The results are in....

Today was my follow up appointment with Dr. Adl regarding the bronchoscopy. The results were able to rule out infection and combined with the results of the earlier CT Scan and Pulmonary Function Tests everything points to the myositis being active again.

Basically Dr. Adl believe that the myositis and interstitial lung disease that came with it has indeed advanced. There are basically three levels of pneumonitis and the level that I am at is the preferred one. It is called nonspecific interstitial pneumonitis (which basically means inflammation of lung tissue).

Dr. Adl's treatment recommendation is high doses of prednisone with a follow up pulmonary function test and CT Scan in 4 months (like 60 mg for four months....yikes).
In 4 months we will see how I am doing and at that time if there are no improvements they may switch and put me on a different immunosuppressive drug.
From past blog entries you know how much I do not want to go back on prednisone.

I did share my concern with Dr. Adl about going back on prednisone so she is going to defer to Dr. Cohen for that decision. She emphasized how very important it is that the three of us (two doctors and me) stay in communication with each other.
I learned something new; the "ground glass" which is what it has been called in the past can be reversed with proper treatment. That's good new and a good thing to focus on.

In our first office visit with Dr. Adl she recommended that we use a bed wedge and elevate the head of our bed 8-10 inches. I do not have noticeable heartburn or acid reflux so I did not immediately act on this suggestion. However, today when I asked if I needed to continue taking the heartburn/acid reflux prescription and she said "absolutely", I followed up with the question"how important is that bed wedge?" Apparently it is very important and may help prevent any additional factors from taking their hits on my lungs which are already compromised.

You don't have to tell me twice...off I went to Bed, Bath and Beyond with my 20% coupon in hand. I am now the proud owner of the bed wedge pillow.

So, it wasn't great news, but it's not terrible either....and so we continue, taking it one day at a time.

Thanks for checking in.
Kris

I have a small nose...

Well, yesterday has come and gone. The procedure is over and now it's another week of waiting.
I will bore you with the details because some of you want to know what it's all about, others just want to know I am OK.
I am OK. If you want a play by play of yesterday, read on...

Auntie Vicki came over to get the kids off to school. Bill took me to the hospital.
I got prepped for the procedure with an IV that would supply me with the fantastic medication that would help me forget.
They wheeled me in to the room and hooked me up to all the necessary machines. A respiratory assistant had me breathe on a misting tube that numbed the back of my throat and tasted like crap. Then she took a tube (about the size of a travel toothpaste) filled with a lubricant and had me snort it...the whole tube. This also smelled terrible and made me gag. At this point I began to wonder when I could get the "forgetting" medicine. Now, the respiratory assistant said that she needed to prep my nose for the tube that the doctor would use. She took a very long q-tip and started working it into my nose and down my throat. First one side, than the other, back and forth, over and over. This was more than a little uncomfortable...and the breathing exercises that I learned when I was pregnant with the kids came in handy.....WHERE IS THE FORGETTING MEDICINE.
The doctor came in, asked if I had any questions and that is the last thing I remember. Apparently it was all done in about 20 minutes. She washed out my lungs with a fluid and than sucked the fluid back out. This is what they will be testing over the next week to determine what is going on in there.
I was in recovery for an hour or two letting the sedation wear off and by 11:00 we were headed home. Bill bought me a chocolate shake because my throat hurt, tucked me in bed where I stayed until about 4:00.
When I woke up I had a terrible pain in my back under my right shoulder blade. I could not take a deep breath without there being a shooting pain and this continued for about 45 minutes before I decided I needed to call the doctor back.
Off we went, back to the hospital, this time with the whole family in tow. I needed another x-ray to make sure that my lung had not collapsed. Good news...my lung had not collapsed. I had fluid remaining from the procedure and that is what was probably causing the pain. They sent me home with instructions take the deep breaths even if it caused shooting pain to take more Tylenol and/or Motrin. If the pain got any worse, I should head to the ER.
Back home we went...this time Bill stopped and bought me a strawberry shake. ;0)
Two shakes in one day; I am a lucky girl.
This morning when I woke up, the pain was gone. My throat is a little sore but not nearly has as bad as my sinus cavities. They certainly feel like they took a real beating. Did I mention in the end that my nose was too small for the procedure and they had to go down my throat? I wish we would have known that before the q-tips.

So, I am fine. It's back to waiting. I will post more when I know more.
Thanks for your prayers and for checking in.
Kris

The nurse called....

The nurse called yesterday just to check in and see how I was feeling and to see if I had any questions. I didn't call her back. I had to take some time to think about it which I did last night as I was trying to fall asleep. From very deep in my being came tears a flowing....I cried myself to sleep. It was a combination of being scared, tired, achy, worried, etc...

Scared of the procedure: will it hurt, will it work, will it provide the answers they doctors are looking for, what will they find, how will they treat their findings?

Tired: I have been taking advil PM to sleep at night. It's working but I don't want to take it every night. I wanted to fall asleep but I couldn't turn my brain off, you know...the scared and the worry were taking over.

Achy: my hands ache nearly all the time now. It's bad at night when I am laying there trying to get comfortable. Where should I put them? On my stomach, over my head, under my pillow, it's just hard to find the right placement.

Worried: I watched the show "Parenthood" last night. I loved it but I laid in bed wondering what kind of parent I am being. I think I am a good mom, but how do I know for sure? Worried that the procedure next week won't provide the answers and we will need to keep searching. Worried that I will have to take prednisone again. The drug has terrible side effects and I don't like the person I become when I am taking it and I took it for nearly three years because my body and disease became dependent on it. It took forever to wean myself off of it. The other day someone (not my doctor but someone with personal experience with autoimmune disease) said I may just need to take a low dose forever to keep my disease in check. NO, I don't want to. There has to be another answer. Please let there be another answer.



Today I called the nurse back. She said the procedure is fairly quick. I need to be at the hospital at 7:30 and should be on my way home by noon or so. They will get an IV set and give me a conscious sedation. This means that although I will be "awake" I won't be able to remember what's going on. She said I will probably have a sore throat the next day but there shouldn't be any other side effects. I would be lying if I said I wasn't scared or worried anymore but I do feel much better about it.



I talked to Emma and Jacob about it last night. Jacob said he understood exactly what was going to happen as he had watched "Animal Emergency" and saw the doctor put a camera scope down the throat of a pelican and they got fishhooks and fishing line out of it's stomach that way.



So that's the update. It feels good to get it out there. Please know that although I don't sound strong, I am. My life has been planned by our great Creator, He holds me in the palm of his hand and I can feel His strength.



Good night.

Kris

For a week now...

For a week now I have been thinking about writing about friendship. It was a week ago last Friday that I went away for the weekend with a fairly new group of friends. We had a wonderful time and I came back wondering how it was that I was blessed to be able to add new friends to my life in my forties.
But something else got me thinking....what do I have to give to these new friends? What am I giving to the friends of my thirties, the friends of my twenties, the family members that are more to me than my sisters or aunt, uncle or cousin? What do I give? Do I even know how to be a good friend? How is that defined these days?

Today I got a facebook message from a college roommate. It made me smile and think of her and the fun we had. Are our lives totally different now? Would we have anything in common except for memories? I don't know. I do know that I think of her every new years eve and hope she is doing well. She was a wonderful friend.

I received an email from my cousin who has shared kind words and prayers and faithfully a birthday wish, anniversary blessings, and "just because" notes for years and years even though I am TERRIBLE at sending these wishes to those I cherish and call "my friend".

This weekend I got to spend some time with a friend I met early in my professional career. She was with me through my dating life with Bill, with me the day we got married. I will cherish the note her husband left on our car window the night before we we had our first baby. They had had their first baby a year before and he shared some wise and wonderful words that night as we stepped into this next stage of life. We each have two kids now that are very close in age, but our lives are busy and mostly we see each other just in passing. Does she know how much her friendship means? What can I do so she knows this?

To you my friend, from high school, college, my twenties, thirties and forties...tonight I will use my blog to reach you.

My friend, if you are out there reading this entry, I hope you know how much your friendship means to me. Thank you for your kindness. Thank you for your prayers. Thank you for reaching out with your words and your hugs. I have a lot to give to our friendship. I can be a great listener, although my hands are weak, my heart is strong...please lean on me. If you need a last minute childcare provider, someone to pick up your child after school because your appointment is running late, someone to share a bottle of wine with because you need to sit with a friend. Someone to walk with (I'm good for about 20 minutes if you are doing all the talking) I am here for you...my friend.
Good night.

A wise woman said.....

Maya Angelou said this:
'I've learned that no matter what happens, or how bad it seems today,
life does go on, and it will be better tomorrow.'

'I've learned that you can tell a lot about a person by the way he/she
handles these three things: a rainy day, lost luggage, and tangled Christmas
tree lights.'

'I've learned that regardless of your relationship with your parents,
you'll miss them when they're gone from your life.'

'I've learned that making a 'living' is not the same thing as 'making a
life.'

'I've learned that life sometimes gives you a second chance.'

'I've learned that you shouldn't go through life with a catcher's mitt on
both hands; you need to be able to throw some things back...'

'I've learned that whenever I decide something with an open heart, I
usually make the right decision..'

'I've learned that even when I have pains, I don't have to be one.'

'I've learned that every day you should reach out and touch someone.
People love a warm hug, or just a friendly pat on the back...'

'I've learned that I still have a lot to learn..'

'I've learned that people will forget what you said, people will forget
what you did, but people will never forget how you made them feel.'

No new autoimmune disease fighting for attention...

I just talked to Dr. Cohen and she gave me the results of the other tests.
There are no other autoimmune diseases trying to fight with my myositis and everything else looks fine too.
The CPK number is just outside of the normal level at 189. She said in most cases that wouldn't require a second glance but for me it's up from 78 so that might be why I am experiencing increased fatigue and the pain in my hands, wrists and joints. To put things into perspective though, it was over 3300 when I was first diagnosed. I have to remember how far I have come.

Dr.Cohen does not believe the methotrexate or azathioprine that I took in the past is what is in the tissue of my lungs as that is very rare side effect and often clears itself up. It's been well over a year since I took either of those medications. She did say that Dr. Adl is the expert in the area of lungs though and that is why I am seeing her. She agreed that no further changes in medication need to happen until the results of the brochoscopy are back. I will schedule a follow up appointment with her once we return from Florida unless my symptoms worsen (is that a word?)

I am glad there is nothing new and I plan on enjoying the sun and fun the weekend has in store for me. Sounds like I might be going somewhere warm. That is not the case, just the forecast here in Wisconsin.

Bronchoscopy

Bill went with me today to see Dr. Adl. She was very nice but more important seemed to know her stuff. She explained that above all else we need to figure out if what is going on in my lungs is an infection. Once we know that, we can figure out how to proceed. I am scheduled for a bronchoscopy on the morning of March 24th.
A bronchoscopy is an exam used to help diagnose lung problems. This exam provides a direct view of my breathing passages. A thin flexible tube called a bronchoscope is used. A special light and tiny camera are attached to the tube. The bronchoscope will be used to gather tissue samples by brushing and biopsy. This is an outpatient procedure and if all goes well, shouldn't take more than 45 minutes to an hour.
I am guessing that I won't know any more until then.
Thanks for checking in.
Kris