Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Hi all, I've been quiet lately and just now I have the strength to get back into things. In January I went to Mass General to have my G tube converted to a GJ. While I was there I had a stroke and ended up at Spaulding rehab to regain some use of my left hand and to work on transfers to and from my wheelchair. I was home for a few days and then I ended back at NEMC with parotitis- an infection in a salivary gland. The stroke wiped out the function of my salivary glands and tear ducts. So I was there for a week and was just about ready to go home when I had a big seizure, also compliments of the stroke. My J tube got plugged with poorly crushed meds and then I had to have it replaced, so that added on another week. But now I'm home, and I'm trying to adjust to this " new normal " . I have a neurogenic bladder and have to catheterize myself every 4 hours around the clock. I'm still on TPN and added fluids and it doesn't look like my gut will tolerate more than meds after all. My vision was severely affected by the stroke and I have no peripheral vision on the left side. The eye dr. also noticed that I am rapidly developing cataracts and will need surgery at some point. I'm in the wheelchair about 90% of the time and I need assistance when I use my walker. My breathing muscles are more affected and now I'm on bipap with O2, sometimes during the day as well as at night. My disease is progressing rapidly and I'm scared. I just got computer software that converts my speech into written text so I'll be able to keep up with the group, but I could really use some phone calls and support. My number is . Thanks guys! HeidiC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Hi, Heidi- I don¹t know you and am new to the group, but I ache for you and what you¹ve been through. You must be one strong lady. I¹ll hold you in my prayers and thoughts, that your adjustment to your new normal is as easy as possible, and that you find some ease and reassurance from the good folks here who know so much more than I do. Blessings, Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Hi HeidiC, Sorry to hear your doing it so bad at the moment. You will be in everyones prayers here, so I hope you feel even stronger soon. Kind regards Wanda from Australia > >Reply-To: >To: >Subject: Update from HeidiC >Date: Thu, 23 Mar 2006 05:05:07 -0000 > >Hi all, I've been quiet lately and just now I have the strength to >get back into things. >In January I went to Mass General to have my G tube converted to a >GJ. While I was there I had a stroke and ended up at Spaulding rehab >to regain some use of my left hand and to work on transfers to and >from my wheelchair. I was home for a few days and then I ended back >at NEMC with parotitis- an infection in a salivary gland. The stroke >wiped out the function of my salivary glands and tear ducts. So I >was there for a week and was just about ready to go home when I had a >big seizure, also compliments of the stroke. My J tube got plugged >with poorly crushed meds and then I had to have it replaced, so that >added on another week. But now I'm home, and I'm trying to adjust to >this " new normal " . I have a neurogenic bladder and have to >catheterize myself every 4 hours around the clock. I'm still on TPN >and added fluids and it doesn't look like my gut will tolerate more >than meds after all. My vision was severely affected by the stroke >and I have no peripheral vision on the left side. The eye dr. also >noticed that I am rapidly developing cataracts and will need surgery >at some point. I'm in the wheelchair about 90% of the time and I >need assistance when I use my walker. My breathing muscles are more >affected and now I'm on bipap with O2, sometimes during the day as >well as at night. My disease is progressing rapidly and I'm scared. >I just got computer software that converts my speech into written >text so I'll be able to keep up with the group, but I could really >use some phone calls and support. My number is . Thanks >guys! >HeidiC > > > _________________________________________________________________ New year, new job – there's more than 100,00 jobs at SEEK http://a.ninemsn.com.au/b.aspx?URL=http%3A%2F%2Fninemsn%2Eseek%2Ecom%2Eau&_t=752\ 315885&_r=Jan05_tagline&_m=EXT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 sorry to hear about your problems. I have problems with my diagphram also but am able to get around without a wheelchair to date. I have MERRF version. I will be praying for you and hope eveything gets better. A coleman from Arkansas Jim > >Reply-To: >To: >Subject: Update from HeidiC >Date: Thu, 23 Mar 2006 05:05:07 -0000 > >Hi all, I've been quiet lately and just now I have the strength to >get back into things. >In January I went to Mass General to have my G tube converted to a >GJ. While I was there I had a stroke and ended up at Spaulding rehab >to regain some use of my left hand and to work on transfers to and >from my wheelchair. I was home for a few days and then I ended back >at NEMC with parotitis- an infection in a salivary gland. The stroke >wiped out the function of my salivary glands and tear ducts. So I >was there for a week and was just about ready to go home when I had a >big seizure, also compliments of the stroke. My J tube got plugged >with poorly crushed meds and then I had to have it replaced, so that >added on another week. But now I'm home, and I'm trying to adjust to >this " new normal " . I have a neurogenic bladder and have to >catheterize myself every 4 hours around the clock. I'm still on TPN >and added fluids and it doesn't look like my gut will tolerate more >than meds after all. My vision was severely affected by the stroke >and I have no peripheral vision on the left side. The eye dr. also >noticed that I am rapidly developing cataracts and will need surgery >at some point. I'm in the wheelchair about 90% of the time and I >need assistance when I use my walker. My breathing muscles are more >affected and now I'm on bipap with O2, sometimes during the day as >well as at night. My disease is progressing rapidly and I'm scared. >I just got computer software that converts my speech into written >text so I'll be able to keep up with the group, but I could really >use some phone calls and support. My number is . Thanks >guys! >HeidiC > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 HeidiC: I am deeply sorry for your recent health problems. This is such a scary disease. You really have to be thankful day by day. I wish you a good recovery and hope you wont have anymore major suffering. I hope you have love ones around you to tell you your loved, and that their lives would be greatly affected with out you. That you are needed very much. Every now and then a few hugs, etc. I will keep you in my thoughts and hope you get back in the swing of things. Take care --- Jim jacolman@...> wrote: > sorry to hear about your problems. I have problems > with my diagphram also > but am able to get around without a wheelchair to > date. I have MERRF > version. I will be praying for you and hope > eveything gets better. > > A coleman from Arkansas > > Jim > > > > > >Reply-To: > >To: > >Subject: Update from HeidiC > >Date: Thu, 23 Mar 2006 05:05:07 -0000 > > > >Hi all, I've been quiet lately and just now I have > the strength to > >get back into things. > >In January I went to Mass General to have my G tube > converted to a > >GJ. While I was there I had a stroke and ended up > at Spaulding rehab > >to regain some use of my left hand and to work on > transfers to and > >from my wheelchair. I was home for a few days and > then I ended back > >at NEMC with parotitis- an infection in a salivary > gland. The stroke > >wiped out the function of my salivary glands and > tear ducts. So I > >was there for a week and was just about ready to go > home when I had a > >big seizure, also compliments of the stroke. My J > tube got plugged > >with poorly crushed meds and then I had to have it > replaced, so that > >added on another week. But now I'm home, and I'm > trying to adjust to > >this " new normal " . I have a neurogenic bladder and > have to > >catheterize myself every 4 hours around the clock. > I'm still on TPN > >and added fluids and it doesn't look like my gut > will tolerate more > >than meds after all. My vision was severely > affected by the stroke > >and I have no peripheral vision on the left side. > The eye dr. also > >noticed that I am rapidly developing cataracts and > will need surgery > >at some point. I'm in the wheelchair about 90% of > the time and I > >need assistance when I use my walker. My breathing > muscles are more > >affected and now I'm on bipap with O2, sometimes > during the day as > >well as at night. My disease is progressing > rapidly and I'm scared. > >I just got computer software that converts my > speech into written > >text so I'll be able to keep up with the group, but > I could really > >use some phone calls and support. My number is > . Thanks > >guys! > >HeidiC > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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