Linda P. Where are you?

kayandok

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

Linda,
the two phrases that jumped out to me were,

"I can enjoy life more" and "chillin with Vic" ! You have this whole QOL life thing nailed, and are a wonderful example of cultivating JOY even as you come to the end of this early road. I know everyone has said this and I don't want to sound like a broken record, but you truly are amazing and my hero, Linda! Ony wish I could pop over and have a chat over a cup of tea. I have learned so much from you, and only hope I can be half as creative and positive when my time comes, and I hope later than sooner. Only the Lord knows....

Keep your updates coming as you have energy and strength. Have you thought about a YOUTube (closed deal with passowords only) sort of thing for all us following you? I know that might be too much, but just a thougt.

I love you and you are constantly in my thoughts and prayers.

Warm hugs,
kathleen

djinco

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

Love you, Linda.
You continue to amaze me. I am always in awe of your strength and grace in the face of adversity. You are a blessing to all members of this board. I love you.

Take care,
Betty

Susan777

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

Linda....
It is so great that you have masterminded your own plan on how to keep yourself comfortable, keep your digestion moving and keep your food down. I had heard the oxycodone can cause nausea. I hope those patches work well. There is also a fenytal lollypop that you can use for break-thru pain. It does not sound at all like your body is shutting down. It is just in a transitional phase that you are learning to adjust to. Your strenght is tremendous! Prayers and ((((HUGS)))!

Susan

TiggersDoBounce

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

Good News, good plan
So glad to hear from you....

Amazing what changes may still be open to us even when the cancer treatment phase has stopped.

Keep it chilling with Vic and the kids....
Laurie

nempark

lindaprocopio said:

I didn't mean to leave you all worrying: I feel BETTER.
My ascites is back up already so I'm having a paracentesis drain Friday morning so that I can have a comfortable weekend. But they re-worked my meds yesterday and I feel infinitely better. I actually slept through the night last night, getting up only once. Then I got up and pooped. (How wierd that eating and pooping are the focus of my days! I was able to visit with my 2 sons, sister, and brother, most of them up from far distance traveling to see me. I was able to drink 3 cans of Replete today, a Greek yogurt, and a bowl of the corned beef and cabbge my sister brought me. I can't tell you how HUGE this is. I'm truly at the 'eat or die' stage so getting my nausea under control is a life or death achievment.

Here's my new plan:
1.) I will be letting the doctor know Friday that I've decided to get the ascites catheter next week so that I can tap off the fluid when it gets bad myself. This is the 3rd step in my NEW symptom-control plan that the hospice nurse worked out with Vic & I yesterday when she was here.
2.) My greatest misery had been that the oxicodone was making me nauseous all the time to the point that I was throwing up most of what food and pills and the Replete. And if you can't keep food down, there's frankly no use eating; it does you no good and hurts. Nefore this, I'd take Zofran for the nausea (which the nurse said is rarely effective at this stage of cancer), and I would be so constipated. I have lots of laxitives that are a part of my daily pill regime but they added to the nausea. So they've started me on a tiny tiny dose of haldol (sp?) which is for confusion and crazy people in MUCH larger doses. It's a liquid that is eye-droppered under the tongue and I guess it works by fooling your brain into thinking you are NOT nauseous. & it seems to working good after 3 days!
3.) They took me off the Oxicodone except for emergencies and put me on a fenytal patch that we can always up the dosage of as time goes on. This automatically controls my pain in time-release.

And what these changes have allowed is that I need MUCH less laxitives. So my daily pill count really dropped and that helps with the nausea, too. So I think I have a new plan (again) that looks promising. I hope to get to a good place again where I can enjoy life more, and feel that may just be achievable now. It is wonderful to have all of my friends and family are coming and bringing their support and love, but 4 hours is my limit before I need a short nap. But my afternoon nap sets me up for a pretty nice evening chilling with Vic. Thank you for caring. I'll try and keep you updated.

Linda I am in Europe:::::
my sister is very ill so I went to see her: But I had to check in with you. May Jehovah
God bless you and your family And help you all to endure and to find and achieve that place where you can feel comfortable and continue to chill with Vic for a long time: june

kikz

Tina Brown said:

God bless Linda
I am so pleased Linda that you have new meds that are able to give you some relief and a better quality of life. So pleased you are strong enough to keep posting as I am enjoying reading your story. Much love to you and your family.

Tina xxx

Linda I am so happy
to hear you are getting some relief. We all came to this site because of an ugly monster but I am so proud to be in the company of the wonderfully courageous women I found here. As women I think what we do best is finding beauty where others don't (or can't) see it. My prayers go out to you and your loved ones.

Karen

lindaprocopio

kikz said:

Linda I am so happy
to hear you are getting some relief. We all came to this site because of an ugly monster but I am so proud to be in the company of the wonderfully courageous women I found here. As women I think what we do best is finding beauty where others don't (or can't) see it. My prayers go out to you and your loved ones.

Karen

quick update as I am still a little weak.
I was lucky enough to be able to get the permanent catheter drain done Friday instead of the more temporary parcentesis. So I spent Frday night in the hospital. The surgery to insert the catheter was more extensive than I was planning on. Vic & I are both learned to use the drain and it is wonderful to be able to relieve that ascies pressure whenever I need to. Scary that we've been draining off 1 or 2 litres evey day, but more room out than in. They did labs on me at the hospital and my potassium was high & sodium low, so I can get off those potassium horse pills for now. My bilirubin is in the 20's and liver number awful, but there's nothing I can do for those at this stage. I continue to drink 2 or 3 Replete's, and without the ascites I am eating some. I have lots of company to look forward to this week. Vic's son Dennis is coming from Tampa Thursday and staying 'till Tuesday, and my son Eric will be back in Wednesday. Vic's 2 sisters are coming for a visit Thursday, maybe Friday. I don't try to entertain or hostess because I just can't, but they all make do and it should be fun. I have limited energy and encourage everyone to let me nap around 2 each day, and they understand. So the last piece in my new self-care is in place and I'm pretty sure I can find a plateau I can linger on awhile. Already, with making myself move around today, I am independently able to get around the downstairs. (Ignore the time this was posted; I've been dozing all day trying to ride out the sedatives.) hugs, all.

carolyn45

lindaprocopio said:

quick update as I am still a little weak.
I was lucky enough to be able to get the permanent catheter drain done Friday instead of the more temporary parcentesis. So I spent Frday night in the hospital. The surgery to insert the catheter was more extensive than I was planning on. Vic & I are both learned to use the drain and it is wonderful to be able to relieve that ascies pressure whenever I need to. Scary that we've been draining off 1 or 2 litres evey day, but more room out than in. They did labs on me at the hospital and my potassium was high & sodium low, so I can get off those potassium horse pills for now. My bilirubin is in the 20's and liver number awful, but there's nothing I can do for those at this stage. I continue to drink 2 or 3 Replete's, and without the ascites I am eating some. I have lots of company to look forward to this week. Vic's son Dennis is coming from Tampa Thursday and staying 'till Tuesday, and my son Eric will be back in Wednesday. Vic's 2 sisters are coming for a visit Thursday, maybe Friday. I don't try to entertain or hostess because I just can't, but they all make do and it should be fun. I have limited energy and encourage everyone to let me nap around 2 each day, and they understand. So the last piece in my new self-care is in place and I'm pretty sure I can find a plateau I can linger on awhile. Already, with making myself move around today, I am independently able to get around the downstairs. (Ignore the time this was posted; I've been dozing all day trying to ride out the sedatives.) hugs, all.

Hooray for the drain!!
I'm thrilled to hear that you can look forward to NEVER having a fluid build up again! Indeed that will put you on a plateau for awhile so that you can enjoy all of your visitors. It's marvelous that you're living so fully in the right now. Keep up those naps! Sleep is the very best medicine. BIG hugs to you, Carolyn

Tina Brown

lindaprocopio said:

quick update as I am still a little weak.
I was lucky enough to be able to get the permanent catheter drain done Friday instead of the more temporary parcentesis. So I spent Frday night in the hospital. The surgery to insert the catheter was more extensive than I was planning on. Vic & I are both learned to use the drain and it is wonderful to be able to relieve that ascies pressure whenever I need to. Scary that we've been draining off 1 or 2 litres evey day, but more room out than in. They did labs on me at the hospital and my potassium was high & sodium low, so I can get off those potassium horse pills for now. My bilirubin is in the 20's and liver number awful, but there's nothing I can do for those at this stage. I continue to drink 2 or 3 Replete's, and without the ascites I am eating some. I have lots of company to look forward to this week. Vic's son Dennis is coming from Tampa Thursday and staying 'till Tuesday, and my son Eric will be back in Wednesday. Vic's 2 sisters are coming for a visit Thursday, maybe Friday. I don't try to entertain or hostess because I just can't, but they all make do and it should be fun. I have limited energy and encourage everyone to let me nap around 2 each day, and they understand. So the last piece in my new self-care is in place and I'm pretty sure I can find a plateau I can linger on awhile. Already, with making myself move around today, I am independently able to get around the downstairs. (Ignore the time this was posted; I've been dozing all day trying to ride out the sedatives.) hugs, all.

Linda
It is so nice to hear from you and so nice that you will never have ascites again So pleased your spirits are up and that you are having your family around.

God bless, Tina xxx

mopar

lindaprocopio said:

quick update as I am still a little weak.
I was lucky enough to be able to get the permanent catheter drain done Friday instead of the more temporary parcentesis. So I spent Frday night in the hospital. The surgery to insert the catheter was more extensive than I was planning on. Vic & I are both learned to use the drain and it is wonderful to be able to relieve that ascies pressure whenever I need to. Scary that we've been draining off 1 or 2 litres evey day, but more room out than in. They did labs on me at the hospital and my potassium was high & sodium low, so I can get off those potassium horse pills for now. My bilirubin is in the 20's and liver number awful, but there's nothing I can do for those at this stage. I continue to drink 2 or 3 Replete's, and without the ascites I am eating some. I have lots of company to look forward to this week. Vic's son Dennis is coming from Tampa Thursday and staying 'till Tuesday, and my son Eric will be back in Wednesday. Vic's 2 sisters are coming for a visit Thursday, maybe Friday. I don't try to entertain or hostess because I just can't, but they all make do and it should be fun. I have limited energy and encourage everyone to let me nap around 2 each day, and they understand. So the last piece in my new self-care is in place and I'm pretty sure I can find a plateau I can linger on awhile. Already, with making myself move around today, I am independently able to get around the downstairs. (Ignore the time this was posted; I've been dozing all day trying to ride out the sedatives.) hugs, all.

SO GLAD TO HEAR YOU HAVE SOME RELIEF
You continue to inspire, Linda. It sounds as though you have a tremendously wonderful, supportive, loving family. What a blessing to be able to share and be together, even in the midst of such circumstances. I'm sure everyone understands you need for the nap - it rebuilds your body and spirit so that you can continue to live life with them.

Oodles of hugs to you, Linda. And thank you for contnuing to update us.

Love,
Monika

clamryn

lindaprocopio said:

quick update as I am still a little weak.
I was lucky enough to be able to get the permanent catheter drain done Friday instead of the more temporary parcentesis. So I spent Frday night in the hospital. The surgery to insert the catheter was more extensive than I was planning on. Vic & I are both learned to use the drain and it is wonderful to be able to relieve that ascies pressure whenever I need to. Scary that we've been draining off 1 or 2 litres evey day, but more room out than in. They did labs on me at the hospital and my potassium was high & sodium low, so I can get off those potassium horse pills for now. My bilirubin is in the 20's and liver number awful, but there's nothing I can do for those at this stage. I continue to drink 2 or 3 Replete's, and without the ascites I am eating some. I have lots of company to look forward to this week. Vic's son Dennis is coming from Tampa Thursday and staying 'till Tuesday, and my son Eric will be back in Wednesday. Vic's 2 sisters are coming for a visit Thursday, maybe Friday. I don't try to entertain or hostess because I just can't, but they all make do and it should be fun. I have limited energy and encourage everyone to let me nap around 2 each day, and they understand. So the last piece in my new self-care is in place and I'm pretty sure I can find a plateau I can linger on awhile. Already, with making myself move around today, I am independently able to get around the downstairs. (Ignore the time this was posted; I've been dozing all day trying to ride out the sedatives.) hugs, all.

Thankful
((((Linda)))), I have to tell you that I am so thankful that I have gotten to know you. You have helped me so much and continue to help me. I don't know if you know it or not but you are a gem. I am so glad that you are getting relief and that the catheter was placed.

Love you lots
Linda

pjdreams

lindaprocopio said:

quick update as I am still a little weak.
I was lucky enough to be able to get the permanent catheter drain done Friday instead of the more temporary parcentesis. So I spent Frday night in the hospital. The surgery to insert the catheter was more extensive than I was planning on. Vic & I are both learned to use the drain and it is wonderful to be able to relieve that ascies pressure whenever I need to. Scary that we've been draining off 1 or 2 litres evey day, but more room out than in. They did labs on me at the hospital and my potassium was high & sodium low, so I can get off those potassium horse pills for now. My bilirubin is in the 20's and liver number awful, but there's nothing I can do for those at this stage. I continue to drink 2 or 3 Replete's, and without the ascites I am eating some. I have lots of company to look forward to this week. Vic's son Dennis is coming from Tampa Thursday and staying 'till Tuesday, and my son Eric will be back in Wednesday. Vic's 2 sisters are coming for a visit Thursday, maybe Friday. I don't try to entertain or hostess because I just can't, but they all make do and it should be fun. I have limited energy and encourage everyone to let me nap around 2 each day, and they understand. So the last piece in my new self-care is in place and I'm pretty sure I can find a plateau I can linger on awhile. Already, with making myself move around today, I am independently able to get around the downstairs. (Ignore the time this was posted; I've been dozing all day trying to ride out the sedatives.) hugs, all.

So glad you found some relief
Linda, I'm glad you are more comfortable now that you can do the drain whenever you need it. I pray for peaceful rest for you and the energy to enjoy your visitors. Kindest regards, Paula

Cafewoman53

pjdreams said:

So glad you found some relief
Linda, I'm glad you are more comfortable now that you can do the drain whenever you need it. I pray for peaceful rest for you and the energy to enjoy your visitors. Kindest regards, Paula

Enjoy your family !
You are doing so well! Please send me some of the grace and courage you have so I can use it too. You are very much loved here.
Colleen

Hissy_Fitz

lindaprocopio said:

quick update as I am still a little weak.
I was lucky enough to be able to get the permanent catheter drain done Friday instead of the more temporary parcentesis. So I spent Frday night in the hospital. The surgery to insert the catheter was more extensive than I was planning on. Vic & I are both learned to use the drain and it is wonderful to be able to relieve that ascies pressure whenever I need to. Scary that we've been draining off 1 or 2 litres evey day, but more room out than in. They did labs on me at the hospital and my potassium was high & sodium low, so I can get off those potassium horse pills for now. My bilirubin is in the 20's and liver number awful, but there's nothing I can do for those at this stage. I continue to drink 2 or 3 Replete's, and without the ascites I am eating some. I have lots of company to look forward to this week. Vic's son Dennis is coming from Tampa Thursday and staying 'till Tuesday, and my son Eric will be back in Wednesday. Vic's 2 sisters are coming for a visit Thursday, maybe Friday. I don't try to entertain or hostess because I just can't, but they all make do and it should be fun. I have limited energy and encourage everyone to let me nap around 2 each day, and they understand. So the last piece in my new self-care is in place and I'm pretty sure I can find a plateau I can linger on awhile. Already, with making myself move around today, I am independently able to get around the downstairs. (Ignore the time this was posted; I've been dozing all day trying to ride out the sedatives.) hugs, all.

Linda....
The cath was such
Linda....

The cath was such a blessing for Nancy. I am really, really glad you had it done.

I had ascites pre-surgery - it was what caused the pain that was my only symptom - and I was so uncomfortable, they did the parcentesis right away, even though I was scheduled for surgery within a few days. They drained 2 1/2 liters and it was SUCH a relief.

I have not sent you any CSN email messages because I know you are probably overwhelmed with them, but please know that you are always - every day - in my thoughts and prayers.

We will be with you in spirit, even when you don't feel like posting, and we will see you thru this.

Carlene

srwruns

lindaprocopio said:

quick update as I am still a little weak.
I was lucky enough to be able to get the permanent catheter drain done Friday instead of the more temporary parcentesis. So I spent Frday night in the hospital. The surgery to insert the catheter was more extensive than I was planning on. Vic & I are both learned to use the drain and it is wonderful to be able to relieve that ascies pressure whenever I need to. Scary that we've been draining off 1 or 2 litres evey day, but more room out than in. They did labs on me at the hospital and my potassium was high & sodium low, so I can get off those potassium horse pills for now. My bilirubin is in the 20's and liver number awful, but there's nothing I can do for those at this stage. I continue to drink 2 or 3 Replete's, and without the ascites I am eating some. I have lots of company to look forward to this week. Vic's son Dennis is coming from Tampa Thursday and staying 'till Tuesday, and my son Eric will be back in Wednesday. Vic's 2 sisters are coming for a visit Thursday, maybe Friday. I don't try to entertain or hostess because I just can't, but they all make do and it should be fun. I have limited energy and encourage everyone to let me nap around 2 each day, and they understand. So the last piece in my new self-care is in place and I'm pretty sure I can find a plateau I can linger on awhile. Already, with making myself move around today, I am independently able to get around the downstairs. (Ignore the time this was posted; I've been dozing all day trying to ride out the sedatives.) hugs, all.

Glad to hear of the "on
Glad to hear of the "on demand" relief. Enjoy your family visits.

anicca

lindaprocopio said:

quick update as I am still a little weak.
I was lucky enough to be able to get the permanent catheter drain done Friday instead of the more temporary parcentesis. So I spent Frday night in the hospital. The surgery to insert the catheter was more extensive than I was planning on. Vic & I are both learned to use the drain and it is wonderful to be able to relieve that ascies pressure whenever I need to. Scary that we've been draining off 1 or 2 litres evey day, but more room out than in. They did labs on me at the hospital and my potassium was high & sodium low, so I can get off those potassium horse pills for now. My bilirubin is in the 20's and liver number awful, but there's nothing I can do for those at this stage. I continue to drink 2 or 3 Replete's, and without the ascites I am eating some. I have lots of company to look forward to this week. Vic's son Dennis is coming from Tampa Thursday and staying 'till Tuesday, and my son Eric will be back in Wednesday. Vic's 2 sisters are coming for a visit Thursday, maybe Friday. I don't try to entertain or hostess because I just can't, but they all make do and it should be fun. I have limited energy and encourage everyone to let me nap around 2 each day, and they understand. So the last piece in my new self-care is in place and I'm pretty sure I can find a plateau I can linger on awhile. Already, with making myself move around today, I am independently able to get around the downstairs. (Ignore the time this was posted; I've been dozing all day trying to ride out the sedatives.) hugs, all.

Thank you
Dear Linda, thank you so much for sharing your journey for us. I have been struggling with my attitude and moods lately, and finding it very difficult to visit this board at all. Your posts are helping me find my way back from fear and into enjoying life again. I truly admire your ability to make the best of your situation and your determination to savor each moment. You are my hero.

zarkapopovic

lindaprocopio said:

quick update as I am still a little weak.
I was lucky enough to be able to get the permanent catheter drain done Friday instead of the more temporary parcentesis. So I spent Frday night in the hospital. The surgery to insert the catheter was more extensive than I was planning on. Vic & I are both learned to use the drain and it is wonderful to be able to relieve that ascies pressure whenever I need to. Scary that we've been draining off 1 or 2 litres evey day, but more room out than in. They did labs on me at the hospital and my potassium was high & sodium low, so I can get off those potassium horse pills for now. My bilirubin is in the 20's and liver number awful, but there's nothing I can do for those at this stage. I continue to drink 2 or 3 Replete's, and without the ascites I am eating some. I have lots of company to look forward to this week. Vic's son Dennis is coming from Tampa Thursday and staying 'till Tuesday, and my son Eric will be back in Wednesday. Vic's 2 sisters are coming for a visit Thursday, maybe Friday. I don't try to entertain or hostess because I just can't, but they all make do and it should be fun. I have limited energy and encourage everyone to let me nap around 2 each day, and they understand. So the last piece in my new self-care is in place and I'm pretty sure I can find a plateau I can linger on awhile. Already, with making myself move around today, I am independently able to get around the downstairs. (Ignore the time this was posted; I've been dozing all day trying to ride out the sedatives.) hugs, all.

Thanks for the update
Hi Linda,

Good to know that you can both get plenty of rest when you want it and will have fun company around to kick off the holiday season. You certainly continue to advocate for yourself and are managing to keep Vic focused on tangible things he can do like the draining. I am sure that it makes him happy to be able to give you some comfort.

I can only imagine how creepy it is to have to keep draining off the liquid. You must be thrilled to take one less pill so I was glad to read that. Thanks for sharing even in the middle of the night!

Zarka

eward

lindaprocopio said:

quick update as I am still a little weak.
I was lucky enough to be able to get the permanent catheter drain done Friday instead of the more temporary parcentesis. So I spent Frday night in the hospital. The surgery to insert the catheter was more extensive than I was planning on. Vic & I are both learned to use the drain and it is wonderful to be able to relieve that ascies pressure whenever I need to. Scary that we've been draining off 1 or 2 litres evey day, but more room out than in. They did labs on me at the hospital and my potassium was high & sodium low, so I can get off those potassium horse pills for now. My bilirubin is in the 20's and liver number awful, but there's nothing I can do for those at this stage. I continue to drink 2 or 3 Replete's, and without the ascites I am eating some. I have lots of company to look forward to this week. Vic's son Dennis is coming from Tampa Thursday and staying 'till Tuesday, and my son Eric will be back in Wednesday. Vic's 2 sisters are coming for a visit Thursday, maybe Friday. I don't try to entertain or hostess because I just can't, but they all make do and it should be fun. I have limited energy and encourage everyone to let me nap around 2 each day, and they understand. So the last piece in my new self-care is in place and I'm pretty sure I can find a plateau I can linger on awhile. Already, with making myself move around today, I am independently able to get around the downstairs. (Ignore the time this was posted; I've been dozing all day trying to ride out the sedatives.) hugs, all.

thinking of you
Linda,
Glad the drain is in place and you and your husband can drain the fluid to help you feel a bit better. Movement and rest are equally necessary. Glad you are doing both. So good to hear you have family and friends around to spend time with. My hope is that once the sedatives from the surgery wear off, that you will have renewed energy. Sending a couple of extra hugs.
xoxo
Eileen

Barneygirl

lindaprocopio said:

quick update as I am still a little weak.
I was lucky enough to be able to get the permanent catheter drain done Friday instead of the more temporary parcentesis. So I spent Frday night in the hospital. The surgery to insert the catheter was more extensive than I was planning on. Vic & I are both learned to use the drain and it is wonderful to be able to relieve that ascies pressure whenever I need to. Scary that we've been draining off 1 or 2 litres evey day, but more room out than in. They did labs on me at the hospital and my potassium was high & sodium low, so I can get off those potassium horse pills for now. My bilirubin is in the 20's and liver number awful, but there's nothing I can do for those at this stage. I continue to drink 2 or 3 Replete's, and without the ascites I am eating some. I have lots of company to look forward to this week. Vic's son Dennis is coming from Tampa Thursday and staying 'till Tuesday, and my son Eric will be back in Wednesday. Vic's 2 sisters are coming for a visit Thursday, maybe Friday. I don't try to entertain or hostess because I just can't, but they all make do and it should be fun. I have limited energy and encourage everyone to let me nap around 2 each day, and they understand. So the last piece in my new self-care is in place and I'm pretty sure I can find a plateau I can linger on awhile. Already, with making myself move around today, I am independently able to get around the downstairs. (Ignore the time this was posted; I've been dozing all day trying to ride out the sedatives.) hugs, all.

So good to hear that you
So good to hear that you have the drain and have some control over the ascites. Glad you are in good hands and surrounded by so many loved ones and enjoying each and every moment.
Hugs and prayers

Laura

Susan53

lindaprocopio said:

quick update as I am still a little weak.
I was lucky enough to be able to get the permanent catheter drain done Friday instead of the more temporary parcentesis. So I spent Frday night in the hospital. The surgery to insert the catheter was more extensive than I was planning on. Vic & I are both learned to use the drain and it is wonderful to be able to relieve that ascies pressure whenever I need to. Scary that we've been draining off 1 or 2 litres evey day, but more room out than in. They did labs on me at the hospital and my potassium was high & sodium low, so I can get off those potassium horse pills for now. My bilirubin is in the 20's and liver number awful, but there's nothing I can do for those at this stage. I continue to drink 2 or 3 Replete's, and without the ascites I am eating some. I have lots of company to look forward to this week. Vic's son Dennis is coming from Tampa Thursday and staying 'till Tuesday, and my son Eric will be back in Wednesday. Vic's 2 sisters are coming for a visit Thursday, maybe Friday. I don't try to entertain or hostess because I just can't, but they all make do and it should be fun. I have limited energy and encourage everyone to let me nap around 2 each day, and they understand. So the last piece in my new self-care is in place and I'm pretty sure I can find a plateau I can linger on awhile. Already, with making myself move around today, I am independently able to get around the downstairs. (Ignore the time this was posted; I've been dozing all day trying to ride out the sedatives.) hugs, all.

Glad to hear
Glad to hear that you are still in control with your treatments Linda. You are so admired by so many of your teal sisters and we love you dearly. You have had such an impact on so many of us. So glad that you are able to have company and enjoy the visits. I am very happy that you and Vic can do the draining to get you comfort. Hoping for that plateau that you are looking for. The time dosen't bother any of us survivors Linda, I think we have all been there at one time or another. Love and respect you, Sharon