Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Info for absmail69

judithdavis3 Message
22 Mar 2009, 05:15 AM

Hello. Welcome to rareshares SCLS blog! Lots of info is in all of the discussion topics. Dr Greipp is the USA specialist for SCLS. He is at Mayo Clinic in Rochester MN. I think that your doctor needs to call him direct to ask him to see you-I had to go that route 4 years ago. I don't think that he is taking new patients unless the dr calls. There seems to be 2 types of SCLS chronic and acute. Some of us leak every few days and some leak every few monthe or even years. Regardless of the type, all of us and our family member advocates need to be educated regarding SCLS. It is truly a life or death situation. Most of us monitor blood pressure and symptoms to know when to go to the ER. Please ask any specific questions that you have. I have tried to read all of the publications about SCLS. Feel free to email
clswalt Message
22 Mar 2009, 08:05 AM

Judith and All My e-mail is Do you know how many of us there are right now? Does saline IV help as a general rule alone, if they do not flood us? It seems that Albumin only works well as long as it is given quickly. Do you have IV capabilities at home? Does anyone have home care nurses give the IV's at home?
judithdavis3 Message
22 Mar 2009, 06:44 PM

Walt The guy in Idaho (Nolan) gets IV fluids at home. He has a port and his wife is an RN and she gives it. I do homecare nursing and the best way to get fluids at home is to have a central line of some sort and do it yourself. My doc questions the safety of this because of not being monitored for BP and hematocrit. Judicious use of fluids is the rule-enough to keep us alive but not kill us with pulmonary edema. Saline is generally the fluid of choice. Dr Amoura the French specialist told Arturo and I that his rule is NEVER more than 2 liters of saline because 2 liters won't kill anyone. Most docs want to give more with an acute severe attack here in the USA. Dr Amoura actually starts IVIG immediately when an attack occurs so fluids are received from the IVIG fluid. I count 17 patients on this blog but boy are we spread out all over the world. The majority seem to be 50ish. Arturo and I went from 2 to 17 in a short period of time... The other 3 we knew previously moved their address to heaven. I am off to NIH.
nwbsaw Message
22 Mar 2009, 09:03 PM

Hi, This is Wendy from Idaho. My husband Nolan was having attacks every five to six days last year. They started to get worse and worse last fall. Usually, during an attack,he would just drink extra fluid, if he wasn't vomiting. If he starts to vomit or his blood pressure goes down below 100 and he fills faint I start IV fliuds. He has a port that is just under his skin on his chest. This was inserted by a surgeon about a year ago. It works great if Nolan needs fluid. He hates needles! I always monitor his blood pressure through the fluid administration. If it keeps dropping we go to the ER. Or if he is passing out I have to call the ambulance. Any way, strangely, after the major attack he had in November he has total quit having attacks. It has almost been five monthes. What a strange disease. I always thought we were at a disadvantage living in a small community. But after hearing the trouble getting into ERs some of you have I quess there are some benifits. We are always taken right into our ER. ( I work in the hospital that is only a few blocks from our home.) It is supportive to hear from all of you. Wendy
rnolan Message
23 Mar 2009, 02:20 AM

Hi there, Looking back before I had my major attack (October 2005) I think I probably had about three small attacks however never sought medical attention for these. Since my major attack I have had no symptoms at all that I am aware off? I do suffer from edema, pain in my legs and my blood pressure sits around normal however can sometimes be on the high side depending on how much sleep I get due to pain. Things I noticed before going unconscious with my major attack were, dead right arm, vomiting (no fluid associated with the vomit), passing out, very thirsty and very low blood pressure. I have an arrangement with the Hematology department at our hospital here in Christchurch to ring them for direct admission, what happens next is unknown to me as I am supposed to be the first ever case in New Zealand and medical people here know little about ISCLS. This is why I am so grateful to this site and Arturo for help and information. Ruth