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#1 miocean

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Posted 21 July 2011 - 11:06 PM

I met with my nephrologist to review the kidney biopsy (NORMAL) :emoticons-line-dance: and he said:

"You look good, your kidney is doing great, we all have problems, stop seeing doctors for a while."



Mind you, besides seeing him on a regular basis I have seen my pulmonologist, a lung specialist, and my scleroderma specialist* since May. I have an appointment with my pulmonologist this month which I will keep, an appointment with a hand surgeon I am going to cancel because nothing has changed and I can't see wasting his or my time, and then don't see my nephrologist until September and my scleroderma specialist until December when I will have a PFT, 6 minute walk test and Echo. Based on those results she will determine whether or not to do a heart catherization and CT scan. I have a few new medical reports to organize, some loose ends to tie up, standard blood work to be done monthly but I am basically putting my files away and forgetting about it. Unless, of course, I have a medical necessity.

* My appointment with my scleroderma specialist was fairly non-productive except for the fact that I have an appointment scheduled and tests to be done at that time. She is usually test,test, test, and medicate right away. I know the lung specialist at her center and my other doctor have both been in contact with her so maybe that has pulled her back a little. In all honesty, she looked tired, dark circles under her eyes that I have never seen before.

I am officially taking a vacation from the medical machine! :woohoo:

miocean
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#2 Amanda Thorpe

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Posted 22 July 2011 - 06:38 AM

Hello Miocean

Well I'm not sure if that's allowed you know. I mean you must meet your yearly quota of tests, consultations and doctor's visits to qualify as an active scleroderiam! :lol:

:emoticon-congratulations: on the biopsy results! :emoticon-congratulations:

Take care.
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#3 Jeannie McClelland

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Posted 22 July 2011 - 07:41 AM

Wonderful news on all counts! :emoticon-congratulations:I'm very, very happy the kidney is okay. Have a great rest of the summer, doctor/test free!
Jeannie McClelland
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#4 Joelf

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Posted 22 July 2011 - 08:38 AM

Hi Miocean,

That is good news all round especially on the biopsy!! :emoticon-congratulations:

Whatever will you do with yourself with no immediate doctor's tests to be undergoing? ;) :lol:

Have a lovely rest of the summer on your beach! :emoticons-line-dance:

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#5 debonair susie

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Posted 22 July 2011 - 10:49 AM

Hi miocean,

Well, it sounds as though things are calming a bit for you, which is good.

I hope your Scleroderma Specialist isn't having health issues...

Thank you for keeping us updated!
Hope your weekend is nice for you!
Special Hugs,

Susie Kraft
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#6 janey

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Posted 22 July 2011 - 10:53 AM

Miocean,
This is AWESOME news! :emoticon-congratulations:
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#7 Snowbird

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Posted 22 July 2011 - 06:20 PM

Great news Miocean

I have just one question...now what ever are you going to do with ALL that free time you'll have now? :unsure:
Sending good wishes your way!

#8 miocean

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Posted 22 July 2011 - 07:46 PM

Snowbird,

My Bucket List

1. Love my husband, family and friends. :wub: :wub: :wub:
2. Don't worry, :nervous: Be Happy :emoticons-line-dance:
3. Get my home in order (things are still everywhere from renovating but getting better every day). :VeryHappy:
4. Do art again :happy-day:
5. Give back :flowers:
6. Travel (3 trips planned already) :emoticons-clap:

And of course there is always

miocean :rolleyes:
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#9 red

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Posted 23 July 2011 - 05:12 AM

Miocean, this is truly wonderful news! :emoticon-congratulations:

Enjoy your doctor-free vacation. I can't think of anyone who deserves it more! :emoticons-line-dance:

#10 debonair susie

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Posted 23 July 2011 - 10:17 AM

That's a GREAT "Bucket List", miocean!

Enjoy the weekend!
Special Hugs,

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#11 marsha

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Posted 23 July 2011 - 05:08 PM

:emoticon-congratulations: Miocean, what wonderful wonderful wonderful news. Enjoy life! You deserve too! I am so happy for you!
Marsha :emoticons-line-dance:

#12 Lynnie

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Posted 26 July 2011 - 08:01 PM

:emoticon-congratulations: :emoticons-line-dance:

Great news, miocean! Enjoy the break on your beach and enjoy some normal life for a change!

Long may it continue for you because you deserve a break.

Hugs,

Lynn

#13 susieq40

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Posted 26 July 2011 - 08:23 PM

Miocean,

YEA for you!!!!! :emoticon-congratulations:

:emoticons-clap: :emoticons-clap: :emoticons-clap: :emoticons-yes: :high-five:

#14 miocean

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Posted 31 October 2011 - 08:54 PM

:temper-tantrum: Back on doctors... :temper-tantrum: but just because it's that time again.

If you remember the beginning of this thread in July, I had been well-advised to take a break from the medical machine and if you read that post I would have to start it up in the fall. Well, it is fall and so back I go. I can't tell you what a nice break it was to almost be able to pretend I wasn't sick. ^_^

I did most of the things on my bucket list and especially enjoyed the time spent on the beach. I still have "stuff" to put away, and I wish I had done more creatively although I did do some photography, a series on beach umbrellas, one on the wood knots in a cabin in the Catskills and another of closeups of driftwood from Hurricane Irene. I made a fall wreath for the front door and am working on accepting my hands are definitely not what they once were.

In addition to the rounds of testing I need to complete, I have started Pulmonary Rehabilitation 3 x's weekly. My Interstitial Lung Disease has increased from the 2009-2010 CT scans and I have 55% lung function with a diffusion rate of 43% according to my PFT. Add to that the years I sat around in a dialysis chair and the inactivity due to weakness, coupled with laziness and you have one out-of-shape person! The most difficult thing about rehab so far is getting a reading on me with an oximeter, the finger ones don't work because of Raynaud's and even the forehead one won't read. The best thing about it is I am the youngest one in the room!!! :emoticons-yes: (Except for the people that work there.)

Everyone is very friendly as part of the purpose of the rehab is psychosocial and my researching the right facility will pay off. It is very clean and the therapist wiped down the machines between people. The educational part at the end was on preventing pneumonia, and was basically what I have to do germ prevention wise since the transplant...practice good hand hygiene, stay away from sick people, wear a mask if necessary (giving me a chance to pull out my "bling" decorated masks), keeping your core body warm, wear a hat and gloves, and something I hadn't known, to use a scarf and keep your nose and mouth covered when you are outside.

I wish I didn't have to go back on doctors and through all the testing but we all know that is just the way it is. :unsure:

miocean
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#15 Joelf

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Posted 01 November 2011 - 09:29 AM

Hi Miocean,

It is shame that you have to go back to the doctors and have more tests again now, but it sounds like you've had a really good summer and done many of the things on your bucket list.

I do hope your Pulmonary Rehabilitation goes well and continues to be as productive. It does make such a difference if the people you're dealing with are friendly and helpful; when I had to go to The Royal Brompton Hospital for tests and treatment everyone was so nice it was quite a pleasure to be there. They also did rehabilitation therapy which consisted of learning to breathe correctly and as part of that - joy of joys!! - singing in a group to help with the breathing. I love singing so needless to say was first in the queue!! :emoticons-yes:

I must admit to going out on public transport looking like a bank robber with a scarf up to my eyes as since being on immune suppressants I've become paranoid about catching any germs that are lurking around so I can see the purpose of the advice you've been given. ;)

I do hope the rest of your tests and doctors' visits go well and you have an equally good Autumn and Winter!

Kind regards,

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#16 Amanda Thorpe

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Posted 01 November 2011 - 06:16 PM

Hello Miocean

Pulmonary Rehab, probably not one of the things you ever thought you'd be doing! Is the idea to improve or maintain the level of lung function you now have? I have a friend with scleroderma who has had it for 30 years and has 50% lung function left. I last saw her walking around the town centre as I sat in my wheelchair. Go figure.

Do you really go our looking like a bank robber like Jo does then? What a pair you'd make! :lol:

Take care.
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#17 Shelley Ensz

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Posted 02 November 2011 - 03:31 PM

Hi Miocean,

So what I gather from this thread, while speed reading, is that you are going to dress up like a bank robber and join a choir now, in an effort to avoid germs, get rich, and breathe better, right? <Just kidding!>

I'm glad you got a bit of a doctor break. I think it is actually quite good advice to take doctor breaks (when possible and reasonable). I've had doctors look at me shocked when I've declined a referral or appointment until my "doctor vacation" is ended. But sometimes I really do feel all doctored-out and the best medicine I can give myself is a total break from the whole routine. Healthy people probably can't relate to the whole idea, but any of us who have been through the mill, over and over again -- and especially through such a mill as you have, with the transplant!! -- can really relate to the idea that sometimes, what we need most medically is to not see a doctor, have another test, or worry over another result.

Thank you for setting a good "doctor vacation" example for all of us, Miocean!

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#18 KayTee

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Posted 03 November 2011 - 06:12 PM

Congratulations!! wonderful news for you and your family.
Kay Tee

#19 Shelley Ensz

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Posted 10 November 2011 - 07:57 AM

Hi Miocean,

How is this round of testing and pulmonary rehab going for you?

I'm thinking of you and sending lots of warm hugs your way.

:emoticons-group-hug:
Warm Hugs,

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