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.

Restless, but doing good!

So last night was definitely a hectic one.

Tiffany wanted me to rest and relax before I started the week, but of course, I had to go on a full blown organizational rampage. Making sure I had everything I needed for today, doctors to call, prescriptions to fill, letters to send out! You name it!

I finally turned the computer off around 12:30 and laid down. Yes, I should have been in bed hours before, but I was restless, and I knew it. I tossed and turned most of the night knowing that I was going to have a lot of catching up to do at work, and also rush to get some parts back up and running! But Gary's good at helping to get that going too!

I think I got around 4-5 hours total sleep for the night. But, since I had taken a melintonin around 10:30 or so, I seemed to have felt rested.

I woke up this morning and took my meds. around 6:30am, with another dose of prednisone at noon today. One more pill before the days over. I also started my 60mg of Cymbalta today. It's definitely made for a day of chilling out! Phew!! .5mg of Xanax and we're right about where I should be now. LOL, or at least thats what Im told.

Well, we're half way thru and no emergency calls from the doctors yet, so we'll take it in stride. More later!

Starting a new week

Well, the first week is almost over, and for the most part nothing to much to report.

I did, for the first time today, realize a feeling in my neck that I have been having. But for some reason today it just resonated and I finally knew what it was that was aching. It's the area near the lymph node that they think I have some 'growth' from that mass.

Now when I say 'aching' I don't mean painful aching, rather a feeling that I know is there now, and with what reason it is there. Ya follow?? Haha!

I am down to 5 predisone a day, as prescribed. 5 more days of this, then we drop off another pill. Also on Monday I am taking another medication that steps up from 30mg to 60mg. That should be interesting!

Tiff's ready for me to sit down, relax my last night and eat a hot meal! More this week!!

All of my release forms were signed by 3pm on Friday and faxed out to 6 different hospitals/labs/specialists from Maryland to Ohio tracking down everything on Scary. So far so good! Now the doctors will have a chance this week to compare everything and see where we stand now.

I have 2 appointments this week, Thursday with the general physician and then Friday with the pulmonologist for the first time. Unless they decide after reviewing things that they need to see me sooner. We'll see!

First 5 days.......

I wanted to keep track of what I've been taking so that I can see if I can put anything together as to what may aggrivate it or help me chill out more with it.

So Monday night I started a few drugs to help with anxiety and nerves to bring down my pulse and blood pressure. Worked wonders! I also started 2 does of prednisone (6 times a day for first 5 days) and had one more dose of that around 10pm before I went to bed. Each night before I head to sleep I've been taking 5mg of melitonine ( thanks Richard!! ;) ) to help with my sleeping along with a potassium pill (99mg) for bad leg cramps I've had for quite some time. They've stopped after I've been taking these now for about 5-6 months. Trust me, with the muscle aches I was willing to try anything. Also, about 60 days ago I started taking a multi-vitamin, OneADay Men's Health Formula ( * WITH LYCOPENE!!! [:)] ).

This has now all been the pattern since Monday night. I was also on a 5 day ( 1 pill a day ) for Zythromax to see if I had bronchitis or any other pulmonary infections.

I woke up this morning, as I have each morning and have begun to feel pretty good! So that is definitely a positive.

Tiffany just hit the jackpot for me so I'm gonna post for now. She found all of my old studies from when I was in Bethesda at NIH. We're gonna do some scanning and faxing over to the doctors right away!

Boy is she good or what??!!

And so begins the drugs.........

I've been very skeptical over the years of the different types of medications that have come out on to the market and I always just have to think back to when I was a kid.

There was no ADHD diagnosis, you were just an unrulely child that needed a good swat! And for the most part ( in my own worthless option!!) it seemed to have worked fine for my family and close friends growing up.

So when I was first told about this disease, pulmonary sarcoidosis (linky for more info) I wasn't sure what it was. I needed facts, and didn't to jump right in to these 'experimental' drugs.

I had been invited to the National Institute of Health in Bethesda, Maryland for a case study on predinsone and to learn more about me as an individual and see if they could add any more pieces to the puzzle of this pretty much unknown and rare disease.

The problems started after my visit to the NIH. The doctor's case findings (and this was a 9th floor of a research facility) that were just not sure I was 100% pulmonary sarcoidosis. I had a lot of the signs, the mass was still there, but that was all that they could really piece together so far. I was asked if I wanted to start the prednisone treatments or just ride it out. I chose the latter.

I then began to see several doctors in Erie, Pennsylvania who had went with the sarc. but also were skeptical that at some point in my life I didn't have some type of lymphoma. Possibly had it and it went in to remission. There were just no difinitive signs of what it was. I had just a few options in which I could go with, 1.) start treatment with the prednisone, 2.) have it removed (no thanks, open-heart surgery procedure! I'll pass!!) or 3.) just let it be! I being the doomis I am at times, went with Option #3!

The last doctor I was seeing at the Chest Diseases of Northwest Pennsylvania (Click to learn about them) had chalked it up to being very symptomatic with pulmonary sarcoidosis. He was also up for me starting on prednisone, but again, I was not interested. But even after the visit to the NIH I was still satisfied that it was just the sarcoidosis.

I ended up back in Ohio and began to see a pulmonary specialist in Summa in Akron. Again, I'm pretty much consistent with sarcoidosis, but he seems to think that I've developed an infection in my lung lining, consistent with pluresy. I was having bad chest pains again, and this is what he pretty much attributed it to. So he prescribed Celebrex. Yes, that's the same stuff that they are treating (and being sued for now!!) for arthritis and stuff like that.

I became skeptical of my doctor, and just pretty much started skipping appointments. I had switched a job and fell in to the category of 'pre-existing conditions' so I couldn't be treated anymore for it. I had to come up with the 'pneumonia' or 'bronchitis' excuse to get x-rays for it.

I had become such an analysist of the diagrams I was able to look at the chest x-rays myself and see any changes. So, since probably around last year I hadn't seen any signifiant changes in the size, until this week.

So here we are now, 5 years later, and I finally broke down to give it a shot. I have to admit, the pains that I had been having in my chest had subsided and I was just stiff and sore, which was 100% better than how I was feeling thru the week. So maybe there is something to this prednisone. All I know is that the pain is gone!! Phew!!

This may get boring at times, but as I'm learning, the slightest details always help. Feel free to add any comments that you may wish to! Looking forward to keeping track of this!

The reason.........

I've been meaning to put this together for quite some time, but it's just now come to my attention just how important this stuff is going to be. Both for my doctors and for my family to be aware of what is going on with me.

We're really just getting back in to tracking this whole process again, but I should start with why I am where I am this week first and foremost.

I wasn't feeling to well on about the 20th of July and knew that I had to get in to see a doctor soon. I had been putting it off for quite some time now with all the stress of work and just making sure that I didn't let this sickness get in the way of my livelihood and day to day goings on.

But I was just planning on a nice relaxing weekend and ended being asked to come in to discuss a few projects with the boss on that Saturday. I woke up and my neck was really swollen right on the center near my adams apple. No tumor or anything, just inflammation or an infection. My shoulders were a bit sore and my neck was very tight. I took a hot shower, relaxed a bit, went in to work for a few hours, came home and took another nap. I just relaxed the rest of the weekend, knowing that my appointment was for that Monday. By Sunday I was still a bit sore, but I was able to manage and still be able to get thru it for one more day.

Honestly though, by Monday I was really hurting.

Tiffany went with me and was great for filling in all of the blanks that I had forgotten to fill in during the exam. Well, what had turned out to a 'general checkup' had now turned in to "This is pretty serious Aaron, we need to start some tests right away."

** Sidebar ** This has become pretty relavent with all of my doctors. When I get to a new one, I never have all the info that they need at the time. So the first time they see it the first reaction is 'It's lymphoma'!! Well, after they see the test results, they are usually satisfied.

Problem with this is that over the years, no one has really been able to explain what was going on with me.

OK, so I am in the doctors on Monday and my blood pressure is elevated and my pulse is as well. I hadn't eaten well the whole weekend so they wanted me to fast and have some blood work! Good thing for me, I had been fasting for over 48 hours with just fluids in my system. I went right down and had the chest x-ray and the blood work done. My resisdent doctor was concerned but wanted me to just go home rest on some of the medications she had me on for both stress and for an antibiotic and she would call me back with the results.

Well, it took a bit of time to get home but by the time I had fill my prescriptions (10 total) and get home, she had called 7 times to talk to me. Well, her office was closed, but took my number and called me around 8pm that night to tell me that they wanted me in immediately for a CT scan the next morning, for my lungs. Done deal, tests were taken and again, shows what they already think, lymphoma. But no cancer markers in my blood at all.

The disease is called pulmonary sarcoidosis (click the name to go read more on it) And I pretty much show all the signs, minus just a few of them.

So I went back in yesterday and they wanted to take a CT scan of my neck as well, they wanted to see if it had spread. This is where it does become interesting. I had never had my neck really looked at, but my lymph nodes were always swollen lately in my arm pits and my neck. Well, it looks like that 'possibly' they have attached (the sarcoidosis) from my right lung to the lymph node on my left neck side.

So I'm on a heavy dosage of prednizone for now until they can get all the doctors notes and x-rays and ct scans so they can compare them. So, it's a wait and see game.

One things for sure, this steroid (prednisone - press the name to learn more about it as well) is making me have the munchies like crazy! I haven't eaten like this in years!!

The dosages are way crazy for me, but I guess I'm going to have to start learning. I'm at 6 pills a day for 5 days, then its 5 pills for 5 days, so on and so forth! Gonna be a wild ride!!

Again, this isn't really anything more than a personal diary for me to start keeping track daily of how I have felt.

The beginning........finally keeping track

Well,

This week has really started to show me that I should have been taking care of something a very long time ago.

Back in 2001 I was diagonosed with pulmonary sarcoidosis, by a doctor who performed a mediastenotomy (click on the name to learn more about it) on me.

It took several months for the results to come back, but it was very nice to find out that it was 'non-cancerous'! But that still left me puzzled as to what it was that I had and how I could have contracted the disorder.

I started doing some research on it thru the internet in 2001 and found that there was a hospital in Bethesda, Maryland, The National Institute of Health's Lung and Hearth division that was doing a test study on sarcoidosis. For the most part, I pretty much showed all signs of having the disease, but there were a few things that wouldn't put me at 100% for sure.

So I plan on using this page to start documenting my health better for my new doctors here in Naples, Florida help keep track of any changes more accurately.

This past weekend I ended up with some pretty serious swelling in my neck and my shoulders and luckily had a doctors appointment the following Monday. I struggled thru the pain and made it to Monday. I'm in some pretty good hands down here and working to catch them all up with what I have as well. It's all new to them right now not having seeing any of my old records to help guide them yet.

Let's see how this goes!