Apr 20, 2012 06:13 AM chrissyb wrote:

Sheila, the doc changed meds to Prednisolone and a cortisone cream to use topically.  We have taken Pulmicort out of the equasion as that is the offender so I should be feeling a whole lot better in a day or two.....................no, he is not going to release me yet at least for a few more days......his words........so it looks like another weekend in hospital.  He is finally taking it very seriously as it looks dreadful and was still spreading hence the change of meds.

He also informed me that I have a gene problem that puts me 5x more likely to throw a DVT than anyone else so I have now become extremely high risk....................I liked it better when I didn't know.....lol.............at least we now know where the problem for my DD1 came from and DD2 is also going to get tested. So that is a good thing.

Love n hugs all and I hope your days a good.    Chrissy

Apr 20, 2012 01:20 PM 3jaysmom wrote:

chrissy, im glad the found the source, and changed meds.. you need to be under care, till the rash starts to fade...

 Mac: im sooo glad the cough is gone.. was it a reaction to the rads, or do they even kno?????3jays

Apr 20, 2012 06:00 PM, edited Apr 20, 2012 07:43 PM by sas-schatzi

Chrissy -typing still bad typing b/c of no glasses---------please do not assum pulmicortt is the problem unless all symptoms disappear. When did you start pulmicort?  At same time as warfarin------before ----after. Still request to see PDR black box warning. Request that someone review with you --your drugs and this black box warning  I know you are congenial, I know you are a fighter. Too many errors.  You need to be like the mules from the Missouri state- state Motto ------"show me."  Your doc changed his mind. My guess is he either went to the PDR or to the Pharmasist. Surgeons are cutters, they uniformly dislike medicine. They pretty uniformly write a consult order for the Hospitalist or the PCP "to follow for medical management". So, whomever is following for medical management first ordered am antihistamine ---which was likely Benadryl or Diphenhydramaine--generic for Benadryl. pulmocort already has a steroid in it -----it's a combo drug. That's why I don't want you to be succumbed into believing that it is the offender. You need to be as proactive in this situation as possible. If c/w is the trouble maker it takes multiple days to get out of the system/ Meanwhile you continue to take it and the condition gets worse instead of better. I don't discount the genetic testing.   But you were previously on Clev(whatever--here we useLovenox. Until source is truly found. withdrawing w/c might be  a best approach. ------ and putting you back on a Low molecular weught Heparin-------Clev is in that gtoup WE have three. -Lovenox/arixtra/fragmin. The literature even discussed a heparin brudge. WHich means regurar heparin.  going to look up something. be back-----------------I know I sound bitchy-----it's politely called being a patient advocate. My docs knew like the "gambler" song. -----If I was on the scent of something They better cooperate-------Most loved it, about 2 couldn't deal with it.

Apr 20, 2012 07:55 PM Gingerbrew wrote:

Shiela I would always want you on my team!

Ginger

Apr 20, 2012 11:39 PM sas-schatzi wrote:

Ginger so sweet-thank you.

Apr 21, 2012 08:59 AM sas-schatzi wrote:

Chrissy Retreat retreat >>.yeah>>yes it dies sound like you are on track. Now one last thing >>>get those sheets changed to the Burn sheets or hypoallergenic sheets>>In your case your skin is hupersensitive right now. You can't believe the chemicals used to wash hospital bedclothes and washcloths/towels. The reaction to the sheets is a fairly common problem if patiemts skin is damp b/c of sweat. You dear sweet Chrissy are  rare. When you said the back of your leg looks like chopped liber. You are reacting to the drug and the sheets>>>>>burn sheet/hypoallergenic sheets.>>> weeping means skin is not intact, potentioal for infection>>>>burn/hypoallergenic sheets>>>> about this time I can hear you say Okay---okay I'll do it. Burn /hypoallergenic>>>burn /hypoallergenic. Now I hear you saying "stop already" burn/ hupoallergenic

 What is the genetic test you are having?

 Still confused by pulmicort being the offending agent------must be something in with the steroid i.e a perservative for example.  if rash in retreat and it's the only drug that has been removed, perhaps Hmmmm.

 Here we have a program where the pharmacist comes and does the discharge teaching on Coumadin/warfarin. It's very nice. It's the only drug that is taught by the pharmacist. It does indicate the "power" of the drug(couldn't think of another word). Ask if they have a similar program. If not ask the nurse for the usual discharge reading material on c/w so you can study before dc.Then all your questions can be answered. One of the most significant changes in recent years is the discussion re: grean leafy vegetables Things that have high vitamin K which can influence how c/w works. The previous teaching was to avoid all items high in vitamin K. It was then realized that many of these items had other nutrients that were very healthy. After study, it was determined that these items with vitamin K could be eaten, but the key was they had to be eaten regularly. So, if you are going to have a salad , have one every day. Have a list of foods with vitamon K and eat them "evenly throughout the week and your pt/inr will stay even too. Hope that made sense. Let me know what your literature says re: this and what your doc advises.

 Mac glad your cough is better . They can be so irritating and wear you out.

Apr 21, 2012 10:29 AM macatacmv wrote:

Good Morning Ladies, it is spring here is the NE USA. It is a little rainy today, but that is good since it has been too dry. I am appreciating everyday. 

 3jays, we don't know what caused my lung issue. At this point it seems the dr is just treating it to see if it will get better without long term complications. I am sure the rads (and all the other stuff my body has been through lately) irritated them. Just taking it slow.

Sas, my cough is better. I am coming off the prednisone and using the new flovent inhaler.I am to use the inhaler for a few weeks and then stop for a week before seeing the dr again. My body just feels so weird, tho. I know I am giving my lungs time to heal, but this is coming along very slowly. I have never had asthama or allergies. I am just so tired and have no energy right now, yet feel shaky and nervous. I make small goals for myself everyday and accomplish what I can. 

Glad to have you all to talk to.

Apr 21, 2012 02:19 PM, edited Apr 21, 2012 02:50 PM by sas-schatzi

"One-third of patients receiving warfarin metabolize it quite differently than expected. Research has shown that some of the unexpected response to warfarin depends on a patient's variants of the genes CYP2C9 and VKORC1. "

above quote from

FDA Approves Genetic Testing Labeling For Blood-Thinning Drug

ScienceDaily (Aug. 17, 2007) -

looking for more stuff-- be back

Although a variety of factors influence a patient's ideal dose of warfarin, the genetic variations in the CYP2C9 and VKORC1 genes reported by 23andMe play an important part. In January 2010 the FDA updated warfarin's label to say that information on these variants can assist physicians in selecting a starting dose of the drug. The agency also provided initial dosage recommendations for patients with different variant combinations. The FDA does not, however, require that genetic testing be done before prescribing warfarin.

Versions of the CYP2C9 gene known as *2 and *3 can slow down the body's ability to break down warfarin. This causes the drug's concentration in the bloodstream to decrease more slowly, so the patient needs a lower dose to begin with. Each T at rs1799853 indicates a copy of CYP2C9*2. Each C at rs1057910 indicates a copy of CYP2C9*3.

The normally functioning version of CYP2C9 is called *1.

Warfarin exerts its anti-clotting effects by inhibiting a gene called VKORC1 that is involved in vitamin K recycling. This in turn reduces the body's vitamin K levels, which translates into less clotting because many of the proteins involved in the clotting process depend on vitamin K in order to function.

Some people have a version of the VKORC1 gene that reduces its function even in the absence of warfarin. Like those with the CYP2C9 *2 and *3 variants, these people may also need less warfarin than people who do not carry this variation. Each T at rs9923231 increases a person's sensitivity to warfarin.

The variations in CYP2C9 and VKORC1 reported here are present at different frequencies in different populations. For example, about 20% of people with European ancestry have at least one copy of CYP2C9*2, but this version is rarely found in people with Asian or African ancestry. These prevalence differences at least partially explain why the ideal warfarin dose tends to vary by ethnicity.

A small number of people whose data indicates that they have CYP2C9*1 may in fact have a different version of CYP2C9. Some of these different versions may affect the body's ability to break down warfarin in the same way that CYP2C9*2 and CYP2C9*3 do.

TooK out bibliography --just way too long.

Apr 21, 2012 02:56 PM sas-schatzi wrote:

Question

Warfarin diet: What foods should I avoid?

Can you tell me what I should eat while I am taking warfarin (Coumadin)? What foods should I avoid?

Answer

from Sheldon G. Sheps, M.D.

Warfarin is a blood-thinning medication that helps treat and prevent blood clots. There is no specific warfarin (Coumadin) diet. However, certain foods and beverages can make it so warfarin doesn't effectively prevent blood clots. It's important to pay attention to what you eat while taking warfarin.

One nutrient that can lessen warfarin's effectiveness is vitamin K. It's important to be consistent in how much vitamin K you get daily. The average daily allowance of vitamin K for adult men is 120 micrograms (mcg). For adult women, it's 90 mcg. While eating small amounts of foods that are rich in vitamin K shouldn't cause a problem, avoid eating or drinking large amounts of:

• Kale
• Spinach
• Brussels sprouts
• Parsley
• Collard greens
• Mustard greens
• Chard
• Green tea

Certain drinks can increase the effect of warfarin, leading to bleeding problems. Avoid or drink only small amounts of these drinks when taking warfarin:

• Cranberry juice
• Alcohol

Talk to your doctor before making any major changes in your diet and before starting any over-the-counter medications, vitamins or herbal supplements. If you are unable to eat for several days or have ongoing stomach upset, diarrhea or fever, consult your doctor. These signs and symptoms may mean you need a different dose of warfarin.

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1. deAssis MC, et al. Improved oral anticoagulation after a dietary vitamin K-guided strategy: A randomized controlled trial. Circulation. 2009;120:1115.
2. Sconce EA, et al. Vitamin K epoxide reductase complex subunit 1 (VKORC1) polymorphism influences the anticoagulation response subsequent to vitamin K intake: A pilot study. Journal of Thrombosis and Haemostasis. 2008;6:1226.
3. Ford SK, et al. Vitamin K supplementation to decrease variability of international normalized ratio in patients on vitamin K antagonists: A literature review. Current Opinion in Hematology. 2008;15:504.
4. Valentine KA, et al. Outpatient management of oral anticoagulation. www.uptodate.com/home/index.ht... Accessed March 24, 2010.
5. Ansell J, et al. Pharmacology and management of the vitamin K antagonists: American College of Chest Physicians Evidence-Based Clinical Practice Guidelines (8th edition). Chest. 2008;130:160S.
6. Coumadin and vitamin K. National Institutes of Health. www.cc.nih.gov/ccc/patient_edu... Accessed March 24, 2010.
7. Vitamin K. Natural Medicines Comprehensive Database. www.naturaldatabase.com. Accessed March 24, 2010.

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Apr 21, 2012 08:54 PM macatacmv wrote:

thanks, shelia for all the info

Apr 21, 2012 09:52 PM QCA wrote:

Chrissy, I hope you'll be sprung Monday too!  I know the hospital's getting old now, but at least you're seeing some improvement and I hope everything's on the way up from here.

I've been all by myself this weekend, well, me and the dog, while DH is in the mountains on one of his beloved fishing trips.  Mind you, not that I've ever seen any fish returning with him!  He and some friends do the mountain trip this time of year, and an Outer Banks one in the fall, and they camp out.  I understand their "facilities" at this campsite consist of a porta-john, and I know from experience they'll come back grungy and DH's first thing at home will be a shower! 

DS and DIL are going to put DGS in daycare next month.  Yes!!!  It'll be 3 days a week and DH and I will have him 2 days which will be fine.  We'll be able to take some long weekends and travel a bit, and DGS will be around other children and have a lot more structure than he gets here, so it's to everybody's benefit. I do apologize to those of you who don't have the opportunity to see your grandchidren and I do love mine dearly, but keeping him 5 days a week for almost 3 years and dealing with bc at the same time has been hard. I want him to feel that coming to see us is a special thing, not his routine, and this is a start.

Hugs to all of you-

Kathy

Apr 22, 2012 01:30 AM 3jaysmom wrote:

ellisimo: i had to switch to xeponex also.. and i use it in the nebulizer, and the inhaler in the summer.. allergic asthma is my dx.. so, ck it out, mac.. it really does make a difference..

  been a crazy weekend, and its not over yet...

  we did get all our plants potted, and moved. Nearly killed mur.. i've been up tonight, in the middle of everything, i picked up my glasses, and they FLEW out of their holder.. finally, after working with an old pair all day, i found them BEHIND my BED!!!no way i looked there, first.

  every box we had packed, (and there's enough for 2 families, still.. they have to be opened.. every drawer, every closet, etc.. tommorrow will be another crazy day...

  i was so caught up in the insanity, i forgot TODAY  is our 21st wedding anniversary.. i really feel like a dog, forgetting it.. but, sure as rain, Murray showed up with two dozen yellow roses, tipped in red, this morning.. and here i was, fussing he was gone so long.. i really feel so guilty. im so glad he's so patient with me.. im one lucky girl.. and, when not taking the prednisone, i KNOW it!!!!

  we're going to ahotel on sunday, so i'll be on the sythyroid, and prednisone.. they come together for me.. i just hope i can balance it with Zanax, and be decent to him.. all of this chaos is killing me!!  i'll be glad to get away for 3  or 4 days!!!

  then, they start tearing the kitchen cabinets apart.. but i told the guy, im taking advantage of all this, and getting the house finally in order, before im doing anything else!!!!

  i hope you're well enough to leave monday, chrissy. will you be staying at DDs' for a day or two, to make sure?????...3jays

Apr 22, 2012 08:21 AM Marybe wrote:

Elisimo, Buying plants sounds like a lot more fun to me than paying bills and doing paperwork.   I bought some lily of the valley yesterday to plant after we get that tree taken out, which should be soon.   I already have lily of the valley in front, but it was easier to buy a few new plants than to dig it up and I know it will spread. 

Chrissy,   I have been on warfarin (coumadin until it went generic) for a long long time....I was trying to think how long.....7 or 8 yrs perhaps.  I doubt that I have that gene, but do know I get blood clots every time I go off of it for some sort of procedure which is why I am always happy when they decide I can put off anything that involves stopping it....got it after bunions, cataracts, even when I had the colonoscopy and endoscopy this Spring.   The reason I have to take it is because of that mexoma I have lodged in my pulmonary artery, which believe me it a royal PIA. You would think they would always put me on the lovenox or arixtra, but they don't even though I always ask when I go off the warfarin.  Fortunately mine have been superficial for the most part and I only had a DVT twice and then once the PE when the atrial myxoma lst broke loose.   You may end up with one of those little coagucheck machines like I have so that you can check your own INR at home.  This past week I was 2.8.    I did not ever alter my diet, although I do watch the alcohol comsumption.   My doctor told me that I did not need to change my diet since I told him I love veggies and salad, he said the medication would adjust to me.  Anyway, I know we are all different when it comes to this, just like the way we respond to treatment and I certainly hope they get you straightened out soon and that you get back home and can start concentrating on strengthening your new knee.   The Didn't have Penicillin allergy written on your records?....that is a bad oversight.  

3jays....sounds as if you are doing a lot, hope you aren't overdoing. Hopefully the hotel has cable and you can just relax and catch up with all your shows. I am assuming the dogs get to go with you.

One time the GP had me use an inhaler...it was that one in the purple container that you would turn to the day and then get a poof from.....after two days, my voice started going away and I quit taking it.   Now the ins co is always questioning me about asthma and I keep telling them I do not have asthma and never did.  I was having a problem due to plaster dust or something at the time and do have allergies, but do not have asthma.

Today I am going to actually do some things since yesterday I did nothing.....was just really tired and I think the Adriamycin is catching up with me.  But it is working so it is worth it.

Have a good day everyone.  Temp has really dropped here, but at least it's not raining.  Marybe

Apr 22, 2012 02:52 PM SoCalLisa wrote:

Welcome home, Kaara

Apr 22, 2012 05:06 PM chabba wrote: