I Have Portal Vein Thrombosis
While I have added my thoughts to one story, I feel it is important to share a few of my experiences here for others to read.
I am 45, and my pain began in August 2011. I made the assumption I had a bladder infection, and went to urgent care (one step down from an emergency room). I learned that I had an abnormal PSA test (2.8) 16 months earlier that I was not told about by my doctor. As there was no sign of infection, and kidney stones were ruled out, my PSA was retested and had risen to 3.4, again abnormal for my age.
I went to my family doctor and he determined I likely had prostatitis. His treatment was to put me on a 90 day coarse of nevofloxacin, a fluroquilone antibiotic related to cipro and levoquin. I would be reassessed after the 90 days and go on another coarse of it for 90 days if there was little or no improvement. This did not make sense to me as there was no sign of infection and I did not like the thought of being on an antibiotic for 90 days or more.
As there was a history of prostate cancer in my family, as I did not like the treatment plan, and I felt that if I did have cancer I was losing a half a year before it being diagnosed under my doctors plan, I went to a walk in clinic for a second opinion. That doctor referred me to a urologist, but recomended that I take the antibiotc as it was the right coarse of action for an enlarged prostate (I also had a few minor symptoms of prostate cancer or prostatitis.
Two weeks later, on September 27, the urologist, concerned over my PSA levels, ordered a prostate biopsy. He suggested that I continue the nevofloxacin, and prescribed cipro to be taken for 3 days around the biopsy.
Within 10 days, I had the biopsy and came though it with little difficulty directly related to the biopsy itself, but by this point the pain I was experiencing had grown from a minor annoyance in early August to debilitating pain by late September. Even before the biopsy I had considered going to the ER because of the pain. What initially started as a minor pain below my belly button had grown to a feeling of intense bloating that had daily moved up my abdomen to encompass my entire abdominal cavity below my rib cage. I had stopped doing up my belt on my pants and was letting my pants fall down to my lower hips because of the pain. On September 30, I informed my brother and wife I was heading to the ER as I could no longer take the pain anymore. My deterioration had been rapid and believing that I had a cancer, I went to the ER with the belief that I was never coming out of the hospital. My deterioration had been so rapid that I knew if it continued I would be dead in a month.
Even the drive into emergency was horrible. I live 30 minutes from the hospital where the urologist was and went there as it made sense to go where the specialist was. By the time I got there, my pain had gone from a 5 to a 9 and sitting in a driving position was intollerable. I had a massive pain in the area of my sternum, but it really was in the entire abdominal area, I just didn't notice the lower areas as much. In the ER, they ran test after test on me from blood work to ECG's to a chest and abdominal xrays. They found nothing.
While waiting for results of the Xrays, they gave me a "pink lady" to numb my intestinal tract, but I knew it was not a normal gastro intestinal problem and the pink lady had no impact on the pain. I was then given an IV pain killer that had no impact on the pain either. I actually believe this was a placebo to see if I was faking it, but when I told them there was no impact, the ordered an ultrasound for the next day, and I was sent home and told to return to the ER the next day.
During the night, as I could not sleep, I researched nevofloxacin and cipro to see if they could be causing the intense pain. What I found was horrifying. While there are sideeffects listed on warnings given out with the drugs, the FDA has a whole list of unconfirmed sideeffects that have been reported but not proven as being caused by the drugs. Pancreatitis is one of them and I believed I was suffering from a serious attack of it. The list of potential problems was scary.
If anyone else has had PVT after being given cipro, levoquin, norofloxacin, or other fluoroquilones please post on this blog. I do wonder if the antibiotics caused my PVT, although I have been told that the PVT has been there a long time.
After reading up on the antibiotics I stopped taking the nevofloxacin (I actually stopped the day before concerned I was sick from them). I returned to the ER the next day, and the ultra sound showed nothing. After getting the results, I was told I was abusing the system and did not belong in ER (the walk in clinic told me I needed to be in ER), but something I said got the worst doctor I have ever seen to run a CT Scan. It was completed, and I was sent home after being told that nothing was found in the scan. It was now late on October 1, and I had been in ER for 18 hours out of the last 36, but I was feeling better having been off the nevofloxacin for 36 hours (by better I mean still horrible with a pain of about 5, just better than I had been for the past 3 weeks).
About 10 days later the urologist confirmed I had prostate cancer. He indicated that it was caught very early and was only found in 3 of the 10 "drill holes". He asked if I was still in pain, and my answer "yes" seemed to puzzle him. I could tell that he believed that prostate cancer caught this early should not cause pain. I told him of my ER visit and he indicated he would review the results of the tests that were run in ER. The next day while working I knew there was more going on than prostate cancer, the pain was at times intense and on the right side a few inches below my rib cage.
The urologist found the PVT clearly listed in the CT Scan report but not picked up by the ER doctor the next day. I was put in a day clinic the next day and put on blood thinners. My life has improved dramatically since then although the first few days after the blood thinners were started were very difficult. I ended up back in urgent care 2 days after starting the thinners with bad pain. Blood work, what I call the liver panel, showed my liver to be getting more and more stressed. The liver panel became regular blood work for a few weeks along with the INR, and after an initial spiking of my ALT, it has since gone back down. My LDH has been high but my understanding of this is that it is from the breakdown of the clot.
For me the liver panel is my key information source and I encourage you to monitor it closely and demand it to be tested if it is not being done. The ALT being high on its own was not a huge concern until it hits 14 times its normal range (normal max was 72, I was told they would worry if it hit 1000), but again that is on its own. If others were high as well, then it may be an indicator of liver stress.
I still have pain, but it is not as bad as it was and is sporatic. The location of the pain seems to move around, but often is in my back and right leg. I had assumed that my hips were out causing the leg pain, but now believe it is the PVT as it is different than what I used to experience. My main problems are fatigue and I seem to be cold alot. I typically wear a sweater most of the time and never did before. This started not long after the pain.
I avoid anything that can cause my liver to work or be stressed and feel that this has worked well for me. No alcohol is number 1, and I am dreading the thought of a dry Christmas, but it is a small price to pay to stay alive. I try hard not to take pain killers including Tylenol. I would rather suffer than take them, and have found that the pain seems to come back even stronger when they wear out, I think this is from the extra stress on the liver it causes, but I am likely wrong. I believe, based on my reading that I am lucky having less pain than most people who have blogged here. Whether this is because I have less blockage today or because I am avoiding alcohol and pain killers I do not know, but my clot was considered extensive and in both right and left portal veins and their branches when diagnosed.
I am scheduled for a CT Scan on December 15, which will tell me where I am at and determine if I can have prostate surgery currently scheduled for January 6, 2012. The clot could make the surgery unsafe, but this is a very unusual combination, the clot and prostate cancer, and they are not sure how to proceed.
We are of the opinion that as soon as possible all potential causes of the PVT must be removed if I am to improve long term. For me that means removing the prostate and the cancer associated with it, even though I have been told that the prostate cancer is unlikely to have caused the clot. But the fact is that any cancer can cause clots, so it must go, and soon. I will be tested later to see if there is a genetic predisposition to clotting. If it is neither, then I am at a loss as to the cause of the clot. A combination of the 2 is most likely. I am scared there is another cancer causing this that they have not yet found. It seems a small cancer to be causing this clot.
One of the frustrations is that everytime I think I am getting better, something happens, such as pain or nausea that reminds me I am battling a medical condition that is going to take time to improve. I did initially lose weight, but have since started to put it back on. I have not really had trouble eating, and feel for those of you who have.
Please share your thoughts, it is good therapy.
Good luck all, and I hope things go well for you!
I am 45, and my pain began in August 2011. I made the assumption I had a bladder infection, and went to urgent care (one step down from an emergency room). I learned that I had an abnormal PSA test (2.8) 16 months earlier that I was not told about by my doctor. As there was no sign of infection, and kidney stones were ruled out, my PSA was retested and had risen to 3.4, again abnormal for my age.
I went to my family doctor and he determined I likely had prostatitis. His treatment was to put me on a 90 day coarse of nevofloxacin, a fluroquilone antibiotic related to cipro and levoquin. I would be reassessed after the 90 days and go on another coarse of it for 90 days if there was little or no improvement. This did not make sense to me as there was no sign of infection and I did not like the thought of being on an antibiotic for 90 days or more.
As there was a history of prostate cancer in my family, as I did not like the treatment plan, and I felt that if I did have cancer I was losing a half a year before it being diagnosed under my doctors plan, I went to a walk in clinic for a second opinion. That doctor referred me to a urologist, but recomended that I take the antibiotc as it was the right coarse of action for an enlarged prostate (I also had a few minor symptoms of prostate cancer or prostatitis.
Two weeks later, on September 27, the urologist, concerned over my PSA levels, ordered a prostate biopsy. He suggested that I continue the nevofloxacin, and prescribed cipro to be taken for 3 days around the biopsy.
Within 10 days, I had the biopsy and came though it with little difficulty directly related to the biopsy itself, but by this point the pain I was experiencing had grown from a minor annoyance in early August to debilitating pain by late September. Even before the biopsy I had considered going to the ER because of the pain. What initially started as a minor pain below my belly button had grown to a feeling of intense bloating that had daily moved up my abdomen to encompass my entire abdominal cavity below my rib cage. I had stopped doing up my belt on my pants and was letting my pants fall down to my lower hips because of the pain. On September 30, I informed my brother and wife I was heading to the ER as I could no longer take the pain anymore. My deterioration had been rapid and believing that I had a cancer, I went to the ER with the belief that I was never coming out of the hospital. My deterioration had been so rapid that I knew if it continued I would be dead in a month.
Even the drive into emergency was horrible. I live 30 minutes from the hospital where the urologist was and went there as it made sense to go where the specialist was. By the time I got there, my pain had gone from a 5 to a 9 and sitting in a driving position was intollerable. I had a massive pain in the area of my sternum, but it really was in the entire abdominal area, I just didn't notice the lower areas as much. In the ER, they ran test after test on me from blood work to ECG's to a chest and abdominal xrays. They found nothing.
While waiting for results of the Xrays, they gave me a "pink lady" to numb my intestinal tract, but I knew it was not a normal gastro intestinal problem and the pink lady had no impact on the pain. I was then given an IV pain killer that had no impact on the pain either. I actually believe this was a placebo to see if I was faking it, but when I told them there was no impact, the ordered an ultrasound for the next day, and I was sent home and told to return to the ER the next day.
During the night, as I could not sleep, I researched nevofloxacin and cipro to see if they could be causing the intense pain. What I found was horrifying. While there are sideeffects listed on warnings given out with the drugs, the FDA has a whole list of unconfirmed sideeffects that have been reported but not proven as being caused by the drugs. Pancreatitis is one of them and I believed I was suffering from a serious attack of it. The list of potential problems was scary.
If anyone else has had PVT after being given cipro, levoquin, norofloxacin, or other fluoroquilones please post on this blog. I do wonder if the antibiotics caused my PVT, although I have been told that the PVT has been there a long time.
After reading up on the antibiotics I stopped taking the nevofloxacin (I actually stopped the day before concerned I was sick from them). I returned to the ER the next day, and the ultra sound showed nothing. After getting the results, I was told I was abusing the system and did not belong in ER (the walk in clinic told me I needed to be in ER), but something I said got the worst doctor I have ever seen to run a CT Scan. It was completed, and I was sent home after being told that nothing was found in the scan. It was now late on October 1, and I had been in ER for 18 hours out of the last 36, but I was feeling better having been off the nevofloxacin for 36 hours (by better I mean still horrible with a pain of about 5, just better than I had been for the past 3 weeks).
About 10 days later the urologist confirmed I had prostate cancer. He indicated that it was caught very early and was only found in 3 of the 10 "drill holes". He asked if I was still in pain, and my answer "yes" seemed to puzzle him. I could tell that he believed that prostate cancer caught this early should not cause pain. I told him of my ER visit and he indicated he would review the results of the tests that were run in ER. The next day while working I knew there was more going on than prostate cancer, the pain was at times intense and on the right side a few inches below my rib cage.
The urologist found the PVT clearly listed in the CT Scan report but not picked up by the ER doctor the next day. I was put in a day clinic the next day and put on blood thinners. My life has improved dramatically since then although the first few days after the blood thinners were started were very difficult. I ended up back in urgent care 2 days after starting the thinners with bad pain. Blood work, what I call the liver panel, showed my liver to be getting more and more stressed. The liver panel became regular blood work for a few weeks along with the INR, and after an initial spiking of my ALT, it has since gone back down. My LDH has been high but my understanding of this is that it is from the breakdown of the clot.
For me the liver panel is my key information source and I encourage you to monitor it closely and demand it to be tested if it is not being done. The ALT being high on its own was not a huge concern until it hits 14 times its normal range (normal max was 72, I was told they would worry if it hit 1000), but again that is on its own. If others were high as well, then it may be an indicator of liver stress.
I still have pain, but it is not as bad as it was and is sporatic. The location of the pain seems to move around, but often is in my back and right leg. I had assumed that my hips were out causing the leg pain, but now believe it is the PVT as it is different than what I used to experience. My main problems are fatigue and I seem to be cold alot. I typically wear a sweater most of the time and never did before. This started not long after the pain.
I avoid anything that can cause my liver to work or be stressed and feel that this has worked well for me. No alcohol is number 1, and I am dreading the thought of a dry Christmas, but it is a small price to pay to stay alive. I try hard not to take pain killers including Tylenol. I would rather suffer than take them, and have found that the pain seems to come back even stronger when they wear out, I think this is from the extra stress on the liver it causes, but I am likely wrong. I believe, ba
I am scheduled for a CT Scan on December 15, which will tell me where I am at and determine if I can have prostate surgery currently scheduled for January 6, 2012. The clot could make the surgery unsafe, but this is a very unusual combination, the clot and prostate cancer, and they are not sure how to proceed.
We are of the opinion that as soon as possible all potential causes of the PVT must be removed if I am to improve long term. For me that means removing the prostate and the cancer associated with it, even though I have been told that the prostate cancer is unlikely to have caused the clot. But the fact is that any cancer can cause clots, so it must go, and soon. I will be tested later to see if there is a genetic predisposition to clotting. If it is neither, then I am at a loss as to the cause of the clot. A combination of the 2 is most likely. I am scared there is another cancer causing this that they have not yet found. It seems a small cancer to be causing this clot.
One of the frustrations is that everytime I think I am getting better, something happens, such as pain or nausea that reminds me I am battling a medical condition that is going to take time to improve. I did initially lose weight, but have since started to put it back on. I have not really had trouble eating, and feel for those of you who have.
Please share your thoughts, it is good therapy.
Good luck all, and I hope things go well for you!
By:
Skylardog
Age:
41-45
