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rainbowmom (yeages)
Forum Leader Username: Rainbowmom
Post Number: 149 Registered: 11-2009
| Posted on Monday, March 22, 2010 - 04:57 pm: |
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Hi everyone. I thought that I would share this information because it was extremely useful to me. So, as some of you know, I had two blood clots in my new lungs at the end of January. Am doing much better, but am required to be on Coumadin for a year following the clots. This poses some difficulty when doing bronchs because of the risk of internal bleeding. Before the bronch, they take you off the Coumadin and put you on Lovenox so that your clotting is within a normal range to allow them to do the bronch safely. Then, after the bronch, you're on Coumadin and Lovenox injections until your PT INR numbers are a satisfactory number. I have been battling to get my PT INR numbers up to an acceptable number this time -- it has been almost 3 weeks on the horrible Lovenox injections and am up to 10 mg of Coumadin a night. This has perplexed everyone. However, we've just discovered what we think might be the answer: erythromycin can affect PT INR numbers. It might take longer if you are on erythromycin to get your numbers to an acceptable level in order to be able to take you off Lovenox. In fact, my GI doctor was worried about the other extreme i.e., we want to be sure that Coumadin is having the desired effect and because erythromycin interacts with Coumadin, they would like me to monitor my PT INR numbers every week. Just thought that there might be people out there with a similar issue, so I thought I would share my experience ... Love to all, Yeages
rainbowmom double lung tx january 15, 2010 inova fairfax |
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Karen R.
Forum Leader Username: Relivkaren
Post Number: 4242 Registered: 07-2007
| Posted on Monday, March 22, 2010 - 07:13 pm: |
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Yeages: Wow! That's a lot of monitoring. I used to take Biaxin (clarithromycin) prior to transplant, and it would have all kinds of effects on my other drugs. I know that the "mycin drugs or macrolides" have major interactions with other drugs. For many drugs they increase the amount that you absorb. Why are you taking erythromycin? Is it for motility reasons? I know that I was taking Biaxin for two reasons: as an antibiotic for my lung disease and then to help with my gastroparesis. This is really good information to know because many times drug interactions can be difficult to figure out. Everyone reacts differently to different drugs. I am glad that your doctors have figured out the correlation between your erythromycin and coumadin. Of course that doesn't help much when you have to have a bronch. That must be a little frustrating to have to go off the coumadin and then take Lovenox and then start all over again. But.....as I always say, "it's a small price to pay for being able to breathe!!!" Thanks for the great info!! I am glad that those blood clots are gone and you are healing just fine!! God Bless!
Karen Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006 Double lung transplant on Dec. 1st, 2009 Cleveland Clinic Ohio, USA Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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DAP1122
Forum Leader Username: Dap1122
Post Number: 1592 Registered: 05-2008
| Posted on Monday, March 22, 2010 - 07:54 pm: |
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Yeages, Due to clots, I was on Lovenox for the first month post transplant. 2 injections per day. Due to my drug insurance, I had to pay for these out of pocket and they were $13/each. After a long month of a severely bruised abdomen I went on Coumidin ...... I, too, had battles with my INR, by the time they got them at an acceptable level I had another U/S and then they decided to take me off blood thinners all together. The other difficult part was I was on low sodium, low fat and low potassium diets and then I had to also watch the "dark greens", etc to help control INR. I was truly eating cardboard.
New blog/web page - http://My2ndHeartBeat.wordpress.com DAP1122@Gmail.com Heart Tx - 5/11/2007 DAP Ohio, USA Link to the Transplant Buddies Calendar - http://www.my.calendars.net/2ndHeartBeat |
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rainbowmom (yeages)
Forum Leader Username: Rainbowmom
Post Number: 151 Registered: 11-2009
| Posted on Monday, March 22, 2010 - 08:42 pm: |
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Karen: I've been having GI issues (reflux), and my GI doctor prescribed Reglan, which helped. BUT then I discovered the lawsuits and the potentially irreversible side effects of Reglan. I understand that these side effects (essentially Parkinsons!!) only occur for chronic users of Reglan, but am not willing to take the risk (I know we sign on to many risks when we have a transplant, but this is one risk I am not willing to take if I can help it). So, after discussing with my GI doctor, we decided to try erythromycin, plus protonics. I take erythromycin and protonics in the morning when I wake up and in the evening before I go to bed, and just erythromycin before lunch and dinner. I take Reglan (10mg) at bedtime. It is definitely helping with the reflux issues. Am now trying to get myself off the Reglan at bedtime in the hope that just the erythromycin & protonics will get me to the right place! You're right, it's a lot of monitoring, but a small price to pay :-) DAP: I hear you about the bruised abdomen!! I cannot do the injections myself, so my poor husband gets to do it to me and he hates them as much as I do, if not more. I've been trying hard to stay away from the dark greens to get that INR number up ...!! the good news is at least we think we may have discovered the reason why it is taking the INR number so long to go up ...!!
rainbowmom double lung tx january 15, 2010 inova fairfax |
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Ripdog123
Member Username: Ripdog123
Post Number: 74 Registered: 08-2009
| Posted on Tuesday, March 23, 2010 - 12:37 pm: |
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I had to take lovenox in the beginning because of clot in my leg. Horrible stuff, very painful. I hope you get off it soon.
Jonathan Bowering Heart/Double-Lung Transplant Recipient March 17th, 2007 Cleveland Clinic New England Organ Bank Volunteer Donate Life, Organs Save Lives Sign up to be an organ/tissue donor today, visit: http://www.donatelife.net/CommitToDonation/index.php New England residents http://www.donatelifenewengland.org/index.html |
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Hostess Rise'
Forum Leader Username: Risa
Post Number: 12678 Registered: 05-2003
| Posted on Tuesday, March 23, 2010 - 01:36 pm: |
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Thinking of you Rainbow I hope your body starts healing quickly.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH If you have any questions about this website contact Transplantbuddies@gmail.com FaceBook http://txbuddies.com
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Meagan
Forum Leader Username: Newheart14
Post Number: 1061 Registered: 01-2009
| Posted on Tuesday, March 23, 2010 - 02:12 pm: |
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Yeages, Sorry to hear about what you are going through with your GI issues and blood thinners. Your hubby is a dear man for giving you the shots. I can understand how it would be hard on him. I hope you get rid of those blood clots very soon . Incidentally, I posted a link to this thread on the Drug Interactions With Immunosupressants thread as a cross reference. Interesting information. Hugs, Meagan
Forum Leader First Combined Heart-Liver Transplant Performed at Toronto General Hospital, Toronto, Canada February 14, 2008 Diagnosed with idiopathic dilated cardiomyopathy 1991 and eventual CHF Most of the immportant things in the world have been accomplished by people who have kept trying when there seemed to be no hope at all - Dale Carnegie |
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rainbowmom (yeages)
Forum Leader Username: Rainbowmom
Post Number: 155 Registered: 11-2009
| Posted on Tuesday, March 23, 2010 - 05:29 pm: |
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Hi everyone. I truly didn't mean to complain ...!! I'm sure you have all been through this (and worse?) too. To be honest, the regimen of erythromycin, protonics and Reglan has become second nature -- just add it to the rest of the meds am taking. The good news is that it's definitely worked to improve my GI issues - I think am much better on the regimen. My GI doctor says that bilateral lung transplant patients in particular suffer more from the GI because when they go into do the surgery, they upset the Vegas (sp??) nerve, and it takes some time for that nerve to heal. Most people find that their GI issues disappear after about 6 months or so. Am hoping this will be the case for me, and in the meantime, the regimen, knock wood, seems to be working. As for Lovenox, I can't say I love those belly shots but what I've learned is that quite a few women trying to get pregnant have to take the IVF shots and the Lovenox shots, so I figure I'm not that badly off after all. Once we figure out how much Coumadin I need to get to a therapeutic number, I think we should be good. Thank you all so much for your caring words and thoughts. And I hope this information is helpful to anyone in the same position as me! Lots of love, Yeages
rainbowmom double lung tx january 15, 2010 inova fairfax |
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Keith B.
Member Username: Kbloomer
Post Number: 19 Registered: 12-2009
| Posted on Tuesday, March 23, 2010 - 07:12 pm: |
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Yeages, I have had GI issues for years because of scleroderma. If you have any issues in the evening or when you lie down, consider taking your second protonics before dinner. I used to take it at bed time but would have terrible reflux when I laid down. My GI doctor told me it was less important to spread it out over the day than to take it so it helps. Good luck with everything.
Bilateral Lung Transplant 11-12-08 Brigham and Womens Hospital, Boston, MA Scleroderma, Pulmonary Fibrosis, Pulmonary Hypertension |
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