Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 , Hi. I'm new to the group. I was reading your note to Ron and noticed that we have similar problems. I also have sarcoid that has effected my heart. I first became aware of the heart problems in August of 2004. I had some swelling that I thought was from the steroids but it wasn't. I went to the hospital in heart failure with an ejection fraction of 20% and my heart was enlarged. I was sent to Los Angeles for evaluation for a heart transplant. I didn't qualify at that time because of all the weight that I had gained while taking the steroids. The heart Docs also didn't like me taking the steroids and the methotrexate. It took awhile but we weaned off the drugs and I lost the weight I needed. The Dr. said I finally qualified for a new heart. She also decided to put in a biventricular pacemaker with an intracardiac defibrillator. I had the surgery in September (It took over 7 hours). It took awhile to get used to it and for it to help but, slowly I did start to see improvement. I am so glad that I agreed to have it placed (I also had problems with my heart not beating in sync). I have alot more energy than I had before and my ejection fraction has improved to 30%. My Dr. said that at this point we can wait on a transplant. I hope that you have as good of a result as I did. If you have any questions or just want someone to talk to with similar problems I would be happy to help. Wishing you well, Tammy Mommer wrote: Ron: I had that same problem it was from all of my pain meds and the softeners didn’t work but I bought some dried prunes and wala after I ate about 5 or 6 of them now Its done the natural way. I'm home from the hospital the surgery went well my cardiac sarcoid has been acting up my ejection fraction of my heart had been 38% normal is 50-75% mine now is 28% they send old people to hospice when it is this low. I gained 10 pounds in 12 days. They operated and took out my pacemaker and put in the pacemaker for heart failure. The pacemaker I had was put in in Jan. This one has back up leads since I am reliant on it keeping me alive. Also to I now have a wire that goes thru the pulmonary vein and wraps around to the outside of the heart to shock the right ventricle also. both of my ventricles were beating at the same time. The wire should help each ventricle to get in sync. we will know after 4 weeks. until then I can not move my arms. my hubby is cooking even giving me my shower. M Yahoo! Mail Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 , I am happy to hear of your blessed experience. Beleive me when I say I lifted you up in prayer several times. So, I am not surprised but very thankful for your positive experience. Praise God! Amen. Now, to the cooking and showering thang. Yes, we all have to eat so your husband cooking is a good thang. But giving you a shower is even better! !!! I can recall the dayz when my wife and I would shower together, scrub each others back, dry one another off and then lotion or baby oil each others body before going to bed. Man oh man! What a banging good time this was!!! This was the longest and best foreplay there was! So maybe you need to bump that pacemaker up a notch or two when " hubby gives you a shower. " " Wo Nelly. The hays in the barn. " Enjoy your love with you husband as he pampers his Queen! Ron -- In Neurosarcoidosis , " Mommer " wrote: > > Ron: I had that same problem it was from all of my pain meds and the softeners didn't work but I bought some dried prunes and wala after I ate about 5 or 6 of them now Its done the natural way. > > I'm home from the hospital the surgery went well my cardiac sarcoid has been acting up my ejection fraction of my heart had been 38% normal is 50-75% mine now is 28% they send old people to hospice when it is this low. I gained 10 pounds in 12 days. They operated and took out my pacemaker and put in the pacemaker for heart failure. The pacemaker I had was put in in Jan. This one has back up leads since I am reliant on it keeping me alive. Also to I now have a wire that goes thru the pulmonary vein and wraps around to the outside of the heart to shock the right ventricle also. both of my ventricles were beating at the same time. The wire should help each ventricle to get in sync. we will know after 4 weeks. until then I can not move my arms. my hubby is cooking even giving me my shower. > > M > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Para transit is a public transportation service for the disabled. Two companies operates here in Tampa. One is HART which is the main bus system in Tampa and the other is SUNSHINE. Both organizations provides door to door service whereby they pick you up from home, take you to your appointment and pick you back up and take you home again. It is very convenient and gives one a chance to get out and get some fresh air and notice what changes have occured in the city since being confined to the house so much. I had not been out and about for several months. I was surpised to see so many changes in the city like highway contructions, new condos, demolished buildings etceteras. It was a nice ride and it gave me a chance to see other disabled people who were much worst off than myself. My heart went out to them. And yet they were still out their trying to hang tough and make a life for themselves. Blind people especially touch my heart. Take care my brother, Ron > > WHAT IS A PARA-TRANSIT BUS?...QUINT > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 HEY RON I HAVE BEEN ON PREDS OFF/ON FOR 41YRS AND IT NEVER MADE ME WEAK.CRAZY BUT NOT WEAK......QUINT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 Rose wrote: Now Quint, do you have any proof that you weren't crazy to begin with? I remember when my neuro told me he thought I had NS, I said, "So, I'm not nuts," and he said, "Well, you might be, but you have this too!" Ramblin' Rose Moderator From: sarcdogg@...Reply-To: Neurosarcoidosis To: NEUROSARCOIDOSIS (AT) YAHOOGROUPS (DOT) COMSubject: RONDate: Wed, 10 May 2006 18:04:34 -0400 HEY RON I HAVE BEEN ON PREDS OFF/ON FOR 41YRS AND IT NEVER MADE ME WEAK.CRAZY BUT NOT WEAK......QUINT~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 Rose wrote: Now Quint, do you have any proof that you weren't crazy to begin with? I remember when my neuro told me he thought I had NS, I said, "So, I'm not nuts," and he said, "Well, you might be, but you have this too!" Ramblin' Rose Moderator From: sarcdogg@...Reply-To: Neurosarcoidosis To: NEUROSARCOIDOSIS (AT) YAHOOGROUPS (DOT) COMSubject: RONDate: Wed, 10 May 2006 18:04:34 -0400 HEY RON I HAVE BEEN ON PREDS OFF/ON FOR 41YRS AND IT NEVER MADE ME WEAK.CRAZY BUT NOT WEAK......QUINT~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 I think I'd like your neuro Rose, I love people with a sense of humor. Without one I would crawl in a hole///ConnieRose wrote: Now Quint, do you have any proof that you weren't crazy to begin with? I remember when my neuro told me he thought I had NS, I said, "So, I'm not nuts," and he said, "Well, you might be, but you have this too!" Ramblin' Rose Moderator From: sarcdogg@...Reply-To: Neurosarcoidosis To: NEUROSARCOIDOSIS (AT) YAHOOGROUPS (DOT) COMSubject: RONDate: Wed, 10 May 2006 18:04:34 -0400 HEY RON I HAVE BEEN ON PREDS OFF/ON FOR 41YRS AND IT NEVER MADE ME WEAK.CRAZY BUT NOT WEAK......QUINT~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 Ron, I hope it wasn’t something I said, as I just sent you two post, if so I am very sorry. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of J. Blanchett Sent: Saturday, June 17, 2006 7:36 PM To: Neurosarcoidosis Subject: Ruth, THANKS! Re: Swollen Footes Ruth, Thank you for your advice. I will try to my legs more. No, I don't have a topic. I was thinking we can free flow. So much of the time is casual and general and that is okay by me. But if anyone insist on a topic, they can introduce one or I will suggest one on Criticism. Lately, I have been criticized by someone dearly. And I am waiting to respond to this person. I want my repsonse to be one of love and example, not defensive or retailiatory. Sometimes waiting is the best thing. It gives us a chance to quiet our emotions, reflect on our alternatives and listen to the Holy Spirit. So, God has placed me in a waiting pattern before I respond to this person that I care for dearly. So, " CRITICISM " would be the topic if one is needed. How do we deal with it? And please make room for me in the hot tub, I love sparking cider and cheese with crackers. So move over Ruth, I am coming to join you. And no virtual stuff. This is the Real McCoy! Got me?!!? Brother > > > > Does anyone have problems with their feet, I mean foots swelling? My > > foots have been swollen for months now. > > > > My kidneys are functions fine and my recent echo showed no > > abnormalities. I try to elevate them at times and this does seem to > > help a little bit. But the swelling returns. > > > > Could this be from sitting in the wheel chair all day, every day? > > > > I too use to have peripheral neuropathy in my feel like Marla. But now > > my foots, I mean feetses are totally numb. Any suggestions would be > > totally appreciated. I used to have pain to, but now the pain is gone, > > so I presumed so is the normal functioning of the nerve, huh Marla? > > Whatcha thank girl? > > > > Brother > > da love doctor > > > > CHAT TOMORROW AT MIDNIGHT. WE'LL KEEP THE PORCH LIGHT ON FOR YA!!! > > OTAY! YA'LL COME BY NOW YA HEAR?!?!?!?!?! > > > Quote Link to comment Share on other sites More sharing options...
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