Sarcoidosis +

I went and saw another doctor on Thursday, but as it turns out, he was another cardiologist and not the thorasic surgeon I was supposed to see. That sucked, as I had to waste a trip to the doctors in a cab and paid for a ride I didn't need, but I did get some valuable information out of the doctor.

He also clued me in that there might be more to this than just it being sarcoidosis. Yes, the mass in the center of my chest, located directly above my heart is more than likely sarcoidosis. However, the other masses may be something entirely different all together. Theres a very good chance that it's lymphoma. There are several ways of finding out, and a blood test doesnt clearly identify it. So I am meeting with my general practicioner on Monday to discuss further tests to help identify it. One test would be to have another biopsy to take some samples. I am all for it!

Yes, it will leave a horendous scar again, but that's little to deal with when we're talking about a cancer like lymphoma.

The reason for the concern with this doctor was due to the fact that this has been so sudden and the growth was very fast. Some of the swelling has gone down, but they have turned in to pretty hard masses in the left side of my neck and are a bit annoying at times.

I've got everyone offering me the best wishes and great advice and I'll take it all! For now, it's just another day of waiting and seeing. There's got to be an answer down the road here soon! Stick around and watch me find out!

OK, I'm convinced!

Yesterday was a bit of a downer for me since I was just feeling like hell!

I called and spoke to both my pulmonologist and general physician and insisted that I try the prednisone again to see if it helped at all. I was just miserable and was basically to the point that if I crawled in to bed I would be bed-ridden for awhile. Luckily, both didn't even hesitate and signed off immediately on it.

I stopped after work and picked up a prescription, but it was the wrong one. I called and was told to go ahead and take it for now, finish it and then go back on the other 'script, which was fine by me, I just wanted something in my system to help. So my pulmonologist put me on methylprednisonlone (yeah, say that 10 times fast!). I got home and took 2 right away, played with my son for about a 1/2 hour, took a nice hot shower, and settled in for the night by 6:45. I layed in bed for a few hours, but the more I just laid there, the better I felt and by 10:00 I was out cold for a change! I slept most of the night, just peeked open around 3:00 and then again around 4:15 before my alarm finally went off around 6am. I woke up and my chest was not hurting at all! What a relief!!!

So I'm on 2 more this morning and doing pretty good. Hopefully this is the trick!

I have my cardiologist appointment this afternoon, so we'll see what he has to say. Thursday is the thorasic surgeon. That's the one that's got me nervous. He's the one with the knife!!! Ugghh!!

Not feelin' it this week!

Man, it's been crazy with the way I'm reacting to even the slightest change in medications or dosages.

I went thru the whole prescription of prednisone and since coming off of it I've basically regressed back to where I was when I first went to see the doctor in the first place. It sucks, but this the way it goes these days.

I called and spoke with both my pulmonologist and general physician and had to get them to both agree that it was a good idea to try it out again, at the higher dosages. So now it's 6x's a day from here on out. Should be another nice expensive visit to the pharmacy again!
I was really starting to feel a lot better with the Leviquin and Benzonatate for a horrible cough and at the same time I was coming off of my last dosages of the prednisone. So since then, it's been a miserable weekend. Chest was just killing me and just made it difficult to sleep, so hopefully we can get back on track with the meds again.

On another note, I had a bad experience last week with the pulmonary functions test. See, I was a big dummy and wasn't breathing properly and ended up passing out and smacking my head outside of the machine on a chair. Not the best feeling. I basically started to twitch, lost conciousness and bam, next thing I know I'm on the ground with a nurse looking down on me. GREAT!

The visit to the cardiologist wasn't without incident either! I stopped in and talked to him about what was going on and after he had reviewed my CT scans and listened to my heart he decided that we needed to knock about 30 points on my blood pressure and get my pulse down. So for that he put me on a maintenance drug called Toprol. 32 years old and I'm on heart medication! Geesh!! However, the best part comes after I get back to work and about an hour later my wife, the doctors office and the hospital call me to tell me I have to get right in for an echo cardiogram, and that there is a group of technicians that need me in right away! So freaked out, my buddy Gary runs me down there and I go thru about an hours test with this guy just jabbing this wand in to my chest and neck. He was having a difficult getting it to doppler with the mass so big over my heart.

After the tests though, the best part was that they found it was not crushing my right ventricle and was not attached to the heart at all. But he found an effusion (water, scarring) around my heart, which could probably be cured with another drug! Wooooo!!

I had some more questions on everything and talked em over with my primary care physician and he expained it a bit more that I may be suffering from 2 kinds of sarcoidosis right now, pulmonary and thoratic. However, I have to wait to talk to the thorasic surgeon this week and FINALLY these doctors are all going to sit down and discuss what the next step should be. It looks like surgery is the only option, but there might have to be another biopsy.
Long enough for now, I need to get some things done for the day.

I'll check in later this week!

Playing catch up!

Well,

It's been hectic the past 10 days, but I wanted to update how I've been feeling and some of the symptoms I'm noticing lately.

First, an update on what doctors are saying.

I saw my doctor last Thursday and it was nice to have her really explain quite a bit to me about what the results were showing and make me feel a little more comfortable that these doctors do indeed know there's something going on, but want to work quick to figure out what exactly that problem is.

I went last Friday to see a pulmonologist who was great! The appointment was for over an hour and he was very thorough and helpful in explaining things. I was able to take a look at my CT scan and it wasn't too promising. The first area of concern was my heart. When this was discovered a few years ago it wasn't interfering with my heart at all. Since it grew again, it is now laying on my heart. Think of a half moon shape, now, lay a blob on it and the moon shape reverses. Same thing here. With all the test results so far, there is nothing irregular with my heart. So I will have to see a cardiologist next week to have him determine what, if anything we may need to do about it.

The other area is my chest and neck. The left side of my neck has been really swollen, to the point that it's noticable to anyone who looks closely. Over the past few days the right side of my neck (near my shoulder area) has gotten a bit swollen and little knotty! It's made for some very uncomfortable nights of sleeping, but I'm still managing it. I also have the mass growing across my chest as well. So, it's definitely spread, or is still spreading. With the way I'm changing feeling every day it's probably still growing. And that's just a gut feeling. The only real problem I have been having is breathing and a deep muscle ache that goes from my neck, under my ears, down to about the middle of my chest.

Last weekend Tiffany came down with a touch of a cold, and I think I picked right up on it. I woke up Saturday and was back to coughing. It's funny, but I explained it to Tiffany as it seeming like a thunderstorm moving across my chest. It starts on the right side and moves, steadily over a few days, across my chest. Very systematic too. Where as going in to today I wasn't as bad as the past few days, but my breathing seems a bit more restricted than before. I'm watching it closely though. I took a swim last night and it really relaxed me. Can't beat it when the pools 90+ deg!

I'm down to 3/day for the prednisone. I could tell when I was changing the pills though.

I also have to have a pulmonary functions test next week, along with seeing a thorasic surgeon to take a look at my neck as well. SO it's gonna be a fun end of the month! My insurance company has to be loving me right now!

I'm planning on putting some more research stuff up here as well. The new diet hasn't been implemented yet since my doctor says I'm in perfectly fine health otherwise. She said there was really no need to change any of that. I'm gonna get on some better vitamins, but nothing radical. I shouldn't get too carried away until I know for sure what I should be doing. I've gotta work to keep time on my side!

OH! That's what that felt like!

Yes, for the first time in a very, very long time (too long to recollect obviously) I woke up this morning with no major coughing or hacking up of a lung! (Yes, gross, I apologize!!) But people, this is great news!

I didn't sleep as well as I had hoped to, but I think I may be ready for a whole nights rest. I've just been tossing and turning a lot and I think its just me getting used to these drugs in my system. Hopefully I'll start shaking that here soon.

Time for my meds and another green tea! Cheers!

Sleep, I'm learning to appreciate it more!

Last night was by far my worst night of sleep that I can remember.

Well, not that I really noticed except when my alarm went off at 6am and I felt like I had just slept 20 minutes. Tiffany told me I was moaning and tossing and turning all night. I went to bed at a semi-regular time, 10:30 or so, so nothing different there. I just chalked it up to my body getting in line with the medication I'm on now.

Got up and went thru the regular routine this morning and got my meds in me about 6:30am, like clock-work! This morning I had a Activia yogurt (damn best Dannon yogurts around!) and a few cups of coffee. I was a bit wired!! Since I've been eating this yogurt (which I have been for about 6 weeks, 1 a day) I've cut back dramatically on my chia seeds I was taking. My stomach has really quit acting up, and I'm starting to pay better attention to my diet.

I'm counting the last few days down before I switch to my new diet, a blood-type diet! And so far, I'm not impressed with the menu selection.