Upcoming Trip to U of Michigan

[Carebear]

Lucy,

I hope you are able to get a good sleep tonight.  And that you are given some answers...and solutions.  Good luck.   

[eyeamdry]

Yesterday, we left the house at 8:30 am and got home at 7:30 pm.  My husband was a champ during this whole time.   He had me in a wheelchair the whole time and transported me to and from all the destinations.  He is a bit of a reckless driver and ran into a few things/people.  I tried to sleep on the way home and did rest, but it poured rain the whole two hours home.

I did not find out a lot as was my expectation.  I had a chest x-ray first.  Then, because we got there so early, had to wait a couple of hours or more for a breathing test.  This breathing test was not the whole procedure.  They had me do a few 'quick" breaths into the hose.  They didn't have any of my previous test results there, so my visit with the dr was just about what she knew that day.  I have an appt to go back on April 1 and will have a 45 minute walk test, a longer breathing test and an MRI of my chest/lunts.  They are going to retrieve my MRI's from my local hospital as I just had a bunch done and they will compare them.

The dr was a young female and was from pulmonary, not sure how skilled at Sjogrens she was.  She did not commit to anything wrong with me, but when I cannot get enough air and speed to walk--something is wrong and at this time it seems to be my lungs.  She mentioned "something" going on in my lungs, probably related to SJS and being possibly intersistal.   I was not given any meds to try and still have various inhalers and might use them once or so a day.  Don't think they help, but might.  I still plan on a cruise vaca, plus a week in Fla last half of March.  We are flying to Fla and back to save me from the long ride from Mich.

The dr did talk about me having "more aggressive treatment" than methotrexate.  I said my rheumy had never brought it up.  But then, I always have to see the PA and never the rheumy although I have an appt with her on April 3.  I asked the dr for an example of what she might be referring to and she said Humira.  I know nothing about Humira except the dumb commercials I see on tv. Lucy

NOTE:  My temperature was 93@ and I voiced my concern.  Dr said "you look good" and so we assume you are not "sick" in a way that would blah. blah. blah.  93@!!!   I took it at home not too long ago and it was 95@ and that was the lowest I'd ever had.  Wonder when they "WONDER" about your low body temp?

[gurs]

Lucy,

Please see Dr. B herself and not the PA's next time..she might have a clue what is going on with your lungs too.
It amazes me how much she really does know? worth a shot right? Hope you can find some answers...I know how distressful
this can be.

Dont give up...keep going until you can find someone to help...I think a biopsy is the only way to tell on some things?

Gursie

[eyeamdry]

@Gurs- Dr. B's office called me tonight as they got a report from Ann arbor.  I am taken off methotrexate.
I will be seeing Dr. B next time for sure per their office.

I had a phone call from my rheumatologist and she had gotten a report from my trip to U of M.  Although she was not there nor did she order all the tests I'm having and have had, thinks I have pulmonary fibrosis.  This fits in with "intersistal lung disease" the drs at U of M mentioned.  On April 1, I have an appt with U of M again.

I have been taken off methotrexate.   This has likely caused some of the problem.  I also have and have had COPD for a long time.  I have recently stopped MTX for two months to see if my breathing improved.  It didn't help my breathing and my back and hip pain came back.  I've been back on MTX for a couple of months and it's working again.  I have to stop taking it immediately.  This means I will be in substantial pain in my back and hips.

I am still going on our cruise in mid-March and spending a few days in Fla after that.  We are flying to Fla and back so I don't have to endure the long car trip. 

[irish]

Lucy, I wish they could get you on some new med for the pain before you leave for your trip. Good luck. Irish

[Styx]

Lucy, here's some hand-waving from me

1) I'd be curious to see if you continue to improve after restarting  MTX, even though it never fully took care of your symptoms.
2) I commend your doctor for their willingness to "play jazz", but I'm curious about why he picked Humira. I think an Anti-TNF would be the last thing on my mind for pretty much any lung disease you might have. Anyone know what he might be thinking? If I was throwing darts blindfolded, I'd pick rituximab instead or an alternative cytotoxic.

I hope you feel better!

Styx

[eyeamdry]

Styx, I am being taken off MTX permanently.  It is the cause of (or partly the cause) of my pulmonary fibrosis.

I will be sorry I'm off it because I know exactly how I'll be as I was just there a couple of months ago.

The other stuff (Humira or whatever) remains to be seen as I have a bunch of tests first, repeat tests are some of them.  My rheumy will consult with the drs at University Hospital I'm guessing.  Not being able to breathe is the pitts as I can't even walk at times without stopping to "catch my breathe."

[CMNK12]

Sorry to hear you have pulmonary fibrosis   Did they mention cellcept? Are you on any steroids now? How about Oxygen? If I am asking too many questions I apologize . I wish you lots of luck and will be praying for you Lucy. My best friends Dad had Pulmonary fibrosis. Take care and have a good vacation too. CK
HEY..National Jewish Health website has a lot of info on it regarding lung issues. If you are interested. CK

[Bucky]

Lucy - you have definitely got something that the doctors are looking into if two doctor offices called you after your trip to U of M.  Hopefully, they can give you some answers at your upcoming appointments.  Best of luck to you - I hope they will be able to figure out something that will help with your breathing.

I am still going on our cruise in mid-March and spending a few days in Fla after that. 

I sure hope it's not on Carnival!   

Bucky

[eyeamdry]

I sure hope it's not on Carnival!   

Of course, it is!  Really.   I'm a good swimmer.

[Suslew]

Lucy,
I hope you get answers! They are just so helpful when planning the path forward!  Speaking of planning- Enjoy your Vacation!  I'm jealous!

[eyeamdry]

I looked at the Jewish National Health site.  Thank you for that info.  I will tuck it away and would have no problem going there if I don't get the right help here. Lucy

[CMNK12]

Just checking in on you. Hope all is going well and you are getting some help. Enjoy your trip and let us know how you did, ok? Take care. CK

[eyeamdry]

CK. I'm doing PT for strength as my legs do not want to work, or work well enough to be of much good.  I'm still winded with the least exertion.  I often have to "stop" what I'm doing to get my breath to catch up.  I almost cancelled out trip as I bought cruise insurance just in case we couldn't go.  I was feeling sad, battered, tired and just sick of the whole thing last night.  I told my husband who I think would just as soon not go, but is going for me.  (We're celebrating our 50th anniv and I want to do something different.

After I told hubby, he accused me of flip-flopping about this trip.  I had to correct him.  There was only ONE flip.  I got to thinking that certainly I won't be the oldest or the most "crippled" on the cruise ship.  There is always ppl in wheelchairs and the like.  Besides, if I don't feel up to much, I can stay in our cabin.  My hubby likes to watch tv anywhere and he would not complain as long as I let him watch what he wanted.  I have two more PT's this week and probably one or two next week and then we're gone. 

Our flight is non-stop going down and coming back we stop at Detroit to catch a local flight.  I ordered a wheelchair for then between flights.  Detroit airport is huge and I would collapse in a pile trying to walk through it.  I  think the PT is helping me get my muscles and strength get a bit better.  It's hard to measure because other than pulmonary fibrosis and the Sjogrens and fibro, I don't know what is wrong with me.  When I get back, I will be at U of M within 2 days for more testing.  Maybe they can narrow my problems down to where something will help.  Lucy

[CMNK12]

Well try to have a good time, wheelchair or not. 50 years is a wonderful thing to celebrate. Let the cruise ship folks spoil you and the hubbie.

Don't give up either, okay? One day at a time. I know it is hard and frustrating, but I for , one am pulling for you.CK