Monday, April 29, 2013

Medical Update-Peaks and Valleys

Its 9:12 pm

    Cold rainy day here in SE Michigan...sort of fits our crazy weather this year that is for sure.

Like to thank you all for your support of my interview with writer Jan Romes. I do have a giveaway tied to this interview if you have a Amazon account. Jan has graciously agreed to giveaway 3 copies of her e-book "Stay Close,Novac!" to the first three comments left. Hope we can find some readers out there who would like a FREE book! (Now if I just had a account myself...)

Been another up and down week here...

  Had another wonderful visit by our friend and journalist Amy Lange,who dropped off a badly needed shower chair for Lori. This was an item (along with a wheelchair) that we have been waiting approval on for quite a while now. Amy came in and visited with us for an hour..she drove from her house AFTER putting in a hard day just to drop off the chair. I can't begin to thank her enough for her kindness (as well as her mom,Judith).
  I also worked up the courage to reach out to Don Neilson,Amy Neilson's husband. I have written many times about Amy and her fight against breast cancer. Her openness and courage in sharing her story was an inspiration for this blog. She helped a LOT of people,including me,in understanding just what cancer is and does. While we are still fighting hard and hoping for the miracle,I know also I have to start preparing myself for the worst. There are so many emotions that rip across my heart and mind of the time when Lori will leave me for a much better place.
  They say we cry,not because we are sad our loved one is leaving but the fact that we being left behind. I think I can agree with that,I am so not looking forward to coming home to a empty house,no kiss at the door,no 'ploring,no laying in bed watching a cooking show...but I do find it bittersweet that even after Amy Neilson has left,she still is lighting a path for the form of her husband who I will be calling next week.
I have never spoken to either of them via in person or phone but I feel like I almost already know them,the kind of loving people they must have been. I know the upcoming months are going to be brutal but I also know I won't be alone,that my circle will surround us with love and compassion with our day comes.

  Its has been a pretty rough weekend...starting with Friday night at 1:00 am when Lori woke me with having to use the bucket...which was the first of six incidents,we haven't seen that since right before we had to have her admitted in March. We were up all night going through this...I had volunteered for a community project at work Saturday morning. I felt very bad that I had to call my manager and beg off because of what was going on...we started hydration early Saturday morning but the drip was soooo slow,too slow. I broke out another fresh I.V. line but still the drip was too slow. We called the visiting nurses who sent two nurses at two different times to try and solve our crisis. They changed Lori's port dressing but to no avail,the hydration took all day to administer two bags. I called off work to stay and administer the hydration,my work was very understanding.
 What really hurts about hours are very limited at my job. I used to be able to work 40 hours with no effort but the healthcare reforms have caused many companies to limit part-time workers to under 29 hours so they don't have to provide healthcare coverage. This means our income has been chopped badly and losing the four hours on Saturday will mean a smaller pay check...and I already had low hours to start with. Its a perfect catch-22....
  While this was going on Saturday afternoon,our neighbor Marlene (Crash's mom) came by and said there was a missing 5 year old girl in the neighborhood and the entire day watch of the Canton Police Department was out in force looking her..
  I walked outside as a police officer walked up and asked if we had seen her. Marlene suggested looking in the child's basement while I suggested they call out Poncho out of retirement to help look. That actually got a chuckle from the officer who said Poncho's owner and partner,Brian,was already working the case with his new dog,Hoss.
   After 30 minutes,the officer came by and said the girl had been her basement. Can't say I was surprised as Marlene is a good mom who can think like a detective...she was hiding in the basement because had gotten in trouble earlier. Just happy she was okay and safe.
  I ran out of gas by 9 pm Saturday night and was out like a light within 30 seconds.
Woke up and went to work on Sunday,Marlene came by and helped Lori get ready for a visit from her cousins who live about 45 miles from us. We thought they would be here by 11 am but they wanted to come later so they could overlap with my coming home.
  But since I didn't know this,I went and got gas,picked up our blanket from the dry cleaners and faxed out some important paperwork before heading home.
   It was 3 pm before I got home...but still had a lovely visit with Lori's cousins. But as they could see Lori was fading,they all left at 4:30 for their ride home.
  As I was hooking Lori up for another slow drip I.V.,Marlene came by and dropped off a dinner for me. Between that and some great pasta that our other friend Cheryl dropped off,it was the first back to back home cooking I had in months...and I was very grateful to them for going out of their way to help us. We really would be in a bind if weren't for Kathy,Amy,Marlene and Cheryl. Thank so all so very much...
  Sunday was rugged again....for the first time,I measured what Lori's fluid loss compared to her intake...she lost 55 oz versus 20 oz of intake. I should have taken her in the E.R. but she said she didn't want to go...
Today....we had our scheduled appointment with Dr. Johnston but no sooner had I hit Dixboro then Lori started having terrible pain...and it was getting worse. We had taken a Norco but this pain blew past it.
Got to U of M Cancer Center and went for labs....when the RN had a hard time getting a draw,it was then we learned we had the WRONG size tubing in her port. This was why we had such a hard time,but how two visiting RNs missed that,God only knows. The I.V. wasn't working as well because of the wrong tubing.
They completely changed Lori's dressing and got the labs done.
   Up to the clinic we went,Lori's pain is getting fact so much so,our visit was cut short as Dr. Johnston ordered us back down for a morphine shot and 2 full bags of hydration. God was with us again as we went down,the infusion clinic was getting full. But one of our nurses from local infusion clinic,Karen,saw us and instantly stepped in to help us. By now Lori is getting sick from the pain and I'm about to wheel her to the E.R. when finally after a 40 minute wait (it would have been longer w/o Karen) Lori was hooked up to a MS shot and hydration. We were there from 7:30 am til 4 pm.
   So we are now home...and I'm writing this and hopefully,you're reading it as well.

While I posted on my Wall about what was going on in the cancer library,a young man came in and wanted some books on how to tell a child about a parent's cancer. His wife just learned she has breast cancer and she looked shell-shocked. The husband was getting materials on how best to tell their 6 and 9 year old that their momma is pretty sick. I really hope she can beat it....

  I want to share this story with you all just in case you feel like helping this family. This man was shot in the head as he was getting ready to come home and was instantly blinded when the bullet went into head.
As wicked as you may feel you have it,there is always someone worse off then you...I hope you take the time to read Sean Kelley's story which you can see  right here.

Sean Kelley lost his sight when he was shot in the head in January.


Please keep the cards coming! They are a great morale boost to Lori!

Lori Sullivan
45249 Lemont Road
Canton,Michigan 48187

thanks for reading!

Feel free to drop a comment or pass along this blog to anyone who you feel it may help.

Wednesday, April 24, 2013

My First YouTube Video and some "Thank You's"

Its 12:51 am

   I finally uploaded my first video on YouTube....this is no mere Hitchcock or Uwe Boll masterpiece but a short film that screams "Oscar"!!!
  This is my cat,Derek Jeter....the apple of my eye.

Just want to say a special thank you to Theresa,your visit and gifts really have touched us tremendously. Those essential supplies will be used with a sense of gratitude and love.

Thank you as well to Cheryl,now if we can only remember how to mark those puzzle pieces!

Thank you to Evon and Laurel,those cards and letters really are welcome and the words inside are very special.

Thank you Brad,Arek,Yvette,Elaine,Amy,Michelle,Monique Powell and others for allowing me to share my blog on your pages. I am so very grateful.

Monday, April 22, 2013

The Glamorous Life (plus a Medical Update)

Its 11:42 am

   Its a cold brisk day here in SE Michigan. Its grey and overcast with some wind. I just got home from making a run to a local drugstore where I had to get a raised toilet seat for Lori. She is losing her muscle mass due to the fact she can't really eat any solid foods. I had her take a multi-vitamin and will do so every day,she lost a lot of ground because of the UTI and the chronic vomiting. But now with this pretty much under control somewhat,we can work on getting her back on her feet.

Its 10:41 pm

    Just finished her hydration (and then did Ginger's as well). The U of M have rolled out a new delivery system for hydration that has its ups and downs. First,the needles are now all plastic,this is good...they are smaller and easier to deal with and we don't need a sharps bucket anymore for putting our steel needles in.

The set up is actually a bit quicker as well...but the big trade-off is the time table for hydration. It has slowed down quite a bit which means a much longer time to deliver the fluid Lori needs. What was a 2 hour job now takes over 3.5 hours and that is even with the drip fully open. We are hoping to talk with the visiting nurse come Monday and see if we can get this straightened out.
 The raised toilet seat has also proved to be a real benefit,she can lift herself off with with little effort. This is important because you don't want to go to work wondering if your spouse might become stuck. It may sound a bit humorous but it really isn't.
 I was asked a question about what do we need....well besides a divine miracle,I was going to say "Nothing much". But as we have discovered,cancer is a very tiring and draining battle...and things you normally don't think about,they become very important. We go through trash bags,toilet paper,,dish soap,laundry soap,food like Boost/Carnation Instant Breakfast like nobody's business. I never really thought about it until I went down to our pantry and realized we are out of so many things we had stockpiled. Who knew,right? These are things the doctors and medical websites don't tell you about....

Friday found me heading back to the clothing consignment place "Green and Glamorous" for a second time.

I had already been once to drop off some items because we are now downsizing. We tackled the closet in the spare bedroom and found plenty to donate to Goodwill and to consign some Lori's nicer but older clothes. Green and Glamorous is run like a upscale boutique and you have to call and make an appointment so the owner can go over the items and see which ones will sell. I had called to set up a Saturday appointment but realized that I was working so I had to reschedule it. I asked if Friday would be okay but since the boutique doesn't accept appointments on Fridays,I thought I would have to go on a Monday. But the owner said she would take me,this was a real blessing to say the least. Lori and I finished tackling the closet and I loaded the car up.
  I got there at 12:30 pm and was led to the back office where I met the owner,Starr Hunt,of the boutique.She is both beautiful on the outside as well as the inside,she reminds me of one of Lori's old co-workers,a lady named Karen,whom we called "Big Moo" with much love. Karen was Lori's assistant when she worked at the Sak's outlet in Fairlane Mall.
  Starr was warm and very professional as we shared our stories,her store has been open for three years and has done very well because of the economy,women who want quality name brands yet at affordable prices have found that Green and Glamorous has both. Starr mentioned she is still working on creating several events to help market her store. I shared some of the ideas I have seen both on FB and Twitter. While the store does have a FB page,its not being used nearly as effective as it could it with only 297 "Likes".

But with Starr being the owner,buyer and event planner,one can see her plate is pretty thin. I mentioned that I would be writing about my very pleasant experience in her store and I hoped it help Green and Glamorous in the search engines! Needless to say,if you're in the Metro Detroit and are looking for a chic,hip women's boutique to shop at,head on over to Green and Glamorous in Canton.
  This week also had us scrambling to get our taxes done,this was a first for us,first time we did them on the last day possible and the first time I went solo over to see our tax expert Jennifer. Despite our mountain of medical bills,receipts and over didn't help garner a bigger return,in fact,we were like most of middle class America and got about half back compared to last year. Jennifer said many people were really stressing about getting their returns back and with the pay out dates being pushed back several weeks,it made for some nervous moments.
  When I asked about the economic recovery,she laughed and said she hasn't seen it based on the hundreds of tax returns she has prepared this year. She said we basically have known,we are getting less pay,we have watched our wages stay the same or less (because we work less hours) while the cost of living has gone up. Things are not getting better,Americans are just adjusting their standards of living. This is why even today we are seeing larger companies struggle to meet stockholder's expectations.
  It occurs to me that a key indicator about our economy can be found at your local tax expert,talk about having a finger on the pulse of the nation....
   I finally am happy to report that I'll be posting a NEW "8 Questions With...." this week. I'm pretty excited to say the least (but then again,don't I always?). I'm interviewing freelance novelist Jan Romes this time around,this will be my second time interviewing a published writer as I interviewed Joan Lemon back when I started this blog here.
  Well that is all I have for post,I'll be talking about the folly that was and is Boston.

Thursday, April 18, 2013

Remembering the USS Laffey

Its 12:17 am

    Just wanted to post this entry as a reminder of we all should always remember the heroes who fought and died for us during World War 2. I recently read about how a group of young people actually thought the Civil War was fought BEFORE World War 2!!
  Is it any wonder this country is so screwed up as a whole?

The video above is from History Channel's great (and very much missed) show "Dogfights". It is the story of the US destroyer USS Laffey (DD-724) which bore the brunt of a 50 plane kamikaze attack by the Japanese on 16 April 45.

File:USS Laffey DD-724.jpg

For those who can't spare the time to watch the video,you can read the story about the brave men who served on the Laffey here on its Wikipedia page.

Thanks for stopping by and I'll be back with a new update soon!

Monday, April 15, 2013

Medical Update on a Sunday.

Its 8: 16 pm

    Looking outside at a lovely evening,the young and old couples are out walking. Some have dogs,others are pushing carriages. If I wasn't so tired,I would saddle up and walk around the block a couple of times myself...
  Been a while since I posted a update....but I have been checking every day and I am stunned to see this blog has had 7,600 views so far. What is really cool is a lot of the old pages that got a mere a 5 or 6 views are now being looked at by the new readers. Until recently only my interview with Evon Cassier had garnered over a 100 views but I now see another 4-5 entries have also been been looked at over a 100 times and I thank you for that.

  We are still in this fight....trying to find a happy medium with Lori's meds,food and hydration.
Its not easy and sometimes the nerve endings get a little frayed...being two people with very little support leaves us bruised and tired. But you just have to swallow it down and keep going,keep trying different things to make life somewhat normal.
  The big problem this week was twofold,getting the right hydration and fighting off a painful urinary tract infection. Lori's heart rate has been elevated because she is throwing up so much,she is outpacing the gravity drip I.V. This means she isn't being hydrated quickly enough. We have been doing a bag of dextrose once a day plus the usual suspects like Boost,water and instant breakfasts. The UTI really made this so much worse because its so painful to urinate and when you get a I.V.,that is ALL you're going to be doing.
This led to several 3 am wake-ups to help with her being ill,cleaning up afterwards,changing clothes and getting her either ice water or juice. I have been getting less and less sleep...
 Dr. Johnston has decided to switch Lori to a potassium I.V. to help replace the fluids she is losing. I also had to run across the street for a lab kit to have a urine test done. After an hour of waiting,we were able to secure enough for the lab. The lab takes the urine and watches it for three days,seeing what kind of bacteria pops up. This normally takes up to 3 business days..but we were blessed in the fact a doctor took a look early and wrote Lori a scrip for an antibiotic.
  What makes all this a hurricane in a teacup is the fact I'm still working and I am getting stretched thin. As much I like to let Lori hydrate when I'm at work,I can't. Two of the medications she is taking causes drowsiness and you can't run a I.V. like that. You run the risk of having the I.V. finish and getting air in the bloodstream. You get what is commonly called "the bends" which is what happens to deep sea divers who surface too you can see why unsupervised hydration isn't a option.
 Trying to get a set routine is next to impossible but after talking with Lori about it,we decided to ask Marlene (Crash's mom) if she can learn how to help Lori get her I.V. drip going and sit with her when I have to work at night. She has agreed so this is a huge boost to us!
  I also got to chill with my buddy Big Al and had lunch with him. What was supposed to be a hour get away ended up being a 2.5 hour talk at the Big Bites Coney,a relatively new diner. We talked about our families and how people react to different problems.

The staff was very kind and we never felt any pressure to leave. Other then work,its the longest talk I have had with a human being other then Lori in so many months.
  The newest development is Lori is now sleeping downstairs because she too winded to climb. We think this will pass as soon as the new hydration plus a new anti-nausea medicine kicks in. She is already in a lot less pain because the antibiotic she is taking is working wonders. But needless to say,its doesn't feel good knowing she can't climb the stairs right now. I'm hoping her condition will improve this week.
  Tomorrow is Tax Day and this will be our first time that we have filed on deadline day. Took time to gather all the many receipts,driving journals and banking statements in order to give what we hope are all of our complete taxes. Last year we didn't get back very much and I'm suspecting we won't get that this year. But just glad that we are able to get this out of the way.
  Other projects are going okay....starting to downsize the closets now as well as throw/donate old magazines and clothes that we don't need,its a slow process but we finished one closet this week and am headed to the spare bedroom next week.
 Word is that the house of our old neighbors has sold for 179,000. They are a younger married couple who have a small mutt. Still no word on when they'll be moving in. Just hope they are decent friendly people. My feeling is they are going to be slightly bummed at all the work they'll have to be doing. But that is part of the joy of owning a house,right?

Animal activist and actress Elaine Hendrix has posted a new entry in her "Love and Compassion" video blog.
How about it? Has this series moved your heart? I find it refreshing that someone is using their voice/talent to raise awareness about animal abuse and unlike the animal terrorist group PETA,actually gives a shit about neglected pets and other animals.

   Saw a post yesterday that my old boss at the EDGE,Jimmy,wrote on his FB wall. Seems like his cat,Miles Davis,died in his sleep last night. By the way he wrote it,this came as a total surprise and he is pretty heartbroken about it. I mention this because I know we are getting closer to reaching a point of no return for Ginger. Still feeding her the "good stuff" and actually was more nervous hydrating her then I ever was with Lori! Go figure!

Well,that is all I got for now...thanks for reading and don't forget to leave a comment!

Thursday, April 11, 2013

Go Big Red!

Its 3:14 am

     Just wanted to share this amazing moment...7 year old cancer patient Jack Hoffman proves he has what it takes to overcome and beat cancer. Nebraska football player Rex Burkhead,who has become Jack's biggest fan,helped arrange not only a on the field experience but also a chance for Jack to show his running skills. Led by Nebraska's huge offensive line and a roaring Big Red crowd,Jack took the snap and sprinted 69 yards into the end zone (of course the Huskers could have used Jack last year against Wisconsin) helping the Red defeat the White team in the annual Spring Game.

Speaking as a San Jose State fan....I sure hope we get a chance to recruit this future All-American tailback at some point!

Special shout-out to Coach Bo Pelini,Rex Burkhead,the Big Ten Network and the awesome fans of Nebraska,the nation's best fans.

Wednesday, April 10, 2013

Medical Update: Losing half a family now..

Its 8:58 pm

     Chilly Saturday night in SE Michigan.....cold and grey,spring is having a hard time gaining a toehold in getting us a little warmer weather.
  The grass outside is still trying to kick start itself into action but finding the road a little tough...but the robin air force is having no problems finding and eating all the grubs they can handle. At anytime we have anywhere between 10-14 birds in the backyard on the perch looking for tasty treats.

  This week was a rugged one yet again for our household. Tuesday saw me take Lori's cat,Ginger,to the Lilley Veterinary Clinic for an exam. I had noticed that she had suddenly started drinking a great deal of water as of late and became concerned that it might be tied to possible kidney failure. Twice I was in the middle of making an appointment for Ginger when a sudden crisis brought about by Lori's cancer,had me hanging up the phone to attend whatever issue was popping up.
  Finally I able to make the connection and scheduled the visit.

Now normally before I have to take one of the cats to the vet,I have to hide the carrier in a bathroom the night before,otherwise I will have to scurry around trying to catch said cat and if its Derek,that is a not a fun time,he hates the carrier and while he has never once attempted to bite or scratch me,he does fluff up and hisses. Its better to have it in the bathroom so once they see it,they understand and will go inside.
  Our appointment was at 11:00 am,there was no one waiting and we were whisked in. Ginger was a total lady and after coming out of the carrier,sniffed the room and curled up under my feet.
  She weighs 7.1 pounds...I can feel the fear in my gut,its going to be kidney failure....we wait and wait and then meet Dr. Aubrie King. She is young (or I'm old) but compassionate. She tries to divert my fears about Ginger saying there is a "host of other things that it could be and we have options".
  We decide to do a blood work-up. Lori and I talked about how we would handle the cost of this if it went south. We don't have very much money,especially now with her being off work and my hours being cut. We love our cats but we also know our limitations. That said,I went ahead and asked for the blood test.
While we were waiting,I had Ginger's nails clipped. She purred and headbutted me..she was a good girl when she got her nails clipped.

20 minutes later Dr. King came back....and said "I'm very sorry,its the kidneys after all. You were right".
And its a early stage 4 failure,Dr. King said she will be treating Ginger as a hospice case. I can't believe this,as I told a co-worker,you can't make this stuff up...I have to tell my own advanced cancer stricken wife that now her kitty is also going to die as well.
  But for now she is going to come home and I have to do hydration for Ginger as well. She also gets to eat wet catfood which neither cat has had since we have had them. This portion has unleashed a inner monster as Derek has discovered that he loves Fancy Feast. The routine is this...I put food down in bowl for Ginger,I let her eat as much as she is able. I have to put Derek in the spare bathroom or else he would push her off the food.
Normally I would just cover the leftover food for Ginger but since the smell of the food is too strong for Lori to handle,whatever Ginger doesn't eat,Derek gets. He cleans every morsel off the floor...
 I also agreed that we should give Ginger a B-12 shot and Dr. King gave that to her as well. 156.00 later,I loaded Ginger up and we headed the 2 miles home.
  Lori was resting upstairs when we got home,I set up the gravity I.V. and then told her what was going to happen. I feel like a bringer of doom and destruction as of late...I am forever telling someone in Lori's family or her co-workers what is going to happen...and also to her as well. It really wears on my heart and soul..
I explained to her what the vet said....and that we'll take her back in a month to be rechecked. Personally I don't think it will be that long....this weekend I'll start to build a box and find a fitting place in our yard to bury   Ginger.
Its 1:37 am on Wednesday...

   Been trying to find time to post this....but the past few days have been rugged. Lori's pain is increasing and I spent several hours trying to get her Norco (pain med) refilled. Finally got done with help from our visiting nurse.She has lost 15 pounds in two weeks.....

Please keep the cards coming....they are a huge boost.

Lori Sullivan
45249 Lemont Road

Please feel free to drop a comment or more importantly,share this blog with others who might like to read it.

Sunday, April 7, 2013

Guest post: Far more could be done to stop the deadly bacteria C. diff

Its 9:37 pm

Thought I would share this article from the USA TODAY newspaper about the terrible and vastly under reported demon that is c. diff. This bacteria is a real bane to so many people and has really hampered Lori's effort to regain her strength. We are taking the strongest antibiotic known to stop c. diff but since the body quickly builds up a resistance to this drug,its incredibly risky to use it long term. 
This is a blog that you truly need to share with your friends,family and even strangers.
I'll be back later this week with a new post.

Comments are most welcome.

Article written by USA TODAY journalist Peter Eisler
Just days after doctors successfully removed a tumor from Bailey Quishenberry's brain, the 14-year-old was spiraling downhill, delirious and writhing in pain from an entirely new menace.
  • Bailey Quishenberry, suffering from a Clostridium difficile infection, marks her 15th birthday on June 12, 2011, in the hospital.
    Family photo
    Bailey Quishenberry, suffering from a Clostridium difficile infection, marks her 15th birthday on June 12, 2011, in the hospital.

Family photo
Bailey Quishenberry, suffering from a Clostridium difficile infection, marks her 15th birthday on June 12, 2011, in the hospital.

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Her abdomen swollen 10 times its normal size and her fever skyrocketing, Bailey began wishing she could die, just to escape the agony.
Bailey had contracted a potentially fatal infection called Clostridium difficile, or C. diff, that ravages the intestines. The bacteria preys on people in hospitals, nursing homes and other medical facilities — the very places patients trust to protect their health.
A USA TODAY investigation shows that C. diff is far more prevalent than federal reports suggest. The bacteria is linked in hospital records to more than 30,000 deaths a year in the United States— about twice federal estimates and rivaling the 32,000 killed in traffic accidents. It strikes about a half-million Americans a year.
Yet despite a decade of rising C. diff rates, health care providers and the government agencies that oversee them have been slow to adopt proven strategies to reduce the infections, resulting in tens of thousands of deaths and illnesses that could have been prevented, the investigation shows.
"People are dying needlessly," says Christian John Lillis, a New Yorker who lost his 56-year-old mother, Peggy, to the infection two years ago. "It's outrageous."
Indeed, while the medical community has cut rates for virtually all other health care infections in recent years, C. diff hovers at all-time highs.
"Looking at the data for C. diff and looking at what's being presented at infection control meetings, we're not doing a very good job," says William Jarvis, who spent 17 years heading the health care infection division at theU.S. Centers for Disease Control and Prevention. "We know what to do (to lower rates). It's not rocket science. And we know the barrier is cost."
To assess the C. diff epidemic, USA TODAY conducted dozens of interviews and reviewed an array of state and federal data, government studies and academic papers. The reporting revealed:
Deaths and illnesses are much higher than reports have shown. In March, theCDC said in a report that the infection kills 14,000 people a year. But that estimate is based on death certificates, which often don't list the infection when patients die from complications, such as kidney failure.
Richard Gerald Croke Jr. died at 48 after a C. diff infection, which can strike individuals at any age.
See a gallery of people with C. diff infections who died.
Hospital billing data collected by the federal Agency for Healthcare Research and Quality shows that more than 9% of C. diff-related hospitalizations end in death — nearly five times the rate for other hospital stays. That adds up to more than 30,000 fatalities among the 347,000 C. diff hospitalizations in 2010. Thousands more patients are treated in nursing homes, clinics and doctors' offices.
"We're talking in the range of close to 500,000 total cases a year," says Cliff McDonald, a C. diff expert and senior science adviser in the CDC's Division of Healthcare Quality Promotion. And annual fatalities "may well be … as high as 30,000."
Health care facilities have stopped short of doing what's necessary. Many hospitals and nursing homes lack programs to track and limit the use of antibiotics that allow C. diff to thrive. And studies show that patients' rooms often aren't cleaned sufficiently.
During the recession, many health care facilities cut spending on infection control and housekeeping, and they often lack a tightly coordinated approach to track and kill the bacteria.
C. diff is "a big concern," but limited Medicare and Medicaid reimbursements strain budgets, says Nancy Foster, the American Hospital Association's vice president for quality and patient safety. "Nurses on the front line, pharmacists that provide crucial medication, therapists that provide hands-on treatment, cleaning technicians that need to be there to keep rooms clean and infection rates down — there's no good place to cut."
Other countries are racing ahead of the U.S. in battling the bacteria. In England, the government requires hospitals to report all C. diff cases, underpinning a regulatory campaign that has slashed infections more than 50% since 2008. A new C. diff reporting rule for U.S. hospitals isn't scheduled to take effect until 2013.
England and other European countries also require health care institutions to have antibiotic control programs and meet targets for reducing C. diff. There are no such rules for U.S. facilities: The federal government doesn't track antibiotic use in hospitals, nursing homes and other care settings, and there is no penalty under Medicare and Medicaid for facilities that have high C. diff rates.
Thirty-four states now require hospitals to publicly report their rates of infections, but fewer than a quarter of those include C. diff, according to an analysis by Julie Reagan at HAI Focus, an organization that studies health care infections. Reporting requirements for nursing homes are even less common.
In 2009, the U.S. Department of Health and Human Services launched an "action plan" to reduce six high-priority infections, including C. diff. Infection rates for five of those have dropped significantly, including methicillin-resistant Staphylococcus aureus, or MRSA.
Rates for C. diff, targeted for a 30% reduction by 2013, haven't budged.
"As it relates to C. diff, absolutely, we have a lot of work to do," says Don Wright, deputy assistant secretary of health and leader of the prevention initiative. "It's important to take lessons learned. … We will begin to see a reduction if those are followed closely."
One lesson came in 2003.
That's when the Environmental Protection Agency, which regulates hospital disinfectants, learned that none of its approved products actually killed C. diff spores — though many claimed on their labels that they were effective against the bacteria. Five years passed, with C. diff rates skyrocketing, before the agency ordered manufacturers to remove the claims and began to identify new disinfectants that work.
"The agency blew it," says Jim Jones, EPA's acting assistant administrator for the Office of Chemical Safety and Pollution Prevention, which handles disinfectant regulation. "We missed something we totally had the capacity to catch."
'I couldn't move'
Like most C. diff patients, Bailey Quishenberry's symptoms began with severe diarrhea. Within days, her intestines were shutting down. Her colon was so swollen that it pushed pressure up to her lungs, making it difficult to breathe.
Bailey's doctors at California's Loma Linda University Medical Center diagnosed her with toxic megacolon, a sometimes fatal complication that often requires removal of the colon and use of a colostomy bag.
"It was so painful, I couldn't think, I couldn't keep track of what I was saying. … I couldn't move," she recalls. "It was like … 'I wish this would be over and I could just die.' "
With a colectomy looming, Bailey's mother, Shannon, persuaded the doctors to try an unusual alternative, a fecal transplant. The goal is to repopulate the colon with healthy bacteria by implanting a feces from a relative, often via a colonoscopy or enema. Within days, Bailey's blood white cell count fell, the swelling in her abdomen receded. After a month in the hospital, she was allowed to go home.
Bailey's ordeal would continue, but she survived. Many patients aren't so fortunate.
Regina Mulligan was diagnosed with C. diff after entering a New York hospital for heart surgery and died from complications three months later at 83.
"When someone you love goes in for something like heart surgery, you don't expect that they'll die from an infection because they are in the hospital," says Mary Schultz, Mulligan's daughter. "At one point the doctors told us that she had C. diff, but no one ever explained what it was or told us how deadly it could be."
Kimberly Ratliff's baby girl, Charlee, lived only eight months before dying with the infection in 2010 after heart surgery. The medical community doesn't talk about C. diff because it wants to downplay the problem, she says.
"I wish doctors were more forthcoming. … You don't learn about it until after it's too late."
How to attack the problem
There's no mystery to cutting C. diff rates.
The spore-forming bacteria exists throughout the environment: water, soil, human and animal feces. It typically sickens people taking certain stomach medicines or antibiotics, which diminish healthy bacteria in the gut as they attack infections. When levels of healthy bacteria get low, C. diff can take over, producing toxins that cause intense diarrhea, often with grave complications.
The germ thrives in settings where antibiotics are in wide use, and its proliferation has accelerated as a new, hyper-virulent strain has emerged over the past decade. C. diff spores spread through fecal contamination: They get on people's hands, often from bathroom fixtures, and move to other surfaces by touch, from light switches to bed rails to tables and trays. The tough-to-kill spores resist many disinfectants and can survive for months. Once they're on patients' hands, it's a short trip to their mouths — and their intestines.
The challenge is twofold: Control the use of antibiotics that allow C. diff to flourish, and prevent the bacteria's spread from infected patients via dirty hands, dirty rooms or dirty equipment.
Some U.S. hospitals have confronted those challenges head-on:
•In Cincinnati, The Jewish Hospital-Mercy Health slashed its high C. diff rate by half in less than a year by adopting stricter antibiotic controls and new room-cleaning protocols. The program costs the 209-bed hospital about $10,000 a year.
•In Pittsburgh, the 792-bed UPMC Presbyterian cut C. diff 71% from 2000 to 2006 with new cleaning protocols, better identification and isolation of infected patients, and antibiotic controls.
•In Oak Lawn, Ill., the 695-bed Advocate Christ Medical Center reduced C. diff cases 55% by retraining housekeepers, coordinating care with infection prevention specialists, and adopting new disinfection standards for high-touch areas.
Although such strategies are well documented, many facilities don't use them, says Wright, the head of the federal infection-prevention initiative. "One of the tasks at hand is to ensure that these practices that have been shown to have success are broadly disseminated and broadly applied."
Standing in the way are concerns about costs, staffing and the complexity of creating and implementing new procedures that require interdisciplinary teams to work together.
Hospitals have cut housekeeping budgets up to 25% in recent years, according to the Association for the Healthcare Environment, an arm of the American Hospital Association. And the group's surveys show that many hospitals spend as little as 18 minutes cleaning a patient's room. That's well below the 25-30 minutes the group's studies have identified as optimal.
There is also limited tracking of antibiotics. In 2010, about 42% of infection control specialists nationwide said their facility had no antibiotic stewardship program, based on a survey by the Association for Professionals in Infection Control and Epidemiology. Such programs typically track the use of antibiotics to ensure proper use, which can reduce opportunities for infection.
The challenge is more daunting in nursing homes, where antibiotics are prolific, staffing often is thin and it's tougher to isolate patients.
'All hands on deck'
Three weeks after Bailey Quishenberry left the hospital, her symptoms returned — diarrhea, high fever and white blood count, distended colon. She went back in the hospital for another eight days and, after another fecal transplant, her symptoms subsided and she was released again.
During those weeks at Bailey's bedside, her mother, Shannon, became a self-educated C. diff expert. She got her own bleach wipes to clean Bailey's room. She made sure visitors wore gowns and gloves. She enforced hand-washing rules.
As hospitals and nursing homes struggle with tight budgets and limited staffing, patient advocates say its critical that the public become more engaged in minimizing infection risks.
"We need all hands on deck, including patients," says Pat Mastors, whose father, Bob Stegeman, died at 76 after developing toxic megacolon from C. diff. Mastors was "shocked" when she learned how common the infection is, and she helped pass a Rhode Island law requiring hospitals to advise patients on protecting themselves.
"Hospitals don't want to tell patients the room might be contaminated," says Betsy McCaughey, founder of the Committee to Reduce Infection Deaths. The committee prints cards with steps patients can take to minimize infection risks, and they offer the cards free to hospitals, McCaughey says. But "many hospitals don't want them."
Money, staffing challenges
The big challenge in curbing C. diff is getting all the players to work together — from health care administrators and the government regulators that guide them to doctors and nurses and the housekeeping staffs that clean up behind them.
"We're kind of in the early stages in a more coordinated response," says Arjun Srinivasan, associate director of the CDC's Healthcare Associated Infection Prevention Program. "There are simply many, many more moving parts that have to be addressed."
Other health care infections have been stemmed by ensuring that certain medical procedures are done properly. Catheter-related infections were cut by getting doctors to change protocols for installing the devices. Infections linked to surgical incisions and ventilators were reduced by getting doctors and nurses to alter practices.
Strategies to combat C. diff are more complicated and costly. Successful initiatives often require interdisciplinary teams. Pharmacists tackle antibiotic protocols. Medical staff look at how infected patients are isolated and handled. Environmental-services supervisors review cleaning practices. And administrators have to deal with the costs.
Though infection control programs are shown to save facilities money in the long run, Jarvis, the former CDC infection control chief, says administrators often balk at the upfront investments because they worry about operating margins.
"Saving money is not the same as making money," he adds.
Meanwhile, "a lot of opportunities are being missed," says Christian Lillis, who set up thePeggy Lillis Memorial Foundation with his brother, Liam, after their mother's C. diff death to help curb infection rates.
In a 2009 survey of 2,000 infection prevention specialists from U.S. hospitals, 41% said their facility had cut spending on infection control. In a 2010 follow-up by APIC, 53% said their institutions were taking new steps to cut C. diff, but most said more staff was needed.
The C. diff reporting rule that takes effect next year should spur facilities to boost their efforts, says McDonald, the C. diff expert at the CDC.
"Having people track these data and report probably does the most to move this whole (prevention) yardstick forward," McDonald says. Healthcare facilities "care about their reputation."
But there are few other regulatory incentives for facilities to improve. The U.S. Centers for Medicare and Medicaid Services has begun reducing reimbursement to hospitals for care tied to certain health care infections it deems preventable, such as those related to catheter use. But C. diff is not on that list.
It's difficult to hold facilities accountable for C. diff because it can be impossible to know where a patient was infected, CMS spokeswoman Ellen Griffith says. With patients moving between hospitals, nursing homes and other health care settings, a case diagnosed at a particular site may not have been contracted there, she adds.
That hasn't been a roadblock in England, where hospitals must meet strict targets for reducing infection rates or face sanctions. In fiscal 2011-12 through March, the country had just 18,000 C. diff cases — 17% below the prior year.
The British experience "has shown that substantial reductions are possible," says Don Goldmann, senior vice president at the Institute for Healthcare Improvement and a professor of pediatrics at Harvard Medical School. "We can do better, and we really need to."
A 'transformation' for Bailey
Last August, three months after Bailey's C. diff ordeal began, her symptoms returned a third time. She got another fecal transplant — it often takes several — and improved steadily.
By last fall, Bailey's colon size was normal, her white count good, the fevers and nausea less frequent. Her gastroenterologist was impressed, telling her he'd never seen such a severe C. diff case where the patient's colon wasn't removed. In March, Bailey finally returned to school after missing six months. In April, she played Eve in an Easter play.
"We see such a rebirth in our young lady," Shannon wrote this spring in the final entry of an online journal chronicling her daughter's illness. "It is an amazing transformation."
At Loma Linda medical center, C. diff rates have declined and officials continue taking steps to reduce them, including changes in room-cleaning procedures, antibiotic controls and testing protocols for patients showing C. diff symptoms.
"We formalized things we were already doing and started adding new things," says James Pappas, patient safety officer. "We've seen our rates drop in half, so that certainly makes us happy. But … if you're having one case a year, that's still a problem."
Last month, Bailey and her family went on vacation. She kayaked, hiked, swam. But Shannon kept C. diff medication close at hand. The infection still lurks in Bailey's gut, held in check by the healthy bacteria that have come back to the fore.
"I still worry," Shannon says. "If Bailey starts to get sick, she goes to deathly ill immediately.
"For us, it will be a lifestyle forever."
Contributing: Hannah Morgan

Thursday, April 4, 2013

Rolling Update...

Its 7:54 pm

    After a brief fling with spring,we are headed back down into the lower 40s as April has landed here in Detroit. The weather is indeed very chilly and add in some windy gusts and its still hoodie wearing time.

Hope everyone had a most relaxing Easter with friends and family this year.

Our Easter was an overwhelming happy one to say the least. On Saturday Marlene (Crash's mom) came down for a visit. We had just started our first session of the gravity I.V. when Marlene rang the doorbell. So we were just starting to chat when I looked up and was very pleasantly shocked to see Detroit's best journalist and my friend Amy Lange walking up to our door. Now while Amy and I have emailed,tweeted and exchanged cards between us,we had actually never met in person until Saturday.
  I opened the door and invited her in and introduced her to Lori and Marlene (who was pretty amazed that we knew Amy). Amy had made Lori a cute basket for Easter,including a pink Detroit Tiger's cap and 2 six packs of Boost. We all sat down and had a freestyle session of "Let It Rip" in our living room. Amy stayed and talked with us for 90 minutes,she really is a beautiful human being and as I have said so many times,Detroit is so blessed to have journalists like Amy here. Not only for the stories they share with us but also for the community outreach that so many do for the citizens of this area.
  Right after Amy left,Marlene had to run as well....which was good timing as Lori got ill again...but we continued the I.V. drip until it was all done.
   Sunday morning I had to work,it was sluggish at the it made for a longish day. I drove home and as I pulled up in the driveway,our neighbor Kathy dashed over and wanted to know if she could drop something off for us...which turned out to be another Easter basket filled with more things for Lori to try and eat and even a couple of jellybeans for Derek and myself...(I eat them,he swats them across the room)
  As I helped Kathy bring in the basket,our friend Cheryl also had dropped off a pair of baskets filled with jello,vanilla pudding and other items. We were so grateful to say the least..

We usually exchange baskets but because if what is going on,we just didn't think we would be able to do anything this year...but some seriously nice people sure brightened up our day!
 Late yesterday we decide to just take a drive...Lori was feeling down because she hadn't been feeling well enough to go outside. We got her all bundled up nice and warm and just took off...we were out for a good 45 minutes driving through Canton,Salem,the boonies out near Ann Arbor before heading back through Plymouth.

 Sunday night saw me checking my work schedule and realizing I had flipped my days...I had to work early on Monday and late on Tuesday! This prompted a last second call to Lori's cousin's wife Bonnie to please help us and get Lori to Ann Arbor. Bonnie was able to step up huge and picked up Lori at 7:20 am
But it was during the middle of the night that I was awaken by her crying...she was crying because she feels so bad for me...because of my very bumpy life and she felt she was adding on to it. Nothing more could be further of the truth...I love my life here with her and even now in the dark days,I love her even more.We have both overcome some tough times but then again,don't all good couple do? I like to think so...I held her tight and we talked for about 40 minutes before she was able to go back to sleep..

The doctor's visit was pretty good....good blood results,her heart rate is much better and Dr. Johnston told her to drink some food once every 3-4 hours. We also are going to get a new nausea medicine this week as well. The new chemo drug we are taking for the past 3 weeks is called Tamoxifen which we take twice a day. By clicking the link,you can learn what and how Tamoxifen works on stopping the tumor's growing. We were told today that it will take another 45 days before the oncology team knows if the treatment is working.
 We won't see Dr. Johnston for another 30 days.
Our outing today is a common theme among too many families facing these life changing illnesses and that is finding money to help keep you afloat. We are no different and with Lori not being able to go back to work and I'm saddled with only a part-time job,resources are a bit thin so to speak..Lori suggested she sell off her old broken gold jewelry and silver dollars she had gotten when she was a kid. I reached out to a guy whom I had met a couple of years back whose hobby was looking for discarded/unwanted gold pieces. After getting a good lead from Sam,I told Lori...and this afternoon that is where we headed. We headed to Star Jewelry which is run by a very nice couple from Lebanon and was only a couple of miles from us.

 The shop was beautiful,the glass display cases were packed with lovely rings and necklaces,braclets,etc..all which were made handmade by the owner,just amazing craftsmanship which is slowly fading away in these days. We presented our small bags of gold and silver to be priced. It didn't very long to sort through and after agreeing on the price,they paid us and we headed out to the bank.
  We then decided to go to Sam's Club to see if the price of Boost was better at a bulk rate. We got there at about 5:30 and I went and got a wheelchair. The store wasn't really all that busy and we found the Boost pretty easy,we bought a 24 pack and continued to shop. We ended getting some soup for Lori,a huge pack of ground beef for me as well as some lunch meat. Not very exciting on paper but trust me,we had a ball!

Its 6: 44 pm on Friday.....need to post this now.

I see I got another reader....thank you very much for adding your name...