Vegas Elaine

[Guest guest]

Great to hear from you, Elaine!

Sorry that you are such an expert on pulmonary matters, but we are lucky

to have you here as another valuable voice of experience here.

As always, thanks for your input.

[ ] Al

I've been with this group for a very long time but haven't been able to

keep

up and especially to write, but try to read as much as I can.

Al, I also have breathing problems that eluded diagnosis for a long

time. A

very brilliant lung doctor (considered one of the best in the world)

wisely

told me that although medicine has come a long way and we continue to

know

more and more, the truth is that there is more we don't know in medicine

that what we know. Putting a definitive diagnosis on breathing problems

can

be very difficult and take years, unfortunately.

I currently have a few " partial " diagnosis for breathing problems

including

RA causing pulmonary fibrosis (this is a " best guess " dx that all of my

doctors concur with, and I am accepting because to prove would mean a

very

invasive surgical procedure I'm at poor risk for and I'm not willing to

have

when it won't change anything). I'm on oxygen 24/7 and have compromised

immune system from auto-immune diseases (RA plus others) and meds

(Cytoxan,

prednisone). The weak lungs and compromised immune system make me a

prime

target for frequent pneumonia and " frequent hospital day awards " (too

bad

they don't give some sort of bonus for days spent in hospital because

I'd

have racked up many).

Bottom line ----- keep looking for the reason for your breathing

problems.

If you need to get a second or third or fourth opinion, don't hesitate.

Your

lungs are too precious and breathing too vital to give up without a good

fight. Sometimes a PCP that is a talented diagnostician can zero in on

the

diagnosis and the pulmonary folks can confirm it with tests.

Have you had a " walking pulse oximetry " done? I have gotten short of

breath

with exertion for about 5 years. In the first year or so my pulse ox

always

was 100% until a doctor finally had me walk through the office with a

nurse

holding the pulse oximeter. Sure enough my oxygen quickly dropped to the

80'

s.

Do you snore? If so, has anyone ever suggested you might have sleep

apnea? I

ask because that can be the cause of a disease that causes shortness of

breath, especially with exertion.

Hope you don't mind I stuck my nickels worth in, but I've been following

your posts with great interest since lungs are one of my weak points

too.

Elaine in Vegas

[Guest guest]

Thanks . You are always so kind.

I had a call from Mayo that they had appointments available Dec. 24,

26 and 31. I would have considered one of them perhaps if I didn't

already know that I will be there many days as my doctors feel I need

at a minimum, consults in rheumatology, pulmonology, neurology,

cardiology and maybe hemotology and my initial appointment is

internal med which will coordinate everything. If it goes like my

consult in Utah they will call in " specialized specialists " , perhaps

after the initial " specialists " . Anyhow, I couldn't see paying for

motels, meals, etc. for the days between when I'm sure they will not

have regular clinic hours. Plus, I'm concerned the specialists I need

have a greater chance of being " off " /not available on holidays.

Also, we've sort of decided we'd like for me to have the UCLA consult

first. I see my pulmonologist, who is coordinating those appointments

next Friday. If I decide to have the lung transplant I think it would

be at UCLA, so I'm really anxious to see them first. So many things

have happened that I feel I need to keep all of my options open. It

all gets very complex. Anyhow, I don't want any of the appointments

until after December 1, because that's when my Medicare (thanks to SS

due to disability) begins. Might as well have " extra " insurance when

going for these evaluations as they get into big money fast.

As far as how I'm feeling, and thanks for asking, it's like everyone

in that I have good days and bad. Essentially, mostly I have to count

on one or two days to recuperate whenever I do anything at all, even

just going to get blood drawn or a short doctor appointment.

Those " recuperation " days I seldom get out of my recliner except to

eat and " use the facilities " and spend a lot of time sleeping. At

least sleep is not a problem, or should I say " inability to sleep "

isn't a problem.

Most of the time I use my motorized wheelchair when I go anywhere,

although I don't use it very often in the house. I'm just so grateful

to have it because it has given me a part of my life back that had

been lost for far too long. It is wonderful to be able to shop again!

On my good days I do very well. If I plan right, and that as you know

isn't always possible, I think I do pretty well.

I fell in June and have finally recuperated from those fractures, for

the most part. I still can't lay down on either side without my

shoulder bothering me. But that's not a big deal because I haven't

slept in a regular bed very much for longer than I can remember. If

it's not the fractures, it was/is either my lungs or CHF or something

else that makes " laying down " in a bed more of a challenge than I'm

up to.

All that said, I don't think I'm as bad as it tends to sound. I've

just had to adjust my personal expectations and accept the losses of

things I've done for so many years and can't do now. But I think I'm

doing that pretty well most of the time ---- and thus do well. I get

around fine, thanks to my chair, and can do and enjoy the things most

important to me.

The " good " thing is that more and more the doctors are feeling that

the more serious of my systemic problems are due to RA. My worst

problem, as far as what limits me, is my lungs which have steadily

declined until recently when they finally stabilized at where they

had dropped to. Anyhow, after everyone watching my " lung challenges "

coincide with RA flares, and RA " good times " also being my better

breathing times, unless the new specialists come up with something no

one else has seen (and my doctor count far exceeds 50 and probably

100 or more at this point, over the past 5 years).

I say " good " to the above because my current RA drugs (Cytoxan,

Minocycline, Prednisone and multiple pain meds including Oxycontin)

seem to be keeping the RA from progressing. Yes, I do have flares,

and some of them are really bad, but not as bad as before and not

continuous, and so far not bad enough to also be affecting my lungs.

My lungs have been stable for several months now.

Whew, didn't mean to ramble in answer to a few short questions. Sorry

about that. I guess " runny fingers " has returned, at least for a

brief time.

I would absolutely love for you to come to Las Vegas. I'd love to

meet you!!!!! Don't know how soon your " ex " and your children are

planning their trip, but if you want to tag along you can always hang

out with me if you'd like and as much as you'd like. I have company

coming from Nov. 14 - Dec. 7 and then for the holiday week-end in

February (when you live in Las Vegas you get LOTS of company!!!), but

any time other than that (and whenever I get called for the UCLA

consult) I am free.

If you want I'll send you my phone number and if you'd like you can

send yours and I'll be happy to call you. You are always welcome

here. Just a word of warning ---- everyone who comes here is treated

as family. I can't wait on people anymore, so we just open the house

to our friends and family to be used as your own.

It is very exciting to think we may be able to meet. Please keep me

posted of any possible trips and I'll make sure I keep lots of time

open.

Hope I haven't put you to sleep or bored you to death.

One last thing since so many people don't know me. I was dx'd with

sero-negative RA about 5 years ago. My doctors recognized it long

before I had any clue or had symptoms severe enough that I'd have

complained to a doctor. Fortunately I have very good, and very

aggressive doctors who treated the RA very aggressively right from

the beginning. It is unfortunate that RA has affected other organs,

particularly my lungs, with more or as much damage as to my joints.

I'm not a typical case and have had other challenges along the way.

I've had major pulmonary emboli to complicate the lung problems, a

major stroke, a few fractures here and there (no, I don't have

osteoporosis; infact my bones are much stronger and denser than women

much younger than me), etc.

As you have read above, I am waiting for an evaluation to be listed

for a lung transplant. Right now my heart is still strong enough my

doctors don't expect I'll need a new one, unless I wait too long to

get a lung transplant. My medication has my RA under control, meaning

no further damage and yes, continue to have many flares but I can

treat them with medication for the break-through pain. I take pain

medication on a regular basis, just as I do the rest of my meds, with

more for break-through. Fortunately all of my doctors feel very

strongly that pain needs to be controlled.

There are more things going on and in my history than anyone could

possibly be interested in or want to know about. I am a strong

advocate for aggressive treatment and making sure you have good

doctors caring for you that also are good in communicating with you.

I'm a good example of why you need to get quality care from the very

beginning. Without it, I'd be dead.

After a lot of urging and finally facing the reality, I applied for

Social Security almost a year ago. I was approved very quickly,

declared disabled 4 years ago but since I didn't apply until last

year benefits only went back to Dec. 2000. But that's o.k. For those

of you familiar with SS that means I will get Medicare in December.

BTW, if anyone is wondering, no I am not a smoker nor have I been. I

tried it briefly in college and never even made it to be able to

inhale. Thank goodness for that. Yes, I am overweight (very). But,

also yes, my doctors have all looked beyond that and have not blamed

any of my problems on that!!!!

Off all of my soapboxes for tonight!!!!

Elaine in Vegas

> Elaine,

>

> I'm always happy to see you post and offer your insight. Thanks for

> sharing your experience with methotrexate with us.

>

> Are you any closer to getting into Mayo for their opinion about your

> double lung transplant? What is your status at UCLA? How are you

> feeling?

>

> Sorry for not having said something earlier. It wasn't for lack of

> concern. I think of you often and am quite sorry that you face so

many

> serious medical problems. At least you are consulting the very best.

> That's reassuring.

>

> On more than one occasion since my divorce, I tried to make plans to

> travel to Las Vegas with friends but they never materialized. I

haven't

> been to Vegas in a few years now, but my ex and the kids have. They

are

> going again soon. My fifteen-year-old refers to LV as " the city of

> life. " Although I don't disagree, I'm not going to tell my mother

that

> one. I'm almost tempted to tag along on one of their trips

(although I'm

> not sure I'm ready for all that that may bring). It would be

wonderful

> to meet you.

>

> Take good care,

>

>