Hi there, Scared-for-life...
Many thanks for responding to my first post! I should note, before my metabolocially altered brain immediately moves on to something else, that I am operating with a (barely) cobbled together computer system. Long story. Anyway, if I should suddenly stop posting or replying, please assume my "system" has crashed, again....
My "story" is complex and convoluted, but began, like yours Scared-for-life, with several spinal injuries. Football provided my first neck injury. Was told to quit playing. Played anyway. Idiot. Not long thereafter I was thrown from the backseat and out into the woods during a particularly violent automobile accident. More neck injuries, among others. Had a C5/C6 cervical fusion which failed, allegedly due to the donor bone used for the allograft. The discs above and below fusion herniated. During a weight lifting accident, I ruptured the notorious L4/L5 disc. Surgery was recommended, but I opted for the 'consevative', so-called medical management approach.
Like most CP'ers, I was prescribed every NSAID know to mankind. Including Vioxx, Bextra, Celebrex and others. The Bextra actually did help! Also subjected to physical therapy of many varieties. Even good old traction with the hanging weights! I was not exposed, due primarily to my rural location and insurance restrictions, to an actual "pain management specialist" until around 2003. This after suffering for nearly 20 years. Then, as we all know, I had to be run through all the stuff that did not work the first time. Just CYA for me and the doc, mostly the doc. I was finally titrated up to a dose of 80 mg of methadone per day. No BT meds. This and a few other meds seemed to increase my mobility and quality of life. I remained on the methadone without an increase for 3 years.
Meanwhile, my body was introducing additional new issues. Disturbing symptoms I'd never experienced before; passing out and going down like a bag of cement, breaking bones and injuring both knees; lower extremity edema, chest pain, crushing fatigue, among other unpleasant stuff. My doc at the time was content to have his nurse practitioner provide all medical care. I had only Medicaid then and my options were limited. Also, she appeared to be doing a decent job! A very cranky cardiologist ordered a heart cath which was mostly unremarkable, except for slightly elevated right heart pressures. This later proved to foretell an awful outcome. I was rx'd a heart med, diuretics, etc. But nothing changed. I was getting worse.
Despite the risks, an ortho surgeon agreed to repair my left knee in 2004. The arthro went well. I felt so good I went grocery shopping with my daughter the very same night!! One problem solved, or so I believed.
Then, in May of 2006, the major, lethal meltdown occured. I was 'ambushed' by what was termed a "massive, bi-lateral pulmonary embolism". A horrific experience. A near death episode, lingering between the two worlds for two weeks. Projectile bloody noses, hideous memories of feeling as if I was drowning over and over, indescribable pain...snapshots, though, as to this day the period between 5/06 and NOW remains quite foggy. Thank God! Many memories have come into clearer focus, but I'm still working on filling in the void. Hypoxia caused by lack of O2 to my brain resulted in some minor damage and a generalized frontal seizure disorder. Oh, boy!!
The collateral damage from the PE was extensive, permanent, incurable and life-threatening. And life changing, no, shattering is much closer to the truth. Massive lung damage produced Pulmonary Hypertension (secondary), the renegade blood clots pitched tents in both legs, causing deep vein thrombosis, and other vascular and metabolic issues it's just too depressing to discuss. Self pity. I know, a poor perspective, and not characterological for me. I underwent 8 heart cath surgeries and surgery to implant an IVC filter to hopefully stop aboout 80% of blood clots heading for my heart and lungs. I actually was able to view a large clot in my right ventricle and atrium on the monitor during an angiogram. What a terrifying sight. I avoided the monitor in the future. Strangely, I could not describe for you any great details about the SICU where I spent too much time?!? Not even the color of the walls.
It's rather embarrassing to admit that my vascular surgeon and other docs at the university hospital where I'd been transfered referred to me as "the miracle man". They had not treated anyone else (yet) who'd survived a pulmonary embolism of such massive porportions. I still have not completely absorbed those ramifications. My pulmonologist stated matter-of-factly that I could expect 2 to 5 years survival. I spend much of my time working to remain alive, and so far, it's succeeded for 2 years! The PH can drop ya in a 'heartbeat' and left me with about 35% of my lung function. You can imagine the cardio-pulmonary limitations combined with the spinal issues. Challenging. I had aways been physically active, before, in the other life, where I was also employed as a licensed professional counselor. Now, lost, mostly. Too alone with those thoughts we all know too well. The darkness.
I am genuinely sorry for the length of this post and for the vision of anyone who read it through... It helps me emensely to think and write this 'story' within a forum of folks who can understand and are highly unlikely to be judgemental. It's very difficult to find such a place. So, please accept my gratitude for your patience, and I will look forward to any replies. I welcome your input!! I'll start trying to locate areas where I might offer a boost up to another CP'er!
So many potentially disaterous medical issues have occured over the past two years that I'm just plain burned out. A biopsy surgery to rule out lymphoma that went terriby bad along with 3 MRSA infections. Most since last summer. Whew... !! Now, bone marrow problems connected to a badly damaged right knee. I'm hoping that what comes next includes meeting many new kindred spirits here! That would beat the living crap out of another MRI!!
PS...Scared-For-Life...I've been started on Kadian too, how has it affected you? I think I preferred the methadone. Fewer side-effects.