LLPLUV & Chartreaux:
I very much appreciate your responses, as I said, I truly am at a loss as to what to do and I thank you for your suggestions.
My PM has not given me any kind of increase in my oral breakthrough meds or my intrathecal meds in over 3 years. His reasoning is that because of my age (40), he feels that he has be very "stingy" (for lack of a better word) with increases for me because hopefully I am going to live for another 20 or 30 years, and he says that I am on a hefty dosage already and he can only go so far. I understand his reasoning, and I have always been a person that wants to be on the lowest dose possible, in fact, I fought against taking pain meds at all for several years after my injury until I just had no choice. But after 3+ years with no increase, given my level of pain, and the fact that everyone with CP continues to build a tolerance, that it is completely reasonable at this point to give me an increase.
The other thing that bothers me is that I have been told by 3 different nurses who have years of experience with taking care of pain pump patients (in fact, the company they work for used to do all facets of home care nursing, now only take care of pain pump patients), as well as a couple of others who have them on this forum tell me that not only am I nowhere near the maximum recommended dosage but that I am significantly undermedicated!
I have given serious thought to changing PM's, and in fact based on recommendations from my nurses have tried doctors who they said worked well with them and their patients, and none took my insurance.`PM's are very hard to come by in my area, I travel 2 hours each way to see the one I have.
The only glimmer of hope I have is that the intrathecal pump I have has the capability of being programmed so that I can give myself a bolis dose of medication 1 - 4x's a day. My nurses and I have approached him numerous times about the possibility of allowing me to take advantage of this feature and originally he would not even discuss it because he felt that it was dangerous (which made no sense to me or my nurses because he would determine the dosage of the bolis and the # of times a day I could use it) and he said that he did not know one doctor or patient who had ever used this feature. Now he has agreed to allow my nurses to submit documentation of patients they treat who do use this feature and said that he will take it into consideration and re-address it after he reviews it.
I am going to either move my appt. up, or call until he calls me back and find out why I was not even given the courtesy of a return call in response to my numerous attempts.
Thank you again for allowing me to vent and for your advice.
You are right, it was Straydog. She has told me of her experience, and she believes that I am terribly undermedicated. Unfortunately she and her doctor are in Texas, and I am in upstate NY. It seems like her doctor is one in a million.
Just to clarify, it is the home care nurses that come to fill my pump that also feel I am undermedicated, not my PM's nurses. My home care nurse has been frustrated by this situation for a long time because she can see that I am suffering and she can not understand why he won't use the pump to its fullest potential and let me try the bolis feature, or at the very least give me an increase, but she's not going to give up easily, so I try to maintain some hope that he will come around.
Thank you again.
Thank you very much for your post.
How are you feeling? Did the doctor refill your script, or give you something else? I know you have been going through so much yourself. I appreciate so much you replying to my post when I know you are going through a particularly hard time yourself.
I am gong to make him aware of the situation and tell him how abandoned I felt.
Good morning BlueJet,
Well, all I can say is my heart goes out to you. Had I not been in your shoes already I would not be able to totally understand where you are at.
Let me tell you where I am with my pump, 37.5 mg concentration dosage in my pump, (dilaudid) I have been bumped up to 7mg in 24 hrs. My dr said she would have me up and running with the best of them, only on a different level, I believe that statement with all my heart because I know what she has done for me in a few short months. I was always a very active person and she knows this. She wants me active, people do better when they are active and she believes in this whole heartedly. She says how it works is the more active you become, many times the pain level increases and when it happens thats when it is time for an increase. When my pain increases and stays up for a week, I know an increase is needed. She agrees that this is a good rule of thumb for me to go by. If I am outside working in the yard and have used muscles that have not been used in years naturally I will hurt and be sore. With my handy Tiger Balm rubbed on at night I can get rid of sore muscles nearly over night. Its wonderful stuff and great for muscle pain. So, I know in a week if that pain keeps creeping up then its increase time. Also, I do not have to wait on a pump refill every six weeks to get an increase. What I do is call and talk to the nurse and she talks to the dr and I go in and get an increase, end of story. I get no sermon on maxing out my dose, instead I get told we are here to help you. This is still hard for me to remember is that I can get help from her office. Also when you call her office you talk to live people, no voice mails allowed at her place. It gripes her to no end to have to talk to a voice mail. lol
I fully understand not wanting to have to travel far to see the dr. But let me tell you something, knowing the difference of how I feel and knowing how these pumps can give you a life back, traveling would not be holding me back. If you could ever get to that point Lorie, you would be saying the same thing because number one you would be feeling so much better that getting in the car and taking off would not really be a big deal to you. I am planning a trip to OKC soon to see my sister. Its a 2 and a half hour trip normally by car. I will stop and get out and stretch because sitting can be tough on me. I get terribly stiff when I sit. Its been 3-4 yrs since I made that trip and I can do it now.
I know if I had a nurse as you do that comes to my home I would be getting a list of drs from her that actually works well with pumps and I would have my PCP ref me to one.
As it stands right now you are losing quality time each day that goes by, you cannot go back and reclaim that time. You very own dr is taking life away from you by not treating you properly. My dr asked me on the last visit how I felt about my old dr now that I am doing so well. I said well, you know it would be real easy for me to become very bitter towards him. Because of him I really lost two years of my life due to his limited knowlege, yes I could become very bitter. But, instead I will not allow myself to go there, why, because I am going to use that energy doing the things I want to do and I also thank God every day for you being in life, because of you, I will be able to do all of this and many more things. My dr sort of dropped her head a little and she had the biggest grin on her face when her head came back up. She patted me on my shoulder and told me to just keep on going and doing what I wanted to do because life is too short and we never know when it can be cut short.
Lorie, sometimes we have to step out away from the horrid pain and take a better and longer look at things around us. I have a gut feeling you have alot of loyalty to your PM dr and I understand, I sure did too with my former dr, I thought he was awesome. But sometimes we can have misguided loyalty. Loyalty is not getting you out of pain, loyalty will not give you your life back, think about it.
I do not have a bolus capacity on my pump its one of the older models, however, from what I understand that feature was offered at the time of my implant but the ins company being the tight wads that they are, paid for the cheaper model. In essence I got a volkswagon instead of a cadillac,lol. Since the end of Jan. I have had I want to say 3 increases in my pump. Each time I get an increase my dr assures me that I am still on a very, very, low dose and have a very long way to go before ever maxing out my dosage with Dilaudid. She knows this is real important to me because of this fear of what happens when I max out and its not working, where wil I go from there. Her reply was simply, we will use a combination of other drugs just like we are doing now, I have a patient right now with 7 different drugs in his pump, thats what it takes to keep this man functioning and he works every day. I have many patients on 60mg a day, for some people it takes that doseage to keep them functioning on a level that is acceptable. So, when she reminds me of this I am not scared like I was before on maxing out.
You know this fear they put in us about maxing out our dosage too soon and then not knowing what they can do for us next. That is nothing but pure ignorance on the drs part. He is the one stuck-but you are the one paying the price for his ignorance and under educated behind. He has no business handling a pump patient let alone handling CP patients. Many people think its the DEA that has these drs afraid, its not the DEA, its the drs simply do not have the knowledge and experience they need in their field. So, when that happens its like hitting a brick wall head on. Lorie my dr that had my pump put in was this kind of dr, he had no clue on pumps but he darn sure had 45 pump patients. Listen, I was so paranoid about my pump I was afraid to even take BT meds. When, I finally broke down and took that 2mg of Dilaudid, I got better relief from tylenol. I refused any further rxs of it because it did not help why waste money.
In your case, if I was in your shoes and I had a pump that had the capacity to give me a bolus and I had some thick headed pig dr telling me he did not believe in using this feature, I would be finding another dr-end of story. Lorie, why do you think this feature was added to the newer pump models, to help people manage their chronic pain. By his refusal to allow this feature to be used thats a very big red flag waving that he has no idea what he is doing with a pump patient. I would be afraid to have this dr taking care of me because that admission on his part is as loud and clear as it needs to be that I don;t know what I am doing. I am not trying to be hard or sarcastic here, please do not think that. If I have offended you I am so sorry as that is not my intent. By the way Medtronics has come out with another device called the PTM, I believe is the name of it. The patients are buying these things up like crazy and they are on backorder from what I hear. Finding one is like looking for a needle in a haystack. Of course this is all done with the drs approval. It allows the patient to give themselves a bolus. I meant to ask you before, who programs your pump, a nurse or the dr? They may not know how to calculate your dosage using the bolus-ever thought of that one??? Rather than saying Lorie we do not know how to do this and admitting they are out of their league, its easier to harp on maxing out the dosage. I know if I had a pump like yours and needed a bolus and had a dr tell me no, I would be looking for a new dr.
I would get myslef an appt sooner and not wait to see him. You should not be having to put up with this kind of pain. Many soft hgs coming your way. Oh, I too have 4mg of Dilaudid for BT pain and per my dr I can take 2 at one time and that works so much better than one pill.
I sure hope you told the nurse what a turd that dr turned out to be. Talk about being a jerk, jeesh. What is it with these guys, are they all brain dead. Yes, and now I do remember bits of the deal with your insurance and who was on your plan and who was not on the plan.
One thing I wanted t ask you is, have you contacted Medtronic and asked them to send you info on the PTM? If not, it may be worth a try getting some info out of them. I would get some numbers on the amount of them being prescribed by drs and if there are any numbers available on how well they are working for the patients. They claim we can get in touch with a rep from Medtronic and I think if I were you I would try to talk to one and get more particulars on the PTM. I would make sure I have what I need whether its me getting the info or a nurse so that when I saw the dr I would have what I needed to present my own darn case.
I know when my pump was on the recall over the gear problem-I called Medtronic and asked how many pumps in that particular model that they actually found the gear to malfunction. The number was much lower than what I was expecting. When a pump is taken out it goes back to Medtronics for their team to look for malfunctions or whatever, if it has been recalled. With the info given to me by them and knowing that my pump was working properly, I felt there was no need to put myself through an unnecessay surgery and my dr agreed with my decision.
I just get real angry all over again when I read how your dr has just stuck his head in the sand. I would think that somewhere along the line he would want his patient to have some kind of a life What ever happened to the goal of reducing the pain level and get the patient at a decent functioning level. Has he ever talked to you about your functioning level?
You know Lorie, when I was with my prior dr I really thought he was the best thing that happened since sliced bread. All of his patients really liked him you know. Even after the 1st year when I told him I thought I had made a mistake in getting the pump because my pain level had shot back up