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Gragnoc
06-26-2014, 06:00 AM
It all started in the winter of 1999 when I was living in Sioux Falls, SD. My waists started to hurt once in a while and was constantly tired. I thought it was being caused by being on a computer all day. I was working in an Online Technical Support Department for a local computer company and typing a lot was a part of the job. I had to leave the company because I couldn't keep up with the workload. Fortunately, I was able to find a new job at a video store as a manager.

In July, I was on vacation with my family in Tennessee when my knees really started to hurt especially after I got back home. One day at work, my left knee swelled up and it hurt to walk, sit down, and kneel. My mother had to drive down from Marshall, MN to take me to the Emergency Room at Sioux Valley Hospital (renamed Sanford Medical Center). They took some X-rays, wrapped my left knee was wrapped up, given crutches, and some medication (can't remember). They also referred me to a doctor of sport medicine. He referred me immediately referred me to a Rheumatologist, but it was a week before my appointment.

During that week, my best friend was in the process of moving into my apartment. His Fiancee bought us some fast food takeout that Thursday night, but I started vomiting overnight and I thought it was food poisoning. I called my best friend and his fiancee to see if they were also got food poisoning. They felt fine and will check on me the next day thinking it was a stomach flu. Unfortunately, that wasn't the case and went to my Rheumatologist appointment the next day with a bucket. The doctor and his nurse took care of me while they ran the blood tests and examined me. I went home and tried to rest but wasn't getting better. My My father took me back to the ER at Sioux Valley Medical Center again and the doctors immediately admitted me thinking it was sever dehydration.

While in the hospital, I had bad nausea, vomiting every time I ate or drank, bleeding into my sinuses, my knees swelled, and the rest of my joints ached. It became very difficult to do the simplest things. My parents sat at the table in the corner of my hospital while doctors tried to figure out what was wrong with me. They checked for STD's (Negative), Lyme Disease (Negative), drugs (Negative), GI problems (Negative), and then tried a number of other tests. Then the Rheumatologist I saw the other day came to my room once he found out I was in the hospital after missing my follow up appointment. He ordered a chest x-ray which showed nodules and blood in my lungs. He then informed me that I have Wegeners Granulomatosis later that day and answered some other my parents questions. It was weird, my reaction was "Ok" mainly because the other doctors had me on strong pain killers and anti-nausea medication. However, after he left the room to submit some orders, the news sank in that I have a rare condition that was quickly getting worse then I started to cry my eyes out.


The doctor ordered a PICC IV, a bronchoscopy, Prednisone, Cyclophosphamide, Bactrim, and other things. The procedure to put in a PICC IV was not fun and first high dose of Predisone made me very nauseous. That night I started to cough up blood The next morning I had the bronchoscopy and moved to Pulmonary ICU. After the medication started to take effect and the nausea was gone, my parents got me pizza after the doctor gave permission. My doctor eventually released me from the hospital, but had me schedule to visit him at least once a week and blood tests three times a week.
He readjusted my dosage of my medications.


Medications I was put on at the time.
Prednisone - 80mg to 160mg for a very short time
Cyclophosphamide - 150mg to 200mg for a very short time
Bactrim - 1 Pill to 2 Pills
Prilosec - 1 Pill to 2 Pills
Blood Pressure Medication (Don't Remember)
Coumadin - depending on my pro-time tests
Iron Pills - 1 Pill to 2 Pills
Prescription Pain Killer - when needed
Prescription Anti-Nausea - when needed


So far, Wegeners Granulomatosis hit my sinuses, joints, skin, and lungs. After being dischanged from the hospital, my kidneys started to fail and had to start seeing a Nephrologist. He was in the same building as my Rheumatologist and had weekly appointments on the same day. My Kidneys were also filtering out proteins from my blood causing blood clots that traveled to my lungs and caused another trip to the hospital.


It took two months to get everything under control and another few months before the doctors started my tapers.

mishb
06-26-2014, 10:08 PM
WOW :crying: and all of this was in 1999.

So how do you feel in 2014 ??

Gragnoc
06-27-2014, 03:00 AM
Michelle,

1999 and 2000 were very tough years for me :sad:. Things didn't start to go my way until 2001.

I have been in pain the past few months. My doctor is seeing blood in my urine again and my blood tests have should WG activity in my kidneys along with inflammation. Which is kind of depressing since I have experienced drug free remission for about 3-4 years. Me and my best friend are wondering what is causing my WG to come out of remission.

Greg

annekat
06-27-2014, 03:25 AM
Welcome, Greg, and thanks for sharing your story. Everyone's is a little different and yours is no exception. I'm glad that the worst seems to be behind you and you are getting better. I'm glad that your kidneys didn't go into a major crisis and that was gotten under control. I'm glad you found the forum and look forward to hearing more from you.

windchime
06-27-2014, 04:21 AM
Greg one of the major reasons people come out of remission is stress. It will get you every time. Some people have gotten immunizations and that has thrown them into a flare. You just have to look at the past six months to a year and see if you can figure it out as everyone is different.

Gragnoc
06-27-2014, 04:43 AM
Greg one of the major reasons people come out of remission is stress. It will get you every time. Some people have gotten immunizations and that has thrown them into a flare. You just have to look at the past six months to a year and see if you can figure it out as everyone is different.

Thank you Cindy. I will try to look back at the past six months to a year in order to figure out what caused my flare up.

Greg

annekat
06-27-2014, 06:05 AM
Oops, I missed the part about your kidneys starting to act up and that you seem to be flaring. Cindy is so right about stress being a factor. I have been doing pretty well with my treatment and haven't as bad of issues as some people, but I have a lot of stress and seem to have a little flare every winter. I don't know if I can get into a real remission, even a drug maintained one, without resolving some of the stress in my life. Good luck to you.

Alysia
06-28-2014, 11:04 PM
thanks for sharing your story Greg :hug1:it gives hope to know that you were couple of years in remission. stresss for sure makes us flaring, but we can also flare after having a cold/ flu/ some illness or even after getting certain vaccinnes (controversial issue, tough).

Gragnoc
07-01-2014, 01:26 AM
Thank you for the hug, Alysia :smile:. I think this flare was caused by stress. Need to keep reminding myself to do activities that relieves stress.

Alysia
07-01-2014, 01:40 AM
Thank you for the hug, Alysia :smile:. I think this flare was caused by stress. Need to keep reminding myself to do activities that relieves stress.
stress makes me sick as well :( infections, flaring, getting more viruses. I am going to my psychologist once or twice a week, trying to be with positive people, doing walking every day, eating only healthy food and the most helpful - being here in the forum with my amazingly supportive weggie family :love:

Gragnoc
07-01-2014, 04:28 AM
Alysia,
I am very lucky to have the great friends. One even offered to drive me to my appointment at the Mayo Clinic. I try to eat healthy food and exercise, but some days it is very hard. One thing I really enjoy doing, is go with friends to a car show that is held every Friday night in the summer :smile:. On bad days I try to do stuff that help relieve stress and positive such as watch movies, read a books, play video games, and hang out with good friends. Joining the WG forum was one of the best things to happen to me recently :w00t:. Everyone here is amazingly supportive and awesome.

Alysia
07-01-2014, 04:55 PM
. Joining the WG forum was one of the best things to happen to me recently :w00t:. Everyone here is amazingly supportive and awesome.
if you have to be a weggie, at least you can enjoy being a member in our weggie family :thumbup:
I would not survive, body and soul, without my friends here :love:

annekat
07-01-2014, 05:08 PM
if you have to be a weggie, at least you can enjoy being a member in our weggie family :thumbup:
I would not survive, body and soul, without my friends here :love: I feel the same way!:thumbsup:

mishb
07-01-2014, 08:56 PM
Me too......also :tongue1::hug3: