radical nephrectomy of the left kidney 11-18-2011

macojako

My wife had a radical nephrectomy of the left kidney and a blood clot removed from her vena cava 3 1/2 months ago. The clot was just about up to her liver (hepatic vein). It is stage t3b clear cell rcc with no lymph node and ivc wall invasion. We were very lucky we found it in time (accidently..she developed a cough and was tired while walkingand also was anemic) My question is I have been giving her 40 mil blood thinner shots daily for 3 months and we are about to stop them soon. She will be taking a baby aspirin. We are nervous about what will happen. Clotting ? Has anyone gone through this. We have gone through all the emotions and ups and downs since this has happened. It has been very stressful to say the least, but we lean on each other. Before this happened we had booked a vacation and we are not going to let this stop us. She had some post liver problems..counts not right, but that finally cleared up. She has a great attitude and has been a trooper thoughout this whole time. She is walking up to 3 miles a day which is great but after 30 years together I can tell she is very nervous about stopping the shots. It had been very hard getting answers about this type of surgery (vena cava involvement) and finding people that are going through the same thing. Any comment would be appreciated. Keep up the fight everyone and thanks for posting it's a a great help to all of us going through this.
Jack

icemantoo

Wecome
Jack,

Your wife's story is similar to many on this board where the RCC was discovered incidental to other problems. Sounds like the other problems may have been a life savor in disguise as RCC unchecked is serious stuff. As for the blood clot and recovery I am going to have to difer to the Cardiologists among us. All I know is that I have been taking baby aspirin daily for years and it keeps my doctors happy with me.

Best wishes,

Icemantoo

Texas_wedge

Blood clots
I haven't had directly relevant experience and I'm no kind of medical expert but I have a couple of thoughts that might be helpful.

What kind of response here would help? Someone just saying 'I had a vena cava blood clot and I'm fine now' or 'I've heard of someone who stopped their thinners and it was a disaster' wouldn't be much use to you - you'd probably want more detail. So it might be helpful to members here who know more about this than I do if you could give more detail.

Presumably you were giving the thinner shots on medical advice and have been told by the same adviser(s) that it's no longer necessary and you've been given reasons why. I doubt whether it would be necessary or even advisable for your Wife to be on thinners indefinitely. If so, then easing off via the thinning effect given by small aspirin doses sounds like good sense. I hope the thinking behind it has been explained to you. If not, don't be shy to ask for it.

Have you been given a safety net of advice on what to look out for and what to do if anything should seem to be going wrong? My layman's guess is that if you've been given a convincing explanation you should go ahead and not worry (but be ready to follow advice on what to do should anything seem to be a cause for concern).

With luck you'll get advice here from more knowledgable forum members that will enable you to go off on holiday with no worries.

macojako

Texas_wedge said:

Blood clots
I haven't had directly relevant experience and I'm no kind of medical expert but I have a couple of thoughts that might be helpful.

What kind of response here would help? Someone just saying 'I had a vena cava blood clot and I'm fine now' or 'I've heard of someone who stopped their thinners and it was a disaster' wouldn't be much use to you - you'd probably want more detail. So it might be helpful to members here who know more about this than I do if you could give more detail.

Presumably you were giving the thinner shots on medical advice and have been told by the same adviser(s) that it's no longer necessary and you've been given reasons why. I doubt whether it would be necessary or even advisable for your Wife to be on thinners indefinitely. If so, then easing off via the thinning effect given by small aspirin doses sounds like good sense. I hope the thinking behind it has been explained to you. If not, don't be shy to ask for it.

Have you been given a safety net of advice on what to look out for and what to do if anything should seem to be going wrong? My layman's guess is that if you've been given a convincing explanation you should go ahead and not worry (but be ready to follow advice on what to do should anything seem to be a cause for concern).

With luck you'll get advice here from more knowledgable forum members that will enable you to go off on holiday with no worries.

blood clots
Thanks for the reply. We see the oncologist next week and I will ask the many questions that we have. As you said...what to look for..what to do....etc ect. We are going for 7 weeks and I am checking out local hospitals and emergency services in the area incase of emergency. I really think I posted on this site just to see if I could contact someone that has gone through the same type of precedure (vena cava thrombosis) so I could ask questions. During this whole thing there is not alot of poeple that I could ask questions other than the doctors. They are great but you time with them is limited.
I want to thank you both again....it is very comforting to be able to air my concerns about my wife and be a better advocate for her. I wish you both the best and thanks again.
Jack

foxhd

macojako said:

blood clots
Thanks for the reply. We see the oncologist next week and I will ask the many questions that we have. As you said...what to look for..what to do....etc ect. We are going for 7 weeks and I am checking out local hospitals and emergency services in the area incase of emergency. I really think I posted on this site just to see if I could contact someone that has gone through the same type of precedure (vena cava thrombosis) so I could ask questions. During this whole thing there is not alot of poeple that I could ask questions other than the doctors. They are great but you time with them is limited.
I want to thank you both again....it is very comforting to be able to air my concerns about my wife and be a better advocate for her. I wish you both the best and thanks again.
Jack

thrombosis
My diagnosis was part of a rapid developing problem. I started with tremendous pain that brought me to the ER. My tumor was diagnosed. Pain meds given and I went home. However, the pain intensified to the point that I did think I would die if I stayed home. I was admitted with diagnosis of Renal Vein thrombosis. I do not think that any anti coagulant would have helped at that point.