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My first Paget’s Disease Consult

September 3, 2011

All I can say is, what a doctor visit!

Right out of the box after arriving in the examining room, he wanted to know what I know about Paget’s disease. Kind of surprised by the question, I told him what I know. I have to admit, this is the first time that I have had a doctor ask what I know. He told me that I do know a lot about the disease. He then went ahead and explained it again, this time tidying up the loose ends in my “Cliff Notes” explanation. Actual, I think he was kind of shocked that I took the time to research my illness. I guess people don’t do that.

After that we went in to the treatment phase of the conversation. He explained that due to the bone effected by the disease, that he thinks that treatment was not necessary. I was a little shocked by this too. Wow, two shockers in a row. This visit has started to get interesting now. Now for the third shocker. He wanted my opinion on his decision.

So, I gave him my opinion. Hint, I like giving my opinion, especially when it’s my health involved. I explained that I thought this disease was somehow effecting my asthma and giving me an inability to control it. One of the complications of Paget’s Disease is that it can grow and rebuild at alarming rates than normal, which can take a heck of a toll on the cardiovascular system. From my experience, it doesn’t take much stress on my cardiovascular system to set my asthma off on a downward slide.

He listened and then turned on me. He explained that my asthma must be significant and not being able to breathe normal, must be very stressful. He went on to tell me that I make my decisions emotionally, but he makes his decisions “Professionally”. That’s right folks, I put professionally in quotes. What?! Professionally?! So, Mr Doctor, you know all about living with asthma and having Paget’s disease? Better yet, Mr Doctor, you explained first think that you have had very few patients with Paget’s disease. Since he has little experience with these patients, I have a hard time believing that he was an expert on this either. Heck, we both can read medical papers, unless only doctor can be the smart ones in the room.

Needless to say, this really made me hot under the collar. My wife was in the room also, so I had to keep my cool because I would hear about for days about acting like a jerk. We talked about the visit later and she did not get the same feelings that I did. I guess the difference is that I don’t trust doctors and I think she does. Plus, she works in the medical industry and has heard of him. She even tried many years ago to get him as a doctor because of his reputation of being a great Rheumatologist. She could not get in so she ended up getting one of the new doctors in the group. My poor wife, I can’t imagine the pain this woman goes through daily with her arthritis.

In his defense, I do understand where he is coming from. The medication that fights the disease also effects all the bones in my body. Seeing that this disease is in a bone that really isn’t that significant like being in my legs, arms, and head. It is in no way going to impair my quality of life, like being in those other bones. He feels that the effects of the osteoporosis medication on my healthy bone tissue out-weighs the benefits. I get it!

Nope, this is not the end of the story. It really starts to get interesting now.

Next thing I know, he starts looking at different stuff on his very nifty tablet computer and changes his mind about my treatment (or lack there of). A normal Alkaline Phosphate is 120, mine is 326. Yeah, my GP (General Practitioner) didn’t explain to me that my levels were really high. No wonder my GP whisked me off to a specialist. So the doctor said the recommendation at my level of Alkaline Phosphate is treatment with medication. Yes, that’s right folks treatment! Then he tells me that he is going to have to take back what he said earlier. He explains that the guidelines change all the time and this is the current recommendations. Hmmm…So Mr Doctor! Wouldn’t it have been better to have gotten the current recommendation before telling me what a “Professional” you are and suggesting no treatment? (Yeah, I was so frustrated that I was sweating. Surprised I didn’t spout off at the mouth and be a jerk.)

I am not done.

He decides to check out and feel around the effected area. Oh my, my left shoulder is larger than my right do to the disease (Didn’t know that. “Sigh”) and is warmer too. Yep, the disease is really active and going nuts on my shoulder-blade. Darn, doctor, it would have helped if you would have checked me out first before telling what a “professional” you were. (I can’t tell you how much it pissed me off when he was telling me that he was the only professional in the room and I was being too emotional about it!)

The treatment recommended to me was Zoledronic Acid, which is administered intravenously. Oh crap, not the needle thing again. Here I thought I would going on Fosamax or something, not an infusion. The drug’s name is Reclast and it is potent. For a osteoporosis patient, this treatment is administered once yearly. This drug is active that long, that’s why I feel it is potent. The cool thing, this drug can make my Paget’s disease go in to remission. Only blood test are needed to check my Alkaline Phosphate levels (Yikes, every six months). If it gets high again, then I get another treatment. We are talking about years between treat; not daily, weekly, or monthly drugs. I like the sound of it. To bad it has to be an IV. The drug must be very expensive. I have to wait to see if my insurance will pay for the treatment first.

Closing thoughts;

To be honest, this was a nightmare doctor visit. I was not happy with what happened. He might be highly respected in the medical community, but I just wasn’t really impressed with him. My gut feeling is to call my GP on Tuesday and ask for a referral to another Rheumatologist. I am just not interested in being under his care. Yes, the guy knows his stuff but he has no problem putting me in my place. I DON’T need to be put in my place. Next time, Mr Doctor, don’t ask for my opinion. My pulmonologist doesn’t do that, which is good because I suspect it would get confrontational.

Stay tuned! I will keep Y’all informed on the progress. That is, if your interested? Hehe

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Rheumatoid Doctor Visit Tomorrow

September 1, 2011

Tomorrow I get to see my new rheumatoid doctor for the first time about my newly discovered Paget’s disease. However, for the life of me, how does a rheumatoid doctor fit into this. I would think I would be going to a orthopedics doctor. I did some research and this disease is handled by Rheumatology.

I am kind of looking forward to this visit. In my exhausting research of Paget’s disease (to a point of obsession), I discovered that this disease could make the bone create more blood vessels to feed the bone, in turn, causing strain on the heart. Some sufferers could develop heart disease from this.

Here is my theory. I wonder if I have just enough stain on my body due to this disease being active that it could be keeping me from gaining control of my asthma. I do need to get this disease under control anyway. I just can’t help be wonder if it could make my asthma better. Time will tell, but I would like to think there is some hope in this.

I will try to write something up over the weekend if time permits. Hopefully the visit goes well.

I have posted a couple of blog posts this week. If you can spare the time, please check them out.

August 2011 – Training could have been better
Race Report – 2011 Abe’s Amble 10k

Take Care!!!

Another Bad Year

August 10, 2011

Huh (as I shake my head), and to think that I thought 2010 was the most biter sweet year of my life. It was a bad year for me because of asthma diagnosis and an awesome year because of the birth of my second son, plus, my first half and full marathons thrown in the mix. This year, the lovely 2011, things have not been that great. I have watched my athletic abilities erode away. My asthma refuses to submit to anyone’s will. Now, my general practitioner (GP) has discovered something new and chronic that I will have to deal with the rest of my life.

Last week my GP had me go in for a bone scan because my alkaline phosphatase has been elevated for a year. Well, I got the test results. It seems I have Paget’s disease in my left scapula. Paget’s disease effects the bone as it regenerates its tissue causing the bone to become brittle, deformed, or decay. All the medical sites I have read say that symptoms are rear but there are many, with fractures and bone pain being the ones I am concerned with. I think there is fatigue in the symptoms too which I feel is also happening to me at the moment. Although, I don’t know how much of that could be from Paget’s disease when I have asthma to deal with too.

Yes, this disease is chronic. This seems to be the story of my life. I will always have this disease eating at my scapula. There are treatments to keep this thing under control. I will have to start taking bisphosphonates (like Fosamax) and calcium to keep the disease from remaining active. More than likely I will have more alkaline phosphatase blood tests to make sure the meds are working, seeing that the test is a key indicator of the disease being active.

How do I feel? Yeah, the Paget’s disease is not life threatening, but I am a little upset. I mean how am I supposed to feel about this? All morning I have been fretting about this. Hey, I have white-coat anxiety and the possibility of dealing with the blood work and bone scans weigh heavy on me. I am just this way and really can’t help it. I am the worst person to have chronic disease.

I see a specialist on this the first of September. So, I will have more details then. Until then, I will start coming to grips with this new diagnosis.

Thanks for the support, I need it!!!

Under a Rock

August 4, 2011

Bone scan is complete. Now the unpleasant wait for the results.

Yesterday I woke up pretty rested. I am still tired a lot, so I guess it over overrode my nervousness. I slept really well. I decided to work for two hours before the scan because I need to do something to keep me busy. That way I don’t fret too much about that stupid injection. I also took my “I don’t give a hoot” pill while I was at work, so my wife picked me up because I am not supposed to drive.

The radiologist wanted me there 30 minutes before the injection to get my check-in paperwork all sighed and information reviewed. That actually went real quick because I tend to be a frequent visit to this hospital system, so they have up-to-date records on me. Really helpful I must admit, but sad that I utilize their network so much.

The nurse came and got me after a little wait and it was time to get the injection. Thank goodness I was medicated because I was nervous enough. As usual, I tried to stall and the radiologist came in and did the injection. He told me that she was new and seeing that I have anxiety, he could get it done quickly the first time. I think the hard part is to just letting this happen and with the help of the “I don’t give a hoot” pill, I did just that. He found a good vein in my hand. So, I laid down on the examining table, gave the guy my hand and it was over pretty quickly. I did get my normal light headed from the sudden release of nervous energy, but recovered quickly from that too. Now for the three hour wait.

Since my wife and I were kind of hungry, we headed off to the cafeteria for something to eat. My wife works for the hospital so if she buys, we get an employee discount. I had a really nice custom made chicken wrap, it was good. After that, my lovely bride had some work stuff she could do while we were there. The three hours seemed to fly by.

Three hours were up and I was headed into radiology for my bone scan. When I first walked in it was like I was into sickbay on the Starship Enterprise. It was scifi looking contraption. The radiologist had me empty my pockets and take off my belt. He had me lay down on a slender platform and put boards under my arms to help me keep them at my sides. I was instructed not to move and the machine started. It was really slow going, so I closed my eyes and tried to think about pleasant things. About half way through I was so relaxed that I was catching myself falling asleep. The thing has a very soft vibration which was kind of soothing. Time seemed to pass by quickly and it was all done before I knew it, other than the injection, the test was no bid deal.

Ahhh…now the wait for the results. I asked the radiologist about when the results would be in my doctor’s hands. He told me that if my doctor does not get a hold of me by Friday to give the doctor’s office a call.

The wait, this is when I would like to just crawl under a big rock. Not sure what is going to happen next. I keep being reassured by family and friends that everything is going to work out. How do they know?! I know, they are trying to support me and make me feel better. Unfortunately, there is something going on with my body and the doctor is going to find it soon.

Frankly, I would rather not know.

It has taken me quite awhile to come to grips with being asthmatic. I am a proud asthmatic and am quite comfortable with who I am now. With that said, I am getting so tired of hearing people making humor of all that is happening to me because I hit the age of 40. I am not falling apart people! I don’t find it the least comforting or funny!!!

Even though the outcome might be favorable, I can’t seem to shake the need to worry about my future. Right now, I am scared.

Tests, Tests, and more Tests

August 2, 2011

This has been the story of my life for the past year, nothing but tests and bad news. Yeah, I am kind of climbing on my soapbox for this post. So if you don’t care for my whining, you might want to stop here.

Probably not a surprise to most of my readers, I have white-coat anxiety. Nothing like getting my blood pressure checked and it’s through the roof. No, I really don’t have high blood pressure. I check mine at home on occasions and its normal for the most part.

I keep getting told that going to the doctor is no big deal. Frankly, I don’t see it that way. I actually hate the whole thing and it isn’t getting better. I was asked by the respiratory therapist why I am so worked up when I come to the pulmonologist office. I told her that I am getting so tired of hearing the same old unpleasant news about my asthma, why won’t I get worked up. First off, I don’t want to be there in the first place and if I could get by with out the meds, I would steer clear of any doctors’ office. Plus, the biggest thing that can send me through the roof is anything that stabs me (the dreaded needle). It seems like every visit to my general practitioner (GP). He has some kind of lab work evolved. Why in the hell would I want to keep putting myself through that? In my GP’s defense, he really is a nice guy but he has been a major pain in my arm.

Ok, for the latest and the reason for this post. It seems I keep bombing my Alkaline Phospatase Test which means two things, screwed up liver or bones. Honestly, I really didn’t want to take this blood test again. I mean what’s the point. My wife, bless her heart, wouldn’t allow me to let this go and the GP wouldn’t let this go either. Anyway, I called the GP yesterday for the results of my test (mainly because my wife wanted to know, I would rather not). Instead of getting the results of the test, I get hit with a bone scan test in two days. I mean, wow, that is like fast. Frankly, I only see that kind speed when someone is being diagnosed with cancer. I had a co-worker who had breast cancer and they had her in surgery in a week. This, unfortunately, scars the crap out of me how fast things are moving. Heck, my GP didn’t move this fast with my asthma diagnosis.

What do I think this means? My guess is I have some kind of hairline fracture some were that could be causing this, that would be a best case scenario. Although, having fracture could be caused by something that would be the worst case scenario. Well, since I don’t have much of a choice, I guess I will be finding out shortly.

Oh and I might add, this test requires an injection of crap into my vain. Ugh…not the stupid needle stuff again. Yep, fretting pretty badly about tomorrow. And to think, people wonder why I get worked up. Grrrr!!!

Climbing off my soapbox now…

How’s it going?

July 19, 2011

Around my neck of the woods there is a greeting that seems to used a lot, “How’s it going?” Heck, I even do it. The normal response back is usually, “Good and you”. Again, that is also my response too.

Yet, when I am feeling low due to asthma, I often struggle with just saying “Good”. There has been times that I have opened up to co-workers who expected to get the normal response, but ended hearing more than they bargained for. Yeah, probably wasn’t a good idea seeing, the whole time, they had a blank look on their face and just being courteous to me. Yeah, I should have just let things be but sometimes I just need to talk to someone.

Lately, though, I have just not burdened people with my disease. Yes, I tell them good when I can hardly get the word out of my mouth. I am not saying that no one cares about me, just saying that I don’t want to put them in a position that they really don’t want to be in. frankly, my everyday drama of asthma gets to be old news.

I think that is where an asthma group comes in. When I was first diagnosed, my friends and co-workers where my only support and boy did I over us their hospitality. At the time, I didn’t know there was asthmatics out there using blogging, Facebook, and Twitter to connect others with asthma. For me it was a big deal. There are times when I do need sympathy and it is hard for non-asthmatics to do that, which I can understand.

I have big news for new adult-onset asthmatics, you are not alone! Good way to start getting connected with other asthmatics is start hanging out on Breathinstephen Forum or SARP Group on Facebook. There is always someone who will listen and relate with what you are going through. Asthma is a tough misunderstood disease. It is often hard to cope with and definitely not something a person can deal with emotionally by themselves. So, hang in there!

Ugh…More Blood Work!

July 17, 2011

Yep, more blood work. This time it not about asthma. It seems that my Alkaline Phosphatas Enzymes is above normal. At first my GP thought it had something to do with me smacking my knee with a hammer last year. But, after a year, my enzyme level is still high. (Sigh)

Anyway, I am not going to worry too much about this. There is many reasons for this, some not so bad, but some not so great either. That is where this current blood work comes into play, it is a more comprehensive test.

So, here we go again. Ugh…Blood Work…