29th October 2007
Hello Everyone,
Many of you remember that I (Conductor) was recently in the hospital due to a fall that occurred on June 1, 2007. I endured a right basilary skull fracture. We don't know if I had a bleed that caused me to fall and crack my skull or if I fell and landed on my head, which caused the bleed.
Part of the medical difficulty was that I was taking Coumadin due to my Lupus Anticoagulant diagnosis.
THE PAIN PROBLEMS?? If I did not have my Mom there to help me, I cannot imagine the withdrawal types of problems I would have gone through. Normally, I use the Duragesic (Sandoz generic) Patch 75 mcg that I change every two days. As well, I use Actiq 800 mcg (2-3 per day) and Dilaudid 8 mg (up to 5 per day). My Mom came very, very close (and I'm not joking on this one) to grabbing the physician by his lapels to make sure I had some form of fentanyl going into my system! So, I was so graciously allowed (back to sarcasm) 1 (one) 25 mcg fentanyl patch every 3 days. I was not allowed any Actiq or any Dilaudid. For BT pain, I was allowed 1 (one) Percocet every 4 - 6 hours. Certainly, I was in the hospital for serious reasons, but just telling my parents that the hospital staff needs to "make sure he's alive" didn't particularly cut it in my opinion. They didn't want to render me unconscious--that was their comment. The other physicians with whom I've since followed-up did not understand that complete lack of adequate care for the Pain problems.
Some people might disagree with me, but severe pain being caused by lack of appropriate medication (that I've been on for almost 10 years) doesn't seem right. Going from the fentanyl patch 75 mcg every 2 days, Actiq 800 mcg (2 - 3 per day), and Dilaudid 8 mg (up to 5 per day) for Pain Management down to the fentanyl patch 25 mcg (from 75 mcg) every 2 days and 1 Percocet every 4 - 6 hours for BT pain does not help the situation!
I don't know what kind of things would have happened if I had not had my Mom available. (My Father was in Michigan at the time of my fall. As soon as he was informed, he drove back home!) My Mom was my advocate--and she could only do a little bit! The most unfortunate aspect was that I was transferred to a hospital in another county--a place where my Internal Medicine doctor does not have privileges. She didn't have a voice there!
While it does me little good, I still get furious about this situation. I believe we need advocates, but I don't know how effective they could be for us in these types of situations. Maybe others will have better ideas than I do!
Sincerely,
Jon (Conductor)
P.S. Steve, I get seriously IRKED when nurses--or anyone else who doesn't know your situation--make comments about you dosage levels. Because I have taken these medications for such a long period of time...I need higher doses of most opiates. I underand why you would be irritated with that nurse who made the comment about your "profane" fentanyl dose!
Many of you remember that I (Conductor) was recently in the hospital due to a fall that occurred on June 1, 2007. I endured a right basilary skull fracture. We don't know if I had a bleed that caused me to fall and crack my skull or if I fell and landed on my head, which caused the bleed.
Part of the medical difficulty was that I was taking Coumadin due to my Lupus Anticoagulant diagnosis.
THE PAIN PROBLEMS?? If I did not have my Mom there to help me, I cannot imagine the withdrawal types of problems I would have gone through. Normally, I use the Duragesic (Sandoz generic) Patch 75 mcg that I change every two days. As well, I use Actiq 800 mcg (2-3 per day) and Dilaudid 8 mg (up to 5 per day). My Mom came very, very close (and I'm not joking on this one) to grabbing the physician by his lapels to make sure I had some form of fentanyl going into my system! So, I was so graciously allowed (back to sarcasm) 1 (one) 25 mcg fentanyl patch every 3 days. I was not allowed any Actiq or any Dilaudid. For BT pain, I was allowed 1 (one) Percocet every 4 - 6 hours. Certainly, I was in the hospital for serious reasons, but just telling my parents that the hospital staff needs to "make sure he's alive" didn't particularly cut it in my opinion. They didn't want to render me unconscious--that was their comment. The other physicians with whom I've since followed-up did not understand that complete lack of adequate care for the Pain problems.
Some people might disagree with me, but severe pain being caused by lack of appropriate medication (that I've been on for almost 10 years) doesn't seem right. Going from the fentanyl patch 75 mcg every 2 days, Actiq 800 mcg (2 - 3 per day), and Dilaudid 8 mg (up to 5 per day) for Pain Management down to the fentanyl patch 25 mcg (from 75 mcg) every 2 days and 1 Percocet every 4 - 6 hours for BT pain does not help the situation!
I don't know what kind of things would have happened if I had not had my Mom available. (My Father was in Michigan at the time of my fall. As soon as he was informed, he drove back home!) My Mom was my advocate--and she could only do a little bit! The most unfortunate aspect was that I was transferred to a hospital in another county--a place where my Internal Medicine doctor does not have privileges. She didn't have a voice there!
While it does me little good, I still get furious about this situation. I believe we need advocates, but I don't know how effective they could be for us in these types of situations. Maybe others will have better ideas than I do!
Sincerely,
Jon (Conductor)
P.S. Steve, I get seriously IRKED when nurses--or anyone else who doesn't know your situation--make comments about you dosage levels. Because I have taken these medications for such a long period of time...I need higher doses of most opiates. I underand why you would be irritated with that nurse who made the comment about your "profane" fentanyl dose!