March 20, 2009 at 4:37 am #27149marionsModerator
Barbara…we are with you, all the way. And don’t ever forget the contributions you are making to this site. All of us learn from each other.
My heart is with you,
MarionMarch 20, 2009 at 4:03 am #27148
Hello Cheerleaders, confidants, friends,
Thanks for your input, encouragement, and friendship. You have all made this rough road more doable, by simply being there for me. My heart goes out to everyone on this site, because the only reason anyone is on this site is because they or a loved one is being affectd by CC. HOwever, it has given me so much comfort to know I am not alone. I couldn’t have done these last months without any of you. You all keep me going, and I realize if you all can do this, I can too.
BarbaraMarch 20, 2009 at 2:31 am #27147magicParticipant
I used to work in radiology and we used to do them under ultrasound-we had a doctor very skilled in ultrasound procedures.We had them down to a fine art and none of the palliative patients needed to stay long.With the pleural drainage there is more risk of puncturing the lung but with the peritoneal cavity its probably infection or drop in bp.Actually my husband had a paracentesis done at home and luckily I was able to assist the doctor with it JanetMarch 19, 2009 at 1:39 pm #27146lainyParticipant
Hi Kid. I cannot express how much I think of you. When you started this horrible journey you didn’t know if you could get through it and just look at you now. I have tears for you and your family as I read your notes. You are so special and as much as you are daddy’s girl, he is so lucky to have a daughter like you. We hope you are having some warmer weather so you can all enjoy the outside. Yes, today WILL be a good day. Our prayers, thoughts and hugs are going out to you and your family.March 19, 2009 at 1:23 pm #27145tessMember
Morning Barbara. You made your decision out of love and your Dad received relief… He’s so lucky to have you, and I hope you both enjoy that taste of sweet wine together this evening! It’s wonderful news that he ‘wanted’ to eat, the small miracles of a day to be grateful for.
Sending many hugs….
TessMarch 19, 2009 at 12:48 pm #27140brookerpParticipant
Barbara – I am so glad your dad was able to get some relief!!! Hang in there girl and take in every moment!!! I am so proud of you and I know your dad is too!! Know that we are thinking of you during this time!!!
Lots of love your way!!
Smiles through tears,
PatsyMarch 19, 2009 at 11:12 am #27144jeffgMember
Janet, I had both done done in the ward and CT guided. Basically I was told that with CT you can immediately see if there is any damage as far as punctured lungs, even if a pin hole and can be taken care of immediately. On the ward it is is usually done with sonogrham and the stay is for the same reason, to be precautious. They normally use a portable xray machine after so many hours then one more before discharge to ensure all is well. There is just so much that can be poked or perferated, they want to make sure. I am happy Barbara’s Dad was able to get fluid drained and I pray it stays away. Barbara, I sure hope your Dad’s drainining is for an extended period or stays drained. Did the Doctor mention anything about taking Ibprofen to help keep the inflammationation down? I know it helped big time on me. Bless you Girl, your one loving daughter!
Jeff G.March 19, 2009 at 10:58 am #27143darlaParticipant
My thoughts & prayers are with you & your family. Know that we are all here for you.
Love & Hugs,
DarlaMarch 19, 2009 at 10:48 am #27142rortmannsMember
My partner has severe ascites and gets drained every 7-9 days at the moment, typically they take 7.5L from her tiny body – she only weighs 48Kg with 7.5L of fluid in her.
In her case the ascites is caused by cancer cells on her stomach lining. Apparently we produce this fluid in small amounts to allow the internal organs to move freely about – slide over one another. In the case of cancer cells that are on the stomach lining this irritation causes the body to respond as though more fluid is required, hence more is produced. Normally more fluid would ease any irritation caused by the lack of fluid but in the case of cancer the irritation continues as does the fluid production.
The worst thing is that once the fluid is removed it seems to build up relatively quickly. Fiona was only kept in hospital once, the first time a large amount was taken – this caused her to have severe referred pain in her shoulder caused by relief of pressure from the ascites on the diaphram. They kept her in to ease the pain. Since that time it has been a relatively simple procedure but gives her much relief.March 19, 2009 at 9:57 am #27141
I am pleased to report the tapping of my dads abdomen was successfully done yesterday. It wasn’t an easy process and I was beginning to regret my decision, but now I am thinking it was worth it. We decided to have an ambulance take him to the hospital and we follow in a car b/c of concern along the way for bumps and general uncomfortableness b/c the pain has gotten really intollerable. It was a sad site, my brother came over with his kids as the paramedics were loading my dad, and my brothers 2 year old started to cry for grandpa, and that made my dad cry. The Hospice dr. was an Italian, and he spoke Italian to my dad, which made my dad smile. He took my mom and me in the hall and told us everything with the bark off- CC is vey aggressive, the tumors are in the internal organs, the acites is coming from the organs not functioning properly anymore. The liver is shutting down, and that is producing toxins in he body which is what is making him so fatigued, it will eventually go to the brain and to the lungs. He said “no one knows when, but this is what will happen” The words were the harshest I have heard, but he said it with such kindness, and sympathy…Then he asked, “what do you want for Roberto?” we said “a bit more comfort at the end of his journey” “perhaps to sit up in bed, possibly walk outside and look at his yard, just a few simple acts that will mean the world to him and us.” So the Dr. said, “ok, the fluid in him is in pockets, so it will be a bit more difficult, but we are going to get some out” and they did. Yesterday they took out 6 liters. He came back to the room and said, he allready felt a weight lifted. He had some soup and ate a cup at normal spead and grapes, and he actually wanted them, he really wanted a glass of red wine, but he will have a glass tonight at home. I am picking him up from hospital this am, and I don’t know how long we have- weeks or maybe just days, but we are going to make the most of the time. I treat every moment, every conversation, every smile, as a gift now with my dad. It is no longer about quantity, but quality.
Today WILL be a good day.
BarbaraMarch 14, 2009 at 1:30 am #27139magicParticipant
Barbara I wonder why he has to stay overnight,I would have thought a few hours observation would be sufficient.Is it being done in a Radiology department or in a ward situation?
JanetMarch 13, 2009 at 10:43 pm #27138
Thanks Lainy and Kris for the vote of confidence. I am doing the best I can I guess. I may never know if some of the decisions I made were the right ones, but I do know I made them with my dads absolute best interest in mind, even if it was with a heavy heart.
BarbaraMarch 13, 2009 at 2:34 pm #27137devoncatParticipant
I cant imagine what it must be like making decisions for someone else…I have enough of a problem making them for myself. You are doing everything right and there is no perfect answer so you have to do what you think is best at the time. There is no good path to follow, only the one we cut for ourselves and it isnt always the best, but the best one we good find at the moment.
KrisMarch 13, 2009 at 12:59 pm #27136lainyParticipant
Hi Kid. I know it seems like you are making incorrect and strange decisions but in fact you have done so well! Sometimes you just have to go with your gut decision. With the way you have handled everything and with your heart just breaking, I have known no one who could have done better. You have been amazing…March 13, 2009 at 4:57 am #27135
Thanks everyone for chiming in. I did meet with the the Hospice nurse today, and she said if we really want the procedure, the Hospice Dr. will write an order. However, we have to drive down to the hospital in Chicago, which is no big deal- 20 minutes from where we live, but if the surgeon approves the procedure, my dad has to stay over night. We were trying to avoid anymore hospital stays. It would be next Tuesday, so we have a bit of time to discuss, and make a decision. It will probably depend how the weekend goes. Yesterday was a good day, my dad was alert and up most of the day, even came downstairs for dinner and had some soup, but today he didnt get out of bed, and slept most of the day. I still believe if the procedure can give him a week or 10 days of relief, it will be worth it, but if the fluid comes back immediately and more, and we have to come back, it will be a nightmare. I guess we wouldn’t know until we do the procedure what the outcome will be. My mom looks to me for the guidence, and it is sometimes really tough to be the one making these decisions……
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