anyone dealig with kidney problems?
Yes me again.....anyone hear suffering from kidney problems? I am amazed at the laxidazicle care I'm receiving here. I've been feeling absolutely like I'm deaths door, seriously and so freaken scared out of my mind. I've already had stints in place on each side of my kidneys. Remember? The urologist told me I would most likely die of kidney failure
I was putting off googling the symptoms of kidney failure and I fit the bill perfectly. Throwing up, no appitite, so tired and sleeping all the time, and itchy like crazy, cold all the time, what else? .......I'm so much swollen that I can tell, but then again I'm almost skin and bones so it would be hard to tell. Forunately I have an appointment tomorrow with the oncologist and will as him what my blood level for my kidney's, but they are suppose to check for this. I even had a urologist to make sure the stints were still in place after that damn camara again they were. Now that's what's got me going, they are in place so what is the problem now. I'm so scared to even find out. But do any of you ladies have problems with your kidney's giving you a hard time? Please let me know. Now I'm freaking out, again. The urologist told me that I wouldn't qualify for dialysis because I've been through chemo. They made a big mistake in that movie "my sister's keeper" when she was on dialysis and chemo at the same time, apparently that is not possible. HELP!! Love to all!!
Linda
Comments
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yes, my whole week has been kidney issues
OK, Mom has been in the hospital due to poor kidney function for past week. We thought she was having kidney failure also, but have learned that there are 2 main functions of kidneys. #1. to filter toxins. When the kidneys don't do that, that's failure. Mom does not have that. BUT function #2. to balance magnesium, sodium and potassium. Cisplatin (I don't know what you're on) affects the kidneys and the little receptors in her kidneys were not doing that job. Hence she felt terrible. We finally had a renal guy down yesterday and voila she's feeling better today. BUT she is on major major pills. Kidneys are complex. My suggestion: take a general chemistry panel and look at the sodium, potassium and magnesium. The sodium doesn't have to be off by a lot to make you feel crappy as hell. When they're all of as on the case of my mother, it is very bad. But this is not kidney failure. This will come back. It may be that you have same issue. All the symptoms you describe are same as my mothers. Also, ask for a renal specialist if need be. But try this first. It makes a huge difference. Don't freak out about failure...I think it would be way worse, but do follow up. It's very important. Hope this helps.0 -
Hello Linda, I can sympathize with you totally. I had breast cancer in 2001 that metasticized to my peritoneum in 2008. Had stents put in both kidney ureters which have to be changed every 4 or 5 months. Next change is in April 2010. They say I have to stay on them permanently because the ureters get scarred and thickened and would not stay open without the stents. You sound a lot worse off than I am, but I too have had nothing but pain and discomfort and one UTI after another since I got them in. CT scans every 3 mos.say that the stents are in place, but I always feel as if they have moved or dropped. I feel bloated no matter how little I eat and, right now, I feel miserable. I have an appointment with my oncologist next Monday, and I am going to tell him that it is getting more difficult for me to function. I do think I am due for another CT scan to see what's going on in my abdomen. You frighten me when you say that you can't go on dialysis for kidney failure if you have had chemo. I don't want to go on dialysis, but if that's how you stay alive I would. I don't have the other symptoms that you have, the throwing up, itching, sleepy all the time, etc., but I know I feel awfully swollen. Linda mentions that her mom is going to see a kidney doctor; do you think that might be the way to go? I'm going to ask my oncologist on Monday about that. The urological surgeon that I go to seems to just deal with one's ability to urinate; maybe I'm wrong on that, but I feel that he is just a mechanic that inserts or removes kidney stents but doesn't deal with renal problems. Please know that I am so sorry that you are going through all this and can completely understand your fears and worries. Let me know how your oncologist visit came out and, after I have had mine, I will tell you what the outcome of mine is. Take care, and don't give up!
Carolyn0 -
OMG!!!!billsgal said:Hello Linda, I can sympathize with you totally. I had breast cancer in 2001 that metasticized to my peritoneum in 2008. Had stents put in both kidney ureters which have to be changed every 4 or 5 months. Next change is in April 2010. They say I have to stay on them permanently because the ureters get scarred and thickened and would not stay open without the stents. You sound a lot worse off than I am, but I too have had nothing but pain and discomfort and one UTI after another since I got them in. CT scans every 3 mos.say that the stents are in place, but I always feel as if they have moved or dropped. I feel bloated no matter how little I eat and, right now, I feel miserable. I have an appointment with my oncologist next Monday, and I am going to tell him that it is getting more difficult for me to function. I do think I am due for another CT scan to see what's going on in my abdomen. You frighten me when you say that you can't go on dialysis for kidney failure if you have had chemo. I don't want to go on dialysis, but if that's how you stay alive I would. I don't have the other symptoms that you have, the throwing up, itching, sleepy all the time, etc., but I know I feel awfully swollen. Linda mentions that her mom is going to see a kidney doctor; do you think that might be the way to go? I'm going to ask my oncologist on Monday about that. The urological surgeon that I go to seems to just deal with one's ability to urinate; maybe I'm wrong on that, but I feel that he is just a mechanic that inserts or removes kidney stents but doesn't deal with renal problems. Please know that I am so sorry that you are going through all this and can completely understand your fears and worries. Let me know how your oncologist visit came out and, after I have had mine, I will tell you what the outcome of mine is. Take care, and don't give up!
Carolyn
Carolyn
I didn't read your message totally, only enough to get the jist. Amazing how just one freaken day can change your whole freaken life! I will write more tomorrow hopefully I'll be out of the hospital by then. YES I'm in the hospital my kidney's apparently stopped working. Or should I say that those freaken shunts that I"ve been complaining to you ladies about all this time failed to work! All these sympoms, naturally were caused by this. After my blood work that I insisted that they draw and examine before they proceed with my clinical trial chemo yesterday, they finally agreed and told me to get the blood drand and go home and wait for me to call them for the results and we'd proceed from there.
As soon as I got home my phone rang with a panic voice on the other end tell me to rush to the emergeny room ASAP. The levels were up, how much I asked........1195.............1000 I'm suppose to be dead. Anyway the proceedure was done this morning and I'm still to see the oncologist to tell me thier findings. Did the shunts get blocked? Which I pray it's nothing beyond that and they can put back another pair of shunts and I'm not stuck with these huge f'n heafty bags strapped to each leg. Actually I really don't care if I have to wear these things for years and years and long as it does the trick. I'm so freaken scared to get thei news tomorrow morning girls.
This hospital though, if you have to stay at one, it's beautiful, with this computer room and a absolute amazing common lounge with a huge flat screen with bay windows that over looks the city and beings I'm on the 17th floor it is quite a view. But right now I wouldn't care less if tom cruise was downt he hall I want to go home to my daughter. Please say a prayer for me Ladies and now I'm going to go the nurses station and get my pain meds and something to knock me out for the night so that tomorrow will hurry up and come and I get this news over with. Love you guys and I'll write tomorrow with good news I pray!!!!
Linda0 -
OMG!!! is right! What a shock it was to read this! So unexpected. I know they did say that the stents can become clogged and blocked, though. That's why they should be changed every 3 or 4 months or so. Now you've got me nervous. But, thank God, they did that blood work and had you go to the emergency room right away! I know I've been told that if I have a problem urinating, get to the hospital right away, day or night. I did have that problem early on just once and had to be catheterized. It was early enough so that no harm was done. Please get all the care and attention that you need so that you will be feeling better. It sure is a pain having these stents, but what choice do we have? I'll be thinking about you and wishing you all the best as you recuperate.dorion said:OMG!!!!
Carolyn
I didn't read your message totally, only enough to get the jist. Amazing how just one freaken day can change your whole freaken life! I will write more tomorrow hopefully I'll be out of the hospital by then. YES I'm in the hospital my kidney's apparently stopped working. Or should I say that those freaken shunts that I"ve been complaining to you ladies about all this time failed to work! All these sympoms, naturally were caused by this. After my blood work that I insisted that they draw and examine before they proceed with my clinical trial chemo yesterday, they finally agreed and told me to get the blood drand and go home and wait for me to call them for the results and we'd proceed from there.
As soon as I got home my phone rang with a panic voice on the other end tell me to rush to the emergeny room ASAP. The levels were up, how much I asked........1195.............1000 I'm suppose to be dead. Anyway the proceedure was done this morning and I'm still to see the oncologist to tell me thier findings. Did the shunts get blocked? Which I pray it's nothing beyond that and they can put back another pair of shunts and I'm not stuck with these huge f'n heafty bags strapped to each leg. Actually I really don't care if I have to wear these things for years and years and long as it does the trick. I'm so freaken scared to get thei news tomorrow morning girls.
This hospital though, if you have to stay at one, it's beautiful, with this computer room and a absolute amazing common lounge with a huge flat screen with bay windows that over looks the city and beings I'm on the 17th floor it is quite a view. But right now I wouldn't care less if tom cruise was downt he hall I want to go home to my daughter. Please say a prayer for me Ladies and now I'm going to go the nurses station and get my pain meds and something to knock me out for the night so that tomorrow will hurry up and come and I get this news over with. Love you guys and I'll write tomorrow with good news I pray!!!!
Linda
Carolyn0 -
happiness is.....billsgal said:OMG!!! is right! What a shock it was to read this! So unexpected. I know they did say that the stents can become clogged and blocked, though. That's why they should be changed every 3 or 4 months or so. Now you've got me nervous. But, thank God, they did that blood work and had you go to the emergency room right away! I know I've been told that if I have a problem urinating, get to the hospital right away, day or night. I did have that problem early on just once and had to be catheterized. It was early enough so that no harm was done. Please get all the care and attention that you need so that you will be feeling better. It sure is a pain having these stents, but what choice do we have? I'll be thinking about you and wishing you all the best as you recuperate.
Carolyn
Hi Carolyn
I'm in shock too. And it's a good thing they relented and LISTENED TO ME! No thanks to them I'm here let me tell you. I've had trouble with these from day one and no one listened to me. Don't be nervous Carolyn, you'll be ok. What makes me shake my head is that I was just at the nerologist Tuesday before last and they stuck a camara up there to see if everything was ok. Well he showed me the tube and where it went into the kidney and said "see? there's the tube going into your kidney and right there is a little bit of calsium buildup, but nothing to worry about, just drink plenty of water and you should be good to go for the next 3 months". (these ones apparently are suppose to last for up to a year) My reply to him was and this is word for word "but how do you know it's not clogged on the other side?" All I see it the tube going into the kidney, but I"m not seeing the hole on the other side". He says "nothing to worry about".
Following that appointment, same day I had to go to my oncologist for the ct follow up and that's when they told me the progression and options for treatment and would see me the following Tuesday for chemo. It was when I got here and my fist appointment was with my pain management guy, he's the "doctor feel good". I sat there telling him of all these symptoms and he said to me "well maybe because your are dehydrated, you need to drink more water". I'm thinking to myself "is this guy stupid or what?" I kept my cool and said to him "well I'm dehydrated cos I'm constantly throwing up and I'm throwing up because I know it's my kidney's, so what came first? The chicken or the egg" I said to him. I then asked him to look at my chart and see if he had my blood work from the previous visit(8th). He did, so I asked him what did it read regarding those numbers for my kidney's. I swear this is how it went down. He looks at the chart and looked at them and them looked up at me and said "no it looks like you're doing really good from what I see" I asked "well what do you see? What is the number?" His reply "oh it's only 224" I thought my hearing was off and so I asked again, cos surely I must have heard wrong because when I firt had these shunts (installed....lol) the concern THEN was that number was 217 and the urologist then said "it's a good thing you came in when you did because with this number you would have been dead in a month" So I asked the urologist then what's the cut off number, you know, how high til you's a gonner. He told me 1000. Fastforward....
So again dr. feelgood repeats the number again....."224".....I sat up (was laying down at the time) so fast in absolute f'n shock and tried not to yell at him asking him "how the hell can you say I'm doing great when this number is higher than it was when I first had this done, then (I swear to God) he says "maybe your not drinking enough water" (AGAIN) back to the dehydration thing again......I'm trying not to lose it so he asks me to step into the hallway so he can see if my face was yellow, look it I can't make this up and I know I'm actually starting to laugh just reading what I'm typing, it's funny as hell!
At this time, I realized I'm not dealing with a guy with a full deck of cards so I just got my perscriptions for my happy pills and went downstairs for the oncologists appointment and what was to be my appointment with the clinical trails nurse and get me ready for chemo.
The oncologist walks in and I told her that I wasn't going through any;thing til they check my blood for my kidneys. She agreed and that's when they told me to go home and they would call me with the results and we would take it from there as to how we'll proceed with the treatments. You can only imagine the terror I felt when as soon as I walked in my door the phone rang to hear her on the other end with a paniced tone telling me "LINDA" I siad "NAZ?"
"I want you to listen to me Linda, we just got the results in and your numbers have risen". I siad "I knew it, I knew it!!! How high did it go up Naz?" "It's high" she says "it's 1195". At that moment the room started to spin and I thought I was going to pass out! 1195!!!! What the F? 1000 I'm suppose to be dead, how could this be? Anyway, that's when she told me to stay calm and get myself to the Toronto General Emergency department ASAP they were expecting me.
So Carolyn it's really is thanks to me and to God for giving me the strength and conviction to stand up to these guys who think they know more than we do.
This morning I woke up 6:45 absolutely drenched cos the "heafty's" weren just a over flowen, but that's ok, I thought. I got changed into nice dry "johnny's" after I had to empty my big beautiful bags! LOL LOL and I went downstairs to buy myself a coffee, went out into the freezing cold, dragging my iv pole and I took a big breath in and I realized how freaken happy I felt at that moment. Happiness is waking up not feeling like I've been run over by a big mac truck, actually just waking was enough to make me happy. Happiness is not having that horrible taste in my mouth. Bring on them "heavty's" cos these bad boys saved my life! If I have to wear these for the rest of my life well then bring it on! As long as I'm still alive and I can walk and talk and still do my thing....I'm ok! So right now I think I'm ready to hear what they have to say to me this morning. I'll let you know when I get the verdict.
So don't be nervous Carolyn til the fat lady sings and I'm not even humming!!!!0 -
what a storydorion said:happiness is.....
Hi Carolyn
I'm in shock too. And it's a good thing they relented and LISTENED TO ME! No thanks to them I'm here let me tell you. I've had trouble with these from day one and no one listened to me. Don't be nervous Carolyn, you'll be ok. What makes me shake my head is that I was just at the nerologist Tuesday before last and they stuck a camara up there to see if everything was ok. Well he showed me the tube and where it went into the kidney and said "see? there's the tube going into your kidney and right there is a little bit of calsium buildup, but nothing to worry about, just drink plenty of water and you should be good to go for the next 3 months". (these ones apparently are suppose to last for up to a year) My reply to him was and this is word for word "but how do you know it's not clogged on the other side?" All I see it the tube going into the kidney, but I"m not seeing the hole on the other side". He says "nothing to worry about".
Following that appointment, same day I had to go to my oncologist for the ct follow up and that's when they told me the progression and options for treatment and would see me the following Tuesday for chemo. It was when I got here and my fist appointment was with my pain management guy, he's the "doctor feel good". I sat there telling him of all these symptoms and he said to me "well maybe because your are dehydrated, you need to drink more water". I'm thinking to myself "is this guy stupid or what?" I kept my cool and said to him "well I'm dehydrated cos I'm constantly throwing up and I'm throwing up because I know it's my kidney's, so what came first? The chicken or the egg" I said to him. I then asked him to look at my chart and see if he had my blood work from the previous visit(8th). He did, so I asked him what did it read regarding those numbers for my kidney's. I swear this is how it went down. He looks at the chart and looked at them and them looked up at me and said "no it looks like you're doing really good from what I see" I asked "well what do you see? What is the number?" His reply "oh it's only 224" I thought my hearing was off and so I asked again, cos surely I must have heard wrong because when I firt had these shunts (installed....lol) the concern THEN was that number was 217 and the urologist then said "it's a good thing you came in when you did because with this number you would have been dead in a month" So I asked the urologist then what's the cut off number, you know, how high til you's a gonner. He told me 1000. Fastforward....
So again dr. feelgood repeats the number again....."224".....I sat up (was laying down at the time) so fast in absolute f'n shock and tried not to yell at him asking him "how the hell can you say I'm doing great when this number is higher than it was when I first had this done, then (I swear to God) he says "maybe your not drinking enough water" (AGAIN) back to the dehydration thing again......I'm trying not to lose it so he asks me to step into the hallway so he can see if my face was yellow, look it I can't make this up and I know I'm actually starting to laugh just reading what I'm typing, it's funny as hell!
At this time, I realized I'm not dealing with a guy with a full deck of cards so I just got my perscriptions for my happy pills and went downstairs for the oncologists appointment and what was to be my appointment with the clinical trails nurse and get me ready for chemo.
The oncologist walks in and I told her that I wasn't going through any;thing til they check my blood for my kidneys. She agreed and that's when they told me to go home and they would call me with the results and we would take it from there as to how we'll proceed with the treatments. You can only imagine the terror I felt when as soon as I walked in my door the phone rang to hear her on the other end with a paniced tone telling me "LINDA" I siad "NAZ?"
"I want you to listen to me Linda, we just got the results in and your numbers have risen". I siad "I knew it, I knew it!!! How high did it go up Naz?" "It's high" she says "it's 1195". At that moment the room started to spin and I thought I was going to pass out! 1195!!!! What the F? 1000 I'm suppose to be dead, how could this be? Anyway, that's when she told me to stay calm and get myself to the Toronto General Emergency department ASAP they were expecting me.
So Carolyn it's really is thanks to me and to God for giving me the strength and conviction to stand up to these guys who think they know more than we do.
This morning I woke up 6:45 absolutely drenched cos the "heafty's" weren just a over flowen, but that's ok, I thought. I got changed into nice dry "johnny's" after I had to empty my big beautiful bags! LOL LOL and I went downstairs to buy myself a coffee, went out into the freezing cold, dragging my iv pole and I took a big breath in and I realized how freaken happy I felt at that moment. Happiness is waking up not feeling like I've been run over by a big mac truck, actually just waking was enough to make me happy. Happiness is not having that horrible taste in my mouth. Bring on them "heavty's" cos these bad boys saved my life! If I have to wear these for the rest of my life well then bring it on! As long as I'm still alive and I can walk and talk and still do my thing....I'm ok! So right now I think I'm ready to hear what they have to say to me this morning. I'll let you know when I get the verdict.
So don't be nervous Carolyn til the fat lady sings and I'm not even humming!!!!
That is some story. How is your daughter doing with all of this?0 -
I am shockeddorion said:happiness is.....
Hi Carolyn
I'm in shock too. And it's a good thing they relented and LISTENED TO ME! No thanks to them I'm here let me tell you. I've had trouble with these from day one and no one listened to me. Don't be nervous Carolyn, you'll be ok. What makes me shake my head is that I was just at the nerologist Tuesday before last and they stuck a camara up there to see if everything was ok. Well he showed me the tube and where it went into the kidney and said "see? there's the tube going into your kidney and right there is a little bit of calsium buildup, but nothing to worry about, just drink plenty of water and you should be good to go for the next 3 months". (these ones apparently are suppose to last for up to a year) My reply to him was and this is word for word "but how do you know it's not clogged on the other side?" All I see it the tube going into the kidney, but I"m not seeing the hole on the other side". He says "nothing to worry about".
Following that appointment, same day I had to go to my oncologist for the ct follow up and that's when they told me the progression and options for treatment and would see me the following Tuesday for chemo. It was when I got here and my fist appointment was with my pain management guy, he's the "doctor feel good". I sat there telling him of all these symptoms and he said to me "well maybe because your are dehydrated, you need to drink more water". I'm thinking to myself "is this guy stupid or what?" I kept my cool and said to him "well I'm dehydrated cos I'm constantly throwing up and I'm throwing up because I know it's my kidney's, so what came first? The chicken or the egg" I said to him. I then asked him to look at my chart and see if he had my blood work from the previous visit(8th). He did, so I asked him what did it read regarding those numbers for my kidney's. I swear this is how it went down. He looks at the chart and looked at them and them looked up at me and said "no it looks like you're doing really good from what I see" I asked "well what do you see? What is the number?" His reply "oh it's only 224" I thought my hearing was off and so I asked again, cos surely I must have heard wrong because when I firt had these shunts (installed....lol) the concern THEN was that number was 217 and the urologist then said "it's a good thing you came in when you did because with this number you would have been dead in a month" So I asked the urologist then what's the cut off number, you know, how high til you's a gonner. He told me 1000. Fastforward....
So again dr. feelgood repeats the number again....."224".....I sat up (was laying down at the time) so fast in absolute f'n shock and tried not to yell at him asking him "how the hell can you say I'm doing great when this number is higher than it was when I first had this done, then (I swear to God) he says "maybe your not drinking enough water" (AGAIN) back to the dehydration thing again......I'm trying not to lose it so he asks me to step into the hallway so he can see if my face was yellow, look it I can't make this up and I know I'm actually starting to laugh just reading what I'm typing, it's funny as hell!
At this time, I realized I'm not dealing with a guy with a full deck of cards so I just got my perscriptions for my happy pills and went downstairs for the oncologists appointment and what was to be my appointment with the clinical trails nurse and get me ready for chemo.
The oncologist walks in and I told her that I wasn't going through any;thing til they check my blood for my kidneys. She agreed and that's when they told me to go home and they would call me with the results and we would take it from there as to how we'll proceed with the treatments. You can only imagine the terror I felt when as soon as I walked in my door the phone rang to hear her on the other end with a paniced tone telling me "LINDA" I siad "NAZ?"
"I want you to listen to me Linda, we just got the results in and your numbers have risen". I siad "I knew it, I knew it!!! How high did it go up Naz?" "It's high" she says "it's 1195". At that moment the room started to spin and I thought I was going to pass out! 1195!!!! What the F? 1000 I'm suppose to be dead, how could this be? Anyway, that's when she told me to stay calm and get myself to the Toronto General Emergency department ASAP they were expecting me.
So Carolyn it's really is thanks to me and to God for giving me the strength and conviction to stand up to these guys who think they know more than we do.
This morning I woke up 6:45 absolutely drenched cos the "heafty's" weren just a over flowen, but that's ok, I thought. I got changed into nice dry "johnny's" after I had to empty my big beautiful bags! LOL LOL and I went downstairs to buy myself a coffee, went out into the freezing cold, dragging my iv pole and I took a big breath in and I realized how freaken happy I felt at that moment. Happiness is waking up not feeling like I've been run over by a big mac truck, actually just waking was enough to make me happy. Happiness is not having that horrible taste in my mouth. Bring on them "heavty's" cos these bad boys saved my life! If I have to wear these for the rest of my life well then bring it on! As long as I'm still alive and I can walk and talk and still do my thing....I'm ok! So right now I think I'm ready to hear what they have to say to me this morning. I'll let you know when I get the verdict.
So don't be nervous Carolyn til the fat lady sings and I'm not even humming!!!!
Damn! That is the only word that fits to your treatment. Just shows that we have to be pushy at times.
And we in the US are fixin' to be under the same or a worse system. We on medicare are going to have about $500 billion less paid for. We will be lucky to get a CT scan at all. And forget the expensive chemos. Take two aspirin and go to bed may be Seniors fate. Well, anyway I am relieved that you finally got someone to listen. Are you going back to the kidney doctor or can you change to one that is not so dumb? Glad you are feeling better and working better. Merry Christmas!!!! Saundra0 -
Happiness Is...dorion said:happiness is.....
Hi Carolyn
I'm in shock too. And it's a good thing they relented and LISTENED TO ME! No thanks to them I'm here let me tell you. I've had trouble with these from day one and no one listened to me. Don't be nervous Carolyn, you'll be ok. What makes me shake my head is that I was just at the nerologist Tuesday before last and they stuck a camara up there to see if everything was ok. Well he showed me the tube and where it went into the kidney and said "see? there's the tube going into your kidney and right there is a little bit of calsium buildup, but nothing to worry about, just drink plenty of water and you should be good to go for the next 3 months". (these ones apparently are suppose to last for up to a year) My reply to him was and this is word for word "but how do you know it's not clogged on the other side?" All I see it the tube going into the kidney, but I"m not seeing the hole on the other side". He says "nothing to worry about".
Following that appointment, same day I had to go to my oncologist for the ct follow up and that's when they told me the progression and options for treatment and would see me the following Tuesday for chemo. It was when I got here and my fist appointment was with my pain management guy, he's the "doctor feel good". I sat there telling him of all these symptoms and he said to me "well maybe because your are dehydrated, you need to drink more water". I'm thinking to myself "is this guy stupid or what?" I kept my cool and said to him "well I'm dehydrated cos I'm constantly throwing up and I'm throwing up because I know it's my kidney's, so what came first? The chicken or the egg" I said to him. I then asked him to look at my chart and see if he had my blood work from the previous visit(8th). He did, so I asked him what did it read regarding those numbers for my kidney's. I swear this is how it went down. He looks at the chart and looked at them and them looked up at me and said "no it looks like you're doing really good from what I see" I asked "well what do you see? What is the number?" His reply "oh it's only 224" I thought my hearing was off and so I asked again, cos surely I must have heard wrong because when I firt had these shunts (installed....lol) the concern THEN was that number was 217 and the urologist then said "it's a good thing you came in when you did because with this number you would have been dead in a month" So I asked the urologist then what's the cut off number, you know, how high til you's a gonner. He told me 1000. Fastforward....
So again dr. feelgood repeats the number again....."224".....I sat up (was laying down at the time) so fast in absolute f'n shock and tried not to yell at him asking him "how the hell can you say I'm doing great when this number is higher than it was when I first had this done, then (I swear to God) he says "maybe your not drinking enough water" (AGAIN) back to the dehydration thing again......I'm trying not to lose it so he asks me to step into the hallway so he can see if my face was yellow, look it I can't make this up and I know I'm actually starting to laugh just reading what I'm typing, it's funny as hell!
At this time, I realized I'm not dealing with a guy with a full deck of cards so I just got my perscriptions for my happy pills and went downstairs for the oncologists appointment and what was to be my appointment with the clinical trails nurse and get me ready for chemo.
The oncologist walks in and I told her that I wasn't going through any;thing til they check my blood for my kidneys. She agreed and that's when they told me to go home and they would call me with the results and we would take it from there as to how we'll proceed with the treatments. You can only imagine the terror I felt when as soon as I walked in my door the phone rang to hear her on the other end with a paniced tone telling me "LINDA" I siad "NAZ?"
"I want you to listen to me Linda, we just got the results in and your numbers have risen". I siad "I knew it, I knew it!!! How high did it go up Naz?" "It's high" she says "it's 1195". At that moment the room started to spin and I thought I was going to pass out! 1195!!!! What the F? 1000 I'm suppose to be dead, how could this be? Anyway, that's when she told me to stay calm and get myself to the Toronto General Emergency department ASAP they were expecting me.
So Carolyn it's really is thanks to me and to God for giving me the strength and conviction to stand up to these guys who think they know more than we do.
This morning I woke up 6:45 absolutely drenched cos the "heafty's" weren just a over flowen, but that's ok, I thought. I got changed into nice dry "johnny's" after I had to empty my big beautiful bags! LOL LOL and I went downstairs to buy myself a coffee, went out into the freezing cold, dragging my iv pole and I took a big breath in and I realized how freaken happy I felt at that moment. Happiness is waking up not feeling like I've been run over by a big mac truck, actually just waking was enough to make me happy. Happiness is not having that horrible taste in my mouth. Bring on them "heavty's" cos these bad boys saved my life! If I have to wear these for the rest of my life well then bring it on! As long as I'm still alive and I can walk and talk and still do my thing....I'm ok! So right now I think I'm ready to hear what they have to say to me this morning. I'll let you know when I get the verdict.
So don't be nervous Carolyn til the fat lady sings and I'm not even humming!!!!
How are you doing, Linda? I'm so glad that something is being done to help you. My god, how have you been able to stand what you have been through! Please get rid of that doctor, who treated the whole thing so casually, as if you were a hypochondriac or something. Someone like that should get a good case of something so that they can find out what it's like to go through the suffering that some of us have to go through. Thank God I haven't been treated like that with any of my doctors, so far anyway. My urologist is not the most "people-friendly" person in the world. He has no "bedside manner" or personality at all, but does offer me the help I need when I need it. What will they do for you now so that you won't have to go through this again? I hope they have a good plan of action to give you back some good quality of life. At this time of year, especially, you want to be able to get a little holiday spirit and feel up to participating in some activities of the season. Easy for me to say! Right now, I feel lousy and want to try to see my PCP some time today. Tried to do a little Christmas shopping yesterday, but lasted only a half an hour. May we all feel better soon, and may 2010 bring all kinds of miracle-cures our way! Take care!
Carolyn0 -
happiness?billsgal said:Happiness Is...
How are you doing, Linda? I'm so glad that something is being done to help you. My god, how have you been able to stand what you have been through! Please get rid of that doctor, who treated the whole thing so casually, as if you were a hypochondriac or something. Someone like that should get a good case of something so that they can find out what it's like to go through the suffering that some of us have to go through. Thank God I haven't been treated like that with any of my doctors, so far anyway. My urologist is not the most "people-friendly" person in the world. He has no "bedside manner" or personality at all, but does offer me the help I need when I need it. What will they do for you now so that you won't have to go through this again? I hope they have a good plan of action to give you back some good quality of life. At this time of year, especially, you want to be able to get a little holiday spirit and feel up to participating in some activities of the season. Easy for me to say! Right now, I feel lousy and want to try to see my PCP some time today. Tried to do a little Christmas shopping yesterday, but lasted only a half an hour. May we all feel better soon, and may 2010 bring all kinds of miracle-cures our way! Take care!
Carolyn
What a roller coaster, Thursday this doctor that walks the ward try to give me good news that the "K" levels are dropping which is great but then he takes all the hope I had away by telling me that things will never be the same as they were before. But I realized that he's just miserable **** who probably failed oncology class and got relugated to being the monkey in the middle and is bitter and so he takes it out on the patients. I am doing better the levels are now down from 1200 to 327,priase God!!!!!! But now my blood preasure is going up. But I'm going to conintue to fight and get the heck out of here. A crappy time to be here with things to do for Meghan. I remember Monday, I dragged myself out feeling so so damn ill and so tired and I managed to do most of her shopping, all I have to do now is try to get this cage for her bunny I bought her who is still sitting in the pet shop and boy is she gonna be upset when she goes to see if he's still there and see "sold" on him. she has no clue...lol......I'll pull it off. I do every single year. Now I'm trying to teach her Dad the art of pulling it off for when I'm not able to. I always want my Baby to have the Christmas's I've been able to provide for her, always. I'm praying that I'll be out of her next week hopefully no later than Wednesday so I can finish up the things I need to do.
Thank God I managed to decorate my tree when I had that small window of opportunity Monday morning. Anyway ladies please continue sending out prayers for me and I'll do the same for you guys. I love you all and I'm gonna stay strong for all of us.
Linda0 -
It Sure Is A Roller Coaster!dorion said:happiness?
What a roller coaster, Thursday this doctor that walks the ward try to give me good news that the "K" levels are dropping which is great but then he takes all the hope I had away by telling me that things will never be the same as they were before. But I realized that he's just miserable **** who probably failed oncology class and got relugated to being the monkey in the middle and is bitter and so he takes it out on the patients. I am doing better the levels are now down from 1200 to 327,priase God!!!!!! But now my blood preasure is going up. But I'm going to conintue to fight and get the heck out of here. A crappy time to be here with things to do for Meghan. I remember Monday, I dragged myself out feeling so so damn ill and so tired and I managed to do most of her shopping, all I have to do now is try to get this cage for her bunny I bought her who is still sitting in the pet shop and boy is she gonna be upset when she goes to see if he's still there and see "sold" on him. she has no clue...lol......I'll pull it off. I do every single year. Now I'm trying to teach her Dad the art of pulling it off for when I'm not able to. I always want my Baby to have the Christmas's I've been able to provide for her, always. I'm praying that I'll be out of her next week hopefully no later than Wednesday so I can finish up the things I need to do.
Thank God I managed to decorate my tree when I had that small window of opportunity Monday morning. Anyway ladies please continue sending out prayers for me and I'll do the same for you guys. I love you all and I'm gonna stay strong for all of us.
Linda
Hello Linda, Well it sure sounds like you are having to deal with a lot, and just when you want to feel half decent so that your daughter will have a nice Christmas. Mothers are like that, aren't they? Are they giving you something stronger to lower your blood pressure? I take Atenolol and the diuretic HCTZ (I won't try to spell it out) and that seems to keep mine under control. Glad your "K" levels have gone down; that's a good sign. And, wouldn't you know, I ended up in the hospital last Saturday. I probably told you that I felt very bloated and looked like I was expecting twins and felt like it too, except for the kicking, etc. So I went to the ER. The ascites in my belly was also crowding my kidney ureters, so hardly any urine output, so they catheterized me. They decided to admit me and syphon off some of the fluid, which they did. My oncologist thinks it's the same old, same old, meaning it will show cancer cells like it did the last time. He said a new treatment is in order, since Aromasin isn't working, but wants to put it off until after the holidays. That's fine with me, except that I have done almost no Christmas shopping and don't feel up to continuing doing any more. It'll be checks or gift certificates, so I hope they won't mind. Anyway, to get back to you, I hope you will be feeling much better and that your doctor (Scrooge?) will suddenly become more compassionate and understanding and do better by you. Many good wishes and hopes for a very Merry Christmas to you and your family! We are all in this together and must put up a good fight, because life is sweet and we want to be around our loved ones for as long as possible!
Carolyn0 -
bah freaken humbug!!!billsgal said:It Sure Is A Roller Coaster!
Hello Linda, Well it sure sounds like you are having to deal with a lot, and just when you want to feel half decent so that your daughter will have a nice Christmas. Mothers are like that, aren't they? Are they giving you something stronger to lower your blood pressure? I take Atenolol and the diuretic HCTZ (I won't try to spell it out) and that seems to keep mine under control. Glad your "K" levels have gone down; that's a good sign. And, wouldn't you know, I ended up in the hospital last Saturday. I probably told you that I felt very bloated and looked like I was expecting twins and felt like it too, except for the kicking, etc. So I went to the ER. The ascites in my belly was also crowding my kidney ureters, so hardly any urine output, so they catheterized me. They decided to admit me and syphon off some of the fluid, which they did. My oncologist thinks it's the same old, same old, meaning it will show cancer cells like it did the last time. He said a new treatment is in order, since Aromasin isn't working, but wants to put it off until after the holidays. That's fine with me, except that I have done almost no Christmas shopping and don't feel up to continuing doing any more. It'll be checks or gift certificates, so I hope they won't mind. Anyway, to get back to you, I hope you will be feeling much better and that your doctor (Scrooge?) will suddenly become more compassionate and understanding and do better by you. Many good wishes and hopes for a very Merry Christmas to you and your family! We are all in this together and must put up a good fight, because life is sweet and we want to be around our loved ones for as long as possible!
Carolyn
Hi Carolyn and Ladies
Well I'll be darned!!!! Looks like my work I put into Christmas was for not! I'm not going to be released from the hospital til after Christmas now. Even though the "K" levels have dropped it now looks like not enough oxygen is getting to my kidneys. I was so angry but settled down now, realizing, what can I do? Anyway I'll write more later I'm absolutely falling asleep here. Carolyn? R U still in the hospital?
Love to all and have a wonderful Xmas!!
Linda0 -
sorry to heardorion said:bah freaken humbug!!!
Hi Carolyn and Ladies
Well I'll be darned!!!! Looks like my work I put into Christmas was for not! I'm not going to be released from the hospital til after Christmas now. Even though the "K" levels have dropped it now looks like not enough oxygen is getting to my kidneys. I was so angry but settled down now, realizing, what can I do? Anyway I'll write more later I'm absolutely falling asleep here. Carolyn? R U still in the hospital?
Love to all and have a wonderful Xmas!!
Linda
Well that really, really, REALLY stinks! Sorry to hear your Christmas will be in the hospital. Best wishes to you and your family. Hopefully you can make the best of this lousy situation.
Nancy
XOXO0 -
Bummerdorion said:bah freaken humbug!!!
Hi Carolyn and Ladies
Well I'll be darned!!!! Looks like my work I put into Christmas was for not! I'm not going to be released from the hospital til after Christmas now. Even though the "K" levels have dropped it now looks like not enough oxygen is getting to my kidneys. I was so angry but settled down now, realizing, what can I do? Anyway I'll write more later I'm absolutely falling asleep here. Carolyn? R U still in the hospital?
Love to all and have a wonderful Xmas!!
Linda
Drat it all. Well, just move the date to when you get out. Jesus won't mind and I bet your daughter won't either. Get well blessing sprayed for you. Saundra0 -
when you're updorion said:bah freaken humbug!!!
Hi Carolyn and Ladies
Well I'll be darned!!!! Looks like my work I put into Christmas was for not! I'm not going to be released from the hospital til after Christmas now. Even though the "K" levels have dropped it now looks like not enough oxygen is getting to my kidneys. I was so angry but settled down now, realizing, what can I do? Anyway I'll write more later I'm absolutely falling asleep here. Carolyn? R U still in the hospital?
Love to all and have a wonderful Xmas!!
Linda
Linda, when you're up next and looking around here, I just wanted you to know that there are prayers for you flying out so thick you can reach up and grab em. You already have courage and a resilient spirit and so many other virtues you might think you've used up, but you haven't. There's still plenty of good stuff left, maybe hiding in unlikely places, so I'll be praying that you find all of it. It's a good time for miracles, eh? Any size will do.0 -
Out of Hospital Thank God!dorion said:bah freaken humbug!!!
Hi Carolyn and Ladies
Well I'll be darned!!!! Looks like my work I put into Christmas was for not! I'm not going to be released from the hospital til after Christmas now. Even though the "K" levels have dropped it now looks like not enough oxygen is getting to my kidneys. I was so angry but settled down now, realizing, what can I do? Anyway I'll write more later I'm absolutely falling asleep here. Carolyn? R U still in the hospital?
Love to all and have a wonderful Xmas!!
Linda
Hi Linda, well they let me out yesterday and I was able to get rid of that darned catheter. I was afraid that I might have to take it with me. They said there were about 3 liters of fluid in my belly, but were only able to take out 1 liter. They numbed the area with novacaine and then stuck that long needle in there, then put a catheter in and kept "pumping" my abdomen to get the fluid out. I guess it's not all in one area so they have to kind of pump it into the place where the catheter is. I'm still sore from all that pumping, but glad to be home. My husband is too, because he is so helpless by himself. (He's wonderful, though!) Got the CT scan report and it said that the ascites (fluid) has worsened as well as the cancer "caking and implants". Otherwise, it hasn't affected the organs so far, which is good. As long as it's kept under control like that, that's fine. But, hey, how are you doing? What is this with the "not enough oxygen getting to the kidneys?" Does that mean that there isn't enough oxygen in the blood that goes to the kidneys? I'm so sorry that you were not able to go home. How is your daughter taking it? Kids are pretty adaptable though. I think that she will just be so happy when you do come home that she will forget about all this. How old is she (I probably saw it previously, but with my "chemo brain" I have forgotten.) I hope there are many loved ones attending to her and telling her that mom would like to be with her at home more than anything else in the world. Kids are so wonderful! I can't wait to see my 21 mo. old granddaughter Nora on Friday, but will be thinking about you and what you are going through and wishing the very best for you. Although it really isn't a merry one for you, I still want to wish you Merry Christmas and, please God, a happier and healthier New Year!
Carolyn0
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