Re: Visit to MUSC

[Guest guest]

Peggy, started out at 99 percent sitting. Doesn’t get much

better than that. Dropped no lower than 97 percent during the walk, although my

pulse rate went to 134.

Haven’t experienced the hurricane up the nose yet, so I

can only imagine how tiresome it must get. I’m on 2 liters at night, but that’s

hardly noticeable.

I think I’ve convinced this pulmo that part of my “SOB”

has to do with the fact that I get to the point where I feel that every breath

requires a cough. When that happens, you try not to breathe. He wrote me a prescription

for cough reduction that contains a drug. Unfortunately, it’s no longer

manufactured in tablet form, so I’m waiting to see if I can get him to

rewrite it in liquid form.

From: Breathe-Support

[mailto:Breathe-Support ] On Behalf Of Peggy

Sent: Wednesday, January 13, 2010 12:17 PM

To: Breathe-Support

Subject: Re: Re: Visit to MUSC

Bob, So how did your saturation hold up on the walk at 6L ? Last night

I was sitting here just watching TV hating the hurricane blowing up my nose so

I had turn it down to between 3 & 4 L. and if I sat very still I

stayed 92 or 93.. I am going to become a very quiet person just to give my nose

a break. I have a bit of a sore throat and my ears are hurting a little so I

need the break. As long as I'm not blue I'm good to go. lol Hang in there. enjoy the

days while you can still get out and around this house sitting is a huge pain

in the booota

Love & Prayers

Peggy, IPF 2004

[Guest guest]

WOW Bruce... you are amazing with such a positive attitude...I have always been a worrier so to have your strength is amazing.I'll never have that!!!To: Breathe-Support Sent: Wed, January 13, 2010 11:15:25 AMSubject:

Re: Visit to MUSC

Patti

Mine is quite complicated.

Early 2006, my counselor insisted the doctors were missing something so

lots of pursuits down neurological path were underway. I knew at minimum

i had peripheral neuropathy and balance and gait issues and sleep

disorder. But I'd had serious gerd and esophagus problems and swallowing

issues so after lots of endoscopies, it was actually my neurologist who

insisted to my gastroenterologist that I have CT's to look for any

external causes on my esophagus. The esophagus issues had been treated

for several years as well as a Colon resection in 2005 for a

precancerous tumor and continued monitoring for cholesteotoma which led

to two tympanoplasty with mastoidectomies (ear) in 1997 and 1998.

June, 2007, CT's of chest and neck revealed swollen lymph nodes. Too

many to count in neck and some larger ones in chest. They also revealed

that I had Interstitial Lung Disease but no one looked at or mentioned

that except the radiologist. Meanwhile, oncologist and I decide to just

watch the lymph nodes with follow up CT's.

Now, I see primary and have been complaining since early 2006 that I

just couldn't exercise. He attributed it to old and out of shape. Also,

I had a severe chronic sinus condition and allergies and hay fever

contributing. But I told him no. That I had three times that was far

beyond any of that. Three times I did something and thought I'd never

get my breath again. I just had to lay in the floor and hope each time

and wait. Now I know my saturations were in the 50's or 60's those times

based on gaining future understanding of how it feels. So he does a six

minute walk. Typical slow walk around office with his nurse expecting

nothing, no steps or anything, and......

She tells him the results. He says "thats worse than I would have

expected". From there to quick referral to pulmonologist to does PFT's

and HRCT's including on inspiration and expiration. Diagnosis ILD,

probably UIP. This is now August 2007. Oxygen ordered, overnight

oximeter ordered and oxygen needed for night too.

October 2007, VATS. Confirmed UIP in spite of several atypical things.

Meanwhile had had many connective tissue tests but none felt to show

anything. Oh, as to kidneys, they were around 60% in 1997 so got them

checked and now closer to 40% and remaining fairly stable but monitored

every three months or more.

April 2008, University of Chicago. Dr. strongly suspects connective

tissue and even NSIP but working with pathologist is back to absolute

conclusion its UIP even if some atypical on CT. This made third review

of the biopsy slides. Dr. there says based on many factors, she believes

underlying connective tissue disease such as undifferentiated connective

tissue disease or polymyositis.

Come home and to new highly rated rheumatologist who works and works to

find all sorts of signs of things out of range but nothing to diagnose a

connective tissue disease. He came close a couple of times. Sent me to

oncologist for three different cancers (nothing found). Sent me to two

neurologists and nothing found. Sent me to another rheumatologist and

now he wants me to go to another.

Meanwhile echocardiograms indicate possible PH so I go to UTSW and get

checked further including right heart catheter, VQ, and cardiac MRI.

Conclusion, no PH at this point but right ventricle is severely dilated

and other parts are moderately so with some regurgitation. So come back

in six months (March).

Meanwhile, I start making appointments at Duke to review it all and

follow through on Rheumatologists desire. Oh at various times he has

suspected Lupus (wants kidney biopsy to check for that) Polymyositis,

Dermatomyositis, Sarcoidosis, Scleroderma. So heading off to Duke soon

for one or two trips there.

Total conditions then as of today:

1-UIP

2-Possible connective tissue so undifferentiated connective tissue

3-Renal Insuffiency

4-Hearing loss from surgeries and disease

5-Tinnitus

6-Mild Vertigo

7-Hay Fever

8-Allergies

9-Chronic Sinus disorder

10-Deviated septum

11-Weak lower esophagus

12-GERD

13-Globus/Tight upper esophagus

14-Swollen lymph nodes

15-Vision problems

16-Peripheral Neuropathy

17-Balance and Gait problems

18-Abnormal Pain responses (lack of response)

19-Sleep disorder

20-Low vitamin D

21-Elevated homocysteine level

22-Foot problem-probably plantar faciatis

23-Severe skin problems and itching

24-Damage to right ventricle due to UIP

25-Prior precancerous colon tumor so monitoring

oh and mainly managed by counseling we can add in

26-Chronic Depression

27-Anxiety

28-Social Anxiety

29-Panic Disorder

30-Obsessive Compulsive Personality Disorder (not obsessive compulsive

disorder-this one is more perfectionism type thing).

Thats all I can think of now. Sounds awful but really doing quite fine.

New doctor got my records before seeing me and thought I would need

assistance just getting around the office. Ultimately she said, you're

doing fine. You're really doing quite well. Not what I would have

expected (she was a neurologist) .

As to all the conditions, I'm not worrying about them right now. The

itching is top on my list today. But off to Duke soon and see if any new

findings or conclusions.

>

> Bruce,

> Just curious when were you first diagnosed and was your very first

diagnosis IPF and then did you develop the PH quite awhile later? Do

you have other complications and is your reduced kidney function also a

direct result of the fibrosis?

>

> You and Beth are both a world of knowledge and I appreciate that

so much.

>

> Patti

>

[Guest guest]

Peggy

Well, I use to go as a kid to where they flew. I know I was suppose to

be real impressed but for some reason it just didn't do it looking at

the sand dunes.

>

> Hey watch the brothers talk.... be nice they were my

Grandmothers cousins..lol

>

>

> Love & Prayers

> Peggy, IPF 2004

>

[Guest guest]

I didn't get it on my own. I was really messed up and depressed long

before PF. So once I was in recovery from that I was ready for PF. And,

I depend on my counselor to keep me ready through the course of what it

brings. She's committed to being here for me for life, even when I reach

the stage I may not be able to get to her. There are times I see her and

not much going on. However, there are other times that she knows the

minute she sees me I've had a bad week or something. Those are the days

I'm looking forward most to seeing her and she helps me get my spirits

back up. Sometimes its the little things like being told prior to

Christmas that even though it was cold and not so pleasant that I needed

to do something fun and remembering that I like driving around and

looking at Christmas lights. So, I devoted several nights to various

tours of nearby areas. We really enjoyed that. The lessons I've learned

about myself and living, I use every day. Without them I'd probably

never get out and do anything and I'd be carrying anger perhaps.

I know today what to do tomorrow if today is bad so I can get going

again. I've learned to enjoy some very simple things too. I'll give you

one of my " fetishes. " lol. I absolutely love Bed, Bath and Beyond. I

have a stack of coupons always. At least 25 or 30 now in reserve. Some

days I'll just go look. Some days to buy something. But its a place I

enjoy going when its too cold or too hot outside to do anything else. If

you're just looking and not shopping and taking it as entertainment some

stores can really be fun. What about a trip to Costco and never even get

a shopping cart, just to see what is new. See, I hate shopping, but I

love looking and exploring. So, thats something I've learned to do just

to get out and be doing something.

> >

> > Bruce,

> > Just curious when were you first diagnosed and was your very first

> diagnosis IPF and then did you develop the PH quite awhile later? Do

> you have other complications and is your reduced kidney function also

a

> direct result of the fibrosis?

> >

> > You and Beth are both a world of knowledge and I appreciate

that

> so much.

> >

> > Patti

> >

>

[Guest guest]

Bruce,

I am amazed reading your story......thank you for sharing. I hope you don't mind but my husband read it too. I agree with ....you do have a positive attitude and above all else I hope you realize how much you are helping this group by all your research. That is no small task and I hope your counselor knows how much you help other people. She should be proud.

I received an email from U of Chicago and they want me to get a copy of a CT scan I had back in 2002. Apparently the ILD showed up then and it appears I too fell through the cracks since no one pursued it. In 2007 I had a another CT scan for an emergency trip to the ER for Diverticulitis and it also showed up then too. Again no one brought it to my attention. When I picked up the report several weeks later to follow up with a gastroenterologist I asked him what it meant at the bottom of the report about interstitial marking in my lung bases. He immediately set up an appointment with a pulmo dr and here I am years later seeing a doctor at U of Chicago because my stats have all taken a nose dive since Oct. Makes me wonder how many other people have things show up on CT scans that no one follows up on. I guess they were focusing on the diverticulitis and failed to mention a terminal lung disease. Scary isn't it?

Again thank you for telling me your story. You give me courage as most days I am just so confused with ILD...IPF....UIP....NSIP.....O2 .....no O2........biopsy.....no biopsy...... I just want to scream "give me my life back"!!

Patti Indianapolis IPF 2007

[Guest guest]

Joyce, not to change the subject , but I was wondering about your ex who has ALS. The ALS foundation here in Chicago told me that while my brother in law can still somehow communicate with my sister that she should find out what he considers his stopping point of being vented and calling in hospice.He is atrophying and can hardly move his lips now. He never wanted venting but she still tells him hes in a nursing home to rehabilltate to come home. Thats not the truth. But what happens if there is no known cut off time. The foundation said he could possible lay there for a long time because he had not made any plans. Do you know if this is true? any help would be helpful because laying in a bed year after year not even getting in a wheelchair seems like pure hell.

sharon p asthma ph 2008

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Visit to MUSCTo: Breathe-Support@ yahoogroups. comDate: Tuesday, January 12, 2010, 8:21 PM

Wow Roxanne that is shocking. I'm trying to understand the rationale for stopping the treatment for the sarcoid..... I mean I completely get checking for PH, as untreated it will kill you faster than fibrosis or sarcoid but I'm confused about stopping the sarcoid treatment. Maybe he thinks the sarcoid is dormant right now? That must be it and your sob he suspects is actually caused by ph.

Sorry I'm kind of thinking out loud, you must be reeling a bit from this. Please let us know what his full report says. I'm most interested. When you did the 6 minute walk and you dropped to 81 was that with oxygen or without oxygen? Mine drop like that if I try to walk without O2... like a stone. I'm worried that yours did that with oxygen.

You are in my thoughts and prayers.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Roxanne Wooten <t.rox1 (AT) yahoo (DOT) com>To: Breathe-support@ yahoogroups. comSent: Tue, January 12, 2010 8:06:29 PMSubject: Visit to MUSC

Hi all,

I've just returned from a very long day in ton SC at the ILD center. I was originally referred to Dr. Marc Judson who is the head of the department and also a specialist in sarcoidosis.

I took all the standard tests---blood workup---6 min walk, PFT, and xray. We went over my life history and he reviewed the tests and reports sent to him from all my other doctors and the new tests. I'm in a state of shock--he told me that he recommends stopping all treatment for sarcoid! Apparently, he doesn't think the sarcoid is what we should be worrying about at this point. He affirmed the probability that the sarcoid caused the fibrosis. He suspects I now have pulmonary hypertension and will recommend to my current pulmo that he get another echo and right heart cath right away. Did I say shock? I'm still trying to digest it.. I should have a written copy of his report in a couple of days and will know all the numbers and such. I can tell you that I walked about 80 feet and my sats dropped from 94 to 81 at which time they stopped my walk.

I will call my pulmo tomorrow and see if he wants to see me earlier than my appointment in March. I'm not sure if this is a positive or negative development. I do know that I'll be glad to give up prednisone, plaquenil, methotrexate and quarterly gallium scans!Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough.....

[Guest guest]

bruce

i get a 6 min walk and pft about every 3 months

they need the documentation -- if there is ever a change in the 6 min walk, like they have to give me o2, then that is significant

it is one of the easiest tests there is

last year, when they wanted me to list, my sat was in the low 90's, it took me a long time to recover after that walk, plus i was so out of breath, i couldn't talk for a long time

i wonder if the doc looks at the blood pressure levels pre and post walk, sometimes they check my blood pressure 3 or 4 times afterwards

i would think that someone on o2 during the 6 min walk they check the changes in lpms as well as the rest of the stuff

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Visit to MUSCTo: Breathe-Support Date: Wednesday, January 13, 2010, 11:23 AM

PinkI don't like the six minute walk now, although I feel strongly it shouldbe a part of the annual physical for everyone. But I know now how I canwalk and how much oxygen I need and don't need a walk to figure it out.My regular pulmonologist doesn't have me do any but Chicago and UTSW andsuch do.>> From: Beth mbmurtha (AT) yahoo (DOT) com>> Subject: Re: Visit to MUSC> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, January 12, 2010, 8:21 PM>> Â>>>> Wow Roxanne that is shocking. I'm trying to

understand the rationalefor stopping the treatment for the sarcoid..... I mean I completelyÂget checking for PH, as untreated it will kill you faster thanfibrosis or sarcoid but I'm confused about stopping the sarcoidtreatment. Maybe he thinks the sarcoid is dormant right now? Thatmust be it and your sob he suspects is actually caused by ph.>> Sorry I'm kind of thinking out loud, you must be reeling a bitfrom this. Please let us know what his full report says. I'mmost interested. When you did the 6 minute walk and you dropped to81 was that with oxygen or without oxygen? Mine drop like that if Itry to walk without O2... like a stone. I'm worried that yours didthat with oxygen.>> Â>> You are in my thoughts and prayers.> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â>

Â>> Â>> Â>>>>> From: Roxanne Wooten t.rox1 (AT) yahoo (DOT) com>> To: Breathe-support@ yahoogroups. com> Sent: Tue, January 12, 2010 8:06:29 PM> Subject: Visit to MUSC>> Â>>>>>> Hi all,>> I've just returned from a very long day in ton SC at the ILDcenter. Â I was originally referred to Dr. Marc Judson who is thehead of the department and also a specialist in sarcoidosis.>> I took all the standard tests---blood workup---6 min walk, PFT, andxray. Â We went over my life history and he reviewed the tests andreports sent to him from all my other doctors and the new tests. ÂI'm in a state of shock--he told me that he recommends stopping alltreatment for sarcoid! Â Apparently, he doesn't think the sarcoid iswhat we should be worrying about at

this point. He affirmed theprobability that the sarcoid caused the fibrosis.  He suspects I nowhave pulmonary hypertension and will recommend to my current pulmo thathe get another echo and right heart cath right away. Did I say shock? I'm still trying to digest it.. I should have a written copy of hisreport in a couple of days and will know all the numbers and such. I cantell you that I walked about 80 feet and my sats dropped from 94 to 81at which time they stopped my walk.Â>>  I will call my pulmo tomorrow and see if he wants to see meearlier than my appointment in March.  I'm not sure if this is apositive or negative development.  I do know that I'll be glad togive up prednisone, plaquenil, methotrexate and quarterly gallium scans!>> Roxanne, 59, South Carolina> 2006 Asthma/ PF> 2008 PF/ Sarcoidosis/ Gerd> I pray you enough.....>

Â>

[Guest guest]

i was in the outer banks twice

was impressed both times with what they achieved

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Visit to MUSCTo: Breathe-Support Date: Wednesday, January 13, 2010, 1:01 PM

PeggyWell, I use to go as a kid to where they flew. I know I was suppose tobe real impressed but for some reason it just didn't do it looking atthe sand dunes.>> Hey watch the brothers talk.... be nice they were myGrandmothers cousins..lol>>> Love & Prayers> Peggy, IPF 2004>

[Guest guest]

Hey all,I'm a little settled down now and have heard from Dr. Judson at MUSC.  Like I said after I left ton, my brain shut down and I couldn't make any sense of what he wanted to do.  He advises that my treatment for sarcoid won't stop totally, but that the medication for treating PH will be the total opposite and the PH will need to be addressed first.  Once determination is made on the PH and medication is started, the sarcoid will again be addressed with compatible methods.  WHEW!  I was really afraid of stopping for fear of this stuff popping up all over my body. My calcium level was elevated, so this indicates my sarc is still active and I am NOT vitamin D deficient.  I am not to continue the Vitamin D and calcium supplements which my primary had prescribed.  I am also to discontinue rehab until a determination is made on the

PH.Anyway, I have an appointment for an echo on Tues Jan 19th and a right heart cath scheduled for Feb 5th if its necessary.Thanks everybody for all your responses and good wishes!  Keep your fingers crossed for a few more days.Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....Subject: Re: Visit to MUSCTo: Breathe-Support Date: Wednesday, January 13, 2010, 10:26 AM

 

Roxanne

Could have been his "walk in support of prescribing oxygen". This would

keep it on record for insurance purposes.

>

>

> From: Beth mbmurtha (AT) yahoo (DOT) com>

> Subject: Re: Visit to MUSC

> To: Breathe-Support@ yahoogroups. com

> Date: Tuesday, January 12, 2010, 8:21 PM

>

>

> Â

>

>

>

>

> Wow Roxanne that is shocking. I'm trying to understand the rationale

for stopping the treatment for the sarcoid...... I mean I completelyÂ

get checking for PH, as untreated it will kill you faster than

fibrosis or sarcoid but I'm confused about stopping the sarcoid

treatment. Maybe he thinks the sarcoid is dormant right now? That

must be it and your sob he suspects is actually caused by ph.

> Sorry I'm kind of thinking out loud, you must be reeling a bit

from this. Please let us know what his full report says. I'm

most interested. When you did the 6 minute walk and you dropped to

81 was that with oxygen or without oxygen? Mine drop like that if I

try to walk without O2... like a stone. I'm worried that yours did

that with oxygen.

> Â

> You are in my thoughts and prayers.

> Â

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

> Â

> Â

>

>

>

>

>

>

> From: Roxanne Wooten t.rox1 (AT) yahoo (DOT) com>

> To: Breathe-support@ yahoogroups. com

> Sent: Tue, January 12, 2010 8:06:29 PM

> Subject: Visit to MUSC

>

> Â

>

>

>

>

>

> Hi all,

> I've just returned from a very long day in ton SC at the ILD

center. Â I was originally referred to Dr. Marc Judson who is the

head of the department and also a specialist in sarcoidosis.

> I took all the standard tests---blood workup---6 min walk, PFT, and

xray. Â We went over my life history and he reviewed the tests and

reports sent to him from all my other doctors and the new tests. Â

I'm in a state of shock--he told me that he recommends stopping all

treatment for sarcoid! Â Apparently, he doesn't think the sarcoid is

what we should be worrying about at this point. He affirmed the

probability that the sarcoid caused the fibrosis. Â He suspects I now

have pulmonary hypertension and will recommend to my current pulmo that

he get another echo and right heart cath right away. Did I say shock?

 I'm still trying to digest it.. I should have a written copy of his

report in a couple of days and will know all the numbers and such. I can

tell you that I walked about 80 feet and my sats dropped from 94 to 81

at which time they stopped my walk..Â

> Â I will call my pulmo tomorrow and see if he wants to see me

earlier than my appointment in March. Â I'm not sure if this is a

positive or negative development. Â I do know that I'll be glad to

give up prednisone, plaquenil, methotrexate and quarterly gallium scans!

>

> Roxanne, 59, South Carolina

> 2006 Asthma/ PF

> 2008 PF/ Sarcoidosis/ Gerd

> I pray you enough.....

>