When you use Intrathecal drug delivery therapy, your pain medication is delivered directly to the fluid around the spinal cord, called the “intrathecal space,” via a drug pump. The drug pump is connected to a thin, flexible catheter. Both the pump and the catheter are fully implanted under the skin.
The medications that are used in IDDS are strictly limited to those that your physician decides will be the most effective in your particular situation. Morphine is the most common medication used in Intrathecal drug delivery systems. Just a fraction (1/300th) of the Oral Morphine used by the patient, can be used in the implanted pump. This much, much smaller dose is effective in pain relief through this method of delivering the medication. This is a huge benefit of the pump, and the side-effects that are caused by long-term Oral Morphine use can be life-altering, and extremely hard to deal with; an IDDS will eliminate those nasty effects. The usual side-effects of Oral Morphine are not apparent in the patient with an implanted drug system, seeing the greatly reduced dosage that can be used with this method of delivery. Sometimes, Baclofen, a muscle relaxer, is used in the pump- to treat spasticity.
With all this good news regarding the reduced side effects, reduced amounts of medication necessary, and no more oral meds for pain (although BTP medications may still have to be available for break-through pain, and if severe spasms are present, and no Baclofen is going to be used in the pump, an oral muscle relaxer may also be needed) the question is, "When?"
BE PATIENT!!!
That has been the ongoing question over the past year plus. WHEN? Well, with all the red tape, the waiting, the ongoing need for repeat authorizations, the paperwork, the phone calls; those are what add up to a year-- very quickly.
Now, I have been informed that we are still waiting for a response from the medical group for another Pain Center/Hospital, or another doctor, that will be the ones to implant the pump. This must be referral/authorization number 9? Possibly #10.
This is when the enormous amounts of patience needed comes into play. That is another deep strength that many of us undergoing medical treatment must learn to aquire. We learn to be patient, to realize that nothing happens in a day, and that there is no reason to get all bent out of shape when things don't go according to our timeline or desires. If we were already a patient person, we learn how to become an even more patient patient.
Also I was told that the IPA denied my request to keep seeing the Pain Management doctor (that I have been seeing for over 7 years,) who no longer is contracted with the IPA, and that if I want to keep seeing him for Pain Management while I await the pump, I must 'Do an Appeal."
Alright!!
I have to now fight just to keep my medical care in a state of Continuity? To stay with the doctor who has dedicated many hours in my care? Keeping me in a functional level of pain- through careful and time-tested combinations of medications, carefully-chosen exercises, and various other modalities to reduce my pain level. He is familiar with my spine; familiar with me!! This is ridiculous. But....I am not backing down. If that is what they need, some more paperwork to go through, more busy-work for everyone, so they all have a job to do and can get a paycheck--then let's do it! I LOVE a challenge!! And I won't back down.
I ask of my readers one simple thing: that you keep my Morphine Pump authorization in your prayers. I do believe in the power of prayer, when there are many voices, there is much heard. If you don't pray, I ask that you put out positive thoughts to Mother Universe for this pump trial to be granted to me. It's not like I am asking for a damn bottle of pills that is utterly ridiculous to ask for--I am asking for something that will reduce the amount of medication I take!! Something that will allow me (I can only hope) to return to nursing and be back with my beloved Hospice patients, helping them from this life as gently as I can, with the utmost amount of respect and kindness I hold in my heart.
It just shouldn't be so damn hard.
I will continue writing with deeper information on the IDDS.
Gentle Hugs------<3
Stay strong~
.........just for today~
Shauna, as ever you are so diplomatic. This I feel must be the nurse in you. Others could well have resigned themselves to not working again but you, well you just want to get back to what you do best, a specialist field in itself, hospice work. You diplomatically take the time to ask for prayer or for those like me who would like to pray but for the time being prefer to believe in collective positive thoughts for those that need them, I will do this for you, consistently because I feel that makes a difference. I also light a long burning candle, its a secret thing of mine, my family think I just like the smells but little do they know each candle has a special person in mind, to help me be mindful of the request. So I shall do this and it will work, because as you say, collective positive thoughts have to make a difference. This is why I like the blogosphere, I ignore the negative where trolls and nasties do their work and stick with the good. Which is here. As an aside my medication is going to be changed from liquid oramorph to slow release morphine which I think means less is needed? Initially I am told I may need top up liquid oramorph whilst a baseline? is found. Its a little beyond my meds comprehension but it sounds better even though, I shall still have to take the slow release dihydrocodeine and when needed anti spams in my case valium. But even so it sounds as though the doctor is going in the right direction. I hope so. I am trying not to worry that I will have to keep going back to say the slow release is not enough making me feel like the drug seeker I am not but looking on the bright side hopefully the calculations are to be correct. In the meantime I shall choose a candle for positive thoughts for you. You did send the email to me as an aside but I have been low on spoons so will reply - its on my list.
ReplyDeleteTake care and remember everywhere all around the blogosphere people are either praying or thinking positive thoughts just for you, it will happen.
Wow ALois,
ReplyDeleteThat is awesome. YOU are awesome!! Thank you so much for taking the time to let me know that you will be thinking of me and sending out those ever-needed positive thoughts. If it wasn't for people just like you, I wouldn't feel that anyone really cared....
We could go on and on, I am glad you did get my email, I was worried it wasn't going to go through. Take your time, my dear friend, in replying....I know those spoons are hard to come by. I am trying to function on just a few today myself honey.
With many Gentle Hugs----<3
You are definitely in my prayers, Shauna. I don't know why it has to be so difficult either. It seems to me like we are going to be on drugs one way or the other, so why not approve the pump so you can get back to feeling like you can offer other people help they need.
ReplyDeleteI tell my family that finding help for whatever condition we have that keeps us from working is a full-time job in and of itself. It can take hours to fill out the forms and you have to be good at keeping what you sent so when they tell you they didn't get it, you can show them it was sent as requested.
It takes patience and sometimes it takes a whole lot of deep breathing for anger management. I think people who actually hang in there and don't give up show a tremendous amount of fortitude.
I see you with your pump, smiling, helping and sending love to all you touch.
Teri
Shauna, It really pisses me off that sick people and people in pain have to work so hard to get what they need. Why does the medical community make everything so hard for us? I will be praying for you and sending good thoughts your way. This just makes me angry.
ReplyDeleteDear Teri and Mo,
ReplyDeleteYou both seem to 'get it'....just how ridiculous all the hoops we have to jump through are. It seems backwards that those who need medical care are the ones who have to constantly fight for our right to medical help....it does get old, I do get angry too.
Thanks ladies, for your never-ending support.
Gentle Hugs-----<3
I will continue to pray for you, and dont give up with those insurances. They look for anything to deny, and it can go in a circle. they want people to give up. DONT. eventually it will all work through. I work in medical billimg, not nearly the level you are, but am aware of the ways, the insurance try to get out of paying. DONT GIVE UP. follow through to the end. This could be your future of pain relief as best you know it. and it could help thousands of other patients, not have to go through so much to get it. Your are on the forefront to helping others, It will pay off. Keep Positive my friend. Ljhunt
ReplyDeleteDear Lj,
ReplyDeleteI really needed to read this...I am honored to know that this could be a case that may change the way that this is all handled. (?) I know your background in Medical Billing and your familiarity with the background issues that most of us never see.
To hear someone with your knowledge tell me to keep on, to NOT GIVE UP...well my friend, that is exactly what I am going to do!!! And through all this waiting, all the BS that they are having this case go through, I do hope that I will make a difference for those that follow.
God Bless you Linda, and I thank you again for your never-ending support!!
Gentle Hugs----<3
Thank you for this post! I recently wrote a post about me losing my patience for the ridiculous hoops we have to jump through to get some care. Your post brought me some peace and helped me to step back and laugh at some of the ridiculous things that happen while I try to get some medical care. I will continue to slowly move forward and remember to practice patience as much as possible.
ReplyDeleteyou are in my thoughts!
Hey TPP!!
ReplyDeleteI read the post you wrote about the same issue I was laughing about--well not all the time, but I know you understand oh so well what we are put through just to obtain medical care. In a reasonable amount of time may I add!?!? Not that much to ask....
If you ever figure it out, drop me a line sweetie!! I will give all the kudos to you!
Gentle Hugs----<3