Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Rogene, I think I have at least 10 pounds to go before I get too worried. I weighed 10 pounds less than this when I did chemo the first time. Most of this weight was from the fibromyalgia and thyroid problems. I won't miss it if it doesn't come back. I certainly do not want to lose much more, however, this early in the chemo. I am certain my weight will be a topic when I see the doctor before my next chemo on the 3rd. Every time I lose weight, it comes up. They are going to reduce the chemo amount this time, although I have not told them that yet. I have lost some close up vision and don't want that to continue. If I lose any more vision, we will be switching types of chemo. So, this next month I will probably know a lot more. Love, Lynda At 10:44 PM 3/27/2008, you wrote: >Lynda, > >Before you lose too much weight, you may need to consider getting >nutrition via IV . . . > >The lady who had radiation had to do so because she couldn't eat. It >saved her life. > >Love, > >Rogene > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 -Gosh I hate to hear you are stil having issues.I have been reading your post lately, and bless your heart its been on going.Lets hope the new year brings you a non leaky J tube!!!!!!!! Tonia -- In achalasia , Hulmes <christine.hulmes@...> wrote: > > Hi All > How did everyone's Christmas go anyone have problems? > As you know I had a replacement J-Tube and Gastroscopy done on the 19th of Dec and imedietaly had problems with leakage of bile again though the J-Tube worked fine. I had been changing the dressings up to 15 times a day. I contacted my GI doc about the leakage problem and he said to come in on the 29th Dec. to see him at the hospital. On Xmas Day while sitting down to a roast turkey meal (mashed turkey dinner for me) I had to leave the table in a hurry as I felt something wet running down my tummy. Yep the dressings were soaked again. I am fed up and easily upset now and find it tiring changing the dressings so much. I looked forward to seeing my GI doc. > Anyhow I saw my GI doc this morning and guess what, I have to go through the Gastroscopy and fitting new J-Tube (larger size this time) again and as it is still the holiday season they couldn't give me a date until after the hols. Meanwhile I have to cope as best I can. Any little leakage episode upsets me now as I have to carry spare dressings with me wherever I go. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Hi All I feel privaliged in having you all as members who I can have a moan to through the group. Many thanks. I managed a very enjoyable toasted cheese sandwich at lunchtime yesterday. Just the two slices that's all. Guess what that drated leak again soon after finishing the snack so I changed the dressing and sat down with a cuppa and guess what another leak. I have used 8 rolls of mepore (each 5 metres long) in the last 10 days that's how bad the leakage is. I went this morning to order another 8 rolls of mepore tape and some more dressings and made another appointment to see my GP on the Thursday of next week after the hols for a serious chat. The GI doc said to me yesterday that a little leak is to be expected in my situation but not a big leak like this. He felt my tummy and between my bellybutton and the bottom of my sternum was swollen and rock hard and the doc said this is not normal. If I get a temp. and a feeling of being unwell before I get my next Gastroscopy/J-Tube I must go to A & E and notify him. God I am having a bad spasm at the bottom of my sternum around the bottom of my stomach. Oh it hurts. Got to go. ________________________________ From: Isabella Arnold <arnoldisabella@...> achalasia Sent: Monday, December 29, 2008 12:23:59 PM Subject: Re: Update on treatment Hi , You bet I had problems during Christmas. I'll post on that one later today or tomorrow, the kids can get home any minute now, so I don't have much time now. Just wanted to let you know how sorry I am for the troubles you are facing again and how unbelievable it is, that do not squeeze you in for your scopy with re-do of the tube now. I simply cannot understand the way things work over at your place, honest. I wouldn't care what they would say, but I would rush into an ER in another hospital to get things straightened out. This is absolutely not normal! You are being the most patient patient those docs can wish for! , you have hung in there for so long now, I bet you can hang in there somewhat longer... If not, rush into some ER, it's your good right!!! Lots of love, Isabella ____________ _________ _________ __ From: Hulmes <christine.hulmes> achalasia@grou ps.com Sent: Monday, December 29, 2008 12:42:33 PM Subject: Update on treatment Hi All How did everyone's Christmas go anyone have problems? As you know I had a replacement J-Tube and Gastroscopy done on the 19th of Dec and imedietaly had problems with leakage of bile again though the J-Tube worked fine. I had been changing the dressings up to 15 times a day. I contacted my GI doc about the leakage problem and he said to come in on the 29th Dec. to see him at the hospital. On Xmas Day while sitting down to a roast turkey meal (mashed turkey dinner for me) I had to leave the table in a hurry as I felt something wet running down my tummy. Yep the dressings were soaked again. I am fed up and easily upset now and find it tiring changing the dressings so much. I looked forward to seeing my GI doc. Anyhow I saw my GI doc this morning and guess what, I have to go through the Gastroscopy and fitting new J-Tube (larger size this time) again and as it is still the holiday season they couldn't give me a date until after the hols. Meanwhile I have to cope as best I can. Any little leakage episode upsets me now as I have to carry spare dressings with me wherever I go. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Hi , Unbelievable what you are facing with your tube. Glad you managed to have a toasted cheese sandwich though yesterday! I am doing better now. We had a relaxed day, the kids and I. Tomorrow Romeo (my husband) will have the afternoon off, so I won't be on my own with the kids a lot anymore during their Christmas holidays. My infection isn't doing too well, but it isn't very bad at the moment either. They took a sample yesterday and I will get new antibiotics as of coming Monday. They are now first checking what exactly can be done right now and we need to wait for the results. They wanted to give me some general AB, but together we chose not to. This since the infection is not causing me too much trouble right now and we don't want to stuff me with meds. You know, , I think that the infection I am having right now might be how things started in your case. The only difference is that I get treatment, whereas you didn't get any when you needed it. It's a good thing your G.I. finally is waking up and promised to start working on you finally, it's about time... I am counting the nights... Just 8 more to go before I go in for the scar tissue removal! I cannot wait! It's not a real surgery and I am to go home within a few hours for as far as I know. At the moment the allergic reaction to the AB has gotten back again, I will take my meds against them in a minute and things will be fine soon again. I believe I am back to being myself again, done with the sobbing and negative thinking. It doesn't help one, eh? But sometimes things just get to you and you cannot do a thing about it. Glad those moments/days never last too long. Love, Isabella ________________________________ From: Hulmes <christine.hulmes@...> achalasia Sent: Tuesday, December 30, 2008 1:37:40 PM Subject: Re: Update on treatment Hi All I feel privaliged in having you all as members who I can have a moan to through the group. Many thanks. I managed a very enjoyable toasted cheese sandwich at lunchtime yesterday. Just the two slices that's all. Guess what that drated leak again soon after finishing the snack so I changed the dressing and sat down with a cuppa and guess what another leak. I have used 8 rolls of mepore (each 5 metres long) in the last 10 days that's how bad the leakage is. I went this morning to order another 8 rolls of mepore tape and some more dressings and made another appointment to see my GP on the Thursday of next week after the hols for a serious chat. The GI doc said to me yesterday that a little leak is to be expected in my situation but not a big leak like this. He felt my tummy and between my bellybutton and the bottom of my sternum was swollen and rock hard and the doc said this is not normal. If I get a temp. and a feeling of being unwell before I get my next Gastroscopy/ J-Tube I must go to A & E and notify him. God I am having a bad spasm at the bottom of my sternum around the bottom of my stomach. Oh it hurts. Got to go. ____________ _________ _________ __ From: Isabella Arnold <arnoldisabella> achalasia@grou ps.com Sent: Monday, December 29, 2008 12:23:59 PM Subject: Re: Update on treatment Hi , You bet I had problems during Christmas. I'll post on that one later today or tomorrow, the kids can get home any minute now, so I don't have much time now. Just wanted to let you know how sorry I am for the troubles you are facing again and how unbelievable it is, that do not squeeze you in for your scopy with re-do of the tube now. I simply cannot understand the way things work over at your place, honest. I wouldn't care what they would say, but I would rush into an ER in another hospital to get things straightened out. This is absolutely not normal! You are being the most patient patient those docs can wish for! , you have hung in there for so long now, I bet you can hang in there somewhat longer... If not, rush into some ER, it's your good right!!! Lots of love, Isabella ____________ _________ _________ __ From: Hulmes <christine.hulmes> achalasia@grou ps.com Sent: Monday, December 29, 2008 12:42:33 PM Subject: Update on treatment Hi All How did everyone's Christmas go anyone have problems? As you know I had a replacement J-Tube and Gastroscopy done on the 19th of Dec and imedietaly had problems with leakage of bile again though the J-Tube worked fine. I had been changing the dressings up to 15 times a day. I contacted my GI doc about the leakage problem and he said to come in on the 29th Dec. to see him at the hospital. On Xmas Day while sitting down to a roast turkey meal (mashed turkey dinner for me) I had to leave the table in a hurry as I felt something wet running down my tummy. Yep the dressings were soaked again. I am fed up and easily upset now and find it tiring changing the dressings so much. I looked forward to seeing my GI doc. Anyhow I saw my GI doc this morning and guess what, I have to go through the Gastroscopy and fitting new J-Tube (larger size this time) again and as it is still the holiday season they couldn't give me a date until after the hols. Meanwhile I have to cope as best I can. Any little leakage episode upsets me now as I have to carry spare dressings with me wherever I go. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 christine- I am so frustrated for you. I have a suggestion for dealing with the drainage and the muliple dressing changes in the mean time. feminine napkins. the heavy flow ones. gauze dressings are to loosely woven. they won't hold any volume. some feminine napkins have a wicking action which will pull drainage away from your skin. they are bulkier but it's big warm sweater time now so no worries. the napkins are also processed sterile. to secure try making montgomery straps. using these will keep you from retaping with each dressing change, which can keep your skin from becoming raw. to make mongomery straps you take two 4 to 5 inch strips of tape. fold them approx. 1/3 over on to itself allowing it to stick to iself. using a hole puncher puch 4 or 5 holes on the side you have folded over on both pieces of tape. place the napkin over the j tube site, you can use a 4x4 around the site itself to help wick drainage but decide if this would help. place the 2/3 portion of the tape you did not fold onto itself on either side of the abdomen do not approximate the edges. using a ribbion or shoe lace start at the bottom and lace the dressing like you would a shoe. think about a shoe. the tongue is the napkin, with the tape the eyelet of the shoe. to change simply unlace and remove soiled napkin and replace the pad, relace. remove tape only after it to has become soiled. there maybe some slippage of the pad but it should be realtively secure if lace snuggly. I have dressed many abdominal wounds for patients when I was doing home health using this method. the gauze was expensive and the drainage was heavy. hope this help until you can get your new j tube...angela Update on treatment Hi All How did everyone's Christmas go anyone have problems? As you know I had a replacement J-Tube and Gastroscopy done on the 19th of Dec and imedietaly had problems with leakage of bile again though the J-Tube worked fine. I had been changing the dressings up to 15 times a day. I contacted my GI doc about the leakage problem and he said to come in on the 29th Dec. to see him at the hospital. On Xmas Day while sitting down to a roast turkey meal (mashed turkey dinner for me) I had to leave the table in a hurry as I felt something wet running down my tummy. Yep the dressings were soaked again. I am fed up and easily upset now and find it tiring changing the dressings so much. I looked forward to seeing my GI doc. Anyhow I saw my GI doc this morning and guess what, I have to go through the Gastroscopy and fitting new J-Tube (larger size this time) again and as it is still the holiday season they couldn't give me a date until after the hols. Meanwhile I have to cope as best I can. Any little leakage episode upsets me now as I have to carry spare dressings with me wherever I go. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2009 Report Share Posted January 2, 2009 Thank you so much . Your idea is certainly a good one and I'll give it a try. Thanks also on the description on how to apply the montgomery straps. First time that I have heard of this. ________________________________ From: ANGELA BAKER <kotacj@...> achalasia Sent: Wednesday, December 31, 2008 9:15:07 PM Subject: Re: Update on treatment christine- I am so frustrated for you. I have a suggestion for dealing with the drainage and the muliple dressing changes in the mean time. feminine napkins. the heavy flow ones. gauze dressings are to loosely woven. they won't hold any volume. some feminine napkins have a wicking action which will pull drainage away from your skin. they are bulkier but it's big warm sweater time now so no worries. the napkins are also processed sterile. to secure try making montgomery straps. using these will keep you from retaping with each dressing change, which can keep your skin from becoming raw. to make mongomery straps you take two 4 to 5 inch strips of tape. fold them approx. 1/3 over on to itself allowing it to stick to iself. using a hole puncher puch 4 or 5 holes on the side you have folded over on both pieces of tape. place the napkin over the j tube site, you can use a 4x4 around the site itself to help wick drainage but decide if this would help. place the 2/3 portion of the tape you did not fold onto itself on either side of the abdomen do not approximate the edges. using a ribbion or shoe lace start at the bottom and lace the dressing like you would a shoe. think about a shoe. the tongue is the napkin, with the tape the eyelet of the shoe. to change simply unlace and remove soiled napkin and replace the pad, relace. remove tape only after it to has become soiled. there maybe some slippage of the pad but it should be realtively secure if lace snuggly. I have dressed many abdominal wounds for patients when I was doing home health using this method. the gauze was expensive and the drainage was heavy. hope this help until you can get your new j tube...angela Update on treatment Hi All How did everyone's Christmas go anyone have problems? As you know I had a replacement J-Tube and Gastroscopy done on the 19th of Dec and imedietaly had problems with leakage of bile again though the J-Tube worked fine.. I had been changing the dressings up to 15 times a day. I contacted my GI doc about the leakage problem and he said to come in on the 29th Dec. to see him at the hospital. On Xmas Day while sitting down to a roast turkey meal (mashed turkey dinner for me) I had to leave the table in a hurry as I felt something wet running down my tummy. Yep the dressings were soaked again. I am fed up and easily upset now and find it tiring changing the dressings so much. I looked forward to seeing my GI doc. Anyhow I saw my GI doc this morning and guess what, I have to go through the Gastroscopy and fitting new J-Tube (larger size this time) again and as it is still the holiday season they couldn't give me a date until after the hols. Meanwhile I have to cope as best I can. Any little leakage episode upsets me now as I have to carry spare dressings with me wherever I go. Quote Link to comment Share on other sites More sharing options...
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