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PACath mistake adds to horrible mess


Bill

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hospital nurse inserted needle through a clear adhesive bandage patch that was covering my mothers PACath. A cancer nurse noticed the mistake and two people were called to her rooom. one of these people had a camera and took pix of the needle sticking threough the adhesive patch. nurse removed the patch and redid the needle and says that dont worry bore of needle is such that it does not cut a piece of adhesive out that could enter blood stream. then why are they watching my mom so close and keep testing her PACath and draw blood in and out ? people go out into hallway after testing and talk. how can things turn so bad so fast. my father has directive power and has ben asked to make a decisaion about ending all treatment but pain and comfort. a surgeon I think thoracic is planning to talk to my father tonite about something called a nerve block. also they are doing an ultrassound on my mothers abdomen and her feet and ankles are very swollen. she keeps coughing . cant stop. nurse says its probly the Alimta attacking lung tumors. nice of her to say so but hard to believe it with such a mess like this. they also fotgot to give her her folic acid yhis morning. they finally gave it to her tonite as I was leaving after my father showed up and went ballastic

rob

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Rob,

This care is just unacceptable. I am sorry your mom is going through such umprofessional care and we pay for this type of care. Healthcare has gone to He** in a hand basket. (Old timers saying, got it from my parents) Everyone is in a hurry and do a bad job mode.

If my memory serves me correctly. Your mom is at Saddleback Hospital. I live in Southern California too, Corona..

Your mom is in my prayers...Please keep us posted...

Sending prayers,

Karen

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Hi Rob - I'm sorry things have gone badly at the hospital. Worst of all, they are not telling you what's going on. Mistakes do occur occasionally, but the better way to deal with them is to talk openly, not leave the room so the family and patient won't hear. I suggest you and your family talk with the nurse manager and the head physician and make it clear that you expect to be told the facts. There is no excuse for keeping you in the dark.

By the way, the needle used to access a portacath is indeed non-coring, as the nurse said, so it doesn't take out a "chunk" of the membrane with it. So IMO inserting it through the bandage should not do any harm.

Let us know how things work out. - Teresa

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karen - yes I see poor quality way to much.some of the nurses are sharp but some of the others are clueless. ioo my mom has had a very very severe reaction to Alimta. some of the nurses still dont get it and I was surprised at how few nurses kno much about Alimta and its potential toxic effects/ mom is no better today. alimta was given monday afternoon. how many days does it take for semi coma fatigue from Alimta to improve. she cant even pull a tissue from a box or hold a straw in her mouth. everybody keeeps rtalking about dehydration. she is completely rehydrated but no improvement. youd think that that would be a big clue that somthing else is going on. still lots of breathing trouble and out of control bouts of coughing. none of this before alimta

Teresa - thanx much for the needle info. helps ease my concern over that mistake.

thanx to you all for the messages

rob

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Dear Rob,

I am so hesitant to post this, and was before, too, because so many people are on Alimta and not having this kind of trouble.

My husband had a severe reaction to Alimta which caused his alveoli cells in his lungs to be completely destroyed. His symptoms were fatigue and gradual shortness of breath until breathing whenever he tried to move or do anything at all, even lifting a spoon to eat, became difficult. The symptoms increased dramatically after his third dose of Alimta, but the SOB began before that and was something he never had before Alimta.

He was hospitalized to eliminate his having to go to several places to get tests done because it was in the 90s and very humid. They did a CT and could see in the CT that there was a problem with these cells. They wanted to do a VATS procedure (open lung biopsy) to try to figure out what was causing the problem. They knew it was either the cancer growing rapidly, an infection or the chemo.

They did a rush procedure and he declined very rapidly after that. The very next morning they got the biopsy results that determined it was reaction to the chemo. They sent it out for a second opinion, but he died that same day. The destruction of the cells was rapid and persistent. They did everything they could to save him - had him on a respirator, giving him massive doses of drugs and sedatives to keep him from fighting to breathe against the respirator and to let the respirator do the work. At the end they even did something that paralyzed his body, but nothing worked.

The second opinion on the biopsy was received a few days later and it was the same result.

I'm sure your mother is not healthy enough to have the biopsy done, but you might want to mention this alveoli destruction to her oncologist. Alimta is still very new and I'm not surprised the nurses and doctors aren't familiar with the potential side effects. Most of the nurses and doctors we encountered had not even yet heard of Alimta, let alone its side effects.

Fortunately, it has been a very good and effective drug for many, and is considered to be as effective as Taxol and Taxotere without as severe side effects. In fact, there are several people on this site that have been NED since taking Alimta. There are exceptions, of course, for people like my husband and perhaps your mother.

Like your mom, Don's cancer was also growing rapidly. Although he was doing very well, it was just a matter of months before the cancer would get the best of him. Also, like your mom, he had many chemos, Iressa and Tarceva, lung and bone radiation, brain radiation, stereotactic brain radiation, and he had to choose whether to try another chemo or let the cancer do its thing. He chose to try it knowing full well that it was risky since his body had already had so much.

I have no anger toward the drug, the drug company (which by the way is where my husband worked for 32 years), the doctors or nurses or anybody. There were certainly some mistakes made along the way, and I think there always will be, but nothing that was life threatening. I truly believe that most of the time, oncologists and pulmonoligists, etc. do their very best they can with whatever knowledge they have and treatments they have available. I know some don't agree with that, but that's the way I see it.

Even though Don did not except to die when he went into that hospital, he died knowing he did everything that could be done. Your mom has done the same thing. Your mom and my Don are both winners, along with many others here who fought with all their might.

Hang in there, Rob. I can't tell for sure from your posts if you are angry, but if you are, please don't let anger consume you or let the "what if" questions consume you now or later. Your mom wouldn't want that, I'm sure. Somebody on this website said "we are all terminal". I would add, some sooner - some later - some from disease - some from accidents - some at the hands of others. You are a young man and have a full life ahead of you. Take good care of your mom, and stay close to your dad, but please when you think about this time of suffering and pain for all of you, try to think of it knowing that everybody did everything they could!

Much love and hugs to you and your entire family,

Peggy

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Rob,

What a wonderful son you are, I have two sons and I am so proud of them too...

I would like to visit your mom if I possibly can, this is a holiday week-end. Not sure if possible...May I ask your mom's first name?

Just make sure your mom stays hydrated. I think the Alimta can be eliminated from her system through urination. I am not a doctor, but I would not allow anymore Alimta til she improves. I am sure your father is aware of this though. Have they given her B-12 and the Folic Acid ?

Saying prayers for your mom and family. Please keep us posted.

God Bless and hugs from a mom,

Karen

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Rob,

From what I have read, 500mg is the recommended dosage. There is a website for Alimta...It is quite lengthy, I believe 22-23 pages. Thare is a lot of info there. Maybe your father will understand it...

Http:pl.lilly.com/us/alimta-pi.pdf. Hope this works, I will try and if not will redo.

Karen

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Dear Rob,

I am so hesitant to post this, and was before, too, because so many people are on Alimta and not having this kind of trouble.

My husband had a severe reaction to Alimta which caused his alveoli cells in his lungs to be completely destroyed. His symptoms were fatigue and gradual shortness of breath until breathing whenever he tried to move or do anything at all, even lifting a spoon to eat, became difficult. The symptoms increased dramatically after his third dose of Alimta, but the SOB began before that and was something he never had before Alimta.

/quote]

peggy -

my father is caught up in a very tense situation at the hospital tonite. I told him about the messages that have been exchnaged today. he sent me a text message asking me to ask you if you were able to produce any solid medical documentation- specigfic or unique symptoms - testing of any sort - abnormna;l lab values of any type - any medical proof - that confirms alimta toxicity in your case or is it more of a personal or medical opinion or suspicion at this time/ my moms oncologist insists to the point of dumping her that alimta is not the casue of my moms terrible deteriotration afterr recevinmg alimta/ this has put my father in a vetry difficult and outrageous position. bottom of the ninth and look at the position that my father is left in as far as my moms care. my mother is devastated over this blow up and ready to call it quits

pls help and reply ASAP

TYVM

rob

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I never had the chance to see the effects good or bad for ALIMTA.My debkins passed away hours before she was supposed to start this Treatment program. Her condition was worse than what I thought it was. Did a little research on Alimta Toxicity and found this;

http://www.alimta.com/professionals/saf ... avId=5.2.3

I hope this helps even a little to give you some info.Pm if I can help in anyway. Sending Prayers For Mom and Family.

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Rob,

I'm trying to find the biopsy report - so far no luck, but the CT results taken at the hospital which triggered the decision to do the lung biopsy. The CT was done on Aug. 2, 2005, the surgery was done on Aug. 4 and he died on Aug. 5. Also, you might see if your oncologist or pulmonologist would call Don's oncologist or pulmonologist. The oncologist is Dr. Robert Manges (317) 228-3393, and the pulmonologist is Dr. Robert Shapiro (317) 872-5591. I doubt they would take a call from you or your dad, but they probably would from another oncologist or pulmonologist.

Here's the CT report, and I'll keep looking for the biopsy report:

The lung fields demonstrate interval in severity of alveolitis. The current study demonostrates multifocal areas of alveolitis bilaterally several which are new from previous exam. The areas of involvement identified on the previous study having increased in severity. There is moderately severe atelectasis in the medial aspect of the left lower lobe stable from previous study.

Mediastinal structures demonstrate a mild pneumomediastinum with a small amount of air dissecting along the right aspect of the superior mediastinum. This is new from previous study. . . . .

Impression:

1. Increasing severity of alveolitis.

2. Small pneumomediastinum new from previous study.

3. Small pericardial effusion. This has decreased from prior study.

4. Small left pleural effusion which has decreased in size from previous study.

Again, his main symptom was SOB. He had no SOB at all for the entire two years until he took Alimta. The surgeon explained after the surgery that his lungs were very stiff (sound similar to what they are saying when they use the word "encased"). This "stiffness" was caused by the alveoli cells being destroyed and since the lungs could not expand, that's why he was having trouble breathing.

Ok. I'm going to keep looking for the biopsy report.

Rob, there wasn't a thing they could do to the reverse this, so even if that's what it is, I doubt very much there is a solution, but one of the two doctors above may have researched it further after Don's death, especially Dr. Manges.

Love you guys!

Peggy

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Rob,

I'm trying to find the biopsy report - so far no luck, but the CT results taken at the hospital which triggered the decision to do the lung biopsy. The CT was done on Aug. 2, 2005, the surgery was done on Aug. 4 and he died on Aug. 5. Also, you might see if your oncologist or pulmonologist would call Don's oncologist or pulmonologist. The oncologist is Dr. Robert Manges (317) 228-3393, and the pulmonologist is Dr. Robert Shapiro (317) 872-5591. I doubt they would take a call from you or your dad, but they probably would from another oncologist or pulmonologist.

Here's the CT report, and I'll keep looking for the biopsy report:

The lung fields demonstrate interval in severity of alveolitis. The current study demonostrates multifocal areas of alveolitis bilaterally several which are new from previous exam. The areas of involvement identified on the previous study having increased in severity. There is moderately severe atelectasis in the medial aspect of the left lower lobe stable from previous study.

Mediastinal structures demonstrate a mild pneumomediastinum with a small amount of air dissecting along the right aspect of the superior mediastinum. This is new from previous study. . . . .

Impression:

1. Increasing severity of alveolitis.

2. Small pneumomediastinum new from previous study.

3. Small pericardial effusion. This has decreased from prior study.

4. Small left pleural effusion which has decreased in size from previous study.

Again, his main symptom was SOB. He had no SOB at all for the entire two years until he took Alimta. The surgeon explained after the surgery that his lungs were very stiff (sound similar to what they are saying when they use the word "encased"). This "stiffness" was caused by the alveoli cells being destroyed and since the lungs could not expand, that's why he was having trouble breathing.

Ok. I'm going to keep looking for the biopsy report.

Rob, there wasn't a thing they could do to the reverse this, so even if that's what it is, I doubt very much there is a solution, but one of the two doctors above may have researched it further after Don's death, especially Dr. Manges.

Love you guys!

Peggy

peggy -

just a late nite short up date. no need for a search. I just spoke with my father and a family friend by phone. my moms condition is steadily declining. now we just wait for a miracle or that dreadded phone call

rob

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Rob And Bill, Saying Prayers For Etsuko. I know how hard this is from experience and I Pray that something Miraculous happens. I had The Dreaded Phone call at 3Am 1/23/2006. I pray thart you never get it and things will improve.

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