PAIN CONTROL
Monday afternoon I met with a pain specialist to try to figure out what is causing the pain, and what we can do about it. According to the PET/CT scan I had, there is tumor growing near the kidneys, and he believes this is what is causing the pain. Unfortunately, the only thing that will make the pain go away permanently is for the tumor to shrink and/or disappear.
For now, the only way to treat it, is with narcotics. Yippee.
I take oxycontin twice a day for long term pain relief, and take dilaudid for "break through" pain, i.e. when the oxycontin wears off, but it is still too soon to take another dose.
The doctor said the first thing is to get the pain under control, then we will work on getting to the point where the narcotics are not having the "narcotic" effect on me. I hope it is soon because I really don't like the feeling of being on these drugs. I am tired of being either in pain, or doped up on narcotics. My quality of life has taken a big hit as it is hard to know how I will be feeling, and therefore hard to make plans for anything social. I would love to be able to plan on seeing a movie, spending time with friends, or going on a date with my wife, but with my current situation, I just can't do that. The pain and drugs has also made it impossible for me to even go for a ride on the Harley.
MACROBEADS
Wednesday, I saw the surgeon who will be doing the macrobead insertions. He is concerned that there may not be enough room, due to scar tissue from previous surgeries, for all of the beads that need to be inserted, but won't know for sure until he does the surgery. So we go ahead with the surgery, which will be June 18th. 6 days before my 51st birthday.
SLEEP
Besides the pain, another problem I have had was getting a full nights sleep. When I went to bed, I would take an Ambien and a pain med, which helps me get to sleep, but then after about 4 - 5 hours, I would wake up in pain, and have to get up to take another pain med. I would be up for an hour or so before being able to get back to sleep. This means that I was usually exhausted all day long. So along with the increased doses for pain meds, the "pain" doctor also gave me a prescription for Ambien CR and for the first time in a LONG time, I have been able o get a full nights sleep. Even though I am still sleepy throughout the day, at least now I have a bit more energy to get things done.
Right now, one of my biggest fears is that this will be my life going forward. Either in pain, or on pain meds. We continue to pray that this will change. We pray for either for a miracle, or that the beads will be effective and help give me my quality of life back. We know that there are many others praying for the same thing, and we appreciate all of those prayers.
Thanks for sharing with us. I know pain management sucks. Michelle is taking a nerve blocker, Lyrica. I don't know if that would help you, but it sure helped with the nerve damage she had from her last surgery.
ReplyDeleteI am really interested in the Macrobeads. Your blog is a great read but it sucks you have to write it. We're pulling for you.
Jeff Phillips
Hi Kevin,
ReplyDeleteMaybe Brad could give you some insight since he's had experience with break out pain and sleeplessness. Well, sleep is still an issue. Patches were one thing that helped, ask about them. It was heart breaking to see Brad on the pain meds when they built to such high levels. Before Dr. Loggie's surgery, we were looking into nerve deadening, it's a last resort type of thing. Get a pain management specialist on your team and we will prayer for some relief for you.
Best thoughts for you and Roni,
Cheryl
Thanks for sharing Kevin. The pain meds are such a double edged thing ... thankful for the pain relief and don't like all the side effects.
ReplyDeleteWe're praying with you for a miracle, with or without the beads, and that both you and Roni will feel God's arms around you.
Please let Roni know I'm praying especially for her too, as my husband is 3 mo. post MOAS. Though he's doing well right now, they can't fix some of the complications from PMP and I've now learned that chilling new word, paliative.
My heart and prayers are with you both. ~Keren
Hm, if your pain is located at the kidney, why don't they give you the stuff they give when passing a kidney stone. There is no grogginess and it goes directly to the kidney. I forget what the stuff is called (usually because I am in such pain at the time it's just a matter of "Give it to me!!!"), but you might want to bring it up.
ReplyDeleteAlso, Great Barrier Reef fills me with the sweet bitter taste of ENVY!!!! >:)
Have they mentioned a fentanyl (sp?) patch. When I broke a rib, that helped tremendously. Glad you're able to get better sleep - so important. But I'll miss our late night chats on FB!
ReplyDeleteHi Kevin,
ReplyDeleteJust an idea. If the kidney pain is caused because of the kidney not being able to function properly (which ofcourse I don't know - still not a doctor). Tom had a tube inserted in his back that drained the kidney...then no more pain! It can be a temporary fix until the tumor goes away. Out patient procedure but maybe something they can look into while they do the beads....Praying for you and some relief.
Bridget Ellis
Gee, looks like you didn't get home a minute too soon, it would have been terrible if this had all started while you were away on your holiday. Let's hope that there will be room for those microbeads, or at least stick as many in that will fit!!
ReplyDeleteDebbie
Thank goodness this didn't happen while you were over here on holiday! I hope it all gets better soon. It doesn't sound like fun.
ReplyDeleteJust to let everyone know, I did have the pain during our trip to Australia. The only thing that kept the trip from being perfect. I took along some Oxycodone, so that helped with the pain, but also meant that Roni had to learn quickly how to drive on the left.
ReplyDelete