December 21, 2013
Decided to use my blog to keep family and friends updated regarding my Wegener's
It all started about 3 years ago when I developed a small sore (scab) on the inside of my left nostril. I tried all kinds of ointments and creams to clear it up, but, nothing helped and it kept getting bigger.
Of course Monica, being the thoughtful daughter that she is, kept telling me to stop picking my nose....LOL.. and I kept telling her that I was not picking my nose, the sore was getting bigger and bigger, so I eventually talked to my family doctor about this on one of my regular visits and he thought I should have a biopsy of the area. That was my first encounter with my dermatologist, Dr Baxter, (I was seeing her for my exzema at the time also).
Dr. Baxter agreed that I needed to have a biopsy, so she tried to do a minor biopsy in her office. She was having a difficult time getting a sample, so she called in another dr. in her office, and asked him to do the biopsy.
He also had a difficult time getting a good sample because he said the skin was just shredding each time he tried to get a skin sample. He did what he could and off to the lab went the sample of skin.
I got a call a few days later that I needed to see Dr. Dempsey (a throat, nose and ear specialist).
Dr. Dempsey made a day appointment at the hospital for me, so that he could do a much more indepth biopsy of my nose. They also sent me for a wide range of bloodwork.
I must say, that was the worst most painful procedure I had ever had. It took them almost two hours to get a fair biopsy sample because one again, the skin inside my nose kept shredding, and it smelled horrible, like rotted meat.
A few days later I get a call from Dr. Dempsey, he advised me that it looked like I had a condition called Wegener's Granulomatosis and that I would have to see a rheumatologist, Dr. Hanly.
I had an appointment the next day and Dr. Hanly did more bloodwork, CT scans, etc, and confirmed that I did indeed have Wegerner's.
What is Wegener's you say??? It is an inflammation of the blood vessels. Your nose is the second place in your body that has the most blood vessels. Your kidney is the first.
So Wegener's is an inflammation of the blood vessels in my nose, throat, lungs, and often will also effect your kidneys. I was lucky because as of July it looked like my kidneys had not been affected. Only my upper airways, nose, throat, sinuses, and my lower airways being my lungs.
Dr. Hanly also mentioned that the colds and pneumonia that I was getting every year was probably not pneumonia at all and that it was probably the Wegener's and that I probably had this condition for more that 5 years.
Wegener's is a very rare disease affecting 1 in every 50,000 people. It is not hereditary, or contagious, and there is nothing that I did or didn't do to get this.
There is no cure for Wegener's, all they can do is try to control the disease and get it into remission. The only medication known to do this is the same medication that they give to cancer patients. They are Prednisone and Psyclophosphamide. These medications can only be used for a very short period of time as they can damage your kidneys. Ironic that something to help with your kidneys can also damage your kidneys.
So, in August I began taking both medications. They were prescribed for three months. The Prednisone I started taking 50 mg per day and after 1 month they began to decrease the amount by 5 mg each week. When I first began taking the medication I nose was getting much better. As soon as they began to reduce the amount (by the third week) the inflammation in my nose was coming back and getting worst, so they increased the amount again for two weeks and the inflammation started to get better. After three months on medication they began to decrease the prednisone again and told me to continue taking the psyclophosphamide for another three months, but that I would have to go off the medication after that and they were hoping that the Wegener's would be in remission by then.
Then, I began getting really bad lower back pains, and what I thought was the start of a bladder infection. So I tried the good old home remedies of cranberry juice, warm water with soda, drinking lots of water, etc. After a couple of days of getting worst, I went to see my family Dr.
He put me on very strong antibiotics, and said I should feel some relief almost immediately, as they had to get rid of this bladder infection because it could affect my kidneys, and with my suppressed immune system (because of the medication I was taking) they had to make sure this infection was cleared ASAP. He also told me to stop taking the psyclophosphamide, because that could be the problem also.
I began the antibiotics on a Friday and by Monday morning, the pain was much worst and I could hardly walk. I called my family Dr. and he told me to come into his office. He took one look at me and sent me to the hospital immediately and called the hospital to let them know that I was on my way.
When I got to the hospital, it was IV, bloodwork, urinalisis, CT scan, poke and pry, and Dr.'s running around like crazy because my blood pressure was much too high and my heart rate was so high that they were very worried.
They gave me oxycodone, and morphine for the pain but, nothing was giving me any relief. The only way I could describe the pain was by telling them that it was just like when I went into labour with my children, having natural childbirth with no pain medication, there was the pressure that you have to push and push and lots of burning pain, that would last about two minutes, then it would ease up and within 10 minutes that pain would start again.
When I was admitted, they began giving me antibiotics through the IV and every 24 hours if I had no relief, they would try a different antibiotic. After 4 days, I finally began to get some relief. I had been off the psyclophosphamide for 7 days by then.
So, in the end, after doing blood and urine cultures and hundreds of blood test and urine test, the conclusion was that I was in Chronic Renal Failure. Meaning, my Kidneys had shut down and were not working as they should have.
Now, today, most of the pain is gone, but, I am still having some problems. I have an appointment with Dr. Hanly on Monday, and I will know at that time if there is another medication they can give me for the Wegener's as my upper airways are very inflamed and my lower airways are not great either. The back pain is not as bad, the burning is not as bad either, but, it is still happening.
The reason I didn't want to tell the family or friends that I was in the hospital is that I myself didn't really know what was wrong, and I didn't want anyone to worry about me. I knew there was nothing that anyone could do, and that I was in good hands with the Doctors that I have here in Halifax.
On Monday, after my appointment with Dr. Hanly, I will update my blog so that you can all be up to date on what is happening.
I will take a few pictures this weekend and post them on this blog for all of you to see that I am fine. I have gained a lot of weight (fluids) because of the medication, some of it is slowly going away, but, there is still a lot more to lose. My hair is very thin and brittle (because of the prednisone, the doctor said I may only lose some hair or I may eventually lose all of it), So far, my hair and eyebrows have gotten very brittle, and thin, but on a positive note, I haven't had to shave my legs since August. The hair just stopped growing.
The prednisone has also cleared up my exzema and my skin is softer now than it has ever been.
The left side of my nose looks very funny. It is deformed looking (looks like someone took a bite our of the side of my nose). This is the flesh that is shredding away on the side and inside of my nose. There is a lot of scar tissue on the inside of my nose that will be there forever. They are hoping that plastic surgery can be done on my nose to try and make it look half normal again, but, they can't do this until they can heal the scabs and stop the tissue from shredding on the inside, and in my sinuses.
I think this is about the end of my blog for today.
If you have any questions, please don't hesitate to ask me. I will answer to the best of my ability. This is a very rare disease and I am the only patient that my family Dr. has with this condition. He said, this is something they learn about in medical school but never get a chance to actually see.
There are not very many cases here in Nova Scotia and my Case File is being used to teach the medical students at the University here in Halifax all about Wegener's. Each time I go for my appointment with Dr. Hanly, they take pictures, and I have to sign waivers allowing them to use my information for teaching purposes.
The bottom line is, I am going to be fine, we just need to find something that is going to help get this disease into remission without causing any more damage to my kidneys.
I hope this blog will help you to better understand Wegener's and my health issues.
Positive thoughts all the way.
Of course Monica, being the thoughtful daughter that she is, kept telling me to stop picking my nose....LOL.. and I kept telling her that I was not picking my nose, the sore was getting bigger and bigger, so I eventually talked to my family doctor about this on one of my regular visits and he thought I should have a biopsy of the area. That was my first encounter with my dermatologist, Dr Baxter, (I was seeing her for my exzema at the time also).
Dr. Baxter agreed that I needed to have a biopsy, so she tried to do a minor biopsy in her office. She was having a difficult time getting a sample, so she called in another dr. in her office, and asked him to do the biopsy.
He also had a difficult time getting a good sample because he said the skin was just shredding each time he tried to get a skin sample. He did what he could and off to the lab went the sample of skin.
I got a call a few days later that I needed to see Dr. Dempsey (a throat, nose and ear specialist).
Dr. Dempsey made a day appointment at the hospital for me, so that he could do a much more indepth biopsy of my nose. They also sent me for a wide range of bloodwork.
I must say, that was the worst most painful procedure I had ever had. It took them almost two hours to get a fair biopsy sample because one again, the skin inside my nose kept shredding, and it smelled horrible, like rotted meat.
A few days later I get a call from Dr. Dempsey, he advised me that it looked like I had a condition called Wegener's Granulomatosis and that I would have to see a rheumatologist, Dr. Hanly.
I had an appointment the next day and Dr. Hanly did more bloodwork, CT scans, etc, and confirmed that I did indeed have Wegerner's.
What is Wegener's you say??? It is an inflammation of the blood vessels. Your nose is the second place in your body that has the most blood vessels. Your kidney is the first.
So Wegener's is an inflammation of the blood vessels in my nose, throat, lungs, and often will also effect your kidneys. I was lucky because as of July it looked like my kidneys had not been affected. Only my upper airways, nose, throat, sinuses, and my lower airways being my lungs.
Dr. Hanly also mentioned that the colds and pneumonia that I was getting every year was probably not pneumonia at all and that it was probably the Wegener's and that I probably had this condition for more that 5 years.
Wegener's is a very rare disease affecting 1 in every 50,000 people. It is not hereditary, or contagious, and there is nothing that I did or didn't do to get this.
There is no cure for Wegener's, all they can do is try to control the disease and get it into remission. The only medication known to do this is the same medication that they give to cancer patients. They are Prednisone and Psyclophosphamide. These medications can only be used for a very short period of time as they can damage your kidneys. Ironic that something to help with your kidneys can also damage your kidneys.
So, in August I began taking both medications. They were prescribed for three months. The Prednisone I started taking 50 mg per day and after 1 month they began to decrease the amount by 5 mg each week. When I first began taking the medication I nose was getting much better. As soon as they began to reduce the amount (by the third week) the inflammation in my nose was coming back and getting worst, so they increased the amount again for two weeks and the inflammation started to get better. After three months on medication they began to decrease the prednisone again and told me to continue taking the psyclophosphamide for another three months, but that I would have to go off the medication after that and they were hoping that the Wegener's would be in remission by then.
Then, I began getting really bad lower back pains, and what I thought was the start of a bladder infection. So I tried the good old home remedies of cranberry juice, warm water with soda, drinking lots of water, etc. After a couple of days of getting worst, I went to see my family Dr.
He put me on very strong antibiotics, and said I should feel some relief almost immediately, as they had to get rid of this bladder infection because it could affect my kidneys, and with my suppressed immune system (because of the medication I was taking) they had to make sure this infection was cleared ASAP. He also told me to stop taking the psyclophosphamide, because that could be the problem also.
I began the antibiotics on a Friday and by Monday morning, the pain was much worst and I could hardly walk. I called my family Dr. and he told me to come into his office. He took one look at me and sent me to the hospital immediately and called the hospital to let them know that I was on my way.
When I got to the hospital, it was IV, bloodwork, urinalisis, CT scan, poke and pry, and Dr.'s running around like crazy because my blood pressure was much too high and my heart rate was so high that they were very worried.
They gave me oxycodone, and morphine for the pain but, nothing was giving me any relief. The only way I could describe the pain was by telling them that it was just like when I went into labour with my children, having natural childbirth with no pain medication, there was the pressure that you have to push and push and lots of burning pain, that would last about two minutes, then it would ease up and within 10 minutes that pain would start again.
When I was admitted, they began giving me antibiotics through the IV and every 24 hours if I had no relief, they would try a different antibiotic. After 4 days, I finally began to get some relief. I had been off the psyclophosphamide for 7 days by then.
So, in the end, after doing blood and urine cultures and hundreds of blood test and urine test, the conclusion was that I was in Chronic Renal Failure. Meaning, my Kidneys had shut down and were not working as they should have.
Now, today, most of the pain is gone, but, I am still having some problems. I have an appointment with Dr. Hanly on Monday, and I will know at that time if there is another medication they can give me for the Wegener's as my upper airways are very inflamed and my lower airways are not great either. The back pain is not as bad, the burning is not as bad either, but, it is still happening.
The reason I didn't want to tell the family or friends that I was in the hospital is that I myself didn't really know what was wrong, and I didn't want anyone to worry about me. I knew there was nothing that anyone could do, and that I was in good hands with the Doctors that I have here in Halifax.
On Monday, after my appointment with Dr. Hanly, I will update my blog so that you can all be up to date on what is happening.
I will take a few pictures this weekend and post them on this blog for all of you to see that I am fine. I have gained a lot of weight (fluids) because of the medication, some of it is slowly going away, but, there is still a lot more to lose. My hair is very thin and brittle (because of the prednisone, the doctor said I may only lose some hair or I may eventually lose all of it), So far, my hair and eyebrows have gotten very brittle, and thin, but on a positive note, I haven't had to shave my legs since August. The hair just stopped growing.
The prednisone has also cleared up my exzema and my skin is softer now than it has ever been.
The left side of my nose looks very funny. It is deformed looking (looks like someone took a bite our of the side of my nose). This is the flesh that is shredding away on the side and inside of my nose. There is a lot of scar tissue on the inside of my nose that will be there forever. They are hoping that plastic surgery can be done on my nose to try and make it look half normal again, but, they can't do this until they can heal the scabs and stop the tissue from shredding on the inside, and in my sinuses.
I think this is about the end of my blog for today.
If you have any questions, please don't hesitate to ask me. I will answer to the best of my ability. This is a very rare disease and I am the only patient that my family Dr. has with this condition. He said, this is something they learn about in medical school but never get a chance to actually see.
There are not very many cases here in Nova Scotia and my Case File is being used to teach the medical students at the University here in Halifax all about Wegener's. Each time I go for my appointment with Dr. Hanly, they take pictures, and I have to sign waivers allowing them to use my information for teaching purposes.
The bottom line is, I am going to be fine, we just need to find something that is going to help get this disease into remission without causing any more damage to my kidneys.
I hope this blog will help you to better understand Wegener's and my health issues.
Positive thoughts all the way.
