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Diane L.
Member Username: Diane_l
Post Number: 694 Registered: 12-2011
| Posted on Friday, October 11, 2013 - 12:05 pm: |
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Hi Everyone, I haven't posted for a very long time. I am 5 years post liver transplant in Nov. I posted this thread as a reply to someone on another forum, but I have modified it a little to start a new forum for liver transplant patients. I am curious to know the kinds of issues people have had with their medications. I have done really well from the transplant itself, but I have had lots of problems with my medications. Initially I was on mycophenolate and tacrolimus. My blood work was always good, but I started getting sicker and sicker and more and more fatigued last fall, and very severe tremors and headaches from the tacrolimus. I was taken off of it in Jan this year, and put on Cyclosporin. The side effects stopped within 2 or 3 days, and I felt MUCH better. But for the last 6 weeks I have been very very sick, with zero energy and I have lost 14 pounds in a month. I can barely look after myself. My creatinine levels suddenly spiked as well, as did my Cyclosporine trough levels. No one picked up on it. I keep close tabs on my own labs, and guessed that it was toxic side effects from the Cyclosporine levels. After 3 calls to the Transplant Clinic, suddenly they were worried, and my dose has just this week been decreased from 125 mg twice a day, to 100 mg twice a day. Today, I actually feel slightly better. This is the first time the clinic has dropped the ball, but I think part of it is due to a new nurse at the clinic that just doesn't yet have the experience. She has been very nice and I think was very sorry that she had not picked up on things before. Huge learning curve for her. These medications are very powerful and very toxic. But unfortunately we have no choice and we do need be on something for life. My surgery was sudden and urgent because of a viral infection, and I really knew nothing about Transplants before. Somehow i was under the impression that as we got better, the medications would be weaned down, and then we would be off them all together. But not so. Good luck to all of you who are having problems with your medications. It is very interesting to hear about other people's problems with their meds., and what has eventually worked for them. We all seem to metabolize these drugs differently. Take care. Diane
Diane Lewis Liver Transplant Vancouver General Hospital November 20, 2008 |
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ono
Member Username: Ono
Post Number: 171 Registered: 06-2009
| Posted on Friday, October 11, 2013 - 06:51 pm: |
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Actually a renown researcher claims that 20% of all liver transplant recipients do not need immune suppressions at all. Ongoing research will try to figure out eventually how to get it so we don't need it at all. In the meantime, I do know of two people who quit their meds and are doing fine. Not all can and I'm not suggesting you do but I do wonder if we aren't often taking more than is needed. |
ono
Member Username: Ono
Post Number: 172 Registered: 06-2009
| Posted on Friday, October 11, 2013 - 06:53 pm: |
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Actually a renown researcher claims that 20% of all liver transplant recipients do not need immune suppressions at all. Ongoing research will try to figure out eventually how to get it so we don't need it at all. In the meantime, I do know of two people who quit their meds and are doing fine. Not all can and I'm not suggesting you do but I do wonder if we aren't often taking more than is needed. |
Diane L.
Member Username: Diane_l
Post Number: 695 Registered: 12-2011
| Posted on Saturday, October 12, 2013 - 11:57 am: |
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That's very interesting Ono. I will do a little research. Have you been able to decrease your own meds? I would not do so without my Clinics blessing and close watching. They have told me of several people who came off their meds, but did not survive.
Diane Lewis Liver Transplant Vancouver General Hospital November 20, 2008 |
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Hostess Risé
Board Administrator Username: Rise
Post Number: 17871 Registered: 05-2003
| Posted on Saturday, October 12, 2013 - 06:51 pm: |
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Welcome back Diane and Ono
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Hostess Risé
Board Administrator Username: Rise
Post Number: 17875 Registered: 05-2003
| Posted on Monday, October 14, 2013 - 07:12 pm: |
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Diane- I am very sorry to hear about your recent experience. What do you think you can do to improve your health? I believe there should be more frequent blood testing. There are so many unknowns with food interactions, stress etc... We can never really know at any given time how we are absorbing our medications.
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Diane L.
Member Username: Diane_l
Post Number: 697 Registered: 12-2011
| Posted on Tuesday, October 15, 2013 - 11:58 am: |
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Hi Rise' It's nice to be back, and in touch with everyone. I am very careful with my health, I eat well and exercise regularly (other than the past 6 weeks) so just not sure what is going on. My medications are taken on time, and I have monthly bloodwork done. I will call my Transplant clinic to let them know I have had little change in the past week. I won't get my blood work results until later this week, but hopefully by now the Clinic will have the results. I hope to be on TP Buddies a little more often. I have missed everyone. I hope that you are really well. Take good care Diane
Diane Lewis Liver Transplant Vancouver General Hospital November 20, 2008 |
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Hostess Risé
Board Administrator Username: Rise
Post Number: 17880 Registered: 05-2003
| Posted on Tuesday, October 15, 2013 - 04:10 pm: |
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Thank you Diane Glad to have you back with us. Please look at the first forum for my new topic on detecting clues to possible transplant health issues.
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Diane L.
Member Username: Diane_l
Post Number: 698 Registered: 12-2011
| Posted on Wednesday, November 06, 2013 - 12:53 pm: |
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Thanks for your notes Rise' and Ono. I will look at your forum on detecting clues to transplant issues today Rise'. I am still not back to where I was health wise. The TxP clinic called me back in to see them last week. It is a 5 hour drive from my home. They were quite concerned and feel that my cyclosporine levels had gone into the toxic zone and that I was overly immune suppressed. So on top of that I caught a non-specific virus which seemed to attack my central nervous system. So once again my drug dose has been reduced. I am not getting worse now, but the recovery has been very slow.I have so little energy and I am still experiencing some of the effects of either the virus or of the medication. I have learned a few things through this process. First, I had no idea how much of an art it is in, in prescribing these Transplant Medication, as well as a science. I learned a lot that I had been unaware of. My respect for my Transplant team has risen even higher. Also because I live alone and suddenly was unable to do much for myself, it was the push I needed to get things organized so that if there is another big crisis, my bills are all set to be automatically paid, and I have put together a little booklet in my home so that my friends will know who needs to be contacted, and what things need to be done. That in itself might be an interesting forum topic, and when I have the energy I will post some of the things that I have done, and will be interested to hear what others have done. Take good care Diane
Diane Lewis Liver Transplant Vancouver General Hospital November 20, 2008 |
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