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tngrits

It has been a long time since I posted. Update.

9 posts in this topic

Hi everybody! I hope everyone is hanging in there. Some of you may recall I went to a retirement home (I am 57) thinking it would be best for me. Not! I spent two months in deep depression. So I moved in with one of my daughter's and my depression has improved a lot. But (there is always a "but") now I am very sick. I lost 70 lbs in 6 months without trying--can only eat a little at a time. Also started hurting in my chest, fatigue, shortness of breath, etc. It was confirmed today with a heart cath. I have severe pulmonary hypertension caused by the scleroderma. They tried the meds on me while in there and he said they did not help. So now it is up to the pulmonologist to see if he can come up with anything. I can barely walk across the floor and was feeling fine 6 months ago.

Does anyone have suggestions for meds that could possibly help. My insurance would never cover it plus I just really don't see any reason to try transplant surgery. I will take the time I'm given on this earth and try to enjoy--even if I have to do it from a wheelchair.

I am also having more trouble with my esophagus so looking for them to dilate it Thursday. Busy week!

Love to all my fellow sclero friends,

Linda (tngrits)

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Hi Linda,

 

It sounds like you are having a real fun (not) time. Nursing homes are difficult for us young folks, no matter how poor our physical condition. There's a mental and emotional barrier, I think, to finding them 'comfortable.' I'm sorry it didn't work out as well as you'd hoped.

 

Do you know what medication they tried you on for the pulmonary hypertension? I'm assuming it was during the right heart catheterization and that it might have been inhaled nitric oxide. People who respond to that will sometimes do well on a calcium channel blocker like Norvasc (Amlodipine). There are quite a number of other treatments for pulmonary hypertension that they might be willing to try. Do you see a pulmonary hypertension specialist? I'd recommend it, or at the very least a consult.

 

Good luck on your esophageal dilation tomorrow. I had my most recent one in December and it helped a lot more than I thought it would. I wish I could send you some of my extra weight. I'd be more than happy to give it to someone who needs it! :lol:

 

Let us know how you get on, OK? I'll keep you in my thoughts.

 

 

 


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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Hi Linda,

 

I'm very sorry to hear that you're so poorly and have been affected so badly with Pulmonary Hypertension. Thankfully I don't suffer with this so can't advise you from my own experience but I do have lung involvement so can empathise with you over how distressing the shortage of breath, fatigue and painful lungs and chest can be.

 

Although I do have a current first aid certificate and could patch up a broken leg if I had to, I have no actual medical knowledge so can't help you regarding any meds you should be taking. I do hope that your pulmonologist can suggest something to make you feel a lot better; I know quite a few of our members do suffer with Pulmonary Hypertension and I'm hoping that they may be able to advise you further.

 

However, it is good news that your depression has lifted a little; here's a comforting :emoticons-group-hug: which I do hope will make you feel a little better.

 

Do please keep posting and let us know how you get on with your pulmonologist's appointment and also with the oesophageal dilation tomorrow.


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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Hi Linda,

 

I'm new here since you were here last. I don't have any expertise in this area, however I just wanted to say I sure hope you can find something to give you comfort. You're in my thoughts! Keep us posted!

:wub:


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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Hi Linda

 

...and here I was hoping you were having just a grand old time since it's been awhile! I'm so sorry to hear you were not and the adjustment didn't turn out as well as you had originally hoped after all.

 

Sorry, I can't help with your medication question either. Hopefully, you'll get your specialist appointment really soon and they'll help get you back on track.

 

Good luck with your esophageal dilation tomorrow. Do let us know how you make out with it. You're in my thoughts too!


Sending good wishes your way!

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Hi Linda

 

I am so sorry that all your best laid plans for a settled time have gone so sadly wrong for you, but, you tried and it takes courage to admit that it was not what you needed. Not being happy will not of helped your scleroderma I am sure!

 

But you have found some happiness and care with your daughter and that has to be a good thing and your time together will be happy and content and the deep depression will be a thing of the past for you.

 

I'm afraid I can't comment on the pulmonary issues I am on medications to protect my heart/lungs and gut and so far I am ok but it's early days for me as im only in my 3rd year following diagnosis. I do hope the pulmonologist can help and give some relief and the dilitation goes well too.

 

Please try and keep your smile on and take your pleasures were you find them ok.

 

My thoughts are with you,keep us posted how things go with you ok :emoticons-i-care:

 

hugs and warmth

Lynn

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Hello Linda

 

Welcome back old friend! It's great to hear from you again although I am sorry you are having such a difficult time of it. Last year I was dealing with heart failure and I couldn't have a conversation without getting out of breath and moving around was hard work, like walking around in a swimming pool. Thankfully for me a pacemaker/defibrillator made a world of difference, I had symptoms for about a year and that was long enough.

 

I hate what scleroderma does to people :angry: !

 

I hope your esophageal dilation goes well and do please keep us posted, here's some :flowers: in anticipation of a good outcome!

 

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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Linda,

 

So sorry for your hard time! I too have lung issues and PH and it's been very hard to move and breathe. I'm on oxygen 24/7 I hope you have had that tested and are on oxygen, makes a difference! I was so afraid to move the first year, thought my chest was going to explode, but the more I sat, the stiffer I got and man did I put on the LB's. Sometimes we just have to :temper-tantrum:

Once I started pulmonary/cardio rehab, I was able to exercise, first only 5 min, now up to 45 minutes. A year ago, I'd of never thought I'd be doing that!

But make sure you go through doctors, and be monitored. Being monitored and given the ok from doctors, helps a lot.

 

Are you seeing specialists? I hope so! Please keep us posted! Being with family I'm sure helps some with the sadness and despair! Remember we are here for you!!

:emoticon-hug:

 

susieq40

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