Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I am certainly not trying to compete with anyone in the procedure/surgery department, but I just got some news today.
I went to the gastroenterologist today to see about an endoscope. Have to get one about every six months with Lems to check for the dreaded cancer. I had been having ever increasing trouble with swallowing and significant stomach pain, so I was ready to have him take a look.
He was alarmed at my swallowing , which is only very minimally helped by plasmapheresis and medications, so he strongly recommended a stomach tube. He sent me straight over to the surgeon. So on Friday, I will go in for plasmapheresis, then get an endoscope, then either a PEG or Jtube, depending on the size condition of my stomach. I have had a stomach surgery in 2010, so it may not be suitable for tube placement.
Then she noticed that I have had my tunneled catheter for more than six months and recommended I get it replaced by a permacath, which will be entirely under the skin and less prone to infection. If all goes well it should last for years.
She was going to place the new catheter and have me use my old one until it healed, then remove the old one outpatient which would be rather painful. But she decided it would be better to surgically acces the new one while I was under anesthesia and remove the old one at the same time.
I was mentally prepared for the scope, but still trying to adjust to the rest.
I went to the gastroenterologist today to see about an endoscope. Have to get one about every six months with Lems to check for the dreaded cancer. I had been having ever increasing trouble with swallowing and significant stomach pain, so I was ready to have him take a look.
He was alarmed at my swallowing , which is only very minimally helped by plasmapheresis and medications, so he strongly recommended a stomach tube. He sent me straight over to the surgeon. So on Friday, I will go in for plasmapheresis, then get an endoscope, then either a PEG or Jtube, depending on the size condition of my stomach. I have had a stomach surgery in 2010, so it may not be suitable for tube placement.
Then she noticed that I have had my tunneled catheter for more than six months and recommended I get it replaced by a permacath, which will be entirely under the skin and less prone to infection. If all goes well it should last for years.
She was going to place the new catheter and have me use my old one until it healed, then remove the old one outpatient which would be rather painful. But she decided it would be better to surgically acces the new one while I was under anesthesia and remove the old one at the same time.
I was mentally prepared for the scope, but still trying to adjust to the rest.
(((HUGS)))
CindyC :)
You know we can joke about these procedures, have some fun with a 'contest', but these are serious medical issues and we all in one way or another put up with a lot and each have our own strength. The DS site has become a place of comfort and sharing, those around us at work or school fortunately do not have to deal with all of this, that also means that in general they have no idea how much we quietly suffer. This is not easy, but we have each other to be there when needed, thats both important and special.
Getting the perma a cath will be a good idea, thats for sure. Mine is just healing from surgery on Monday and is setup for PLEX and IVIG. It is a bit sore afterwards be sure to ask for pain meds, in the long run from all I have talked to with one, well worth it.
We can all compare notes on what we go through, but we do go through a lot ....I simply would like to say thanks to you limp-noodle and all here for your wonderful support.
Joe
Hugs & Aloha,
Marina
Joe, what type of catheter did you get? My plasmapheresis nurse is worried it won't be the right type for plasmapheresis. He said there are some patients with the vortex brand that work for plasmapheresis. He said that it has to be suitable for dialysis in order to work for plasmapheresis, so now I have to call and ask questions because I don't want the wrong type put in.
Not sure if you know but my daughter has a GJ tube. IT has saved her life. She had so many aspiration pneumonias. I know it is a lot to absorb tho and will be thinking of you. Hugs, Marie
Angie
-sherry