It has been a long time since I posted. Update.
Posted 13 April 2011 - 12:14 AM
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,
Posted 13 April 2011 - 07:30 AM
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!
Let us know how you get on, OK? I'll keep you in my thoughts.
(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
Posted 13 April 2011 - 07:38 AM
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 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.
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)
Posted 13 April 2011 - 12:13 PM
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!
Posted 13 April 2011 - 03:00 PM
...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!
Posted 13 April 2011 - 05:00 PM
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
hugs and warmth
Posted 13 April 2011 - 05:02 PM
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 !
I hope your esophageal dilation goes well and do please keep us posted, here's some in anticipation of a good outcome!
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 15 April 2011 - 10:18 AM
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
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!!