Well, my 3 days out of the hospital have been nothing short of busy. I knew that I would be expected to do blood work everyday to keep an eye on those creatinine levels and so I headed to the cancer center on Thursday with my big ol' nephrostomy tubes/bags. I waited an our for the results and it came back that my #s had slipped .1. Dr. Steffens had them give me 2 bags of fluid and I was reminded to drink drink drink.
As I wrote in the last post, there was nothing draining into the left bag, so on Friday morning I called my urologist to speak about it and give my "professional" opinion. He sent me down to interventional radiology (the department that put the tubes in) to have a dye test run and see if indeed that left ureter was working. The nurse looked at the tube and immediately noticed that the valve on the left tube was TURNED OFF! That explains why nothing was draining. But, since I am able to urinate, the ran the test anyway. It consisted of them injecting dye into the tube and taking pictures with the ultrasound machine to see if it would indeed empty into my bladder. They tested both sides and the right side still didn't drain to the bladder, but the left side did.
We were able to cap off the left side (the tube is still there, but only barely sticks out of my back) and they down-graded my right bag to a leg bag. They actually couldn't believe I was sent home with those huge bags. The leg bag is far more discreet and can fit in a pocket or be strapped to my leg under my clothes. It is such a burden released from my shoulders. I have to empty the bag a bit more often, but that's fine with me. And to know that the left kidney/ureter is working makes me feel a little better.
My blood work on Friday came back great and I don't have to go back until Monday. I just have to continue hydrating and keep myself as healthy as I can. I'm still very tired and could nap all day long and sleep all night, but it's a small price to pay in the scheme of things. It tells me that so far my body is tolerating the chemotherapy. As of today I will have my first 7 days down with 7 more to go until my break.
So, that's where things stand for now! I'll update when I know more!
With love and gratitude,
Tara
- Posted from my iPad!!!
Sunday, March 27, 2011
Wednesday, March 23, 2011
The long week in the hospital!
So, I am finally home from the hospital after a week and a day. It was a tough visit and very traumatic on several levels.
I'll explain my situation as well as I can.
Early last year I was put on a chemo drug called Gemzar. It was a rough chemo to take and really wore me out. I would get very tired and my white blood cells would drop. To counteract that, I would have to give myself injections of a drug called Nupogen. The Nupogen would help my white cells recover, but it had it's own side-effects. I would have severe back pain for one whole day. It felt like my spine was throbbing to the beat of my heart. To fight that I would have to take a narcotic pain killer called Dilaudid. That would make me loopy. So I spent many months of 2010 in a weekly stupor. It was not fun, but in November, scans showed that the was no "measurable" disease in my body. Once I heard that, all of the pain and irritation was suddenly worth it.
What I didn't know, but would soon find out was that the Gemzar was working on my body in other, far more dangerous ways. Not long after my hopeful news, I spent a weekend short of breath and feeling faint and dizzy. I had gone through 2 bouts of pneumonia, which I had never had and was even hospitalized for once. So, I thought I probably had pneumonia again. When I went in to see the nurse practitioner, she did a blood workup and scans. My blood pressure was elevated, I was anemic and there was fluid around my heart and lungs. I had to go in and receive 2 units of blood and I had an echo cardiogram. They tapped my lung to remove the fluid and eventually put me in the hospital for a procedure called a pericardial window. Between these two things, the fluid accumulation was taken care of. And, of course, I had been immediately taken off of Gemzar.
Once I healed from these experiences, I was made aware of another problem. My kidneys were also retaining fluid and my creatinine levels were rising. As those numbers go up, kidney function is going down.
So, I was sent to a urologist and had a surgery to put stents in my ureters to relieve the pressure on my kidneys. I never had any pain associated with this and I never stopped urinating. So, it's all thanks to Dr. Steffens staying on top of those blood tests and sending me for ultrasounds and such to catch what happened next before it was too late.
I actually had to have the stents replaced early because the creatine levels started to rise again. I had them put in on 3-10. I went in for blood work on 3-14 and had a call that night from Dr. Steffens. My creatinine levels were above 4 with 1.2 being normal. He told me to meet him at the hospital the next morning to be admitted.
I think my head was spinning. It all seemed to be coming from nowhere. I understood on some level that it was serious, but not kidney failure...which is exactly what it was.
I was admitted on 3-15 and spent that entire day sick. I mean, I was violently ill. I had a CT scan and ultimately spent the rest of that day in a fog.
On Wednesday, before I even knew what was happening, I was whisked away to radiology. There, they explained that they would be putting me under so the radiologist could insert tubes through my back into my kidneys. This would relieve the pressure since there is obviously some blockage that the stents are not able to get through. I had been catheterized, as I was no longer able to urinate but that wasn't helping relieve the fluid on my kidneys that couldn't get to my bladder.
So, the first night with my nephrostomy tubes, over 8 liters of urine was pulled off my kidneys. I was on an IV push of fluids to keep me hydrated while my kidneys just sent everything straight out.
Slowly, over the course of the week, they were able to slow the fluids and I increased my oral intake of water and my kidney function improved bit by bit. I was taken off IV fluids yesterday and woke up today to a perfect 1.2 creatinine level. Dr. Steffens discharged me and I am back at mom's house.
I still have my nephrostomy tubes draining, but I am also urinating on my own. I have my own theories about that. One kidney seems to be draining into the tube better than the other so I figure that blockage is still there and that's the only way it can go. But the left kidney is emptying into the bladder, as it should.
Now, what is this blockage? This was the question that I just couldn't grasp the answer to until this weekend. I have a condition called retroperitoneal fibrosis. the link will explain it better than I can. We don't really know the particular reason I have this disease, but I do. There are options for me, I think, with surgery being one. Major surgery. But until I meet with my urologist in his office, I can't be sure of what they all are. My particular disease is effecting my ureters high near my kidneys as opposed to lower near the bladder and that makes it a little different. I'll let you know when I know more.
For now, I will be laying low. I still have these tubes in and they are uncomfortable as well as being gross and ugly. Plus, I started a new chemo on Monday called Xeloda. It is an oral chemo and it seems to make me very tired. I am on a 21 day cycle. I will take 4 pills twice a day for 14 days, then get 7 days off. I hope it remains bearable and works for me. It will be nice for once to be able to do my chemo at home and not have to sit at the clinic for an infusion.
Everyone, be well and I will be updating when there is something to update!
With love and gratitude,
Tara
I'll explain my situation as well as I can.
Early last year I was put on a chemo drug called Gemzar. It was a rough chemo to take and really wore me out. I would get very tired and my white blood cells would drop. To counteract that, I would have to give myself injections of a drug called Nupogen. The Nupogen would help my white cells recover, but it had it's own side-effects. I would have severe back pain for one whole day. It felt like my spine was throbbing to the beat of my heart. To fight that I would have to take a narcotic pain killer called Dilaudid. That would make me loopy. So I spent many months of 2010 in a weekly stupor. It was not fun, but in November, scans showed that the was no "measurable" disease in my body. Once I heard that, all of the pain and irritation was suddenly worth it.
What I didn't know, but would soon find out was that the Gemzar was working on my body in other, far more dangerous ways. Not long after my hopeful news, I spent a weekend short of breath and feeling faint and dizzy. I had gone through 2 bouts of pneumonia, which I had never had and was even hospitalized for once. So, I thought I probably had pneumonia again. When I went in to see the nurse practitioner, she did a blood workup and scans. My blood pressure was elevated, I was anemic and there was fluid around my heart and lungs. I had to go in and receive 2 units of blood and I had an echo cardiogram. They tapped my lung to remove the fluid and eventually put me in the hospital for a procedure called a pericardial window. Between these two things, the fluid accumulation was taken care of. And, of course, I had been immediately taken off of Gemzar.
Once I healed from these experiences, I was made aware of another problem. My kidneys were also retaining fluid and my creatinine levels were rising. As those numbers go up, kidney function is going down.
So, I was sent to a urologist and had a surgery to put stents in my ureters to relieve the pressure on my kidneys. I never had any pain associated with this and I never stopped urinating. So, it's all thanks to Dr. Steffens staying on top of those blood tests and sending me for ultrasounds and such to catch what happened next before it was too late.
I actually had to have the stents replaced early because the creatine levels started to rise again. I had them put in on 3-10. I went in for blood work on 3-14 and had a call that night from Dr. Steffens. My creatinine levels were above 4 with 1.2 being normal. He told me to meet him at the hospital the next morning to be admitted.
I think my head was spinning. It all seemed to be coming from nowhere. I understood on some level that it was serious, but not kidney failure...which is exactly what it was.
I was admitted on 3-15 and spent that entire day sick. I mean, I was violently ill. I had a CT scan and ultimately spent the rest of that day in a fog.
On Wednesday, before I even knew what was happening, I was whisked away to radiology. There, they explained that they would be putting me under so the radiologist could insert tubes through my back into my kidneys. This would relieve the pressure since there is obviously some blockage that the stents are not able to get through. I had been catheterized, as I was no longer able to urinate but that wasn't helping relieve the fluid on my kidneys that couldn't get to my bladder.
So, the first night with my nephrostomy tubes, over 8 liters of urine was pulled off my kidneys. I was on an IV push of fluids to keep me hydrated while my kidneys just sent everything straight out.
Slowly, over the course of the week, they were able to slow the fluids and I increased my oral intake of water and my kidney function improved bit by bit. I was taken off IV fluids yesterday and woke up today to a perfect 1.2 creatinine level. Dr. Steffens discharged me and I am back at mom's house.
I still have my nephrostomy tubes draining, but I am also urinating on my own. I have my own theories about that. One kidney seems to be draining into the tube better than the other so I figure that blockage is still there and that's the only way it can go. But the left kidney is emptying into the bladder, as it should.
Now, what is this blockage? This was the question that I just couldn't grasp the answer to until this weekend. I have a condition called retroperitoneal fibrosis. the link will explain it better than I can. We don't really know the particular reason I have this disease, but I do. There are options for me, I think, with surgery being one. Major surgery. But until I meet with my urologist in his office, I can't be sure of what they all are. My particular disease is effecting my ureters high near my kidneys as opposed to lower near the bladder and that makes it a little different. I'll let you know when I know more.
For now, I will be laying low. I still have these tubes in and they are uncomfortable as well as being gross and ugly. Plus, I started a new chemo on Monday called Xeloda. It is an oral chemo and it seems to make me very tired. I am on a 21 day cycle. I will take 4 pills twice a day for 14 days, then get 7 days off. I hope it remains bearable and works for me. It will be nice for once to be able to do my chemo at home and not have to sit at the clinic for an infusion.
Everyone, be well and I will be updating when there is something to update!
With love and gratitude,
Tara
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