This past weekend was a mixed bag of good and not so good. Martin and I enjoyed some time together with Scarlett and family and friends. Then yesterday I had a terrible day. Strange symptoms and pain, everything came crashing down. No idea what was going on. My Sats were 99%, my FEV1 that morning was really high 3.1L. So what was going on? I started to shake, and had cold sweats. No fever. Just agony. It got worse and worse. I ended up in bed, falling in and out of sleep.
It took me a while to figure out that I was having withdrawal from a pain killer that I am on, Oxycodone. What?! Are you serious? This is not happening? This is all I need!! I actually hate the drug. I don't like the way it makes me feel, but when I was in terrible pain, it helped me deal with it. The worst part of all this, is that I was never told that the dose that I am on could be so addictive. I had the understanding that it was such a low dose, that I could stop taking it when I thought it was time, and that would be that. So that's what I did. I stopped taking it, and this is what I got. Now, I have been in a lot of pain during the last 5 months, but I can safely say that this is some of the worst pain - withdrawal. Of course I read all about it, and figured out quite quickly that this could be a serious problem. This is why people can't get off them, the pain of doing so is unbearable to many people. Grrr....I don't need this!!
Anyhow, so as of now, I went back onto the dose that I was prescribed. As to alleviate the withdrawal. I don't want to do anything to harm myself, but I also want to get off these pills ASAP. I certainly feel like my team dropped the ball on this. That hospitals and clinics do not talk to their patients enough about the nature of these drugs. Again, I was always very careful when taking pain killers in the hospital since I did not want to become too sleepy and inactive. But I saw people that were on such high doses, for so long, that I think it hindered their tx recovery. And it seems like the doctors and staff do not pay any attention to the addiction that could result. But addiction never crossed my mind. I had no idea that the physical nature of addiction could be this powerful. I have NO emotional need for this drug. I don't like how it makes me feel, and only have used it when in extreme post operative pain, which I have experienced. Now all of a sudden I try to stop taking it, and my body goes nuts.
Needless to say I am frustrated to have this obstacle. I am also quite scared to start to come off the pain meds, now that I know how sick I can get. My body just seems so sensitive to everything after tx, its amazing. I try to stay focused and positive and recognize that this all takes time and it's all a process, but I also get down when things get set back like this. When I have little control and need to sit back and take it easy and wait until things settle down. I try very hard to think that this will pass, and it will be over, like all the other things that have happened since November 21st. But it's really hard sometimes. These seem to be some of the most extreme symptoms yet.
I have called my tx team and we'll see what the plan will be. I am sure I will have to go on smaller and smaller doses, and still experience withdrawal. I actually just want to make sure I can get off them, and then never take them again. It's not worth it! I feel like such a dummy that I took these pills in the first place. Certainly put myself in harms way, and set myself back.
As for other tx frustrations - since I seem to be on the topic - I am in the process of booking my 3 month assessment. The booking is all over the place, and it's giving me stress. Things like having my lung function done at 7am and seeing the clinic at 2pm. Those long days kill me, and keep me away from home. Obviously I am generally frustrated today and need to re-focus.
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My New Treatment: O to the 2
9 years ago
15 comments:
I'm sorry you're having such a stressful time. Keep telling yourself "this too shall pass". The phrase that kept me going and still keeps me going after my grandson passed away is "it is what it is". Certainly doesn't make anything better but it is a reminder to me that I only have control over so much. Tough for a control freak like me.
Oxy is the devil. The pure devil. I too think your tx team dropped the ball on this one. But I'm sure they'll be able to help you transition off of the drug in a safe manner.
Hang in there...
Hang in Natalia! I too was prescribed Oxy, but "luckily" I had a bad reaction to it and I had to be put on Percocet following tx. That's also addictive, but not in the same category as Oyx. I had to keep reducing the dose lower and lower and eventually just stopped it ... with no side effects!
You sound so much like myself ... I'd rather deal with some pain than be knocked out and unresponsive from the pain meds.
One other, 'heads up' ... I found I would have withdrawal from prednisone when the dose was lowered. It wasn't something that I could pick up on immediately ... I was very tired, somewhat depressed, etc. I did a lot of reading on the subject and withdrawal was exactly what it was. Not as painful as the Oxy withdrawal ... but emotionally it was difficult.
If you need to chat ... just let me know ... there are a lot of us out there that's been through the same thing!
:( I'm sorry to hear it.
Just remember, it is a physiological addiction, not a psychological one!
Try not to worry about it. Your body certainly doesn't need the worry!
Hey Nat!
That is so strange, I was on Oxycodone after my tx and it was my 'miracle' drug.. It helped me so much. I was on it for about 6 wks I think? Maybe a little less..
Drugs effect people so differently, that's for sure... I would think if you'd been on it for 5 months continuously, the team would have suggested a taper! I understand your frustration.. we admire our tx teams so much, when they disappoint you, it's frustrating. This happened to me with Prednisone once, my team didn't tell me to taper it and I woke up in TERRIBLE pain, couldn't even walk!
BUT sounds like you are doing wonderfully and this is for sure just a hiccup!
I'll be picturing you feeling relief and ease!!
ps- thank you for your sweet words on my post... you too, are an inspiration, my Cyster!!! I see your pics and how strong and wonderful you look already.. and feel so grateful and happy and giggle inside to see life's miracles taking place.
Love and hugs!!!
Natalie, this is not as bad as you are concerned it is. Oxycodone is generic Percocet to the commenter that said they took Percocet instead of oxycodone. Perhaps they were thinking oxycontin which is a more powerful drug than oxycodone. Anyway, pain killers have their rightful place and recovery can also be hampered by having uncontrolled pain. Addicts have trouble coming off the pain killers because they are psychologically addicted as well as physically dependent. The physical dependency, which is what you are facing, is completely treatable by a slow tapering of the drug. As long as you follow the doctor's instructions for tapering you should have little if any discomfort when you completely discontinue the drug. People keep going back to it because they have used it as a coping mechanism in their life, the physical dependency is easily treatable. The psychological addiction is a much harder battle to fight. Perhaps your tx team dropped the ball in not preparing you to expect to have to taper off the pain med but they did the right thing by making it available to you. It is inhumane to let a human suffer the agony involved with such a massive surgery when it could be helped, at least a little, with pain meds. It is part of their responsibility to offer you pain controlling measures and it is your right as the patient to receive those measures if you so desire. I am sorry you were not better educated about the medication but be assured as long as you do not rush the tapering process you will be just fine. Many people make ignorant statements about pain medicine and to be fair to them they probably base their assertions off of the negative rap the meds get due to their potential for abuse by addicts. Please understand those statements do not apply to you and your situation. You are an amazingly brave and strong woman and I admire the grace with which you have handled this journey. By the way, I have an autoimmune disease that causes chronic pain and when one treatment stops working for me I have used narcotics to bridge the gap until another treatment starts working. I have used them for far longer periods of time than you and have never had an issue with tapering off them. If the doctor tries to taper you too quickly your body will let you know and you should not hesitate to speak up so the tapering process can be slowed down. I am sorry you will not be off the med as quickly as you hoped but I promise it does not have to be a painful process. Best of luck as you continue your journey.
Blessings,
Jen
Hang in there girl! There will be crazy annoying clinc days. They never like to work on our schedules! As for the oxy, I am sorry you are having problems! I hate those strong drugs, but early on they are necessary. I stopped an anti-depressant abrubtly a few years after transplant and had MAJOR symptoms! It sucked. I hope your team comes up with a good plan for you to get off of them.
Love ya girley!
One more thing right Nat? But I know you - and you will be rid of that painkiller in no time. not a setback = just a bumpity-bump.
Thanks for your ocmment today. You totally surprised me! I cannot wait to meet Miss S!
Nat, not worth stressing over. You are on the right track with your meds.
The appointments move pretty quickly at TGH. Get your chest x-ray on a short break. Long breaks get a nice lunch, go for a walk, shopping or to a museum.
Trev
these drugs are really addictive sis. you will kick this in no time, since like you say, you don't like them (thank god) and have identified it. you are right, the team at TGH and St. Mikes should have identified it. You have been on serious pain meds for almost 2 months pre transplant and now 3 months post. long time for the body to get used to it.
love you sis.
Natalia,
You should NOT be beating yourself up no way, no how. I completely agree with Jen's comment, having taken pain meds as needed and bumping up against other's misunderstandings more than once (I had one pharmacist who really treated me like I was a criminal for taking oxy).
My doctor told me when I took oxy, "Don't ever let anyone discriminate against you, because you are taking it on MY orders, not because you're bored on a Saturday night."
Anyway, I believe you will be okay, just a bump in the road. I agree you should have been better educated, although I think you probably still would've taken it?? Idk
Love ya dear,
Take care,
Kerry
I'm glad a lot of your weekend was so good
There are different types of addiction....you are not an addict for sure! Your pain had to be managed in order for you to cope and recover successfully, both physically and psychologically. Sometimes when our pain isn't managed properly,it becomes so intense, that we then have 2 major issues....pain and recovery. It then becomes a struggle for our body...do we heal the body or the mind.(so to speak)Medication is kind of a "coping mechanism" that allows our body to work together to heal and protect us so all of our energy is directed at recovery. Pain medication is necessary not secondary!!!!I personally have had such terrible pain but thought I could handle it without pain medication and began to throw up and shake so badly that I then had to have an anti-psychotic to combat both.(The drug classification is both anti-psychotic and anti-emetic)Not having any sort of 'psychosis' to treat, I then had a scary psychotic episode that was very hard to handle and forget!Not to mention how hard it was for Glenn to witness.
You have overcome so much in your entire life that I know you can get through this too with your never-ending determintation and perseverence. Remember....baby steps...slowly your body will need less and less of this medication and eventually you can be weaned off of it. I have not been through a transplant however pain and pain medication have been a fact of life for me(and my family) for many many years! Allow yourself some grace. It's not like you made a conscious decision and became abusive with drugs along the way!It couldn't be helped...this was your only bridge to a successful recovery. Perhaps Yoga or relaxation methods could help. For myself, I went to an Accupuncturist(also Accupressure) and found it very helpful. For you, I would check first. As the saying goes"This too shall pass", and I know you will be feeling better once you have been able to come off of these meds and get back to just living your wonderful life with your wonderful family! Take care and I always have you in my heart and in my mind wishing you only the best!!!! P.S. I am a Pharmacy Technician who has worked in a hospital.
Thanks evryone. I knew I would get some good feedback here!
Yes, there is a difference between Oxycodone and Oxycotin. I am on the former, which is the same as percasettes. Today I feel better, since I went back on the long acting dose. Just a terrible day yesterday.
Thanks everyone!!
Nat,
You're doing great. CF patients, wheter they are pre or post tx tend to need pain meds to get us thru the day. I know, I am one of them. I for one cant take Oxy's because I dont react well to them. But I do need the help of Norco and Mortin almost every day for chest pain and scoliosis related issues. I hope to one day never have to take them again. I look forward to it. but for now, it is just part of the process. My doc actually told me that i have to lower my tolerence of the med that i am on now because if/when i am post tx i will be on strong meds that i will need to work for me. Something I am not looking forward to.
Hang in there. The pain will all be over someday, and you will finally experience everything that you have been working so hard towards!
~Angie
Natalia - sorry to read about the pain you've been in, but hopefully it can be resolved by going off the meds over time. Glad to read you're feeling a little better as well.
I finally got around to updating my own blog with a bit of info about you and Eva and and the importance of talking about organ donation.
Natalia, I must apologize for addressing you as "Natalie" in my previous comment. If complete strangers are going to leave long, rambling comments on your blog they should at least take the time to get your name right {{note to self}}. My apologies. Glad to read you are feeling better.
Jen
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