ANA Discussion Forum
General Category => AN Issues => Topic started by: Kathy M on December 11, 2009, 07:49:25 pm
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I am so frustrated! After 3 surgeries, a PICC line in February, mega oral antibiotics, wound debriedment (?), and lastly a titanium plate, the wound started to open up and the nastiness ensued a few weeks before Thanksgiving. My neurosurgeon's office called yesterday and said that the culture is an exact match of the February staph infection. I'm not on mega doses of Augmentin and am awaiting the 2nd test results to tell us what specific antibiotic address this type of staph. I am so over it, I can not begin to tell ya.
So, today was the breast biopsy and next Tuesday will hear the results of this next hurdle. I never was a track and field player, but I feel like I should get some kind of trophy for hurdles jumped in a given year!! I fully intend to keep leaping over them and not let them knock me down, but geez, I kinda tired of all this......
A few good things - 2 days after my antibiotics started, I was fever free and feeling pretty darn good! My husband's family from Kentucky (all 14 of them) come to our house tomorrow for an early Christmas and I love them all dearly, so that will be a wonderful distraction. They all came to Cincinnati the night before my original surgery in January...we played games til the wee hours of the morning, and they stayed with my husband and kids until I was finally in recovery. Never dreamed that almost a year later, we would still be talking about my health issues, but it's not like I've got much of a choice here, right?
Have any of you heard of this stubborn staph infection that just won't go away? How can it not be detected in multiple blood tests over the past months? I don't read much about infection on this site - and from me to all of you, I'm glad most of you don't have this to contend with...but any experiences with this crap over this long period of time that might be informative would be appreciated - kinda feeling a little bit alone here.
Frustrated in Ohio,
Kathy
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Hello Kathy,
I am so sorry for all the problems you have had and continue with and I will be praying for your relief of all of it so you may go on and enjoy life again! Your spirit is strong and you will get through it, just wanted you to know that we care and you are not alone in this journey! Sending my very best for a quick solution, so you can enjoy your loved ones!
Prayers have begun,
Jackie
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My prayers are with you, you have gone through so much in a year I wish I had an answer for the staph infection but the internet has so much information I hope you find a site or maybe some of the nurses on the AN forum may be able to help you and now you also have to deal with the breast biopsy ! Thank goodness family is coming to help you and also help to keep your mind off things which I can imagine will still be very difficult for you. Please keep us posted there will be more replies to your post and also more prays.
My thoughts and prayers again are with you,
Pat
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Hi Kathy,
I am a newbie and completely understand your frustration with the hurdles in 2009. In June my husband and I moved in with my in-laws to save money to buy a home and 2 days after we moved in, my mother in-law died unexpectedly from a heart attack. In July, my husband decided that he wanted a separation. In August, I found out my father has lung cancer. Lastly, in October I was diagnosed with a freakin' brain tumor! Really? Are you kidding me? I feel ya.
But....while we may not be earning a trophy, we sure are showing our kids how to make lemonade when you're handed lemons! I focus all the negative energy and get down on the floor and play with my 20 month old daughter until we both laugh til it hurts!
You are blessed to have your family there with you during this journey (that seems to never end...lol). Live in the present and the rest will fall into place.
Best wishes and my prayers are with you.
Sophia
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http://kidshealth.org/teen/infections/bacterial_viral/staph.html (http://kidshealth.org/teen/infections/bacterial_viral/staph.html)
try looking here for some answers. We all have staph on our bodies, all the time. Unfortunately with a serious wound such as yours, it becomes harder to avoid infections from such an abundant flora supply.
I feel for you. This must be just so frustrating for you.
Nikki
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Kathy -
this is so unbelieveable after all you've been through :(
I hope they find a solution to this problem soon and you can get on with other things.
We're thinking of you and praying that this infection will be gone fast.
Enjoy your early Christmas.
Best,
Jan
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Kathy,
I can't believe it! You definitely deserve some sort of large award for all you've been through this year!
Did the doctor give you anything topical to put on the area? I know bactroban works well on some of the tougher forms of staph in addition to the antibiotics. I don't know if you have any open areas though and I'm not sure you could use it on an open area. You'd have to check with the doctor on that one. I'm not well versed on "skin things" as they are not my favorite thing to deal with. (yes, even nurses can be squeamish about some things!).
I don't really have any other advice. Have you seen anyone other than your neuro? Like maybe an infectious disease doc?
I hope this round of antiobiotics takes care of it for you and that next year is smooth sailing for you. Sounds like you've been through enough to last a lifetime!
Lori
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Hi Kathy,
So sorry to hear that you are having trouble...please know that I've said a prayer for your healing and will continue to pray for you! You will be in my thoughts :)
Bren~
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Kathy ~
If anyone has a right to be weary, it's you! I'm so sorry to learn of this latest infection you're dealing with, along with your other health issues. You certainly have our collective sympathy, virtual hugs and good vibes along with the prayers of many. I hope your family Christmas celebrations are both fun and comforting. You sure deserve a respite.
Jim
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Kathy, sorry I can't help with the staph infection. You've definitely had more than your fair share to deal with in the last year or so. You have proven however that you can handle and overcome tough circumstances. I'll be praying that continue to come out on top of these medical issues. Have a great Christmas with family.
Patrick
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Kathy .....
I am so sorry you are having such an awful time with the staph infections. They can be miserable things to get rid of sometimes. First thought I had was: is there a wound clinic nearby? This is really a specialized field that often can work wonders with resistant infections.
Donnalynn ..... I have a friend who has total faith in colloidal silver. He has severe and deforming rheumatoid arthritis and has great difficulty with sores healing. My father was a proponent of the healing qualities of honey, as well. (Must be a northern thing! :D)
Kathy, I hope and pray that you will have relief from all of this soon!
Clarice
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Kathy, I am so sorry you are having to deal with this again! I know staph infections can be very stubborn and hard to get rid of, but this is ridiculous. You most certainly qualify for sainthood, but I am very sure you would rather be just normal and healthy. My prayers go out to you.
Priscilla
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I will take the blame for this, I haven't sent you a hat. :-[
Keep munching on those antibiotics like they were candy, this staph deal needs to go. And infection or not, 'tis the season to be jolly, so try to keep smiling. ;)
Steve
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Kathy my friend,
I'm so sorry that the infection is back. You've definitely been through the wringer this year!! Now, that's enough already.
I pray the latest round of antibiotics do the trick.
Let me know if you need anything.
Regards,
Brian
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Am sending you lots of good wishes...hope this clears up and FAST...
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Kathy, I hope you got my PM. I did ask my one nurse friend about her take on this and she did say to take acidophillus pills for boosting the immune system and garlic pills for against infection. This is up to you and feel welcome to ask your dr if interested.
I have not had a chance to talk to my wound clinic friend.
I wish you well and over this for good soon! Cheryl R
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How can I thank you all for responding to my post - my family all headed back to Kentucky and I couldn't believe 16 posts from you were waiting....I am so lucky to have such a wonderful group of people to count on. The family weekend was just what I needed and now it's time to get ready for work, try to remain in a relatively good space until I hear something about the biopsy on Tuesday morning. I should also hear from the neurosurgeon's office on Monday to tell me if I need to switch antibiotics or stay the course with what I'm on.
As soon as I hit "send", I'm going to begin studying all of the wonderful suggestions you have sent me. Truly I can't thank you enough for always being there. I'll keep you posted. Til then, much love as always, and enjoy the season.
....and Steve, you made me laugh out loud - how nice of you to take the blame!!! You are the very first person to do that!!!
Kathy
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Well, I was going to say it was all Steve's fault, but I didn't want to point fingers or anything.... :D
Lori
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Speaking of Steve, just where are you on his hat list, Kathy ???
The weather is getting colder. You need something nice and warm to put on your head ;)
Jan
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Kathy, first off I am so sorry you are going thru all of this stuff. I had three surgeries (AN removal, two csf leaks and a couple of eye surgeries), had mennigitis, pic line and a lumbar drain. When I got mennigitis they brought in a Disease Control Dr. Do you have one that you are working with for this latest infection? Also, have they said if you have Myrsa? Do you currently have a fever?
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I have no idea where on the hat list I am....I've never requested one - just enjoyed watching all of you guys modeling yours and getting very jealous!! Purple is my favorite color, by the way!!!
And, I'm headed out tonight in search of acidophillus and Colloidal sliver. Coincidentally, last spring, Dr. Pensak (my neurotologist) presribed something in an ointment form that accelerated healing because during a routine visit post op #1, he said it looked too pink for his liking. He said that this was used also by burn patients. It started with the word "silver" but I don't remember the rest...hmmmmm....
I contacted the Ohio State University Medical Center this morning in search of a dept with specialty in recurring staph infections. They sent me to the Infectious Disease dept and they are contacting my peeps in Cincinnati for referral information. The nice woman on the phone says it will be 4-5 weeks for an appt, so in the meantime, I'll keep on researching and working with my neurosurgeon, and alternative remedies. However, I will not agree to another surgery without some additional opinions. I am really beginning to feel lousy (no fever), and this nastiness on my head is getting nastier and nastier - words can not describe my frustration!!!
I'll keep you all posted!!! I love each and every one of you!!!
Kathy
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Hey Kathy.
Just finished reading about your recurring staph infection. I am so sorry that your are still dealing with this. Hopefully one of the specialists at OSU will be able to help. If you need a lunch buddy while you are in Columbus let me know. I'd be happy to keep you company while you wait for your appointment.
Cyndi
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Kathy -
there is a Rx ointment called Silvadene (maybe not the right spelling) that's for burns. Maybe that's what you are referring to.
I think you'd look very nice in a purple knit hat - are you listening Santa (or Steve)? One of the great things about the hat list is that the only one who knows the next recipient is Steve. I'm not sure that many of us asked for our name to be put on the list - we were just fortunate enough to be gifted with a hat. Kind of like we were all "gifted" with an AN - only the hats are a MUCH BETTER gift :D
Jan
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Dear Kathy,
I just wanted to say how sorry I am you are having to deal with the Staph infection, and that I think you are on the right track contacting an infectious disease specialist (and possibly looking for a wound care clinic). I have worked directly with infectious disease clinicians in the past and they are specialists in their own field as much as neurosurgeons are in theirs and have experience dealing with these persistent infections which can take a long time to clear. I am sure that the ones at OSU Med Center will have access to the most up-to-date knowledge about treating recurrent infections and are probably even better placed than your neurotologist to suggest how to finish this infection off once and for all! Do you know if it is Staph alone causing the infection or has something else nasty got in there too?
The UK published guidelines last year on the treatment & prevention of surgical site infections: http://guidance.nice.org.uk/CG74/Guidance/pdf/English
Section 7 summarises the evidence for different topical ointments, impregnated dressings and cleansing routines. As is often the case, there doesn't seem to be much conclusive in there but it does cites the scientific references for some of these treatments if you wanted to follow them up and see what they say.
Good luck with your search and I hope you get a purple party hat in your Christmas cracker,
Kate
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OK...this is the first time I'm typing these words, so I want to try them out with you.... I have breast cancer. Wow, that is hard to see with my picture attached to it.
Yesterday was a whirlwind - lots of discussions with a surgeon, radiologist, oncologist, clinical nurse, breast cancer patient navigator. Today, we see a radiation specialist. I have to leave for that appt in just a moment so I'll update more later....just wanted to get used to saying this in a very safe environment among friends. They said I caught it early and that I'm very lucky. Good to hear, but after this year, "lucky" just doesn't seem like the right word.
Today, since I have breast cancer, the docs at OSU have moved up my appt to this afternoon to check out this infamous head of mine. I'm also going to be dropping off my records at the James Cancer Center/OSU for a 2nd opinion. All my doctors down here in my hometown urge haste, so I'm listening!!!
Gotta run...more later.
Kathy
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Oh, Kathy... that's not what I wanted to read.
It does seem odd to say you're lucky, but catching cancer early is lucky. So many people who have caught theirs early have been cancer free for many years after treatment (my mom is going on 10 years) and I know there are many cancer survivors on the forum too who will be able to offer you words of wisdom and support.
Know that I'm praying for you and hoping that this is the LAST bump in a very long road for you. No more bumps! You will stay healthy!!!! >:( (that's me - mad at cancer, infections, AN's etc.).
As Mother Teresa once said "God never gives me more than I can handle. I just wish He didn't trust me so much." We all trust you and know you can show your body who's boss!
Good luck at your doctor's appointment. I'll be thinking about you.
Lori
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Kathy -
I'm at a loss for words :( You've been through so much.
But, I know that you're a fighter and you WILL beat this. As Lori said, we have quite a few cancer survivors on the forum and along with the rest of us, they'll be sure to offer you words of wisdom and support. We're all here for you - in whatever capacity you need - don't hesitate to lean on us.
Prayers,
Jan
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I am so sorry to hear that it was breast cancer but as they said they caught it early that is good so many success stories as long as the cancer is found early.. you definitely do not need this with all of your other problems. But you sound like such a strong person and I just feel in my heart that you will get through this and you have your family at the AN forum to talk whenever you need to.
My extra prayers will be with you,
Pat
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Kathy~
Oh my! As Lori said, I too am at a loss for words (& I don't think that happens often to us!)...the 1st thing that comes to mind is something that I don't say too often, but here goes: THAT JUST SUCKS! Please know that we are here for you to do whatever you need and be your support. I have a free airline ticket if you need a shoulder in person! You WILL get through all of this and on the bright side, you get to find out & hopefully end that ever increasing head yuck sooner...
K
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Kathy,
To say that I too am at a loss for words at hearing this latest piece of news is an understatement. :( You have already been through so much and this infection that just won't go away is more than enough for you to handle. I'm glad to hear that you and your docs are on top of things and also that it was caught early. You just went to the top of the list in my prayers -- please keep us posted -- you know we are all praying for you.
Sending you hugs to comfort you (((((((((())))))))
Wendy
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I think Kaybo said it best...this does suck! And as a teacher, I am always correcting my kids whenthey say that. My heart goes out to you, and I want to just go hit someone or something because I am angry that you are having to endure so much. God is with you in all of this, even in the darkest hour. Please let us know how you are doing as we help you pray your way through thiis. I am sending up prayers right now!
Priscilla
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Kathy .....
I hope you received my PM ..... This whole ordeal you are in is just plain not fair.
Thoughts and prayers.
Clarice
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Thank you all so very much. I should hear this afternoon what the recommendation for the cancer treatment is for me. I'll keep you all updated. In the meantime, off to OSU to meet with the Infectious Disease specialist this afternoon. What an ordeal....great to know that you all are still here!!!!
Love,
Kathy
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Kathy ~
This latest threat to your health is indeed a shock. In the world of oncology, finding a cancer early, before it metastasizes, is considered 'lucky' (for the patient) for obvious reasons. I will keep you in prayer as you battle this latest, undeserved affront to your well-being and of course, I hope the infection issue is also cleared up quickly.
I don't believe that God gives us anything we're not capable of handling, but I also believe that asking Him for some help along the way is a very wise thing to do as we fight. From previous accounts of your struggles, I believe that your character and strength will be tested but that you'll emerge victorious from these problems. It is no small thing that you'll be in the heart-felt prayers of many people, until you have conquered this latest obstacle to your good health.
Please try to remain courageous.
Jim
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Kathy, so sorry to hear about your breast cancer, but as you caught it early, that bodes well for you beating this too. As said before, you are a very strong person and have been thru way more than your fair share of challenges in the last year, but I know you'll be able to get over this hurdle too.
Please keep us posted.
Patrick
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Kathy,
What a roller coaster ride! I'm so sorry you are now gearing up to fight another battle. You are a tough cookie my friend and with the support of all of us on this forum, you will win this.
Anne Marie OX :-*
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Well, here's an update for the day (turns out, a really long one). Met with an infectious disease specialist at the Ohio State University Medical Center. He is extremely concerned about the staph infection and has ordered blood work - which I will get done tomorrow. He has consulted with my neurosurgeon in Cincinnati and the fact that they are working together on this makes me feel really good. Anyway, he said that this definitely can complicate my cancer treatment and right now he is inclined to be extremely aggressive with it - which means a PICC line could be in my immediate future. Should know very soon. Now here's the best part - his wife is a fellow for a very renowned breast cancer specialist for the James Cancer Center and he will arranging an appt with him and before moving forward with the PICC line, he will also be conferring with this man. Maybe I'm luckier than I thought?
Anyway, he debreided (?) the wound and wrapped my head in the wonderful gauze that I'm oh so familiar with. But, the fact that I have so many medical professionals working on this now made it a bit more tolerable.
That's the news du jour. Thanks to all of you, my friends and cheerleaders!! I'm hanging on your every words. I'll continue to update.
Kathy
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Kathy~
Sounds like you are in the very best hands (at least here on Earth!) and will be receiving some good care! I know you will keep us posted & let us know what we can do...
K
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May our words be a balm for your weary soul and a boost for your spirits when they start to flag. It does sound like you are in good hands with the specialists you have seen, and that makes ALL of us feel a little better. God's blessings to you today and every day!
Priscilla
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May our words be a balm for your weary soul and a boost for your spirits when they start to flag. It does sound like you are in good hands with the specialists you have seen, and that makes ALL of us feel a little better. God's blessings to you today and every day! Priscilla
Oh Kathy,
You have been through so much - i can't believe it.
My heart and prayers go out to you during this time.
It sounds like you are getting some EXCELLENT care, with your doctors all working together, isn't that awesome?
Stay strong - i know you will get through this.
More prayers to you and your family.
May you find comfort and peace during this special holiday season.
Sincerely,
Sue
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Kathy .....
What a relief to know that your entire medical team will now be consulting and working together on these major health issues. This really takes the pressure off you to try to keep everyone up to speed with what the others are telling you. Get and keep copies of all records/reports and keep them in a file to have with you on every visit, just in case of a "sorry, the computer is down" situation.
Let us know how you are doing, as you feel up to it.
Many thoughts and prayers continue .....
Clarice
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Kathy -
sounds like you're in very good hands.
Thanks for the update,
Jan
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Kathy, I am sorry to hear of now having 2 health issues at once. It does sound like you have good drs and will give good treatment. Just take life day by day and know we are thinking of you! Cheryl R
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Many prayers are with you! Best wishes, Mickey
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Many prayers are with you! Best wishes, Mickey
Ditto. Wishing and praying for the best outcome.
Neal
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Kathy,
I read this at the beginning of this thread and then did not go on again until today. I am in shock and so sorry to hear about your second whammy of a diagnosis. I can only imagine what has been going through your head...enough is enough! That being said, early detection is SO key in this and you did catch it early. And the fact that you are not being medically "shuffled" around and that the doctors sound like they are COMPLETELY in your corner and ready to fight your fight all bodes well for you. I am sending you many prayers as you go through this. Know that you are not alone and are in many hearts right now. Stay strong!
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Kathy ~
Your latest update is, indeed, positive. Having such a professional, experienced medical team working with you and for you is very reassuring. I think you're going to be O.K. but of course, not as quickly as you would prefer. So many good people are rooting (and praying) for you that I know better days are definitely coming. Hang in there - and thanks for keeping us updated. I can assure you that it's much appreciated by all of your 'AN friends' here, including me. :)
Jim
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I cannot think of anything to say other than what has already been so nicely said by others...I am thinking about you, pulling for you...this has to be hard, it goes without saying, i know. You have so many many people here who are supporting you with thoughts and prayers
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Add me to your list of pray-ers! It sounds like you're absolutely handling all of this correctly and you have a great support team. I wish you didn't have to go through all of this, but I'll be praying for a great outcome for you.
Denise
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Thank goodness some good news for you sounds like you will be in good hands you deserve it.
My prayers will be with you,
Pat
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Kathy,
I'm so sorry about all you're going through and am thankful that you can see the upside of it, even though it' very difficult.
My prayers will be with you as well.
Keri
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I am just concerned how you are doing please let us know..
My thoughts and prayers are with you,
Pat
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Hope all is well, Kathy.
Drop us a note when you get a chance. We do tend to worry around here - and I know I don't need any more grey hair!!
Lori
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Hi Guys!
Well, after many appts and ups/downs associated with phasing out of work AGAIN and telling my friends & family, here's where I am right now (and I can't tell you how wonderful it was to read the most recent posts here and find that you guys were wondering how I am....hard to help feeling a bit lonely through all of this)...
The docs at OSU were not in agreement with my local oncology team - they are indeed concerned about the staph infection and the breast cancer surgeon does not agree that the area of malignancy is small (which this was very hard to hear). The cancer specialists want the staph infection under control / treatment prior to the mastectomy. So, after all parties talked (neurosurgeon in Cincinnati, and the infectious disease specialist and cancer surgeon in Columbus) the plan is for surgery #4 to happen on January 5 in Cincinnati - my neurosurgeon will debried the wound, clean up all visible signs of infection, and remove all hardware / titanium to ensure that if any infection is tied to a reaction to any hardware, the sources are all gone). I will have a PICC line inserted at this time and will begin receiving IV antibiotics. They will transfer my care to the infectious disease specialist for the staph infection / PICC line who will be overseeing this phase of my care for staph infection. THEN....January 14th is the date of the mastectomy. I meet with the cancer surgeon on the 12th to make certain I am ready for surgery and I'm assuming that he will remove any staples/sutures from my Jan 5 surgery so I won't have to drive back down to Cincinnati. UGH...this is all so mindblowing for me - I never dreamed that a year after my first AN surgery, I would be staring at even scarier stuff. Oh well, trying not to dwell and remind myself that life isn't about being fair.
My family doctor prescribed an antidepressant and another anti-anxiety drug in case I need them. Right now, I don't feel that I do, but we'll see! Once the cancer surgeon characterized my tumor as "large", I have struggled with keeping my chin up. All these things are going through my mind like "Gee, how long has this been developing - why have the mammograms over the past 3 years noted "benign fibrocystic tissue" and now all of sudden, that same group of tissues are malignant? Where else is the cancer now that it's been made known? I am putting myself through the same ordeal as when my AN was first diagnosed - I am VERY aware of each and every ache / pain and possible association with cancer in other places!! Maybe it's nothing, but what if it is something? Won't know for a while and my logical side (while buried a little deeper of late, it is still there!) says that I can't do a darn thing about right now anyway, so girl - just be glad you are now aware, getting treated, and have a good group of folks to look after me. In this case, ignorance is not bliss, right?
So, right now, I am trying my level best to keep my fears in check, and get myself ready for 2010 and whatever that brings my way. My husband and kids are fabulous - my inlaws and extended family on my husband's side are also a terrific source of support for me. My own side of the family is in withdrawal mode (I saw my mother only 5 times in 2009 and she lives less than a mile from me - I know she loves me, but she just can't deal with other people's issues). Although I knew what their reaction would be, it still smarts a bit - but hey, the last year was a good dress rehearsal for some heavier stuff, and for that, I am better prepared (and so is the rest of my support system!!).
I will work on Monday Jan 4th, trying to keep things as normal as I can for as long as I can. Then, Tuesday morning, off to Cincy for the beginning of my 2010 adventure. I would much prefer to have things a bit calmer, but that is not my choice. I thank you guys for your care and concern...and count on you as part of my extended support team. I'll continue to stay online as much as possible - my 2009 was easier because you were in it with me, and I will continue to lean on you guys in 2010.
Love to all of you and my wish for all of you is a new year filled with live, love, support, and lots of laughter.
Kathy
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Kathy -
I'm not a doctor, but it sounds like the game plan is a good one and you are in good hands.
I'm relieved to hear that you have such great support from your inlaws and husband's extended family - and then there's all of us :)
Good luck with the surgeries on the 5th and on the 14th. You're in my thoughts and prayers daily - and I'm positive others share in that with me.
You've been through so much lately, I hope things improve as the new year progresses.
Please keep us posted when you can.
Best,
Jan
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Kathy,
It's good to hear from you and I'm glad your medical team is working together towards getting you well.
While your AN Family can't help you medically, we are all definitely here for you to lean on as much as you need to. We're all geared up to kick this cancer in the butt for you! >:( (don't we look scary?).
Please make sure you keep us posted. I know you're in good hands and will have a good outcome and be able to put all this behind you.
Stay strong, my friend!
Lori
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Kathy,
You have been very much in my thoughts and prayers and you will remain there. It sounds like your medical teams have a good plan of action and that you are in good hands. I'm glad to hear that your husband and kids and his extended family are such a wonderful source of support and comfort. We are here for you and you can lean on us as much as you need or want to. Please let us know how you are doing when you are up to it.
Wendy
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Kathy,
As we leave 2009 behind and begin 2010 you will be in my thoughts and prayers.
Anne Marie
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Kathy .....
Thanks so much for sharing the events of recent days, as well as what is coming up in January. Maybe in some small way, it is helpful to write it all down for a loving, caring, group of friends to see. We all wish we could take away the distress you must be feeling through all of this. Thank goodness you have a supportive husband and kids. You are a strong woman and you will get through all of this and come out even stronger.
My thoughts and prayers for not only you, but your family and your doctors, as well.
Clarice
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Kathy~
I echo everyone's comments - we are here for you - it doesn't seem like much but I hope you will let us know if there is ANYTHING we can do for you. I feel so much better knowing that you have a strong support group there for you. I'm sorry that your mom is not there for you, but at least you have your immediate family and your husband's family. Sounds like the Dr's are working together with YOUR best interests in mind. Please know that you are definitely in my thoughts and prayers!
Hugs & Squeezes to you,
Kay
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Kathy, thanks for the update. Sounds like you've got a great plan that will have you coming out strong in a few weeks. Know that we are all pulling hard for you. Good luck...we're praying for you. When you think about it, let us know how you're doing when you feel like it. Happy new year.
Patrick
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I am so glad you responded to us we were all very concerned I am so sorry you have to go through so much for one person and in just one year. You mentioned about the antidepressant and the anti-anxiety with all that is happening now and in the next few weeks I wish you would reconsider and start taking the medication now so you will maybe be able to cope a little bit better you deserve a little calm for now....
My thoughts and prayers will be with you,
Pat
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I am constantly pinching myself to make sure that I am really reading your posts and not dreaming that there is such a warm supportive and compassionate group of friends out there who care so much. Your comments mean the world to me and they are not small things at all!! I always feel so much better when I read them.
Donnalynn - thanks for sharing your mom story....I have accepted my situation as you have...most of the time. I'm much better at it of late, and my husband told me yesterday that he will always be there for her to complain to since she gave him "me"! He also said that if he had to do it over again 30 years ago, he would do nothing different (which of course, made me weep!) and that even though things are getting lopped off, he thinks I'm just wonderful!! Wow, how did I get so lucky!!!
Anyway, in an odd sort of way, it is good telling the story - guess journaling is really good for the soul. I am grateful for this forum that allows us to do it. Even though the stories might not be bestsellers, they are ours to tell and we kindred spirits are forever linked through the written word.
I promise to get my prescriptions filled today so they are on the ready. I will check with the pharmacy to make sure nothing that I'm taking or plan to take during my upcoming adventure will not interfere. Thanks, Pat, for the gentle nudge!!!!
Love to all of you and happy new year to all forumites!
Kathy
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Kathy, you have my thoughts and prayers also. So very sorry you are having to go through all of this!! Think of it as the roots of your best selling book that you will be authoring. Of course, it will be made into a Major Motion Picture and Meryl Streep can play you! You'll be invited to the Oscar party after she wins Best Actress and you will be on Oprah right before she retires. Hey, it could happen! ;)
Hang in there, kiddo.
Sue in Vancouver, USA
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Kathy.
That husband of yours is a KEEPER!
Anne Marie
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Oh dear Kathy,
I just read the update, and had no idea you got an additional dx of breast cancer.
Why? Why? Why?
We ANers are a glutton for punishment no doubt. You have a lot of people praying for you, and rooting you on and I know you will do great
Keep the faith,
Maureen
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Kathy, you continue to be in my prayers, and I wish you all the best as you face surgery AGAIN! >:( God bless you as you continue on this new journey.
Denise
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Kathy,
Add me to the list of those praying for you. I know many women who have beat breast cancer. You can too. Take care.
Mona
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Kathy -
wishing you the best tomorrow.
Thinking of you,
Jan
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Kathy~
You are in my thoughts & prayers - especially today - your whole family too! You are going to beat all this & be a stronger lady on the other side!
K ;D
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Kathy .....
Thinking about you today ..... praying that this step of the process goes as planned with a minimum amount of discomfort.
Clarice
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Kathy,
You are in my prayers today as you have been since I started reading your story. You are one strong lady.
Thoughts & Prayers with you,
Lynn
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You are in my prayers today hope that someone will let us know how things went today.
Best Wishes,
Pat
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Kathy,
Please know that you are in my prayers today also. I'm hoping, as we all are, that someone will let us know how things went.
Wendy
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Kathy, you know I am thinking of you and hope all is going well! Cheryl R
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Kathy,
Some more good thoughts and best wishes.
Good luck,
Neal
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My positive energy is being sent your way also.
Sue in Vancouver, USA
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Hope to hear some good news!
We're all thinking of you today.
Lori
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Hi Kathy.
Sending up lots of prayers for you today! If you need anything prior to your stay in Columbus, just let me know.
Hugs,
Cyndi
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Hi Kathy-
Just wanted to add my well-wishes to everyone else's. I hope that all goes well today. You've certainly got a plateful of stuff to deal with - seems like you are way overdue for a break.
sending hugs and prayers,
Debbi
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Kathy,
I add my well wishes and prayers to everyone elses.
Keri
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Hello to all of you! The first surgery of 2010 is now behind me. Phew. They kept me overnight (the last 2 were same day surgeries) this time. My neurosurgeon removed all hardware - the plate, the screws, and mesh and did all he could do to clean things up. They attempted to put in a PICC line in my right arm during surgery - but failed. Since my PICC line was in that arm last Feb., they wanted the left arm, but can't go there because of the left side mastectomy on Jan 14th. So, I came out of surgery with my head shaved in the back for the 4th time, lots of sutures and ugliness, and my right arn is unbelievably black and blue - the doctor who attempted (multiple times) for the PICC line apologized over and over to my husband afterwards and said that my veins kept collapsing and clotting. Of course!
So, the next day, they took me to radiology to do a central line guided by ultrasound. It is in the upper part of my chest on the right side and looks rather wicked. But, the IV antibiotics are in my system 24/7 and if it gets rid of this infernal infection, I guess it will be well worth it. The infectious disease specialist has spoken with my neurosurgeon's office several times over the past few days and he called me today to check on me. He said after dealing with this infection for a year, he was going to be extremely & overly aggressive, making every effort to eradicate the infection once and for all. In his heart of hearts, he said he thinks the infection must have been in the bone, although at a level that is not detected through blood cultures or sight. He said that he wants the line in for 6-8 weeks and not to let anyone remove it without talking with him first! I love his insistance and I am more than willing to adhere to his rules.
So, I am trying to rebound from this one and get ready for next Thursday. My appetite is not great and my system has not fully gotten back into rhythm, but I feel better today than yesterday, so that is something. Trying to keep my chin up and your posts and prayers are really helping. My husband has been trained again by home health care to change iv bags and flush my central line. He cleans my wound/incision 2 times a day, and this time we have to keep it wrapped for one week. I'm telling you, he is quite the man.
I report to the oncology surgeon on Tuesday to be cleared for surgery on Thursday. Assuming that I pass this assessment, I'll go in at 7:00am Thursday morning with surgery around 11:30.
Well, that's the next passage for my AN/BC novel. Thanks, again, for your presence in my life! Not everyone would have hung on this long!!
Love,
Kathy
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It is so good to hear from you my prayers and thoughts are constantly with you, you are truly an amazing woman and are so lucky to have a wonderful family. Could you please show your wonderful husband if possible I know he will have a million other things on his mind. But if he can write to us on this site and keep us posted next week I am sure others as well as myself will be sitting here waiting on pins and needles as to how you are doing.
My thoughts and prayers are with you,
Pat
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Oh Hello Dearest Kathy,
You sure have a cheerful heart and I know with your spirit, you're going to make a full recovery soon! My prayers continue for you and your sweet wonderful hubby! Life is so much better with a loving caring devoted husband and I am so glad that you have that too! Bless you and your loved ones, may you sail right through surgery, and feel better soon! Looking forward to your having this all behind you and getting on with life and the fun that awaits you! Thinking and praying for you Kathy,
Jackie (in Oregon)
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Kathy, thanks for the update. Sorry to hear about the trouble with the PICC line, but otherwise sounds like you're doing well. I'll say it again...you are one strong lady. I'm sure in a few weeks, you'll be as good as new. We wish you good luck on the surgery for next week. Still pulling and praying for you.
Patrick
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Kathy~
SO glad to hear from you - I have been wondering! My whole Wednesday Morning Ladies Bible Class is praying for you - feel the strength!
K ;D
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Kathy -
thank you so much for taking the time to update us. We really appreciate it - especially in light of all you are going through.
Sounds like the infectious disease doctor is the right one to have in your corner.
My thoughts and prayers continue to be with you, your husband, and your daughter. As Kay said, prayer is very powerful.
Best,
Jan
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Kathy,
You couldn't get rid of us if you tried! :-*
I'm glad you made it through Round 1 of the adventures of 2010. Hopefully you'll get lots of rest to get ready for Round 2.
I've never personally had a PICC or central line, but in my experience with patients with them, I think you'll actually prefer the central line. You'll have to let me know for future patients.
Thanks for keeping us in the loop. Give that sweet husband of yours a big hug from the AN family!
Take care of yourself! The prayers and good thoughts will continue!
Lori
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Kathy,
Sending lots of hugs and :-* :-* :-* :-* A few for tour hubby too :-* :-* :-* :-*
Anne Marie
PS I praying also for a success recovery!
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It is so great to hear from you Kathy! It sounds like things went well - other than your poor arm! Try to eat more this week before you check in at the James. The staff is AWESOME but I can't say the same for the food. I'm close by and willing to make food runs for you and your family at any time.
We'll continue to pray for a successful surgery on the 14th and an easy recovery.
Hugs,
Cyndi
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Kathy,
Thank you for the update.
Prayers all around for continued healing!
Stay strong - you can do it!
Sincerely,
Sue
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Kathy,
Thank you so much for the update. You are such a strong woman with a wonderful hubby!
My prayers & thoughts are with you both.
Lynn
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Kathy, Good to hear from you as I have been wondering how it went. That is too bad about the PICC but central lines are used a great deal and long before PICCs. I hope the infection does get taken care of now and that improves in time. We will be thinking of you with the next round and hope for the best there too!
One day at a time! Cheryl R
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Kathy~
I meant to tell you that the whole time I had a PICC line and was going once a week to the infectious disease Dr., his nurse (who was the QUEEN of PICC lines) always said that she GREATLY preferred central lines. We talked about it a lot as when they put in my PICC line, they hit a nerve and I couldn't use my arm for 2 weeks! I still feel a little tingle when I hit it wrong! Also, knowing that you might need it in the future for the cancer treatments, I think that will be better in the long run...maybe kill two birds with one stone kind of thing?
Hoping you have a good weekend!
K ;D
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Kathy, so great to hear from you and get that update. You have been through so much and continue the battle and your spirit and strength are so evident. I too will mark my calendar for Thursday and look forward to the day that this all is a distance memory for you.
Praying for you!
Cheryl
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Thanks for the warm welcome back! So far I do prefer the central line - it's not in the way as much and appears to be much more securely fastened in. Only one of two ports on the PICC line ever worked - the other was permanently clogged. There's only one port on this one, but I'm assuming that because of the more direct route to the source, the chance of clotting is less?
Today I feel rather puny - I think its the antibiotics making me nauseous but I'm hoping the anti-nausea meds will kick in here soon.
Cyndi - thanks so much for the tip on food at the James and offer to make food runs! I'll alert the family!!!
I'll stay in touch - and as always, thanks for your support!!!
Kathy
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Kathy -
mind if I ask how Kristin is doing with all of this? As a mom myself, it's something I've been worrying about. As tough as this is on you and your husband, it must be equally tough on her.
Does she have some kind of support system in place?
Jan
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Hi Kathy,
Thanks for updating us. It really sounds like your infectious disease doc is exactly what you need to get rid of this tenacious infection once and for all -- I'm glad you found him. Your husband sounds like the kind of guy every woman would want at her side at a time like this and a real source of strength and support. I know Kristen was also a great comfort and source of support throughout your AN journey and hope she is okay too. You have such a strong and brave spirit that I really admire how you are handling these challenges. We are there for you in virtually and spirit too. You and your family are in my prayers.
Best wishes,
Wendy
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I am new to all of this but I want to let you know that I will pray for you. You just don't know what you've got till it's gone. Hope all will be well with you.
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Thanks for asking about Kristin - she is very strong with me, and she has some friends, but to be honest, I'm not sure how she truly is. I've convinced her to stop trying to give her work hours to others so she can be home, and she has gotten back into some regular hours since late last week. She is not going to school right now and most of her close friends are away at school and I am worred about her.
Kristin, as you remember I'm sure(!), joined this forum first over a year ago when she was worried about taking care of me. During those first few weeks, she connected with DonnaLynn who has a daughter about her age. They were (and remain) anxious to talk to her if ever she wanted to, but she never did. DonnaLynn and I have spoken recently and once again, they have extended this invitation, which I am encouraging in every way possible. You are exactly right, Jan, this is an all consuming illness to everyone close.
Do you have other suggestions?
Kathy
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Kathy,
I think that as long as you and your husband are honest and open to taliking with Kristin, she will be okay. Although she is young (about 19 if I remember right) she is a very strong person and I do remember her from when she joined to talk to all of us on the forum about your (then) recent diagnosis of an AN. Even though most of her close friends are away at school, is there anyone she's close to and stays in touch with? It is not surprising that she wants to stick close to home since she is rightly worried about you, but you are right to tell her to go to work and have as normal a life as possible. You all seem like a pretty good team, so just keep the lines of communication open and hopefully you will all be able to cope with all the emotions that must be swirling around.
Wendy
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Kathy,
You all seem like a pretty good team, so just keep the lines of communication open and hopefully you will all be able to cope with all the emotions that must be swirling around. Wendy
Kathy,
Sounds like you have a wonderful family, and are working hard to keep the lines of communication open.
From my own experience, i would continue to encourage Kristin to talk to someone, personal or professional, (if she wants) and then take 'a break' just like any other caregiver should do.
Prayers all around during this time.
Sincerely,
Sue
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Kathy,
I am so sorry I didn't realize you have a younger daughter also helping you I too have a daughter who is much older and still home but I am worried about her she is totally devoted to me during these past 6 months and not going out much and I feel so bad. When I tell her to go out I am okay she said you have taken care of me all these years and now it is my turn to take care of you I wanted to cry. But this is what they want to do so we have to just go with it I said to my daughter when I am 90 years old will she change my diaper that she adamantly said no she will hire someone...hahaha... If your daughter would like to talk to mine please let me know if we can help ???
My prayers are with you this week,
Pat
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Kathy,
I can't believe what you are going through! I only hope that each day is a little better for you. Don't forget the green tea/honey/lemon. It's very comforting. You might get some Ensure to have also, or something along those lines. Better than nothing.
Or have your daughter go to one of those places, like Jamba Juice, and get some kind of healthy smoothie. Maybe that would taste good and give you some calories.
Thinking of you and wishing you "well",
Sue in Vancouver, USA
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Oh Kathy...I have not been on the forum much this fall, I am so sorry I have missed everything you have been going through. My thoughts and prayers are with you and your family. I just read all your posts since my surgery and found how supportive you've been to others even though you have been on this roller coaster! You are a strong and positive person. You can do this. I pray your infection is truly gone this time and your surgery on Thursday is successful. Again, I wish this wasn't happening to you and hope there is a bright moment everyday in your future!! Alicia
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Kathy,
Your husband sounds like a treasure, and your daughter too. Blessings there, my dear. My husband was in charge of my PICC lines, and I never loved him more! He got up at 5 every morning to get things set up for me. I 'm glad you got the central line instead of having all those bits and pieces flapping around. What a nuisance! My prayers are with you as you move into the next stages of treatment. May they be an encouragement to you!
Love,
Priscilla
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Chin up.
Be strong.
Love to Kristin and the man.
Thinking of you,
Nancy
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Kathy -
I'm one who has never shied away from professional help - for me and for my children - so you might want to ask Kristin if she's willing to talk to a therapist. Sometimes being able to express your thoughts and fears to someone who is totally "away" from the situation can be immensely helpful and can put a new perspective on things. A support group - like Donnalynn suggested - is also a great idea. It would depend on Kristin and her comfort level though. Some find they like the privacy of one-on-one counseling, others like the support a group offers.
Then again, Kristin is old enough to decide for herself what she wants to do and she may not feel she needs counseling or a support group. I'd let her lead the way by presenting her with resources and letting her make her own decision. Telling her it's okay to seek help will give her a good foundation to make the decision that is right for her as some might think it's admitting to a weakness if they say they need help.
Being honest and open in your communication with Kristin and encouraging her to talk about her feelings is another idea that I think would be helpful to her.
Keep in mind that these are just my opinions; I am not a medical professional :)
Best,
Jan
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Thanks for all the suggestions for Kristin. She is one amazing young lady and she has been dealing with some heavy stuff with me for a very long time. She told me last night that she very much appreciates the offer to talk about how she is feeling about all of this, but she would feel selfish since this is not about her. Had myself a good little cry last night thinking about it.
I think in time, she may feel differently, and I will be certain that she knows the many options that are available to her, be it counseling, support groups (and yes, I remember reading about some of theses same kinds of groups at my hospital that DonnaLynn mentioned!), or people who share these life experiences. I thank you for your caring hearts that extend to my family.
I had my appointment with the oncology surgeon this morning. The green light was given for surgery on Thursday at 11:30. I must say, the difference between my AN surgeons and this one is NIGHT and DAY. I was cared for by my AN surgeons with compassion, caring, kindness, AND skill, experience, confidence, and knowledge. The first 3 characteristics are absent in this one! But, I keep reminding myself, that I wlill not have a long-term relationship with this guy - he is the surgeon who, once I heal sufficiently, will refer me to the oncologist for my treatment. So, we are willing to accept the lack of bedside manner and pray that he is the surgeon that we are hoping for in the skills category! AND....we are even more grateful for the AN surgeons in Cincinnati - they spoiled us! If my husband and I do not have a rapport with the oncologist we meet with down the road, we will seek out one who fits the bill from all perspectives!!
So, we are ready. Heading to Columbus tomorrow night so we are close to the hospital. My husband's family is driving up from Kentucky to be with us tomorrow night and they will remain with my family during surgery on Thursday. I feel surrounded by love, prayers, warmth, and positive healing energy - much of which come from my AN family here. And I am looking forward to becoming a postie, once again. I may not be online tomorrow, but I've asked my daughter to log in Thursday and let you know how I'm doing. Not sure if she wll follow this thread or start a new one, but on her family notification list is my AN family.
As always, thank you all for being here for me throughout all of this.
Kathy
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I must say, the difference between my AN surgeons and this one is NIGHT and DAY. I was cared for by my AN surgeons with compassion, caring, kindness, AND skill, experience, confidence, and knowledge. The first 3 characteristics are absent in this one!
Well, it's a great thing that you have all of us then. We'll make up for your surgeon's lack of compassion, caring, and kindess ;D
Best of luck, Kathy. My thoughts and prayers are with you.
You are strong. Keep the faith; you'll get through this.
Kisses :-*
Jan
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Kathy,
Some of the best doctors have the worst bedside manner! I like to think they spent so much time studying that they missed out on the socialization. ;D
I know your daughter will be okay. She just wants to make sure she's there for you, just like you've always been there for her. You must be very proud of her and you should be proud of yourself for raising such a caring and compassionate daughter.
I'll be thinking of you and your family and I'll be anxiously awaiting some word from Kristin. Virtual hug to the whole family!
Now - GO GET 'EM, TIGER!!!!!
Lori
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Kath
I am so sorry that the doctors have no compassion but we do, you just need them now as the experts I guess that overules the rest. You know that your family and AN friends will definitely provide what the doctors are lacking and then some.
My prayers and thoughts will be with you and your family I as others will be looking for information as to how things are going but Kristen will have enough on her mind so she shouldn't stress if she misses a few people.
Best Wishes,
Pat
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OMG, who started the ANA Book Club, used to say "kisses to your forehead." In her absence, here is one for Kathy:
(http://stevegerrard.home.comcast.net/foreheadkisses.jpg)
:-*
Steve
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Talk about feeling warm and fuzzy! Thanks Steve :-*
Kathy sending you a virtal hug and many :-* :-* :-*
Anne Marie
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prayers and love and hugs flying at you from NJ, Kathy. Will be thinking of you tomorrow.
And, Steve, your photo montage made my cry - what a beautiful series of pictures.
Debbi
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Kathy,
I'm sorry I didn't get to wish you luck today and I pray that you are in the very best of hands. I too am sorry your surgeon doesn't have the caring and compassion skills but pray he is extremely skilled at what he does. I have to agree that some of the best doctors have the worst bedside manner! I really do think that they've spent and still spend so much time studying and in the lab that they don't expend much energy on developing social skills. I'm sending you hugs, my love and prayers for a great outcome and am looking forward to Kristin's post.
Wendy
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The kisses on the forehead was so sweet and was just perfect for today.
My prayers and thoughts are with you Kathy and your wonderful family will be waiting by the computer.
Best Wishes,
Pat
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Kathy,
Thinking of you and praying for you and your family
and sending blessings your way.
Jackie in Oregon
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Kathy,
Prayers are with you and your family. Big hugs for all. I really do love the kisses on the forehead Steve.
Lynn
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Have just now read this whole thread - so sorry, Kathy, about ALL you have been through and sorry I'm just now reading about it. Hope you are recovering as comfortably as possible today...I have been through breast cancer twice (mastectomy first time around), please feel free to PM me once you are up and about and I'll be glad to talk with you more. You are strong and you can get through this! You know we are all cheering you on!
Hoping the rest of 2010 will be a much better year for you! May hugs,
Cindy
PS - Steve, that is one of the sweetest things I've seen...
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Hey fellow buckeye!
I hope all went well with your surgery Kathy. The kids and I have been praying for you and your family today. We'll continue to send prayers and good thoughts your way while you recover.
Hugs,
Cyndi
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For those who haven't seen it yet, Kathy's daughter Kristin has posted an update.
You'll find it here http://anausa.org/forum/index.php?topic=11594.0
Jan
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Thinking of you and praying for you too, Kathy. You and your family.
thank you, Jan, for the update on where to find the surgery update on Kathy.
the picture was very sweet, steve.
I pray that you are feeling better day by day.
Keri