janey

A Little Good News Amongst The Bad

27 posts in this topic

Well, I'm on another round on this roller coaster ride.

Friday I met with my pulmonary doctor and today with my rheumatologist.

Good news -

PA pressure from echo is at 31, down from 40 in September. WhooHoo!

Aside from improving the PA pressure, the Bosentan has also help decrease problems associated with Raynaud's - another WhooHoo!

Not so good news -

All aspects of my PFT decreased (TLC down to 47%)

O2 sat has worsened: A walk of 20 feet dropped it from 98 to 81

The 8 hour nightime O2 monitoring showed 74% of the time I was between 80 and 90% with a dip as low as 69%

CPK (muscle enzymes used to monitor the polymyositis) is back up to 417 from 64 a month ago (normal is below 200)

HRCT stills show infiltrates (probably due to inflammation from the sclero) in the lower lobes, but about the same as in September. No ground glass at this point. (It was interesting seeing my pacemaker in the CT. It causes a sunray affect in the CT due to the electrical interference with the x-ray - yes, I'm a techno nerd :D )

 

After the two doctors (pulmonary and rheumatologist) consulted on Friday here's my changes in treatments / meds, etc.:

I'm now on nightime oxygen. UGH!

I have to use supplemental oxygen when I go anywhere, go for a walk or do anything outside the house. Bigger UGH!

The pulmonary doctor signed me up for a sleep study in January even though I sleep great, she's wants to see if something else is going on that is causing the nighttime O2 drop.

I'm at maximum dosage of Bosentan (125 mg/twice a day)

No more Methotrexate. WhooHoo!

This week I start on oral Cytoxan, 100 mg/day for no more than a year.

Still doing IVIg.

 

My husband went with me today to the rheumatologist's and I'm very glad he did. He got to see the CT and hear what the doctor said about all the tests results. He also got to hear my rheumatologist and I talk about the Cytoxan. Then he and I went to lunch and talked a lot more. He really opened up with questions and it felt so good to be able to talk to him about it and to go into detail on things. He admitted that he has fallen behind with what's going on and "it's time to catch up." I'm such a lucky girl to have him!

 

I can't say my life is boring!

Big Hugs to you all,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Janey,

 

Wow, that is definitely quite a rollercoaster full of news! Even though I'm sure it will be quite an adjustment for you, I'm very happy that you are on oxygen at long last. It will do good for you, and for the PH.

 

It's such a catch-22 with illness...good when they catch things (finally); bad when you have to take on new treatments and meds, but good when they help a bit. That's quite a lot to adjust to right away. Just one of those things would be more than enough, wouldn't it?


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Janey,

Thanks for the update! OH BOY!!! So many changes how do you keep it all straight? Good luck with the sleep study, my hubby said they stink and you don't actually get any sleep. I am so paranoid that I will need oxygen at some point. That is one of my biggest fears with my ILD. I just know you can pull it off! Cytoxan... you should do just fine. I guess the daily dose isn't as bad and the IV, just drink your fluids because it hangs around longer than the IV type. Hopefully things will settle down, your numbers will go up where they need to and go down where they should go down.

 

Hang in there and take one day at a time!

Very cool about the xray--I love that kind of stuff!

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Janey...

I hope you are doing OK!!! Hey, I promise the oxygen thing becomes a way of life sooner than you will ever dream of. I was 38 when I got put on it full time and it was such a downer. It will take some getting used to but you begin to appreciate the fact that it is helping you. I will say the first 6-8 months were full of tears and frustration because trust me, you will trip on the cord (LOL...at least I do, once or twice a day) and it is bothersome...but it's not that bad.

I bought a pulse oximeter because at first I was so paranoid of dropping below 90. I do not use mine for short errands, or when I go out to dinner because I just don't. Maybe you will find that you can get by without it ALL the time if your doctor agrees and your pulse oximeter is handy.

I am sad that you decreased and am truly sending you good thoughts.

Jennifer

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Hi Janey,

 

I'm sorry you haven't had better news for everything, but at least you did for some things!

 

There's one thing though, they can help you with your problems, which is more than they could some years back. You say you're on Cytoxan? Am I wrong in thinking you were on it for a short time, or was that Imuran? I hope you can tolerate it OK, and it helps too!

 

As for the O2........ I should imagine it would take a while to get used to it as Jennifer says, but if it helps there's not really an option is there?

 

Talking about tripping over cords and things......... I have my peritoneal dialysis every night for 10 hours. During that time I am joined to the dialysis machine by an 18ft tube. The machine lives in the hall closet due to the noise keeping me awake if it's beside my bed. The tube drains the dialysis fluid from my abdomen, then delivers fresh fluid back, 8 times during the night.

 

During the night if I need to go to the bathroom I wind up the tube as I go, rather like winding up a rope! However, as I can't walk, I do all this sitting on my office chair with wheels! I can tell you it took a number of great tangles round the wheels before I managed to get to a working agreement with it all! :unsure: I occasionally still get tangles to sort out, but manage better now. Not much fun in the middle of the night when one feels half asleep too! :lol:

 

So I'll be thinking of you with your tubes etc.

 

As for a sleep study........ I have problems sleeping at the best of times, even with a quiet, dark room. I can't imagine trying to sleep in the conditions of a sleep study with wires attached and everything! If it was me it would be an "awake study"! :o Let us know how you get on with it.

 

Good luck!

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Hi Janey!

 

Thank you so much for the update. Some good, some bad. It truly is a roller coaster ride isn't it. You are such an inspiration to me, you are so upbeat and seem to look for the good in everything.

 

In reading your post the part that touched me the most is your husband and his comments to you. It really warmed my heart!

 

Love you girl!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Janey,

 

Wow! That is so much news! And, yes, it sounds like an absolute roller coaster. I am so glad your husband was able to go with you and to hear all the information as I am sure it helped when you talked about it to get his input and to have him help to remember just what was said. I am sorry you are going to have to go on oxygen, but I sure hope it helps you to feel better! I am glad that in the midst of the bad news you had some good news! I am sure that made it a little bit easier to hear the bad. And, how wonderful that your husband wants to know everything and get back on board! I am sure it must help you so much to know that he is there supporting you in all of this.

 

Please do keep us all posted on how you do with the new meds, the oxygen, and the outcome of the sleep study. I am sending you lots and lots of hugs!!

 

Warm wishes,

Heidi

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THANKS EVERYONE for your supportive comments. Yes, the O2 is going to get hard getting use to, so I'm going to have to do it a little bit at a time. I've already seen a difference in just 3 days so I know it's going to be worth it. The coughing fit I have every morning when I get out of bed has gone from 15 minutes to less than one minute! And now I can almost get through a whole conversation without coughing. Jen, your experience with it is invaluable to me!

 

Once I start on the Cytoxan it will be a challenge to learn how to deal with the tubing at night when I have to get up. Of course, Sherrill, if you can manage it on wheels, surely I can manage the 6 feet from bed to toilet without wheels. :huh: My rheumatologist said I have to drink enough liquid each day that requires me to get up at least once each night to pee. If I don't get up, I'm not drinking enough water. He explained that the oral cytoxan settles in your bladder and can cause bladder cancer (WhooHoo!) so you have to make sure you flush each day. Great - and here I was so proud of myself for sleeping so good and never having to get up in the middle of the night to pee. Oh Well :blink:

 

Thanks again! I love you all!

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I have to agree with Sweet, Janey. You are an inspiration to me too. You deal with each hill and valley of the roller coaster with such a positive attitude and you seem to take everything in stride.

 

I'm sorry you have so much to deal with all at once. My head would be spinning and I would be a total basket case. I'm so glad you can still be our rock ( one of our rocks:) here on the sclero forums in spite of all you're dealing with.

 

YOU ROCK GIRL!

 

Hug your hubby for me - what a great guy.


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Janey,

 

Shwew!!!! You are dealing with so much. I'm glad you had some bits of good news in there to help a bit with the changes you are having to make. I have heard some very good results of folks who have done the cytoxin tx. I'm hoping the very same results for you.

 

Ease yourself into this new phase. This was the perfect time for hubby to hear it straight from the doctor. Glad it worked for a lunch and talk time after.

 

Take good care. Oh, I didn't find a sleep study that bad. Hopefully, you will find it the same. And you may find some answers to your night time problems.

 

xoxo emmie

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Janey,

 

Congratulations on all the WooHoo's! And also happy that you have a great team of doctors that interact to get you the best treatment available. I'm waiting for my doctor's to put their heads together now! Keep takin' care of yourself, your doing such a great job, and you are an inspiration to the rest of us.

 

And A great BIG Congratulations on getting your husband back intoouch with your situation. I think I'm experiencing that same thing, My hubby was gungho into researching my disease, especially when they put me on cytoxan last year, but he seems to have fallen away again. Maybe when he goes with me to get my rt. heart cath next month, it will pull him back in.

 

Warm and Happy to you. Keep keepin' on! xo Vee


Happy people don't have the best of everything, they just make the best of everything they have!

 

Warm and Happy to you! Vee

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Janey,

 

I can tell you have been on a roller coaster but....Your husbands interest and desire to be there for you seems to be the highest point on your roller coaster ride.

 

Give your hubby a great big hug for me!!!!

 

Lori

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Janey You are in my thoughts.

 

Birdmans Wife


Hugs for All,

 

Julie (Bird Lady)

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Hi Janey,

Wow you sure had a lot given to you at once but you sound like you are dealing really well with it all. I love that no matter what you sound OK with it. Maybe like you accept this and are able to move forward. Kudos to you for that! I hope that the oxygen is a smooth transition for you.

 

Have a happy Holiday

Hugs,

 

Patty


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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First of all - THANKS to everyone for such kind words and wonderful support! It sure makes things a lot easier with such a great support group!

 

Well, I just got back from a morning of holiday shopping with the accompaniment of my new friend - the O2 tank. :blink: PHEW! That was not easy. They gave me a shoulder carrier, brand new, looks nice - black, which is a good color for me since all my coats and half of what I wear are black, but there's one very serious problem. Due to my polymyositis, I have no shoulders! So the thing kept slipping off! I guess when I think about it, that actually worked in my favor because people were paying more attention to this crazy woman fighting with a shoulder bag than the nasal cannula wrapped around her face. After the first stop I took the tank back to the car and only used the O2 while driving, then I shifted down into a "mosey pace" for the remaining stores. I've put a call into the rental place to see if they have a little backpack carrier that I could switch out.

 

Jen and others out there that use O2 - any advice, trick of the trade, do's and don't's?

 

Thanks again everyone!

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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