ANA Discussion Forum
General Category => AN Issues => Topic started by: msmaggie on February 08, 2009, 11:12:49 am
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Hello to all this fine Sunday morning,
I can say it is fine because in Houston it is already 70 and should be even higher by the afternoon. For all of you in the frozen areas, I will think about you and try to soak up sun vicariously for you!
As I had mentioned in an earlier post, I had developed a "goose egg" of a CSF leak at the sight of my incision about 2-3 weeks ago. The decision was made to just watch and wait and hope that the leaky spot would continue to heal and close off by itself. The leak was initially accompanied by rotten migraine type headaches, and I got a lot of good advice on how to handle those from some of you. They only lasted for about 5 days and then tapered off to a high level of annoying daily but somewhat tolerable amount of pain if I stayed on OTC for 24/7. After 2 weeks of that I had had enough. The goose egg continued to grow and I was tired of living on OTC pain meds. I saw my dr. and asked for real pain medication. He agreed that the goose egg was indeed larger, prescribed Diamox and a pain med, but told me to hold off on the pain med until I had a lumbar puncture ASAP.
That was on Monday of this past week. I had the spinal done on Wed. morning and by lunchtime found myself back in the hospital because there were white blood cells in the spinal fluid- - -meningitis. As soon as I was in the room and safely ensconced in bed, I had my neurosurgeon, whom I had not seen since the surgery in Dec., my neurotologist, and a new dr,. an infectious disease specialist, all lined up to address my situation. They put me on IV therapy with the biggest, baddest antibiotics they had. Shoot first, ask questions later. The cultures needed to run for 48 hrs., so I stayed form Wed until Sat. The end result? Nothing showed up! It seems to be a sterile, or aseptic meningitis. They aren't really sure where this came from, except being related to the leak, and they really aren't sure what to do next. I am on IV therapy for a week, so my dining room is now the infirmary and after a visit from the home health care nurse, my patient husband and I are having bonding experiences over what connects to what and how do we prime the tubing and did I remember to swab the portals.
A bonus was that when they did the spinal tap, the goose egg completely drained, and we are praying fervently that the leak will be able to heal w/out the pressure building up behind it. Toward that end, I will have another tap done on Thurs.
I feel fine and am trying to be patient about IV treatments that take 2 1/2 hrs. twice daily. I am very grateful for pain free days and good medical care. God is giving me some one on one tutoring lessons on trust issues and He definitely has my attention this time around!! :D I am in this for the long haul and finally learning to roll with the punches a little better. I still think that if I wanted more adventure in my life, sky diving might have been easier. ;D
Priscilla
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I think this qualifies as something bigger than a bump in the road - more like a boulder, perhaps. :P
Your attitude through this is truly remarkable, Priscilla. I like your line about "one on one tutoring lessons on trust issues" - very diplomatic!
There is just nothing about what you are going through that sounds like any fun at all. You would think the meningitis would at least have the courtesy to be something, not aseptic sterile meningitis. What is that supposed to mean?
As far as I know, when they catch things like this, they are able to treat it, and in a few weeks, it will nothing but a memory. I hope you and your husband can hold up in the meantime. Take care and get well soon.
Steve
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Priscilla,
Your attitude is just the best. I hope your strange bout of meningitis is soon history and that your goose egg does not return.
All best,
Marci
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PRISCILLA,
HI, I AM SO SORRY TO HEAR ABOUT YOUR UNFORTUNATE SITUATION , BUT IT IS JUST A TEST OF FAITH AND ENDURANCE! ! BEEN THERE! 45 DAYS OF HOME HEALTH CARE AND IV MEDS THAT RUN FOR 2 TO 3 HOURS WILL SURELY TEACH YOU PATIENCE!! I HAD MRSA STAFF THREE DIFFERENT TIMES AFTER MY SURGERY THAT SENT ME BACK IN THE HOSPITAL FOR OVER A WEEK AT A TIME EACH TIME! NO FUN ! TOO TOP IT ALL OFF I WAS PUT IN ISOLATION WITH DR'S AND NURSES COMING IN WITH NOTHING BUT THEIR EYES EXPOSED AND THEY HAD GLASSES ON THEN.... LOOKING LIKE GHOST BUSTERS! NEVER WANT TO GO THROUGH THAT AGAIN, BUT THERES ALWAYS PUPOSE IN YOUR PAIN! ! AND TO TOP IT ALL OFF ANYONE THAT KNOWS I HAD IT, IS SCARED TO TOUCH ME EVEN NOW! ::)
I WAS ABLE TO TALK TO AND HELP MANY HURTING NURSES AND CARETAKERS THAT WAS GOING THROUGH REALLY DIFFICULT TIMES IN THEIR LIFE WHILE I WAS AT THE HOSPITAL EACH AND EVERY TIME, AS WELL AS MY HOME HEALTH CARE NURSES... SO NEEDLESS TO SAY THE PAIN I WENT THROUGH WAS NOT GREATER THAN THE STORY THAT SHINES THROUGH WITH GOD GETTING ALL THE GLORY!!
PRAYING FOR YOU,
TAMMI ;)
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What a great testimony!!! A good friend that had gone through surgery told me that it was all about the positive thinking... All of the things that happened to me just seemed to make me stronger. When I begin to worry I tell myself, Hey GOD got me through so why should I worry. Take Care and thanks for sharing....
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Priscilla:
I'm so sorry to learn of your latest physical challenges but you seem to be handling them well. Your perseverance is admirable and it's obvious that your faith in God is a major factor in helping you deal with these obstacles. The patience of your husband through these trials is also an encouraging manifestation of his affection and concern for you.
I trust the IV therapy will be successful and, in a few weeks, as Steve characterized it, the entire episode becomes a memory - and nothing more. Meanwhile your acceptance and trust in God's plan for you is very moving and a fine example of real trust in the Lord to all who know you, including those of us communicating with you on this forum.
I doubt you've been given these challenges to put more adventure in your life, Priscilla, but the fact that you can see the humor through pain and discomfort is commendable. You're one of those 'quiet heroes' we often refer to. You deal with your adversity in a way that not encourages others but shows us what forbearance based on trust in God looks like. Thank you for that.
Jim
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Priscilla~
my goodness! I did not want you to have to join the exclusive PICC club! Yes, there is definite marital bonding there! Just be glad you aren't trying to do all that infusing AND try to keep up with 3 little ones - & my oldest saying, "you're not coming to my game again?"(she didn't understand since I had/have ALWAYS gone to ALL of her activities!) Soon, you too will be PICC-less! I'll try to give you a call this week!!
K
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Priscilla,
What you went through was eerily similar to what I went through. I was put on Diamox and then ended up with a spinal and in the hospital for 4 days. Although, in my case, the primary doctor and the infectious disease doctor came to the conclusion that it was the Diamox that caused an allergic reaction.
Whatever the case for you, I'm glad you're feeling better and have a great attitude to boot! I never joined the exclusive PICC club, so you should be commended for that! What a bonding experience! ;)
Let us know if we can help in any way..
Regards,
Brian
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Hi Priscilla,
Sorry to hear you developed meningitis and had to join the PICC line club, but very glad to hear things are not quite as bad as they could have been. I'm also glad to hear your goose egg is gone. Just from an emtional standpoint, that has to be an improvement -- I hope it is gone for good. As for the rest, you have a wonderful attitude and that always helps anyone get through a difficult time. Here's hoping the spinal on Thursday shows only good news -- keep on being strong.
Sending wellness wishes your way,
Wendy
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Eeek, Priscilla - I didn't realize that you had joined the PICC club! Unfortunately, I remember it well. I will say, though, that I became very adept and even cavalier about administering my IVs after awhile. I had the very stylish lemon-shaped infusers - a veritable IV fashionista. Hang in there, it will get easier, I promise. I wish that you had been one of the many people who have a flawless recovery, but I guess that wasn't in your master plan. AT least you are in good company.
Sending you hugs and good thoughts,
Debbi
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Good Morning,
For me, it is easy to be patient when you know you are working with a timeline. Just have to get this done and then I can relax, etc. That is how I had been looking at this week of IV therapy. Just have to be tied down for a week and then I am free of this nonsense. My husband got up early every morning and got things set up and ready to go, and we had a working schedule. Never did manage to get the one antibiotic to go quicker than 3 hrs., but we laughed and said we would get it right by Sat. morning, the last morning of IV therapy.
And then I went for another lumbar puncture. The place was screamingly busy, and since I knew that they had worked me in around my IV schedule, I wasn't going to complain. After a very long wait, and I know they forgot about me because when they realized I had been waiting in the wings for 2 hrs. they started throwing parking and food vouchers at me (like anyone wants hospital food, free or otherwise?). Anyway, the end results were that my white cell count was definitely down, but not down enough, so I get to do this for another week. Poor Dr. Vrabec was the unlucky soul who got to tell me this , and he got tears from me as a result. I seem to have a streak in me that says I can do anything once, but don't ask me to do it again. :(
When I got home I threw a small pity party w/a limited guest list and moved on. I want to wake up every morning and choose to be happy, so pity doesn't usually make it through the night. After all, Mark and I can celebrate our small victory in getting the long IV down to its proper time frame! A very large margarita would have made me feel a lot better last night, but since I am taking in some really scary antibiotics, I will avoid that temptation so that I don't end up like some sort of mutation you would see on late night TV on the sci/fi channel :D. When I am all done, I will invite lpeople to celebrate w/me in a proper fashion that involves food and wine....in large quantities.
Life is still good and the sun shines every morning in Houston. At this particular moment in time, that works for me! But I am not counting on timelines to make it all better :D :D It is not my timeline that matters.
Priscilla
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Priscilla,
Bummer about another week, but at least the white count is down from the first lumbar puncture. You're right that it's not OUR timeline that matters. A positive attitude will help, so I'm glad to see that you're remaining positive.
About the vouchers, I've eaten at the cafeteria downstairs before. It's surprisingly good. In fact, we stayed and had lunch there after one of my visits to Dr Vrabec. It's not as bad as you think.
As your topic suggests, this is just another bump in the road..It too shall pass. As someone says, onward and upward.
Regards,
Brian
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Prisilla,
So sorry to hear about your "bump", keep up the good spirits and I admire your courage to stay strong. Will keep you in thoughts and prayers. Bell
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Darn, Priscilla, you are having to go through way more than was bargained for. You have such a wonderful attitude and I know that this too shall pass. You have just certainly been tested and I think , like Jobe, you are passing with flying colors. Good thoughts and prayers coming your way.
Hugs,
Brenda
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Aaaarrrr Miss Priscilla! What an ordeal! Welcome to the ranks of us wiv "complications". Now I didn't have no ickyhead complication like you are going through my dear,( I had 2 1/2 years of awful bed-ridden headaches instead--fun, huh?) I do however have some good advice for a body that's been filled with heavy antibiotics. When you are done with those you need to repopulate your digestive tract with probiotics. Culturelle is a good one as is Acidophilus and you can get both at a good health food store. It will restore your digestiv tract to a healthy balance as those drugs do kill off even the healthy bacteria in yer gut that helps you digest your food (yes they are there and no this isn't gross!)A good health food store will have a nutritionist on staff of you can research this online. Those powerful antibiotics really do a number on your digestive tract and the healthy bacteria needs to be repopulated when you are done. They are called "probiotics." Talk to the nutritionist and tell him or her what you've been through, they may have some good recommendations.
Be well,
Capt Deb
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Oh Priscilla, what a drag! Hopefully, this week will do the trick.
Best,
Marci
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Thanks to all for positive thoughts. I am swigging smoothies w/active cultures and drink lots of water. The vancomycin is hard on kidneys, so they tell me, so I keep a large cup of water with me at all times. I am definitely the hare in this race, but since we know he was the winner, I can hold out until this is done! I repeat this mantra multiple times a day, mind you.
Maybe we need to invent a medical position for all of us who have had craniotomies. Athletes have sports psychologists to keep them motivated. We need craniotomy psychologists to keep us encouraged and in balance w/all that is going on in our heads, physically and emotionally. Anyone care to name this much needed position? Craniotomy caregivers? Brain balancers?
Priscilla