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judyt

I had a Balloon Mitral Valvuloplasty

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Hi to Everybody,

I haven't posted for a wee while but thought I could share with you what has been happening lately.

 

Before holiday I was told by my Gastro man that I had Pulmonary Hypertension, which put me into a spin, but by February I knew that it was probably due to Rheumatic Heart Disease and not sclero - thank goodness.

 

Last week I spent 3 days in Hospital here in Auckland, New Zealand at the Coronary Investigation Unit. They did a TOE - which is Trans Oesophageal Echocardiogram - looking at the heart from the Oesophagus. That turned out to be a marathon effort because as you can all guess my oesophagus is not 'normal'. I seemed to be there for ever with all this gear down my throat, and finished with the most painful throat I have had for a very long time. That was pretty much a waste of time too I think. Next day I had a Balloon Mitral Valvuloplasty which is a procedure to open up the Mitral Valve and get it working properly. That was instantly effective - my Cardiologist was almost laughing as he announced 'look at that it's better already' After that they did the Right Heart Study which showed that I DO NOT have any PAH.

 

All this is absolutely fascinating, because one is awake all the time. I expressed a preference to be fast asleep but NO they need you awake. I was able to watch it all on a screen and to hear the conversations too. There is an Xray machine over you chest and a Radiographer there to do Echo images every now and then. You probably all know that they do the whole thing through a tiny opening in one vein and one artery in your right groin and now apart from a huge bruise and two tiny nicks you would never know they had been in there.

 

Now I am feeling so much better, back to energy levels of at least 5 years ago, and I am hoping I will get my fitness back as days go by when I am not so sleepy.

 

The down side of all this is that while I was in hospital my husband had an MRI to check on his blood cancer and the results of that have shown that he is out of remission and will be back on the treadmill of treatment again soon. Just as well I am feeling better and can get myself back into feeling well enough to cope.

 

Good to hear news of your successful transplant Miocean - keep on keeping on is what we all have to do.

 

Warm Hugs to all the neat people on the Forum

 

Judy T

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JudyT, excellent news for you and I'm sure your husband is pleased despite his own bad news. I hope you stay feeling better each and every day and your husband is back in remission soon.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi JudyT,

 

Well, you were certainly put through the mill, weren't you? I'm glad your mitral valve got fixed and that, in the end, you don't have PH. That is always good news, isn't it?

 

I'm sorry your husband is out of remission and needs treatment again. At least this way you should be able to handle some of the stress of it better, at least without worries of heart problems or PAH to boot.

 

My thoughts are with you and your husband.


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 Judy,

 

Wow, what a mixed bag of news~ Yours is really great and hopefully your hubby will achieve a good remission soon. I think you were the most incredibly brave person to go through all that wide awake. The TOE procedure brings me up in shudders just thinking about it. :wacko:

 

 

Warm (and good) wishes to you and your husband,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Judy,

It's so good to hear that things are going so well for you now - FINALLY - and the excellent news of NO PAH! What a relief that is. Sorry to hear that now the worry is with your husband. Hopefully, things will work out quickly for him and then you both can enjoy some good health for a while. At least now you are physically and, I'm sure, mentally able to help him out. Just remember that you both need to continue to take it easy. Don't push yourself.

 

Thanks for sharing your good news. It's always good to hear!


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 Judy just want to say how pleased I am for you that there is no PAH but sorry to hear about your hubby.

 

You must both take care.

 

Buttons

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Hello Judy

 

What a mixed bag! I'm glad you got good news and I hope your husband does as well in due course.

 

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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Judy,

I am so glad you heart catherization came back showing no PAH. I had one done in January and it came back mild PH. The cardiologist said it was so mild he wouldn't treat it at this time, my sclero specialist says it has to be treated right away, and my nephrologist doesn't want to add any new medications at this time so no one is on the same page. My husband was so helpful after the kidney transplant that I am glad you are feeling better so you can help yours. Hope all goes well.

 

miocean


ISN Artist

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Used to be that a doctor looked at you from head to toe- now it seems they also have to look from the outside in too.

Hopefully your husband will have as much success as you did soon. You all derserve a break from supporting your local medical profession.

Give you husband my best wishes.

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