Bacterial meningitis sufferer

I am now home resting from a bout of bacterial meningitis. I was in the hospital for 8 days. They said if I hadn't come in the day I did I would have died the next day! Great news to hear! This happened after a few surgeries on my back which included putting in and taking out a spine pain pump. This was very hard for me because the pain pump had set me from from years of taking opiates and being in constant pain in my low back from a fall. Evidently my pump got infected and went into my spinal fluid. The drs said they had never seen such weird organisms before. I cried for days when I found out I was to lose my freedom from pain as I was feeling so good. I had a new kease on life. I could do things with my grandkids again! My husband and I could have a love life...then the meningitis showed up and tore my life apart. Well to say the least I am in the throws of trying to rest. To sleep. To eat. To keep from being utterly depressed. They said I could have another pain pump in 6 months to a year if it all goes well. I really want it to work out so badly. I have 7 beautiful grandchildren and now that I'm back on opiates again I can't do much plus recovery of a few months for the meningitis. I have my faith in God which keeps me positive and gives me hope. This is a beautiful community. We have nothing like this in the USA. Our medical system is much different here too. My surgeon is so wonderful and kind. He knew how much I'd gone through that he actually came by my house to take out my sutures from my surgery! Amazing huh!! Well this is all new to me so it has been a lot of help to hear your stories although I haven't heard any Bacterial Meningitis stories. Would love to hear your stories but sorry you are going through it. What kind of diets are you on? I suppose I can look that up. Blessings to you all. Cloudlover in KCMO USA

23 Replies

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  • Glad to know you are getting better. I did have bacterial meningitis about 26 years ago and made a good recovery but it was very scary at the time. I hope you find some relief for pain symptoms, sorba

  • Thanks for your kind words. I am doing quite well. I take opiates for my back pain and that seems to help any headaches I might have.God bless you!

  • I can't believe someone out there has a story so similar to mine! You are so blessed to have made it. I too had contracted BM from surgical implant. My implant was a spinal chord stimulator. As far as I know it hasn't happened to anyone else ever. None had ever been reported to the CDC. My bacteria was a "super bug". I had a difficult fight to live. Total recovery takes time. But you have done the hardest part. You survived!

  • Thanks so much. I also have a spine stimulator. It didn't seem to be touched. I'm so glad you are doing better. I do feel very tired and weak most of the time. My pain is helped from my back pain pills. They also told me they had never seen any organisms like mine. It has been a tough battle. I went home with 10 days of antibiotics through a PICC LINE. Now my husband who has Parkinsons just rest and take it easy. I wish the very best for you dear one.

  • Glad to hear you're improving! BM is a life changer for sure. I have found a wonderful neuro MD who has me on the right path I think. Most symptoms gradually improving but hearing. My otologist suggested low sodium diet which seems to help. I get down in the dumps once in awhile but less frequently since I have put it in God's hands!

  • So glad you are on the right path to healing. Yes Gods hands are the best ones to be in. I haven't quite felt the full effects of BM except for being weak and tired most of the time. Take care. Wish you the best.

  • You are fortunate to be alive! Take time to rest and heal from the meningitis. Are you still seeing an infectious disease doctor? Are you still on antibiotics for the meningitis? I live in Wichita, KS, only about 3 hours from you. Mine was caused from a ruptured eardrum, so I didn't have the surgery to contend with, although I did end up with a left frontal lobe abscess on my brain. You may find that you will have after effects. Some may be permanent. For me, it's some confusion, some balance issues, and frequent headaches. I now see a neurologist who is trying to get me on the right "cocktail" of meds to reduce the number of meningitis headaches.

  • God bless you. It is so very difficult to explain what were going through. I have never been so sick in all my life. I cane home with a PICC LINE and had to make bags of antibiotics for 10 days. Now I am pretty much on my own except for my surgeon who is my pain dr for my back. I feel kund of alone at times. My husband is a very big help. He has Parkinsons so we rest and work together on our situations. It took a lot out of him trying to come up to the hospital KUMED CENTER. It was an incredible experience. I had teams of drs round the clock working on me. Glad to hear you are getting help.Thanks for contacting me.

  • Keep up with this forum. Keep posting as to how you are feeling, especially if after effects pop up. This group was what allowed me to know I wasn't alone in what I was dealing with afterwards. Too many doctors are dismissive once our lives are saved. Hopefully, your symptoms will be minor and you can get the pain pump put back in quickly.

  • Thanks so much. I'm so glad I found you all. It is difficult trying to relate with those who haven't been there. I'm still very tiredand weak. My Dr wants me to do PT. I told him I wasn't quite ready! I can barely get dressed! My huband has Parkinsons and can only do so much. I had a horrible night last night. A lot of pain from my head on down. How are you doing? How manyside effects have you dealt with? God bless and take care.

  • My issues are mainly the headaches. Mainly. I also have mild confusion at times, with a heightened sense of anxiety. Gone are my days of being able to multitask. I have short term memory lapses. I really have to pay attention to conversations and sometimes take notes, or I forget what has been said. For a formerly detail oriented person, that's been tough. Balance has been an issue as well. I find myself falling down for no apparent reason. I can't walk a straight line to save my life. It's coming up on 2 years since I was diagnosed. Those are the after effects I still endure. The headaches are what bother me the most, affecting my quality of life.

  • I haven't been feeling well. Last week my daughter was taken to the ER and found she had lost half of her blood. They started giving her blood transfusions for over a week now and just stopped yesterday. She is at home to rest and see if her body will make its own blood. Its called ITP. Google it. Only 200thousand in USA get it. Anyway her husband just left her and 4 kids almost a year ago. Shes been trying to be super mom plus work full time. Now she is on total bed rest. I couldn't help her at all because of just having the BM so that upset me. Just been a weird time. I've started getting all the BM effects again. Fevers. Neck head spine pain. Nausea. My husband is freaking out. I told him I'll be ok. I see my dr Tuesday. If fevers go up. Mine has been 100.1. I'll go to ER if it hits 101 to 103. Please pray for me and my daughter and family. Bless you all. Cloudlover

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  • Oh my. The added anxiety and worry you have for your daughter is probably adding negatively to your own symptoms. I am so very sorry. I hope your doctor had some words of advice for you. What is the cause of your fever? Will be praying for you and your daughter. Keep us posted.

  • Hi SDJ. My dr is getting blood tests run. My daughter is doing 100% better. I'm still very fatigued with headaches and a lot of fubro pain because of how cold it is here. I can't wait for spring! I am very thankful to God for everthing and people like you. I'm not getting enough sleep at all. Just 1 to 2 hours gere and there. Very sleepy now. God bless you. Cloudlover

  • As you know, sleep is a MUST! Best wishes to you on resting well. Good news on your daughter!

  • Thanks for your input. Its been so cold here my pain went to the outer limits! So sleep is another challenge no matter what I take. I can't take Ambien anymore as I was sleep walking and making food. Etc! Crazy! This to shall pass. I'll let my dr know I need some more help. My diet isn't helping either. Nothing sounds good and my husband with Parkinsons is to tired most of the time. I just don't have an appetite at all so I drink protein drinks. I used to be such a health nut. Lots of exercise etc but since I fell and hurt my back in 2000 I haven't done much of anything. I have found a PT I am going back toin a month. My dr is setting up Uber to take and pick me up. Thanks again for your input and encouragement. Cloudlover

  • Thanks for your input. Its been so cold here my pain went to the outer limits! So sleep is another challenge no matter what I take. I can't take Ambien anymore as I was sleep walking and making food. Etc! Crazy! This to shall pass. I'll let my dr know I need some more help. My diet isn't helping either. Nothing sounds good and my husband with Parkinsons is to tired most of the time. I just don't have an appetite at all so I drink protein drinks. I used to be such a health nut. Lots of exercise etc but since I fell and hurt my back in 2000 I haven't done much of anything. I have found a PT I am going back toin a month. My dr is setting up Uber to take and pick me up. Thanks again for your input and encouragement. Cloudlover

  • I can relate to your story, I to had the pain pump in my back and developed bacterial meningitis...I'm 5 months out and still have issues from the meningitis as well as back in the pills!!!! I'm in Texas and not sure what the future holds! God is my rock, just trying to deal day to day!

  • Sorry to hear that. I'm truly leaning on God right now. My pain was so severe all night it was awfull. Dr. And I are trying to figure out what type of pain cocktail I need. Thanks for reaching out. God bkess you and may your symptoms subside quickly back to a decent lifestyle. God bless you!

  • Note new news above. Cloudlover

  • I'm 5 years out, well, ~5.5 years. I too had the PICC line for a while after discharge from the hospital.

    My neurologist said that the brain heals slowly. The most healing happens in the first six months and the next six months will have some healing and so on with nigible (spelling isn't a great thing anymore and autocorrect didn't like that word,so meh) healing in the fourth set of six months and then not really any noticeable changes after that.

    At first, I was gung ho and determined to get the most healing of the first six months, but I didn't realize that I had very little to do with the amount of healing. Sure, a brain and heart healthy diet is helpful, as is exercising, but beyond that I still have pain as a near constant companion and the other things like fatigue and exhaustion from showers weren't going to change with the food changes.

    However, I was wondering if I am at the best possible way now, and I can't get any worse, can I get better and if so, how much better can it get?

    So, I saw an ad for a brain injury rehab program and called to see if they could help me, they could do I scheduled a meeting for an evaluation. I saw the folks who were likely most helpful to me as well as the psychiatrist in charge of the program. It was a speech therapist, an occupational therapist (OT), and a physical therapist (PT). They all agreed that I can improve and that their program would help.

    I only went through the evaluation process in September of last year, and already have better stamina than before. I also listened to others and got a shower chair. I have had a hang up on needing one and have pushed back because I am not old enough or sick enough to have to use it. But that is just silly talk and my ego getting in the way of a great idea. Now I can shower with no need to rest for over 45 minutes to a few hours afterwards but can do it and get back to life again quicker.

    I don't want to upset you with the idea of most healing happens in the first two years. I at first was scared of what that meant if I was not able to do as before getting sick at the end of the time. Then I was angry to only get two years of healing, especially when I was getting to the end of the time. Then I was able to see that I was better than when I exited the hospital all those years ago and that I was not going through as much intensity of pain as often. I still get migraines multiple days of a week, and I still have pain and have to pace myself, but I'm not as tied up in the suffering from it. It is what it is and taking the abortive meds for the migraine starts a multi hour process that hopefully ends the current pain. I have learned to be patient with the pain and med process because I had no other choice other than crying and screaming all the time, so a zen me is nicer for me and beneficial for others too.

    So, your doctor wants you to go to physical therapy. What exactly is holding you back right now? There are volunteers who can drive you to appointments, and there are home health aides who can come into your house and help you get clean and dressed and also do some house keeping for your health and safety and it benefits your husband and grandchildren too. The home health aides are discrete and taught safe ways to assist with bathing and dressing other folks. You can request women or not as what would be best for you. PT and OT can also do home checks to help make your space as healthy for you as possible.

    I don't know what insurance you have or what your situation is. But if you are not able to work and you aren't, then you may be eligible for social security disability insurance. They take time to get the application approved, so if you want to do that, you should be ready for a patience game. Also, if you get SSDI, then you can be eligible for Medicare as well. In the meantime, your state department of health and human services has information about what programs you can access and Medicaid can be one of those. Also hospitals have to serve you regardless of ability to pay for them, so they have free care programs that you have to ask for. Usually when you get a bill is when you would call the patient accounting department and speak to someone about your situation and then they will send an application for their program.

    I'm telling you about all of these things because it's what I wish had been shared with me when I was first looking for answers and information.

  • Sorry I haven't replied. Have had a lot going on. If you read a few replies above I spoke about my daughtrer and whats going on with me. I do plan PT soon. Just waiting for better weather. I have great insurance. Medicare plus BC/BS. so everything gets paid for mostly. Thanks for all your information I truly appreciate it. I'm slow going right now. Itstaking all my energy just to write replies! You are all so sweet loving and caring. I have quite a few friends and family praying for me on FACEBOOK. Its great to see their loving responses. I pray your hard work does well for you. I will definitely check out on any help I can get. Your encouraging words are a HUGE help. Trust me. God bless you sweet lady. Cloudlover

  • PS Do you live in Maine? Also are you still able to knit? I've always wanted to but I think Crochet might be easier. I think I better start with PT first! Thanks again Cloudlover

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