miocean

Pulmonary Rehabilitation Dropout

35 posts in this topic

Hi Miocean,

 

That sounds just great, to be able to get through the day and still have spoons left is a great achievement. I bet that has lifted your spirits no end. :emoticon-congratulations:

 

Best wishes for good reports when you get them all.

 

Hugs and a

 

:emoticons-line-dance: From JudyT

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Fantasticly well done Miocean! Shin splints, ah yes, remember them well, they put an end to my running days before scleroderma got there!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Miocean,

 

So glad you sailed through all your tests and had a great outting with your honey :emoticons-yes: I look forward to hearing what the doctor's have to say about the wonderful 6 minute walk :yes: I'll be crossing my fingers for good results. HUGS HUGS HUGS!! :emoticons-line-dance: :emoticons-group-hug:

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Hi Miocean,

 

I'm very excited to hear that you have your endurance back, at least enough to survive a rousing day of clinic visits. What a thrill that must be for you!

 

:emoticons-yes: :emoticon-congratulations: :woohoo:

 

Does this mean that you'll be able to pick up again with pulmonary rehab, after this round of testing is completed (if you overall fare okay)? Or do you need a minute or two to get your oomph and get-up-and-go up to speed, before tackling it again?


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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I was all set to return to rehab. I called the hospital I started at and asked about starting up again and I need to submit all my recent tests and then they said they might not have room for me. Since I wasn't really happy there I decided to go back to the other hospital which I ruled out originally because they administered a 6 Minute Walk Test to me incorrectly and I was put on oxygen. My lung and scleroderma specialists have since ruled out that test as invalid, so not only did I have to carry O2 and have a converter in my house but it cost my insurance company a lot of money.

 

In order to return I would have to get clearance from my pulmonologist and have an appointment for next week. I happened to be there today for Nutritional Counseling and it is right at the rehab so while I was there I asked if I could see the facility. I was brought into a large area, part of which is open to the public as a gym (one of the reasons I was against it in the first place due to germs) and a side area for rehab. The people there looked old and sick (same as my last location and I found that depressing). I asked some questions and found out they would use a finger oxomiter. When I explained that doesn't work on me due to Raynauds they said they could use an ear probe. I told them that was what was used for my 6 Minute Walk Test and that it was found to be invalid by my specialists and that I needed a forehead probe. They said they didn't have them there, I said I would buy one if I had to.

 

End result is I left there KNOWING it is not the right place for me, I will be unhappy and my readings won't be right. I am planning on calling my pulmonologist tomorrow and cancelling next week.

 

I just can't justify spending my insurance company's money again.

 

I have decided just to work on my own for now. My husband and I have started walking into town in the evening, a delightful little place full of shops, galleries, and restaurants. I have seen the town go through several stages over the years and it is now in a revival and quite beautiful for the holidays all lit up in white lights. It is just a couple of blocks away. This time of year the way the wind whips even on a relatively mild day seasonally the beach is really cold so that is out. I am happier walking and breathing the fresh air even though I walk slowly. I have decided to do what I did when I was a runner, go for distance first and then step up the speed.

 

And my legs still don't hurt!!!

:emoticons-line-dance:

miocean


ISN Artist

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Hello Miocean,

 

That is very interesting, frustrating, but interesting. I have often thought it would be good if I was able to qualify for a hospital programme because I thought it would be more precise than a public one - it would seem maybe not.

 

I have belonged to an International commercial Franchise for the past 3 years and have been very happy with it. Three times round the circuit takes only 40 odd minutes on average and that is more than enough for me. I know that the branch I visit here in my small town is a stellar one and way above any other I have visited in the same group. Here they have a programme where each participant has their own computerised monitoring, via an electronic tag, which records every workout and you can see a graph of where you are all the time. It does not include Oxygen readings but does record heart rates. I really like being able to see how well I am doing all the time. I am always very tired afterwards but quite often I can see the improvement and feel the fatigue is worth it. Sometimes not!

 

I have actually not actually been able to go since September but now am feeling better after a change in medication so I think I will get back into it after the holidays.

When I have had my SNS implant early next year I have my fingers crossed that I will be able to do some walking too. You say you walk slowly - I bet you can outstrip me though :rolleyes: .

 

Best wishes for a steady improvement for you.

 

JudyT

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Hi Judyt,

I have a fitness center a long block away that is part of the hospital I just went to look at but does not do Pulmonary Rehab. They have Physical Therapy upstairs and a small therapy pool but I went to a different PT program. I belonged to that gym for years and did weights, aerobics and yoga. I hired a personal trainer who was great. She left that gym when another new one opened in town and many people went with her so I followed. A month later I got sick. I paid my membership for 6 years, all through the time I was on dialysis and hardly ever went. When I got the kidney I was told no gyms because they are too dirty (my nephew got ringworm from his) so I quit. I used to be a gym rat but find them rather depressing now.

 

Your gym sounds great. I used to have a heart rate monitor but gave it to my niece thinking I would never use it again. I know how to take my pulse and can tell when I am getting short of breath.

 

However, two of my neighbors go to the gym down the street and I really like both of them. It is a little older crowd, not body builders and model wanna bees but not old AND sick. I'll be keeping it in the back of my mind. I could also go back to my personal trainer, she has her own private studio now, mostly Pilates and massage and she teaches yoga at a nearby location (and I gave my yoga mat and exercise ball away).

 

One step at a time for now and for now it's walking for me. I'm going out to lunch today with one of the neighbors mentioned above to the next town north, also a lovely little shopping district and we'll probably walk around after a delicious, locally grown, fresh meal.

 

miocean


ISN Artist

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Hi Miocean,

 

I'm really pleased to hear that your leg pain has improved and it does sound as if it will be more pleasant and advantageous for you to walk outside, providing the weather is reasonably clement.

 

I tend to do my own fitness plan as well, although I love going to the gym. (We're not talking 20 year olds leaping around in lycra and muscle bound weight lifters here though!! ;) :lol: Most of the other members are my age or thereabouts and really lovely people. Your local gym that your neighbours frequent sounds very similar!) When I was first diagnosed and my lungs were at their worst, I toned right down the amount of strenuous exercise I did; as my lungs have improved I've increased the amount of running and cardio vascular work I do, although realistically I know I shan't ever be as fit as I was before I had Scleroderma. I also tend to have good days and not-so-good days with my lungs and joints, as I'm sure most of our members do, so I make the most of it on the good days.

 

I really hope that you improve steadily and that your legs stay painfree. My mouth's watering at the thought of your lovely meal! :emoticons-line-dance:

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Miocean

 

I am glad that your leg pain has stayed away because losing any pain is a real bonus! :yes: I hope you and your husband have many, lovely walks to come.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Miocean,

 

Yes that's it - no bodybuilders or lycra or wannabe models - that is what the gym I go to is like. People like me in their shorts and t shirts. Sometimes it takes a bit of thinking of what it is about some place we like more than another. As well it's the 'instructors' too. We get excellent gentle encouragement where I go and there is always somebody keeping an eye out for you. Some places the staff are reading magazines and talking to their boyfriends on the phone - not a good look.

 

Going with a friend is great too, we live a bit out of town so 3 of us used to go together and do our supermarketing etc. afterwards. I will have to organise myself in January to start going alone.

 

Hope your plans work out well for you.

 

JudyT

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Hi Miocean,

 

As you know, my husband has had pulmonary rehab several times, both before and after his lung transplant. The most important part of it, as I understand, is to get people who are very sick or recovering to understand how they can safely exercise, and to heartily encourage them to do so. It's not always easy to talk couch potatoes into any sort of activity at all.

 

If you know what the goals are for your pulmonary rehab, and you have safe parameters to follow from your doctor, it's probably reasonable for you to follow your own program. Within a few weeks of finishing pulmonary rehab, my husband swapped out walking on the treadmill to walking outdoors as much as possible and in malls when that wasn't possible. Because he's doing what he loves, he looks forward to it, doesn't develop any excuses to try to quit, and it is just part and parcel of life -- not a chore and not an expense. He has an oximeter which he always keeps on hand but seldom needs to consult anymore.

 

The goal is to be active, and out and about, and breathing deeply, and for some people that's very hard to get the hang of, or worse yet, they quit doing anything at all the minute they graduate (or flunk out) of pulmonary rehab. You have walking buddies and are eager to get out and about -- so just keep on doing what you're doing! You may not need anything fancier, or more expensive, than a nice pair of walking shoes and the good sense to slow down when you need to.

 

:emoticons-group-hug:


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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I am thrilled to say I was able to do something I haven't been able to do for years..my husband and I walked up to the jetty and back, a 3 mile walk! I used to run it a couple of times a week, and then walked it once after scleroderma hit the fan but haven't since. I took 3 hours and we sat on benches a couple of times but it was a great feeling to be able to do it!

 

I know how to do pursed breathing from running and also know to keep at my pace so I don't get short of breath. Little by little..

 

miocean


ISN Artist

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That's fantastic, Miocean; I'm so pleased for you!! :emoticons-line-dance: :emoticons-line-dance:

 

I think it makes all the difference if you've got a lovely place to walk as well.

 

I do hope that 2012 will be a really good year for you and you'll continue to improve and be able to do lots more enjoyable walks! :emoticons-yes:

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I am happy, too :emoticons-line-dance:

 

I am already looking forward to being able to go back to museums, something I have really missed and living so close to one of the art capitals of the world would like to take advantage of again.

 

I am a "flatlander" though, a term I learned when I used to go camping in the mountains. It is pretty flat around here, the biggest hill is a bridge. :VeryHappy:

 

:happy-dance:

 

miocean


ISN Artist

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