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Anyone ever get C-dif infection

Carol Lee S

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Hi everyone, Haven't been on the Board this week, we took Gene to the ER Saturday night with rectal bleeding. He presented with diarraha and lots of blood in the bowl. They ran all the tests including a CT scan of the chest (thanks to your posts to me last week I was really in control). They were assuming that the cancer spread to the colon as the Ct showed an inflammed colon.

One Doc in the ER that we have become "friends" (we have frequent flyer milage at the ER) told me he wasn't so sure that it was cancer and pushed for the C-dif testing. Unfortunately it takes a few days to come back. We did the test and he admitted Gene using Cipro a broad spetrum antibotic and later to Flagle. Unfortunately he was only the ER doc and they don't have anything to say on the floors. Our oncologist is not affliated with this hospital anymore so we were tossed to the wolves as far as oncology went.

C-dif a short name for a baterical infection that I couldn't even begin to pronounce, that comes from taking certain antibiotics Gene was taking Clyndamycin for a supposed chest wheeze. Treatable with another antibitoc called Flagle

He was admitted and listed as NPO until they decided what tests they would be performing. I called our oncologist and he said it could very well be C-dif. On Sunday evening the bleeding stopped. They still had him NPO and in bed, I lost it. I requested that the Doctor of record produce himself, I was told he was on vacation and an intern was covering for him. As we were in a teaching hospital (I am on the citizens dvisory board of this hospital) at least a hundred Doctors probed and poked my husband.

Finally they produced an attending Doc. WE TALKED!! I asked if his cardioligist or neurologist was notified, and whether the gastroentrologist was going to do any tests. He said they would wait until tomorrow to see what was happening. I said no! enough, take him off NPO give him some food get him out of bed before atrophy sets in and let's get the show going. After a few words I strongly suggested that we all meet that afternoon and set a game plan and that I was including a dear friend who is a Doc on staff of the hospital. Looking back I can't believe I was so vocal. I guess he got the message and at 4pm all eight Docs showed up, we talked they took the NPO off and we agreed on clear liquids for the night (not orange as he vomits from the orange dye) and would start solid foods in the morning. I made them add Boost Breeze to the diet. No further tests were being planned except a rectal which the Gastro guy wanted, I suggested he do now or never. He did the rectal and was happy with the results. All the scans showed the inflammation was much reduced and the bleeding had stopped.

I understand the need to wait and see so the bleed didn't start again, but I also understood the need not to loose anymore weight. His liquid diet came up and everything on the tray was orange soda, jello etc. the plate with the cover on had a slip of paper in it where the Boost should be that said "Sorry we are out of your favorite food". I was on a roll this time. I made at a call to Dietary Care and I got a very rude girl who told me that Boost was not something I could order a Doctor had to order. That was the straw that broke the back. I went marching right down to the Nurse Manager's office and she was extremely helpful and made the appropriate calls. They were truly out of Boost; something that should not happen on a cancer floor. I got Gene the liquid diet he needed for the night. The next morning I called him before I went to work to make sure that the food showed up. By 9am still no food. at 10am they sent up a Bagel with coffee, not even decaf. Great meal for a cardiac/cancer patient. I left work and made my way to the CEO's office, his Secretary met me at the door apologizing profusely, not enought I said, he needs food and this problem needs to be addressed; I am complaining, what about the other people who aren't able to. I then found out how many people went without Boost yesterday. At noon, Gene's lunch tray came up, my heavens you thought he was going on a five day camping trip. Food was all over the place, still no Boost. To make a long story short, Boost is now a floor staple.

He was in the hospital for four days and was released last night at 5pm only to return back at 7pm for 102 fever. We came home again last night at 3am. All the blood work, Xrays and samples did not indicate a thing wrong. He has had enough of the testing probing etc. His veins are showing wear and tear and he is thinking about a port. The low grade fever comes and goes, he is very tired but did eat breakfast at 11am and dinner tonight. We now have O2 in the house to use as needed. I am keeping the fluids going along with the meds. A positive side to this saga was the Chest scan showed that the tumor in the left lung shrank a bit but unfortunately many more Flufflies appeared in the right lung.

By the way, our Oncologist called me at the hospital I explained what was happening he said the direction that the Docs were taking seemed to be a good approach and I should keep him informed. (yeah right the direction they were taking was leading nowhere until I intervened) Not exactly what I was looking for in a Doc. I guess it is time to switch Docs as he is to far to travel to in an emergency and actually he is more interested in getting Gene on hospice. The hospital we were at is designated a cancer center, our oncologist was treating us there originally but then move to Sloan, we followed him.

I am going to research a few other centers this evening. If I find one I will request a leave of absence from work for a few weeks and attempt to travel there if it would help.

Okay now I am looking at this post of ramble and realize that I should be all talked out but of course I'm not. I will continue to be his advocate. He has always been an advocate for everyone else. He is such a very special person, so giving, never asking for anything and always upbeat, even when the tears come streaming down my face as I look at him struggling to make the best of this rancid disease, he smiles and says its okay honey we'll beat this monster. God I love those hugs!!!

Anyway Thank you for listening and remember C-dif is a treatable infection. Carol


Gail and Deb sending you a PM

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Your post took my breath away. You were so assertive and got results. Go Girl!!! I am not a particularly assertive person either as you'll see in the "PM" I sent you. But I am coming to more and more realize that you need to be or you can well get "lost" in the shuffle. It's unfortunate that each lc patient seems to need an advocate but they sure do. Anyhow, Carol, you did a wonderful job there --- got eight docs together at once!!! I'm just so sorry that you had to do it --- How lucky Gene is to have you at his side and I know from reading your posts you feel just as lucky to have Gene at your side. Hope you two get a good rest -- sounds like you both need it.

Prayers and thoughts are wtih you.


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Carol, I just wanted to let you know that I am so glad that we got to talk yesterday. You really impressed me with your strength and assertivness with the doctors. I know this is so hard right now. I really believe that, seeing as how Iressa has so fewer side effects than chemo, it is something that Gene would be able to handle, and since it can work wonders, it is definatly worth giving it a chance.

Please feel free to call me, whenever you want to. It is so great that your friends have been able to help you with your medical concerns, especially where the doctors have not!

Please keep in touch, and if you don't mind, I would like to call you and keep in touch with how Gene is doing, and how you are doing.

I am so glad that we talked. Take care and continue to follow your gut. I am sorry that you have needed to be so assertive with the doctors, it shouldn't be that way, but it is wonderful that you were able to. You must be so tired. If there is anything I can do, even if you just need to vent, I'm here. Take care, Carol. You and Gene are in my thoughts and prayers. I will talk to you soon. Deb

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Hi Carol,

WOW, good for you for getting Gene the care he deserves and getting the medical team on the same page! I have been there too. I swear people who have no one to be their voice are left to the mercy of incompetent care and that is plain SAD. :(

The oncologist that was taking over my husband's onc. patients while my husband's onc. was on vacation was quick to say "hospice" too. No clinical trails were offered and when my husband asked, the onc. said, "There are none available." :shock: PUH-LEEEEEAZZZE! :evil: You know what my husband said...he said the onc. looked at him as if he was dead already! How utterly SAD. :( There is more to this and I DID report him!!!!!

We have a program here now called, "Bridge". It is the step before hospice. My husband is on Iressa, still fighting. I am right here w/him - fighting too. I am prepared for whatever happens...but I still have my hope and so does my husband! Some days are good and some are bad...today is a bad day. My husband coughs and shakes when he coughs as the coughing is so very violent. :( He brings up so much phlegm. :( Bob is on a feeding tube from radiation therapy damage. :( He longs to eat - to taste food. He also lost his voice, from radiation therapy damage. When one gets radiation to the area near the voice box, one needs to be made aware of the risks - and we never were. :(

Well I am rambling now. I just wanted to say you and Gene are in our prayers and I think what you did for Gene was so wonderful! It is sad how we must act as such to get the 'job' done for our loved ones...but we do what we need to do. I went from Dept. to Dept. and had to practically scream to get my husband the care he needed when he was in the hospital! I call it playing, "A Shirley MacClain". I am not so sure I spelled her last name right. Remember the movie, "Terms of Endearment"? Remember when Shirley screams to the nurses, "GIVE MY DAUGHTER THE SHOT." Well, when they are neglecting my husband, I excuse myself, saying, "I need to go play a Shirley McClain". And, it always works. It is sad though. :(

Take care, :)

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Thank you Michele, I wish we had a bridge program here. Your information was terrific, now I know I should be fighting as hard as I can for him. Sounds likle you both have been through the mill and are still going strong, where there is breath there is hope!!! Our prayers are with you guys too!!! Carol & Gene

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