Aa
A long overdue and massive update
Hey gang. For those who aren't old-timers around here, I should introduce myself. My pseudonym here is "heiferly," and I am the active Community Leader here in the Dysautonomia Community. As anyone with dysautonomia knows, "active" is a relative term. (rimshot)
Can you believe there is something like a mere dozen Saturdays until Christmas, Hanukkah is actually falling on Thanksgiving this year, and Halloween is breathing down our necks!?! So where has 2013 gone?? I can't speak for everyone here, but I did want to give a little recap of my year to help reconnect with everyone here. I'm really hoping as we move into 2014 I'll be moving into greater stability in my life and will be able to help get this forum more active again.
January: I was struggling with severe gastroparesis symptoms (daily vomiting, nausea, bloating, and of course pain) as well as low intestinal motility. I'd begun occasionally aspirating reflux, and a gastric ulcer was found under endoscopy, so it was decided it was time to place a feeding tube to bypass my stomach and feed into my jejunum. (I also had some undernourishment issues due to being unable to consume vegetables or most fruits.)
February 28th on International Rare Disease Day (yes, that's a thing!): I had surgery to have a G-J tube placed but it was unsuccessful so I had to cope with a G-tube until my stoma healed and they could go back and revise it. I had complications from the procedure and ended up spending (literally) half of March in the hospital.
April: my tube was changed out for a G-J, but we opted for a low-profile MicKey button which ended up not fitting me right and caused severe pain and inability to function. So a couple of weeks later I had to go back and have the procedure to have that removed and have a Mic G-J tube put in its place.
May: my tube had to be replaced again due to a clog. My wedding was pushed back a month because all my medical crud had made it impossible to plan a wedding.
June: I way over-exerted myself doing wedding preparations, but it was so worth it. My wedding day was the best day of my life. <3
July: Honeymoon and rest rest rest.
August: What should have been a routine surgery to exchange a damaged feeding tube led to a sixteen day hospitalization due to an adverse reaction to the anesthesia. It was my first time having a code called on me, first time in the ICU, first time having to be admitted to a physical rehabilitation hospital .... yeah, it was a banner month for me.
September: Upon my release from the hospital, I moved out of my independent living apartment and into a house. The move was very stressful, but I'm finally feeling more settled in and happy to be here with my hubby. Still traveling back to the city where I had been living at least once a week for outpatient physical rehab and dr. appointments.
October: Next week I have an echo to rule out heart damage that could have occurred from the anesthesia reaction, a doppler test on my legs to see if I could benefit from surgery on my veins (for vascular insufficiency), and I should hear back from general surgery about having a port placed. (A port is an implanted central venous access for blood draws, nutrition, medication administration, and—in the case of power ports—CT contrast.) This is important because my veins are so shot that even under ultrasound guidance they're finding it tricky to get an IV in me, and we need to have fast easy access if I'm going to pull stunts like apnea after anesthesia.
So that's where I stand at the moment, at least the highlights. Banner year!! :-p
I would love to have updates from each of you and hear what you've been up to and how things are going for you.
<3 Heiferly.
Can you believe there is something like a mere dozen Saturdays until Christmas, Hanukkah is actually falling on Thanksgiving this year, and Halloween is breathing down our necks!?! So where has 2013 gone?? I can't speak for everyone here, but I did want to give a little recap of my year to help reconnect with everyone here. I'm really hoping as we move into 2014 I'll be moving into greater stability in my life and will be able to help get this forum more active again.
January: I was struggling with severe gastroparesis symptoms (daily vomiting, nausea, bloating, and of course pain) as well as low intestinal motility. I'd begun occasionally aspirating reflux, and a gastric ulcer was found under endoscopy, so it was decided it was time to place a feeding tube to bypass my stomach and feed into my jejunum. (I also had some undernourishment issues due to being unable to consume vegetables or most fruits.)
February 28th on International Rare Disease Day (yes, that's a thing!): I had surgery to have a G-J tube placed but it was unsuccessful so I had to cope with a G-tube until my stoma healed and they could go back and revise it. I had complications from the procedure and ended up spending (literally) half of March in the hospital.
April: my tube was changed out for a G-J, but we opted for a low-profile MicKey button which ended up not fitting me right and caused severe pain and inability to function. So a couple of weeks later I had to go back and have the procedure to have that removed and have a Mic G-J tube put in its place.
May: my tube had to be replaced again due to a clog. My wedding was pushed back a month because all my medical crud had made it impossible to plan a wedding.
June: I way over-exerted myself doing wedding preparations, but it was so worth it. My wedding day was the best day of my life. <3
July: Honeymoon and rest rest rest.
August: What should have been a routine surgery to exchange a damaged feeding tube led to a sixteen day hospitalization due to an adverse reaction to the anesthesia. It was my first time having a code called on me, first time in the ICU, first time having to be admitted to a physical rehabilitation hospital .... yeah, it was a banner month for me.
September: Upon my release from the hospital, I moved out of my independent living apartment and into a house. The move was very stressful, but I'm finally feeling more settled in and happy to be here with my hubby. Still traveling back to the city where I had been living at least once a week for outpatient physical rehab and dr. appointments.
October: Next week I have an echo to rule out heart damage that could have occurred from the anesthesia reaction, a doppler test on my legs to see if I could benefit from surgery on my veins (for vascular insufficiency), and I should hear back from general surgery about having a port placed. (A port is an implanted central venous access for blood draws, nutrition, medication administration, and—in the case of power ports—CT contrast.) This is important because my veins are so shot that even under ultrasound guidance they're finding it tricky to get an IV in me, and we need to have fast easy access if I'm going to pull stunts like apnea after anesthesia.
So that's where I stand at the moment, at least the highlights. Banner year!! :-p
I would love to have updates from each of you and hear what you've been up to and how things are going for you.
<3 Heiferly.
Glad to see you're back! I still visit here occasionally and try to help other parents with questions.
My son graduated high school in June, on time with his class, even Magna *** Laude. He did all of his classes on line or with a homebound teacher. This was quite an achievement.
After returning from a month at the Mayo Clinic in late 2011, he crashed and his 2012 was worse than ever. 2013 continued on being bad, until June when he started a new medication. It has literally given him his life back. His daily nausea, which was an 8 to 9 (on scale of 10 being worst) is now down to a 2 to 4 daily. We now have to get him moving and socializing to make new friends. We hope to have him start college in January.
Also, he was diagnosed with MCAS in 2012, in addition to his POTS. This was key in getting him better. We were focusing on the POTS while the MCAS was left untreated so we were getting nowhere.
Welcome back,
Christy
My son graduated high school in June, on time with his class, even Magna *** Laude. He did all of his classes on line or with a homebound teacher. This was quite an achievement.
After returning from a month at the Mayo Clinic in late 2011, he crashed and his 2012 was worse than ever. 2013 continued on being bad, until June when he started a new medication. It has literally given him his life back. His daily nausea, which was an 8 to 9 (on scale of 10 being worst) is now down to a 2 to 4 daily. We now have to get him moving and socializing to make new friends. We hope to have him start college in January.
Also, he was diagnosed with MCAS in 2012, in addition to his POTS. This was key in getting him better. We were focusing on the POTS while the MCAS was left untreated so we were getting nowhere.
Welcome back,
Christy
You've had a busy year as well! Sounds like you're on the right track for sure. So good to hear from you, and it's always wonderful to hear good news.
:-D Heiferly.
:-D Heiferly.
I was so hoping you were doing better! I hope they are able to start sorting some issues out for you and help you to start feeling better. We have missed you on here!
Here is my update for anyone that is interested:
January: recovery from decompression surgery on December 21, relatively easy with only minor pain management/muscle spasm issues
February: Diagnosed with POTS and started on Midodrine
March: Started on Florinef and ER visit for infected stitch abscess from decompression surgery, cleared up with antibiotics and found out high dose of florinef contributed to pain and dizziness
April: quiet month with much frustration because no doctors were willing to help me, retried florinef and had a strong negative reaction again
May: Found my savior: the best neurologist ever to help with my POTS, ordered autonomic tests, diagnosed with EDS-3
June: Nothing exciting, just a brain and thoracic MRI which both came back normal (with exception of chiari of course)
July: Autonomic testing done, officially diagnosed with POTS and NMH, started on Florinef very low dose and titrated upwards, tore the cartilage complex in my wrist in sign language class
August: Started beta blocker bisoprolol, adjusted doses of florinef and schedules of medications, surgery for torn cartilage and ER visit for subsequent dehydration from said surgery
September: Continue playing with medications and life style changes now that I finally have a physician that is knowledgeable and caring, smooth recovery from wrist surgery with no hiccups
October: Sent in application to TCI to be evaluated for instability and occult tethered cord, started Strattera for energy and decrease in brain fog, going to start IV fluids for those days/weeks that I just feel like crap!
Overall I am doing pretty well. I finally have hope that I will be able to regain some quality of life. I am very anxious about hearing back from TCI, but I should hear back very soon! I am hopeful that the Strattera will help me be able to finish my last year of college and I am excited to try IV fluids, which my doctor just suggested today. I am hoping all of these things will be able to get me back on my feet to some degree.
Here is my update for anyone that is interested:
January: recovery from decompression surgery on December 21, relatively easy with only minor pain management/muscle spasm issues
February: Diagnosed with POTS and started on Midodrine
March: Started on Florinef and ER visit for infected stitch abscess from decompression surgery, cleared up with antibiotics and found out high dose of florinef contributed to pain and dizziness
April: quiet month with much frustration because no doctors were willing to help me, retried florinef and had a strong negative reaction again
May: Found my savior: the best neurologist ever to help with my POTS, ordered autonomic tests, diagnosed with EDS-3
June: Nothing exciting, just a brain and thoracic MRI which both came back normal (with exception of chiari of course)
July: Autonomic testing done, officially diagnosed with POTS and NMH, started on Florinef very low dose and titrated upwards, tore the cartilage complex in my wrist in sign language class
August: Started beta blocker bisoprolol, adjusted doses of florinef and schedules of medications, surgery for torn cartilage and ER visit for subsequent dehydration from said surgery
September: Continue playing with medications and life style changes now that I finally have a physician that is knowledgeable and caring, smooth recovery from wrist surgery with no hiccups
October: Sent in application to TCI to be evaluated for instability and occult tethered cord, started Strattera for energy and decrease in brain fog, going to start IV fluids for those days/weeks that I just feel like crap!
Overall I am doing pretty well. I finally have hope that I will be able to regain some quality of life. I am very anxious about hearing back from TCI, but I should hear back very soon! I am hopeful that the Strattera will help me be able to finish my last year of college and I am excited to try IV fluids, which my doctor just suggested today. I am hoping all of these things will be able to get me back on my feet to some degree.
Beema and Marie,
HUGS!!! So wonderful to "see" familiar faces here. Hope to catch up more with you both as time goes on. I'm under the weather with an infection now (it's *always* something,right?) but hoping the antibiotics will straighten me out soon.
HUGS!!! So wonderful to "see" familiar faces here. Hope to catch up more with you both as time goes on. I'm under the weather with an infection now (it's *always* something,right?) but hoping the antibiotics will straighten me out soon.
Heiferly good to see you back. Marie told me you were back so good to know.
You have went through quite an ordeal and also a beautiful wedding! Good to hear about the wedding not good how sick you have been.
I am glad that maybe this site will get up and running again. Its been sad to see all the people seeking answers but no response. In much I didn't feel qualified to give a reply. It needs your expertise.
I am having lots of health issues and get discouraged often at my quality of life but keep plugging along.
You take care!!
Beema
You have went through quite an ordeal and also a beautiful wedding! Good to hear about the wedding not good how sick you have been.
I am glad that maybe this site will get up and running again. Its been sad to see all the people seeking answers but no response. In much I didn't feel qualified to give a reply. It needs your expertise.
I am having lots of health issues and get discouraged often at my quality of life but keep plugging along.
You take care!!
Beema
Wow! That is an amazing year for you but it sounds like much is going right and I am happy for your beautiful wedding and transition into your home! That ICU visit and code were scary for sure. Glad you got through that intact!
Will hope for good results on the ECHO. Also hope more can return to this forum. I will send out a note to another member from the old days. :)
I too have had an incredible amt. going on and will catch you up via messaging and may post on here about it too.
Good to see you here! Hugs, Marie
Will hope for good results on the ECHO. Also hope more can return to this forum. I will send out a note to another member from the old days. :)
I too have had an incredible amt. going on and will catch you up via messaging and may post on here about it too.
Good to see you here! Hugs, Marie
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