Guest guest Posted August 27, 1999 Report Share Posted August 27, 1999 Peg, As a caregiver, I would take the initiative and cancel those squaredancing plans. I don't know how serious this is, but, you need time and a clear head to decide what your course of action will be. Don't mean to be a party pooper but I think it's just being realistic. Good luck and please keep us posted. Gracie krooner-@... wrote: original article:/group//?start=3782 > The doctor just called Phil and said they got the results of the CT > Scan and he has a blood clot in his abdomen. He has to take blood > thinners and something by infusion. What does this mean? Has anyone > else had this problem. He has absolutely no symptoms that would > indicate this. They said his liver has not lesions just the blockages > in the bile ducts so they don't suspect cancer. He has to start on > this tomorrow. I hate it when the doctor calls him and I'm not there > to ask questions! We'll be seeing the liver doctor next Friday but > until then, does he have to restrict activities. He has been > complaining the last couple days for more fatigue that usual. We are > supposted to be doing and outside progressive square dance demos on > Saturday and a picnic on Sunday. Don't want him to do anything > dangerous. Next weekend is our yearly Labor Day Weekend Square Dance > Jamboree that our association puts on and we are very heavily involved > in it and are planning to camp with our friends in their motor home. > These things have not bothered Phil before he just rests when he gets > tired. Oh I'm sounding hysterical - sorry. It justs sounds scary to > me. > Thanks for any and all (especially technical) input. > Peg > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 1999 Report Share Posted August 27, 1999 Being that we are V.P. of the association we will probably not cancel the plans but will certainly curtail Phil's activity in them. The convention is only 1 hour from home and we will definately check into were the nearest hospital is located. We will be seeing the liver doctor next Fri before we go and will definately follow his instructions. This week we will lay kind of low and Phil will be an observer more than anything you can be sure I will push that (and I have a tremendous influence on what he does or doesn't do, thank goodness he listens to me and pretty much does what I command). I talked with my son who is a paramedic in the Chicago suburbs and he gave me a lot more details on what to expect/and look out for/ and avoid. I'll feel much more comfortable after we meet with the doctor next week. Thanks for your " care-giver " concern we got to look out for our guys. Peg krooner1@... wrote: > Peg, > > As a caregiver, I would take the initiative and cancel those > squaredancing plans. I don't know how serious this is, but, you need > time and a clear head to decide what your course of action will be. > Don't mean to be a party pooper but I think it's just being realistic. > > Good luck and please keep us posted. > > Gracie > > krooner-@... wrote: > original article:/group//?start=3782 > > The doctor just called Phil and said they got the results of the CT > > Scan and he has a blood clot in his abdomen. He has to take blood > > thinners and something by infusion. What does this mean? Has anyone > > else had this problem. He has absolutely no symptoms that would > > indicate this. They said his liver has not lesions just the blockages > > in the bile ducts so they don't suspect cancer. He has to start on > > this tomorrow. I hate it when the doctor calls him and I'm not there > > to ask questions! We'll be seeing the liver doctor next Friday but > > until then, does he have to restrict activities. He has been > > complaining the last couple days for more fatigue that usual. We are > > supposted to be doing and outside progressive square dance demos on > > Saturday and a picnic on Sunday. Don't want him to do anything > > dangerous. Next weekend is our yearly Labor Day Weekend Square Dance > > Jamboree that our association puts on and we are very heavily involved > > in it and are planning to camp with our friends in their motor home. > > These things have not bothered Phil before he just rests when he gets > > tired. Oh I'm sounding hysterical - sorry. It justs sounds scary to > > me. > > Thanks for any and all (especially technical) input. > > Peg > > > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 1999 Report Share Posted August 27, 1999 Hi Peg! Yet another new development on Phil. All I can say is that you two have really been through it. I know that this doesn't answer your question about the clot, but you know me -- I know nothing!! In the pit of my stomach (filled with holes LOL), I know that you both will be able to attend the Labor Day Weekend. However, I just don't know how Phil could do the square dancing -- better person than I am!! How he is doing it now is a surprise! Hey, you don't have to be so strong -- I, personally, think that being strong really gets on my last nerve. Throughout my life with all the you-know-what happening, everyone says, " Oh Biddy, why are you worrying about this or that -- you are a strong woman and you will deal with it -- you are a survivor! " Well maybe, but I would like for once someone to be strong for me -- just once. Ain't gonna happen! Hope you two have fun next weekend, even though Phil maybe not be able to dance!! Hugs and hugs, Biddy Help-new symptom >The doctor just called Phil and said they got the results of the CT >Scan and he has a blood clot in his abdomen. He has to take blood >thinners and something by infusion. What does this mean? Has anyone >else had this problem. He has absolutely no symptoms that would >indicate this. They said his liver has not lesions just the blockages >in the bile ducts so they don't suspect cancer. He has to start on >this tomorrow. I hate it when the doctor calls him and I'm not there >to ask questions! We'll be seeing the liver doctor next Friday but >until then, does he have to restrict activities. He has been >complaining the last couple days for more fatigue that usual. We are >supposted to be doing and outside progressive square dance demos on >Saturday and a picnic on Sunday. Don't want him to do anything >dangerous. Next weekend is our yearly Labor Day Weekend Square Dance >Jamboree that our association puts on and we are very heavily involved >in it and are planning to camp with our friends in their motor home. >These things have not bothered Phil before he just rests when he gets >tired. Oh I'm sounding hysterical - sorry. It justs sounds scary to >me. >Thanks for any and all (especially technical) input. >Peg > > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 1999 Report Share Posted August 27, 1999 Biddy, Thanks for your encouragement. Phil gets tired but he's able to square dance he just paces himself. ly with all my arthritis aches and pains and now a problem with my foot he doesn't have much problem keeping up with me. Square dancing can be as strenuous as you make it. There are people that square dance that can hardly walk, are on oxygen etc. It is basically walking to music. This weekend we are doing a progressive squares that is done on this day all across the country. You and others start at a certain place then progress maybe to another and then all converge at one place. Here in sunny Calif it is too stinking hot and we always die so we probably wouldn't do too much dancing anyhow. We'll probably just hand out flyers or mingle. Next weekend the jamboree is put on by our association and we are the V.P.'s so we will be working it quite a bit. We are staying with our friends right there on the grounds so Phil can go lay down anytime he needs to. My biggest concern is that we are at least an hour from home and our usually medical hospital/facilities. We'll take our cues from the doctors though. Thanks for your concern. Peg Biddy Santon wrote: > Hi Peg! > Yet another new development on Phil. All I can say is that you two > have really been through it. I know that this doesn't answer your question > about the clot, but you know me -- I know nothing!! > In the pit of my stomach (filled with holes LOL), I know that you > both will be able to attend the Labor Day Weekend. However, I just don't > know how Phil could do the square dancing -- better person than I am!! How > he is doing it now is a surprise! > Hey, you don't have to be so strong -- I, personally, think that being > strong really gets on my last nerve. Throughout my life with all the > you-know-what happening, everyone says, " Oh Biddy, why are you worrying > about this or that -- you are a strong woman and you will deal with it -- > you are a survivor! " Well maybe, but I would like for once someone to be > strong for me -- just once. Ain't gonna happen! > Hope you two have fun next weekend, even though Phil maybe not be able > to dance!! > Hugs and hugs, > Biddy > Help-new symptom > > >The doctor just called Phil and said they got the results of the CT > >Scan and he has a blood clot in his abdomen. He has to take blood > >thinners and something by infusion. What does this mean? Has anyone > >else had this problem. He has absolutely no symptoms that would > >indicate this. They said his liver has not lesions just the blockages > >in the bile ducts so they don't suspect cancer. He has to start on > >this tomorrow. I hate it when the doctor calls him and I'm not there > >to ask questions! We'll be seeing the liver doctor next Friday but > >until then, does he have to restrict activities. He has been > >complaining the last couple days for more fatigue that usual. We are > >supposted to be doing and outside progressive square dance demos on > >Saturday and a picnic on Sunday. Don't want him to do anything > >dangerous. Next weekend is our yearly Labor Day Weekend Square Dance > >Jamboree that our association puts on and we are very heavily involved > >in it and are planning to camp with our friends in their motor home. > >These things have not bothered Phil before he just rests when he gets > >tired. Oh I'm sounding hysterical - sorry. It justs sounds scary to > >me. > >Thanks for any and all (especially technical) input. > >Peg > > > > > >------------------------------------------------------------------------ > > > >eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > > > > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 1999 Report Share Posted August 27, 1999 Peg-- Just getting to my 304 e-mails & sorry I didn't see this one sooner. I have never heard of a blood clot associated w/PSC - do they have a clue on this? I know normally w/blood clots, depending on the location, the person has to be very limited on activities -sometimes even lying down. Will be praying that the meds they put Phil on will have done their job or helped by now. Will keep both of you in my thoughts & prayers. I, too, would be nervous about going away from home - even for an hr. I'm sure the dr. will let you know whether this is a good idea or not. Hopefully by then things will be doing better. Love & Prayers, Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 1999 Report Share Posted August 27, 1999 Peg! Thank God you might be able to attend this soiree!! I have never square-danced, but I understood it was very, very exhausting. After what you said it makes it a bit more appealing -- dance at your own pace. I live in West Virginia and have never square-danced, clogged, any mountain music dance stuff. I never liked it. It seems like a lot of people that are from a certain area just don't appreciate what they have -- I do appreciate and love our arts and crafts festivals. The workmanship in these mountains (Appalachian) are beautiful and some are so crappy -- just like life. We don't live far from the most famous place for the most exquisite quilts in the US -- Cabin Creek, W.Va. Being from this part of the country, I have seen a lot of quilts, but the ladies in this coal-mining " camp " (as they used to call them) produce the most beautiful and detailed quilts -- all are hand-made. They have ladies in the town that get together and make all of the quilts -- this actually started as something for the ladies to do a long time ago and at the same time make these " blankets " to be used at home during the harsh winters. The materials have changed somewhat, but not the quality. Do I sound like an advertisement for WV? Didn't mean to, but it is so beautiful here -- and there is even beauty of its own in the coal camps. It is not very pretty at all in some sections of WV where you can actually see toilet paper hanging from the limbs of trees when the rivers subside! I am not exaggerating -- but that is entirely another world and really a place to go for people to appreciate what they have. In these areas - mainly McDowell County -- is exactly what is depicted about WV. They live in these shacks on the side of the hills with a TV dish and a Cadillac!! That is the horrible part of WV. But I can't ever see it changing -- it is a way of life with these folks. Their great-grandfathers, grandfathers, and fathers all worked in mines quit their jobs, had a LOT of children and have stayed on Welfare and Medicaid all of their lives. Most of these people have never worked and they do not want to. Have a wonderful time and remember, as you too well know, not to waste one precious moment in your life -- after all we don't know how much time we have left. Of course, we could get hit by a Mack truck but I doubt that is the way PSCers will go. A lot of us will be saved -- a lot not. Just like life, it is the luck of the draw!! Hugs to you both, Biddy Help-new symptom >> >> >The doctor just called Phil and said they got the results of the CT >> >Scan and he has a blood clot in his abdomen. He has to take blood >> >thinners and something by infusion. What does this mean? Has anyone >> >else had this problem. He has absolutely no symptoms that would >> >indicate this. They said his liver has not lesions just the blockages >> >in the bile ducts so they don't suspect cancer. He has to start on >> >this tomorrow. I hate it when the doctor calls him and I'm not there >> >to ask questions! We'll be seeing the liver doctor next Friday but >> >until then, does he have to restrict activities. He has been >> >complaining the last couple days for more fatigue that usual. We are >> >supposted to be doing and outside progressive square dance demos on >> >Saturday and a picnic on Sunday. Don't want him to do anything >> >dangerous. Next weekend is our yearly Labor Day Weekend Square Dance >> >Jamboree that our association puts on and we are very heavily involved >> >in it and are planning to camp with our friends in their motor home. >> >These things have not bothered Phil before he just rests when he gets >> >tired. Oh I'm sounding hysterical - sorry. It justs sounds scary to >> >me. >> >Thanks for any and all (especially technical) input. >> >Peg >> > >> > >> >------------------------------------------------------------------------ >> > >> >eGroups.com home: /group/ >> > - Simplifying group communications >> > >> > >> > >> > >> > >> >> ------------------------------------------------------------------------ >> >> eGroups.com home: /group/ >> - Simplifying group communications > > > > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 1999 Report Share Posted August 28, 1999 Peg, Sorry to hear of Phils new developments...There seems to be no end, theres always something new...As far as the infusion...The only thing I would guess at is he will be given something IV euther once or twice....Tyler had problems with very low red counts...They were low enough to transfuse but the wanted to try iron infusions first...So for three different weeks he would go to the hosp. and get the infusion...Took about 1 hour and then they had to watch him for about 1 hour...So it sounds like they are going to infuse some meds for Phil...I'm surprised that the doc..didn't explain more or better....I hate it when they talk to us like we been to medical school...Even with all the knowledge that we gain here it is hard to comprehend wometimes when we are scared,nervous,anxious....As far as his acitvity I would call the doc and ask if he needs to rescrict anything....Like you are supposed to just know these things.....All the best to you and Phil.. Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Luanne, Phil started on oral coumatin on Friday and we went to the infusion center on Saturday where he learned how to give himself shots of Lovenox which he will be taking twice a day for a week. Yesterday a person from the pharmacy called to explain what was happening and answere questions. This time, I got on the phone too. The Lovenox acts quicker than the coumatin so that is why he is also getting that. He has to go into the lab everyday this week for them to test his blood for thinness and she suggested that he see his internist also this week before we go away for the weekend, if we get to go. When the doctor told him the blood clot was in the abdomen we didn't relate it to the leg pain he has been have for the last couple of weeks. He did some planting around our patio and we thought it was muscle soreness, when you get to be our age you get it so easy after doing physical stuff like that. I don't think this is realated to the PSC, at least I can't imagine why it would be and I wonder if it will delay him getting listed. It's hard having something like this going on and having to wait to talk to the doctors. It is certainly not helping my stress level and probably not Phil's either (he doesn't show it externally as much as I do). We do know how to take it easy with the square dancing and we are working at the Jamboree this weekend and what we have to do is not strenuous stuff. The worst part would be that we would be at least an hour away from our regular medical facilities and would have to go to strange and possibly non-affliated hospitals. Isn't this fun! They did say that laying down or sitting too long is not good either. So if we can go he'll just take it real easy. We are staying with our friends in their motor home on the grounds so he'll be able to go rest as needed. Peg BBNLU@... wrote: > Peg, > Sorry to hear of Phils new developments...There seems to be no end, theres > always something new...As far as the infusion...The only thing I would guess > at is he will be given something IV euther once or twice....Tyler had > problems with very low red counts...They were low enough to transfuse but the > wanted to try iron infusions first...So for three different weeks he would go > to the hosp. and get the infusion...Took about 1 hour and then they had to > watch him for about 1 hour...So it sounds like they are going to infuse some > meds for Phil...I'm surprised that the doc..didn't explain more or > better....I hate it when they talk to us like we been to medical > school...Even with all the knowledge that we gain here it is hard to > comprehend wometimes when we are scared,nervous,anxious....As far as his > acitvity I would call the doc and ask if he needs to rescrict > anything....Like you are supposed to just know these things.....All the best > to you and Phil.. > Luanne Ty's mom > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.