight and painful. I relayed all this information to the new patient coordinator. She said I should go to my local ER.

Last Monday on December 18 I did go to my local ER, and the ER doctor advised me not to wait; but to seek immediate attention for my knee.

My current orthopedic surgeon told me on Thursday, December 21 that I "don't need to wait around" to get the infection taken care of.

So I was trying to convey my sense of urgency to Dr Maale's new patient coordinator. But Dr Maale can't see me until probably the 3rd week of January since he's out of the country.

I absolutely do feel anxious about my whole situation and don't feel I can safely wait 3 weeks to have something done.

I plan to call the revision specialist at Baylor School of Medicine tomorrow and see if he will see me. I'm already a patient with the gastroenterology and hematology departments at Baylor for Crohn's Disease, so maybe I can get in to see the orthopedic surgeon soon.

Thank you for the suggestions and support.

Maisybo

 

[sistersinhim]

I will tag @Josephine again. From what she said previously, you are probably OK to wait.

I pray you will find relief really quickly and that it's just a minor thing!

 

[Jamie]

@Maisybo .... you didn't misunderstand anything. You're doing a great job trying to get the help you need. It's unfortunate that Dr. Maale is not available for a couple of weeks and they told you correctly that under those circumstances, trying to go to the ER at his hospital wouldn't work. But I think you're doing the right thing by contacting Baylor. You should be okay there. I just didn't want you to use your local hospital and previous surgeon who seem very inexperienced in dealing with the possibility of an infection. Please let me know how your conversation goes with them. I agree with you that you need to be seen since things appear to be worsening with the drainage.

Would you consider going to the ER at Baylor then? That might be a good option if you can get there. You know, sometimes there are medical transportation services you could contact. They might be able to help you and it's possible your insurance might cover the cost of the transportation....you'd need to check on that first, though.

 

[Josephine]

Well, best of luck to you. I don't think anyone here would deny you are more than due for some good luck!

 

[Jamie]

@Maisybo ..... missing hearing an update from you. How are things going?

 

[Maisybo]

Long Update from Maisybo:
I saw Dr Maale Thurs, Jan 18. He will accept me as a new patient, thank God, and treat me! He examined my knee & said he wants to "calm it down" before any surgery because it's so red & swollen & still draining pus. He said it might be necessary for him to surgically open up the incision to let it drain more & put a wound vac on it, depending on what the infectious disease doctor thought.
He said once the infection is calmed down he will do one surgery to remove the implant, remove all the infected tissue & tendons, & put in a new knee replacement that he invented. He said he almost exclusively does one operation for infection cases like mine now.
But first he had his nurse take a bunch of blood & she swabbed my mouth for some kind of DNA test. Then he sent me over to the infectious disease doctor's office & I saw the Nurse Practitioner there -- they were so nice to let me go right over & see me Thursday without an official appointment since we had driven so far, & I really appreciated it.
She took more blood.
She told me from the sound of the last I&D operative notes that detailed "tunneling" thru my tissue down to the fascia that it sounded like my infection could be fungal.
She wants me to take oral Diflucan for the fungal infection & have a PICC line placed & start infusing some IV antibiotics; but not Vancomycin like I've done the past 3 infections. I think she said Rocephin & 2 others for IV & some different oral antibiotics than the Bactrim I've been taking twice daily for over a year -- their insurance coordinator has to verify my benefits with Medicare first & see what medications they'll cover & how much they'll cover. I hope they'll cover the medications they want to treat me with & there won't be a $2,000 co-pay for the IV meds or anything like that...worried...
I think Dr Maale said he wanted me to have the IV antibiotics & other medications prescribed by the infectious disease doctor for at least 2 weeks & then reevaluate.
My sister used her SUV's GPS on our drive to Dr Maale's office, & we got lost & I was 40 minutes late for my appointment; I kept having to call their office for directions! They were so nice & understanding & told me not to worry about being late, that he would make time to see me, & he did. I was so relieved & grateful because it took us 3 1/2 hours to drive from Lufkin to Plano.
I lived in Houston 25 years & learned to navigate my way around the freeways everywhere there, and this was after growing up in a town of less than 30,000, so I thought the traffic in Plano would be nothing & I could direct my sister right to Dr Maale's office. But the freeways up there are setup completely different than Houston freeways, & we had a really difficult time, and the GPS didn't give us the correct directions! Plus my sister isn't used to driving on big city freeways, & she doesn't drive aggressively enough to keep up with the traffic. But I can't complain -- she drove me all the way up there & back. We were worried there might still be some ice on the roads because Mon-Wed there was sleet & ice from Lufkin to Tyler in East Texas, but thankfully we didn't encounter any ice patches on the road. I'm very grateful to have a sister who loves & cares about me enough to drive me so far to the doctor. My knee really hurts, & I don't think I could've driven myself.
It was worth it, though! Especially since Dr Maale said he'll only have to do one surgery!
I was scheduled to have surgery in Houston Monday, Jan 22 with my original orthopedic doctor to remove the hardware & put in a spacer for six weeks or more, then have a second surgery to place a new implant. I called his office & told his nurse to cancel the surgery & briefly explained I got a second opinion & this surgeon does everything with one surgery.
I feel relieved & cautiously optimistic.
I told Dr Maale that Jamie & Jo from bonesmart.org told me I should see him!
Hopefully Medicare will cover the drugs they want to treat me with beforehand; I'm praying they will...
Thank you all for your care & concern, & I will do my best to post updates on how things are progressing.

Maisybo/Dana

 

[Pumpkin]

Maisybo,
Thank you the up date, happy to hear you saw Dr Maale and have a solid plan for your infection and revision.
You sister did a great job getting you there , many thanks to her. Next time you will know where you are going.
Keep us posted on how you are doing.

 

[Jockette]

So glad to read this update! Hugs and prayers for success!!!

 

[sistersinhim]

Things are really looking up for you now that you've seen Dr. Maale! Know that you have lots of people on here praying your your successful outcome! Keep letting us know how you're doing.

 

[KarriB]

So happy to hear from you and about your visit with Dr. Maale!

 

[Celle]

I'm so glad you saw Dr Maale and everyone was so nice and helpful there.
I'm confident that, between him and the ID doctor, you will receive the very best care.

 

[Maisybo]

Long update; ..
Of course nothing can be easy for me...
The IV antibiotics the infectious disease doctor wants to put me on would supposedly cost $10,000/week for my part; what Medicare Part D won't pay...they tried a different IV medication, & it would be $8,000/week for my part...of course both are out of the question. I checked into getting a Medicare Supplement Plan to help pay what Medicare doesn't, & the cheapest policy for me at age 56 is $1,056/month...again, out of the question.
So for now, I'm trying the oral antibiotic route. The Nurse Practitioner thinks I have a fungal infection in addition to whatever other infection I have, so she called in the following prescriptions:
Fluconazole (Diflucan) 200 mg - 1 tablet twice daily
Clindamycin HCL 300 mg capsules - 1 capsule every 8 hours
Levofloxacin (Levaquin) 750 mg - 1 tablet daily

I know in the past 4 years when I've had the previous infections in my knee & just took 1 oral antibiotic I got diarrhea; I have issues with diarrhea/loose stool because of having Crohn's Disease, so I'm feeling like there's no way I'm not going to have diarrhea with this arsenal of medication. The Nurse Practitioner is aware of the fact I have Crohn's Disease, so I'm hoping she took that into consideration.
I totally understand that oral antibiotics are the only alternative if the IV antibiotics cost thousands of dollars that I can't possibly afford. I wonder what other people who only have Medicare do to get the treatment they need? I've applied in the past for the so-called "extra help" from Medicare for help paying for my many prescriptions, but was denied. I supposedly make too much money, which is a joke. That's why I had to start buying my Entocort medication for Crohn's from a Canadian Pharmacy; they get it from India.
I'm not 100 per cent sure the IV medication falls under Part D, prescriptions. Last year when I was trying to start on Stelara via IV for Crohn's, Medicare Part D kept saying my part for each treatment would be $3,300, but after 7 months, I finally called Medicare & they said IV administered drugs fell under Part B, not Part D.
So I actually got my infusion & didn't have to pay $3,300; I didn't have to pay a penny when I went to the infusion center in a hospital & received the infusion. I believe my part ended up being $132.
I relayed all this to the NP at the infectious disease doctor's office, & we've both contacted the infusion lab in the hospital where I got my Stelara infusion & are waiting for them to see if I can get my antibiotic IV infusions there.
Meanwhile, since my knee still hurts & has pus draining, I'm going to take the oral antibiotics, or try to...
If anyone knows more about how Medicare works or if there are some kind of supplemental insurance policies that I can actually afford the premium for, please let me know.
I'm worn out from fighting at every turn to get the care I need. I worked almost 40 years of my life & never planned to get so sick I couldn't work anymore (does anyone?). I paid into the system with every paycheck, & never did I think I would have to struggle every day just to survive like I do to get medication & treatment to keep the diseases I have from progressing & either hospitalizing or killing me.
Thanks for reading.
Maisybo/Dana

 

[Pumpkin]

Hope you are covered through the infusion center for your medications.

Have you looked at Medicare Advantage plans? They often provide more comprehensive coverage, you will have to pay careful attention to what they offer.
Can you use Medicaid as your secondary?

@Jamie may be able to advise about Medicare.