Cinnamonsmile -- Please check in when you can

Cinn was in chatroom tonite and comes in fairly regularly.  She is keeping to her pain med routine and doing her naps.  They are going to do more tests for try to identify a possible allergy.

I have nicknamed Cinn      XENA!   fits!

Hi, while I appreciate the compliment of being called Xena, I really would prefer Cinnamonsmile or a variation of it.

My post-op with the surgeon went ok. Turns out he was NEVER informed that I had called asking for a higher dosage of pain meds and that the medical assistant I spoke lied when she said she wished there was something stronger they could give me. The FIRST comment made by my surgeon was that he was told they I was not treated very well in the hospital and that he was sorry he was not there to tow the line (like leaving a severely catheter in me from Weds night to Fri morning). He even asked me why they didn’t take it out and I gave them the reasons: 1. It was bladder spasms (which I argued every day that it wasn’t and turns out I was right when the leak was discovered early Friday morning around 2-5 am) 2. They are going to be taking it out soon anyway. He should be asking his hospital staff. I told him that I specifically informed the P.A. that it was leaking really bad and was told it was a “hospital problem and that he refused to have staff change it. The surgeon told me to put it in the past and let go. I told him he needs to be informed because obviously staff was not totally honest with him and that he needs to fix these things if not for me, then for the next patient.

The cause of my lung plum is hypersensitivity pneumonitis. The surgeon was extremely surprised it wasn’t cancer. He said that as he held it and looked at it, he was sure it was. Thank goodness for that. Essentially, my lungs reacted to something so severely that the inflammation became a mass that needed surgical removal. The bad thing is, we have no idea WHAT is causing the inflammation in the lungs. The pulmonologist referred me back to an allergist I saw in 2007. He recommended a lab panel for hypersensitivity pneumonitis (I don’t know why the pulmonologist didn’t order the test). From what I can get from the pulmonologist, there was no asbestos in the lung mass (I am not convinced they know what they are talking about so I am putting a call in directly to the head of the lab). The labs don’t cover anything, but at this point, I would rather test for something’s rather than nothing to find out what is causing them so I don’t grow another.

Pain progress is slow. I found out that he had to cut a rib to get at the mass. I have no idea if I am now missing part of a rib and cartilage or what. I didn’t think to ask during the appt.

Labor Day weekend was really rough. Lots of tomatoes to can. By Sunday late afternoon I was crying because of pain and exhaustion. Really overdoing it. I have since slowed down.

The pulmonologist has had me on 60 mg of Prednisone daily for 2 weeks. Sleeping is rough. I now know what some of you are talking about when you are on Prednisone/steroids. I have been wide awake at 3-4 in the morning, sleeping only at night for a max. of 4  hours a night. Recently I noticed I have been adjusting to sleeping better again, although I sleep extremely light. I have lots of energy which is really nice cuz usually I am a slug from all the Gabapentin. It is hard to slow down so I heal better, but am doing much better lately.

I find that every afternoon I need to lay down for 1-3 hours. Even if it is just resting. One afternoon I darned the heels of about 6 pairs of socks to save them (they are my favorites and they don’t make them anymore).

Still having pain issues but certainly not as bad as the beginning. I am just beginning to barely be able to handle car rides (unless it’s a bumpy road), so I rarely go anywhere.

I had a non-fasting blood sugar test yesterday and the prednisone jacked my blood sugar up to 250 something, so I have to go in Monday and get a fasting blood sugar level test.

But in two weeks, I managed to lose 3 pounds while on prednisone. I have been working hard at not munching on junk food while on prednisone munchies.

Today was an exciting day, I start the steroid decline. I got to reduce my total daily intake by 5 mg per day for three days, then drop another 5 every third day!!!

Thank you for asking how I am doing. This sure has been a rough surgery.  I am not crazy about all the new surgical neuropathy on my left chest and belly, side of chest, but at least I already have a pain mgmt. plan for it from the BMX w/node dissection.

cinnamonsmile said:

Update

Hi, while I appreciate the compliment of being called Xena, I really would prefer Cinnamonsmile or a variation of it.

My post-op with the surgeon went ok. Turns out he was NEVER informed that I had called asking for a higher dosage of pain meds and that the medical assistant I spoke lied when she said she wished there was something stronger they could give me. The FIRST comment made by my surgeon was that he was told they I was not treated very well in the hospital and that he was sorry he was not there to tow the line (like leaving a severely catheter in me from Weds night to Fri morning). He even asked me why they didn’t take it out and I gave them the reasons: 1. It was bladder spasms (which I argued every day that it wasn’t and turns out I was right when the leak was discovered early Friday morning around 2-5 am) 2. They are going to be taking it out soon anyway. He should be asking his hospital staff. I told him that I specifically informed the P.A. that it was leaking really bad and was told it was a “hospital problem and that he refused to have staff change it. The surgeon told me to put it in the past and let go. I told him he needs to be informed because obviously staff was not totally honest with him and that he needs to fix these things if not for me, then for the next patient.

The cause of my lung plum is hypersensitivity pneumonitis. The surgeon was extremely surprised it wasn’t cancer. He said that as he held it and looked at it, he was sure it was. Thank goodness for that. Essentially, my lungs reacted to something so severely that the inflammation became a mass that needed surgical removal. The bad thing is, we have no idea WHAT is causing the inflammation in the lungs. The pulmonologist referred me back to an allergist I saw in 2007. He recommended a lab panel for hypersensitivity pneumonitis (I don’t know why the pulmonologist didn’t order the test). From what I can get from the pulmonologist, there was no asbestos in the lung mass (I am not convinced they know what they are talking about so I am putting a call in directly to the head of the lab). The labs don’t cover anything, but at this point, I would rather test for something’s rather than nothing to find out what is causing them so I don’t grow another.

Pain progress is slow. I found out that he had to cut a rib to get at the mass. I have no idea if I am now missing part of a rib and cartilage or what. I didn’t think to ask during the appt.

Labor Day weekend was really rough. Lots of tomatoes to can. By Sunday late afternoon I was crying because of pain and exhaustion. Really overdoing it. I have since slowed down.

The pulmonologist has had me on 60 mg of Prednisone daily for 2 weeks. Sleeping is rough. I now know what some of you are talking about when you are on Prednisone/steroids. I have been wide awake at 3-4 in the morning, sleeping only at night for a max. of 4  hours a night. Recently I noticed I have been adjusting to sleeping better again, although I sleep extremely light. I have lots of energy which is really nice cuz usually I am a slug from all the Gabapentin. It is hard to slow down so I heal better, but am doing much better lately.

I find that every afternoon I need to lay down for 1-3 hours. Even if it is just resting. One afternoon I darned the heels of about 6 pairs of socks to save them (they are my favorites and they don’t make them anymore).

Still having pain issues but certainly not as bad as the beginning. I am just beginning to barely be able to handle car rides (unless it’s a bumpy road), so I rarely go anywhere.

I had a non-fasting blood sugar test yesterday and the prednisone jacked my blood sugar up to 250 something, so I have to go in Monday and get a fasting blood sugar level test.

But in two weeks, I managed to lose 3 pounds while on prednisone. I have been working hard at not munching on junk food while on prednisone munchies.

Today was an exciting day, I start the steroid decline. I got to reduce my total daily intake by 5 mg per day for three days, then drop another 5 every third day!!!

 

Thank you for asking how I am doing. This sure has been a rough surgery.  I am not crazy about all the new surgical neuropathy on my left chest and belly, side of chest, but at least I already have a pain mgmt. plan for it from the BMX w/node dissection.

Too many if us love the nickname and i am on the fence about using it since u dont like it, BUT I use both names if you've noticed and I cannot help seeing your awesomness and Xena expresses it babe. 

Hope today was better. also try calling animal control there might be a law they can charge him with so a civil suit may not be your only option if you just want to get the message across.