Knee Infection* Three surgeries to clean out infection

[Maisybo]

I intended to ask if anyone is experienced with applying for & getting approved for Medicaid when one already has Medicare, or if anyone knows an organization that helps people?
I’ve been denied for Medicaid in the past because my income was supposedly “too high”, which is ludicrous!
The Case Workers at 3 of the hospitals where I was a patient all told me I should be able to receive approval for Medicaid because of the high amount of charges the 20% Medicare doesn’t pay is after all these surgeries & hospitalizations I’ve had to have — they’ve been medically necessary.
The copay for each hospital stay alone is over $1,300 (my hospitalization copay responsibility) & I was a patient at 5 hospitals from March to July.
The Social Workers all told me when someone requires thousands of dollars in surgeries & hospital stays Medicaid will help pay for what Medicare doesn’t.
If anybody can help me navigate trying to get approval for this, please let me know.
Thank you.

 

[arizonaone]

Oh maisybo I’m so sorry.

I can relate to much of your story- the surgeries, the spacer, the antibiotics and yes even the anemia. Although my PCP had diagnosed me with iron deficient anemia before my infection nightmare began he never properly treated me for it. So after my spacer surgery in July my hemoglobin tanked and my ID dr referred me to a hematologist who then gave me 2 iron Infusions. I remember being so tired I could hardly walk. And slept ALOT

I can also relate to the being rude thing. While I have always had a mouth when needed I tried never to be rude. Not this past Wednesday when my surgery was cancelled or yesterday when my surgery was delayed 3 hours. I was so done I didn’t really care about what I said or how someone took it.

I guess the actual reason for this post is is twofold:

We always tend to focus on how hard we think we have it. Until we read others stories Maisybo, I feel so badly for you. You have gone through so much. I have as well but nowhere near what you have. Kinda makes me appreciate what I did have a little more. For example, as much as I despised that spacer and having to use my pain in the butt walker 24/7 since July at least my OS put in an articulating one. Which meant I was able to bend my knee slightly Made all the difference in my being able to take care of my self

I also wanted to send my prayers and tell you my thoughts are with you. Remain strong$! You can go this!!

 

[Pumpkin]

Sending positive thoughts your way for tomorrows surgery.

Usually the social worker at the hospital can help you obtain Medicad, or at least refer you to someone who can help.

 

[sistersinhim]

I will ask @SusieShoes if she has any idea about the Medicaid qualifications. It certainly sounds like you should have no problem receiving it, but I am ignorant on the subject.

 

[arizonaone]

I believe that Medicaid guidelines are state specific. Especially since every state had the option to expand Medicaid if they wanted. FL did not but not sure about Texas.

I would google Texas Medicaid and you should find a list of requirements to qualify. You can, ( at least in FL) apply directly online.

As far as a dr not accepting Medicare- years ago when I was being treated for breast cancer my radiation oncologist was an out of network provider on my health plan. Therefore his reimbursement was significantly reduced. I couldn’t afford to make up the difference so I wrote him a letter. And do you know he agreed to accept wheat insurance paid and not a penny more from me.

The point is- sometimes you have to fight for what you need. He may have enough compassion to work with you in some way or not charge you. And I would call his office. Sometimes not every insurance plan they take is listed

 

[skigirl]

Maisybo, almost all hospital has an omnubudsman or someone in a similar position who intercedes for patients. But, the hospital social worker is the person who should help you with medicaid. You could make an appt with her as soon as you get there and just plain ask her to help you. I know that most of us are not religious these days, but there are chaplains at the hospital who will visit and listen to you and who can sometimes offer help. The chaplain at our hospital is a retired Episcopal priest, so she had some of us visiting people and bringing up flowers and homemade soups. Since you are there alone all day, you can at least request a visit from the chaplain and see if you like him or her. Of course you have the online friends at Bone Smart. My BS friends helped me a lot when I had to have a spacer exchange. I know too that there are hosptial volunteers who are often retired. I am sure that if you ask the social worker to request that some of the volunteers visit you, there would be people who would be glad to stop in for a chat at the end of their shift. Ask and you shall receive is my motto. I think that if you had a few people to speak with it would relieve the tediom and boredom of being in the hospital. I was in the hospital for three days and it was boring, so I do understand that part of the problem. One of the women from my grief group stopped by with six people magazines which were a real treat to read!

Think too of how lucky you have been---you have found doctors with the experience to save your leg. You trust them and they have been trustworthy in their care of you. If you have a big hospital bill, I am sure that the hospital will work with you to reduce it and to make a payment plan that is affordable for you. It is unfair that you were fired because of your illness, but that is not an unusual story in our country.

Although you cannot see your Houston friends can you Face Time them? it might make you feel better to see some familiar faces. Finally, throughout my husband's illness, our church was a source of strength to me and him. We were not overly religious---Episcopalians are will ing to accept people who lack faith. I regard the weekly service as a meditation for my week and it is a source of strength for me. But most of all, my church family helps me. I just delivered two dinners to a couple with a new baby myself. I was happy to help and they enjoyed the food as well. It is a connection to members of my community that I would not have without the membership in St. John the Baptist Episcopal church. helping others is a part of the church family. I know, there were years when i would not hear of going to church myself, so I am not in a position to judge. But when you need help----there is help there waiting for you.

 

[Maisybo]

My cultures show I have”klebsiella pneumoniae” & “enterococcus “. The infectious disease doctor has prescribed ampicillin IV every 6 hours, gentamicin IV for 1 hour 10 minutes & Tygacil 100 mg 1 hour infusion, & Rifampin 300 mg 2xdaily. I took an IV dose of Tygacil Saturday & it gave me severe nausea.

I don’t want to take all these antibiotics at the same time, but this is how the doctor wants to give them. I feel like I’m in the move “Groundhog Day”, but there’s no humor. I
I finally got a new knee & already have an infection in the incision. The doctors don’t think infection is in the new hardware but are treating me as if it is.

I’m beyond upset. The Infectious Disease doctor said we’ve got to treat the infection aggressively, which I understand, but the nausea it gave me was severe. Zofran didn’t help so I had to take Phenergen & it completely knocks me out on my butt for at least a day. Do I just soldier on through & deal with whatever side effects occur?

The doctors are keeping a close eye on my liver & kidneys, but I’m feeling terrified; there aren’t a lot of choices in antibiotics that will kill the infection.

Comments & advice, etc are welcomed.
Maisybo

 

[Jockette]

I’m so sorry this just goes on and on for you.

I’ll tag @Josephine for you.

 

[SusieShoes]

Do I just soldier on thru & deal with whatever side effects occur?
The doctors are keeping a close eye on my liver & kidneys, but I’m feeling terrified; there aren’t a lot of choices in antibiotics that will kill the infection.

I'm so sorry to hear you are dealing with these problems. The good news -- there is a silver lining -- is that your doctors believe the infection is in the incision and has not gotten into the knee and hardware.

Your strength has been tested and I'm sure you feel you're at the end of it, but if you can dig down and find a little more, please soldier on. Work with your medical team to tame the nausea and give you more comfort. Let them know you appreciate them and are doing all you can to make their treatment succeed. They want you to get better, too. That they are keeping a close eye on your organs is excellent. It sounds like you're in good hands!

Josephine will be along with medical insight.

Can you find ways to relax? To reduce your stress and have faith in your body's ability to cope? Stress can get in the way of healing, so anything you can do to make your life more normal and to rest and relax will be of great help to your healing. You can always come here to share or ask for suggestions! We're here to help.

 

[Josephine]

Sadly there is no way to treat such infections without adopting the 'all guns blazing' approach. It just has to be that way if they're to save your leg. Bit it's much better this way than not at all.

 

[arizonaone]

Awww maisybo. I feel so badly for you.

Skigirl is right about the fact that loosing your job isn't unusual in this country.

I was working for a law firm for almost a year .I was good at what I did and cleaned up the mess the last Paralegal left.

My boss was well aware of my knee issues and that I was going to need a TKR
As soon as I found out the date of my surgery I went into his office and told him. I asked if I'd be able to work from home for the weeks I'd be recovering ( this was not an unusual request as others in my office had and were working from home) So he told me not to worry, he would work with me and was going to think about it. ..

About 5 hours later, after he had left for the day the associate attorney called me into her office to tell me I was no longer needed at the firm.

He's a real coward .Couldn't even fire me personally.

At first I was really upset. Then I learned that he was starting to fire everyone one by one .Apparently this was his M O . He ran one screwed up office.

There was nothing I could do. FL is an at will state .An employee can be fired for any reason . As long as it's not against public policy. ie:'discrimination . Not sure what the laws are in Texas .

And it turned out to be for the best .With all of my issues there was no way I was ever going to be able to go back to work. That is one less thing I have to worry about .Has it been hard- yes. But I landed on my feet. And when I am able I will look for part time work.

Please just try to concentrate on getting better .As others have said ask for help . It is there.

And once you are healed and feeling better you, if you want, will find a .much better job .

Sending prayers your way .

 

[skigirl]

I relate to your suffering in a small way. I am taking quadruple therapy for H. pylori, a baterial infection of the stomach. I am nauseated whenever I take the meds and feel nauseated all day. I have started to fight back. I drink ginger tea which I ordered from Amazon Prince of Peace, a company that makes a lot of ginger products. You can ask the nurses to see if the pharmacy will send up ginger capsules to help you.

Most of all, I just try to remember that it is temporary. And it a drug knocks you out for the day---ask for it again!! Being knocked out is probably for the best right now anyway!!

At least you know that your doctors are doing their very best to help you now. You have to help them by allowing them to do their best.

 

[KarriB]

I’m so sorry! I took two different antibiotics during my infection (oral rifampin was one) but I don’t remember the IV antibiotic and to make matters worse I’m allergic to penicillin. I did get nauseous if I ate right before the IV antibiotics so had to time them appropriately. Also, see if you can take a good probiotic and eat yogurt every day to keep the good bacteria in your body. This helped my stomach, but at first I had to be close to a restroom at all times. I was on these for 6 weeks and did just suck it up, stayed at home and took the meds. It seems like forever, but it’s the only solution.

 

[arizonaone]

I know your going to think I'm crazy but when I was undergoing chemo years ago it made me really nauseous. Even the anti nausea medication they gave before didn't help at all.

But what did, surprisingly, were V8 juice and green olives with pimentos . It was all i could eat for days sometimes and it really settled my stomach for some strange reason.

Not sure if you are able to eat either of these things with your Crohn's but thought I would mention it. Anything is worth a try .

 

[sistersinhim]

I was able to eat or drink only protein drinks, mixed nuts and dark chocolate kisses. I normally love veggies and salads, but my body wanted nothing to do with them!

 

[Maisybo]

Thanks everyone.
Yesterday I took Compazine & had the nurse start the IV Tygacil in about 30 minutes.
The Infectious Disease Doctor also added Rifampin orally so I swallowed it & had the next IV antibiotic started.
I started feeling super nauseous before it was finished; I think it was Gentamicin.
The nurse gave me IV Zofran, which didn’t help. Then she gave me Phenergen in my IV, but it didn’t help either. I felt like I would die, & wanted to at that point. I felt extremely nauseous all day & most of the evening. I’m afraid to eat. I almost have diarrhea. I’m taking probiotics but I’m feeling sharp pains in my stomach like when I have a bowel obstruction. Thankfully I don’t have any obstruction, but the pain is very bad and it’s in addition to all the orthopedic pain I’m experiencing.....I’m trying not to give up but I’m very, very tired.
I’m trying some of your suggestions & appreciate all of them.
Thanks, Maisybo

 

[skigirl]

don't give up, think of Dylan Thomas, "rage, rage against the dying of the light." There is still live out there, after nausea, after the knee.

I relate to your situation, I am taking quadruple therapy for H.pylori and I am also nauseous all day. I eat crystalized ginger which helps and i do drink ginger tea. Can you order from Amazon? If not, I will order some for you. There are people who care about you in the world, so just keeping paging that nurse until she finds something that will help you.

 

[Jockette]

 

[Maisybo]

Skigirl, I can order from Amazon but payday from Uncle Sam is still too far away; they pay me on 2nd Wednesday each month, so when there’s a month like Nov it makes it 6 weeks or almost that long since last payday, which makes my life even more complicated and hard.
Please tell me the exact name of what you take & I’ll try to see if I can get some. Thanks for your support.

 

[Pumpkin]

Maisybo,
Kiefer is a good source for probiotics, it has 12 friendly types of bacteria vs 4 for yogurt.
Sending positive thoughts your way,