I saw Dr H!!!

I was in Philly July 16-20 so I made a date with Dr. H to visit with him.  My mom came with me.  It was SO FREAKING AWESOME to see him again!!!  He hasn't changed much, only his wardrobe is more up to date.  I did miss the tweed jackets!

We chatted for about an hour.  Just about advancements in CF medicine, my health and life in general.

It was like seeing an old relative that was super beloved.  I am so thankful I got to see him.

Clinic Update

So clinic went better than I had expected.  The past few weeks I have been waking up at night coughing my face off.  I feel like I have a tickle in my lungs that just won't go away.  I prop myself up some more and fall back to sleep once the fit is over.  So I was kind of expecting my numbers to be the same or even down some.  However, they were up!!!  I went to a whopping 37%!!!  1.11L, I haven't been that high since November right after that clean out.  So the cold weather leaving definitely helped.

There is a good chance I have bad allergies so she suggested I see an allergist.  Adding it to my to-do list.  She recommended I try benedryl if my eyes are too much for me.  Right now I have raw marks under my eyes from itching.  First thing she said to me when she saw me (after hellos of course) was "what happened to your eyes!?"

She introduced me to one of the pulmonary resident's at BWH who was making his rounds with her.  So I got to speak with him first.  He said from my chart and what I told him that I probably have undiagnosed and untreated asthma.  Something I have been saying for a few years now but no one listened.  So he mentions Spiriva, and I am getting an rx for it!!!  Kind of excited about that.  I have heard great things about it and cannot wait to see if it helps my inflammation issues.  I am also doing a week of Prednisone to see if that helps my allergies.

And finally, I did it.  I made the choice to leave my clinic and start new at MGH.  I have an appointment for June 2nd tentatively set up.  I was a little hesitant at first because of the changes they want to make with my care, but then when I went to check out and make a new appointment, they couldn't do it because the summer schedule was up.  So I am supposed to call back in June to make an appointment.  But I will just have to call to get some things sent to MGH and then tell them I am leaving.  No need to cancel any appointments huh?

Oh and OMG!!!  I head back from Dr. H!!!  From Philly.  OMG I was so excited to see his email pop up!!!  He told me to stop in any time I am down there and he will make time for me.  I cannot wait to see him!

Pulmonary Rehab and CFRD update

Friday was my first day of pulmonary rehabilitation.  It was not too bad.  I enjoyed myself.  Basically it is monitored exercise, well not basically that is exactly what it is.  You walk on the treadmill, use the stationary bike or the arm pedal-thing and the physical therapist monitors your heart rate and O2 sats and makes sure you aren't gonna pass out on him.

Our therapist is awesome. I really like him.  Very friendly and outgoing and really enjoys his job.

There were 3 of us on Friday but will be 4 on Monday as the one woman was sick.  So far I am the youngest person.  Not surprised.  The older lady is on O2 and has COPD but recently had pneumonia and now needs some rehab to get back her lung functions.   The other woman I am not sure about.  She seemed OK with great O2 and heart rates until she started walking on the treadmill and then she plummeted and almost passed out.  Very strange.  She had also never used a treadmill before so he had to show her how to walk on one.  That boggled my mind but I have to remember not everyone has grown up using these things for medical purposes.  The older lady asked if I had had pneumonia and that was why I was there.  I just said no.  I figure in time I can let them into the whole world of CF and lung transplantation.

Diaphragmatic breathing is also something he is teaching everyone.  Luckily my old Dr H was great about pushing this and by now I have mastered it.  So at least that is one less person he has to teach.

As far as me, my O2 was decent, not going below 92% but my heart rate got high at 1.5mph on the treadmill so we stayed there for 20 minutes.  Over time it will get better and I will be able to walk faster and longer while having a not-gonna-keel-over heart rate.  I am glad to be out there and exercising and hopefully when the 18 classes are over I can continue on at home or maybe even find a cheap gym to go to.  I will be on a schedule by that point so why not right?

My only issue, and this is something that of course will get easier with time as well, is my sugars plummeted after exercising.  I happened to check when I got to my Jeep just to see since I know it can make your sugars lower.  I was at 46!  I quickly shoved 2 jolly ranchers in my mouth and hoped it would up quick.  I didn't even notice the low.  After 15 minutes I was up to 113 so I wasn't too worried then.  But shit like this I wish I had been prepared for.

I had an endocrinologist appointment on Tuesday and I walked away from that knowing less than when I walked in.  Only thing good that came from it was blood work to test me for Celiac's.  I was not happy with her at all.  I felt like she was saying my positive results on the OGTT were false and that I am not CFRD.  May be so but lady I drop and have highs so apparently something is off with my pancreas beyond the normal shit.  She said I don't need insulin, which I was expecting since I don't get really high (only with high sugar things like soda and donuts) and I have lows on my own (see exercise lol).  But telling me nothing of any use as far as diet, what to eat with what to avoid highs, or lows, and saying I don't need to come back for 6 months is not helpful to someone who has just been told they have diabetes.  Though if I notice I am over 200 often 2 hours after a meal or I go over 250 once, 2 hours after a meal I am to call her prior to the 6 months.  So I guess it is a wait and see where this goes diagnosis.

That is about it for now.  HAPPY BIG GAME DAY TOMORROW!!!!!! (since we can't say S*per Bowl anymore lol)

Really Effin Frustrated

I had my clinic appointment again yesterday and I left feeling really frustrated and annoyed.  I felt like nothing was accomplished.  My PICC line was pulled and I got some information about a study I am going to do, but other than that, it was almost pointless.

There were a few good points and I should explain those first before I begin my tirade on everything else.  My lung function is back up almost to baseline.  I blew 1.31L, 45%.  My highest is still only 1.45L so I am not too far behind.  That was also a fluke in my opinion, as most of my numbers range from 1.30L - 1.35L.  So technically I am baseline.  Because of my numbers being back to normal, they pulled my PICC.  I am looking forward to my first PICC free shower in a little while!  I am also no longer culturing Steno Malt.  My last one was free of that, though I did culture Class B strep.  And the one before that I cultured Aspergillus (spelling??).  Both along with my normal PA.

Now for all the annoying, why I am so frustrated things.

First was the results of my sleep study.  I didn't de-sat below 89%.  This means that my insurance will most likely refuse to pay for my O2 concentrator.  She said that I could probably use 1L at night and it wouldn't hurt me, but the chances of insurance allowing me to keep it are slim.  Even though I qualify for O2 with exercise, needing 2L.  She also said that when I am feeling run down and sick I will definitely need O2 with sleep.  Great, thanks, this is why I didn't want to do the study while on IVs and HEALTHY!  Now I will have to fight my O2 company and insurance to have them pay for the concentrator.  Just another headache that could have been avoided.  I have been using O2 for over 2 years now and I sleep like shit when I don't use it.   My blood gasses are all normal so I don't see an issue of using it.

My second cause for annoyance is that I am STILL running night time fevers. Now I know a little higher temperature at night can be normal.  But I don't see how 99.6 and 99.8 are normal.  IT'S NOT NORMAL FOR ME!  I run low, always have.  Even at night I would be around 97-98 tops.  So to jump 2 degrees just isn't right.  Maybe I am over reacting I don't know, but I want an answer and she didn't seem to have one.  Her response - OK.

My third and final issue is this wretched pain I am having across my chest.  Sometimes it is centered directly on my sternum and shoots outward when I inhale.  Other times it will go deep into my chest until it feels like it is going to shoot out my back.  The pain was so bad on Monday night I was almost in tears when I went to bed.  Motrin is helping it thankfully.  When I asked about it she asked if I was doing any push-ups or heavy lifting.  I said definitely not with a PICC in.  I mentioned being out in the cold and walking a little bit and she replied, "hmmm maybe".  Gee thanks.

I left totally annoyed, totally frustrated and wanting nothing more than to see Dr. H. again.  He knows me, he knows what is normal for me, he knows that this all would warrant some type of response other than "OK".  For this reason I am considering setting up an appointment while I am in Philly between Christmas and New Year's.  I'll have to pay out of pocket for it, but I don't mind.  I want to see him and get his opinion.

I know I need to be more assertive and demand answers but that has never been me.  I hate rocking the boat.    However, if I don't start I might not like what I have to deal with.

Inviting your CF doctor to your wedding....weird?

Is it weird to want to invite my old CF doctor to my wedding?  A topic came up on CF2chat and my answer included inviting Dr H to my wedding when I get married.  But then it made me wonder if that is strange.  And if he would really come.  And if I would have to invite the NP and one really awesome secretary that was there.

I would love to invite him since I had been seeing him since age 5.  He really is like a second father to me.  But I am unsure of the protocol for things like this ya know.

What do you all think?

And BTW, no I am not engaged or anything, like I said, the topic came up and I wanted to expand on it :)