Stephanie78
04-05-2012, 11:05 AM
Where do I even begin? After testing ANCA negative for 3 months in a row (Yes we do realize that the test alone DOES NOT constitute a "Remission" status) along with no symptoms and increased strength John's dr's said that "remission" was a safe assumption. We celebrated Christmas thrilled at the news and went into the New Year with hopes of a Health(ier) year.
John's Creantine levels were still higher then the neuphrologist liked (1.7) however they had remained stable at that number for right at 6 months. In November we adopted a puppy that would play Johns companion during the days while I was at work and the kids were in school. Callie (Our black lab, pit mix) is the SWEETEST dog ever! In January John begin to have Sinus issues again (Just stuffy) He went to the neuphrologist (who is he overseeing dr with the diesase) and they suggested that he go and see his ENT. After seeing the ENT going on a low does of Pred and returning after a week the ENT said that it was allergies (possibly to the new puppy) but that there was NO swelling in the sinus' as there had been before when he was having a flare.
March 10th we had driven to Durham (Actually outside of UNC) to pick up a friend who had flew in from Kansas to visit for the week. We stopped at a resturaunt to have lunch and watch the Carolina/State ball game and then began our ride back home (2 hours). On Friday (the day before) we had closed on our new home and would be working on it the next week so that we could move in by the first of April.
Within a hour and a half into the drive John started complaining of being tired and barely able to keep his eyes open. Neither of us found this odd because as all of you know you wear out eaiser after being dx with WG. After getting home I decided to feel his forehead and he was warm. After checking his temp (it was 100.1) I called UNC and spoke with his neuphrologist. Our oldest (Zac) had been sick with a viral thing earlier that week with a fever (no vomiting just fever and tired). The doctor called him in a antibiotic (NOT beause he thought it was infection but to kinda ward off infection) He too thought it was viral and said as long as we keep it below 101 we were good.
The next morning John woke up feeling better. We went shopping for new flooring for our new home and went to check out the paint job (we hired painters so that he would not be around the fumes due to the lung involvement he had back last summer).
After returning back home he laid down for a nap. I checked his temp again and it was 99.9. His dr had called and checked up on him twice that day. The next morning, he seemed fine. I left for work and called a couple of times to check on him. Never did he sound "sicker". One I returned home I knew something was wrong. He was shaking like he was freezing. I checked his temp and it was 102. I called the hospital at UNC and found that his dr was not on call. (Now don't judge me here but I got aggressive) I DO NOT trust just any "oncall" dr. His neuphrologist gave me his personal cell # and for the first time (he gave it to me in July) I dialed that number terrified of what I was doing. It went to Voice Mail but he returned my call within 60 seconds (Literally). I gave him the update and as he was telling me "You need to bring him into to UNC now" I walked into the room to find John vomitting in the sink. At that point he basically yelled "Get him to the closest ER NOW!"
By the time we arrived at the local ER (Which was filled to the MAX with patients waiting to be seen) they could see how sick he was and got us at the top of the list.
By the time we were settled into a room (In the ER) he had uncontrollable vomit and diareaha. His temp had spiked to 104.9 and his BP was 75/40.
DX was a severe virus accompanied with a severe kidney infection. They admitted him to the hospital.
The next day they could not get his BP up so they admitted him to ICU so they could give him a BP drip to help raise his BP. During the night (before they moved him to ICU he passed out (while in the bathroom) and fell and hit his head/face.
By mid day they decided that he had to be transfered to UNC and were waiting on a room in the CCU. They had him scheduled to be airlifted however by the time UNC had a room the weather had gotten so bad they had to take Vita-Link (A ground transportation which had two actual RN's on the truck)
Long story short (He was there for 2 weeks) John started out with a virus called the "nora virus" Due to the fever and extreme vomiting and diahreha he became dehydrated which is horrible with already compromised kidneys. This caused his kidneys to shut down. This in return caused fluid to build up in his body (around his heart) and... Wait for it... Wait for it... CAUSED HIM TO HAVE A HEART ATTACK! Once at UNC they were doing heart test due to his BP being so low. One of the blood test showed that fluid that leaks out when one has a heart attack (Ta Da.. Now we had a reason for why he fell in the bathroom!)
After a couple of days his kidneys continued to get worse. At the worse his Creantine levels were 7.6. This led to them putting in a port in his neck and him having 3 treatments of dialysis.
By the 3rd day his levels had gone down and they chose to moniter. By Saturday they were back at 2.5 which they were comfortable with. (Last Thursday they were 2.09) Johns kidneys are functioning at 50% which the dr said he can go FOREVER with. However they have decided that they will NOT allow his immune system to build back up for a while longer, meaning when he gets sick (which is easier) this is what we will deal with. They have also informed us that IF his kidneys get to a point where he would need "Long Term" dialysis they will NOT go that route. They will instead opt for a kidney transplant.
Johns heart did take a big hit this time. He goes back to the cardiologist in UNC on Wednesday.
OH he also had pneumonia. While vomiting he had some go into his lungs which caused pneumonia.
Luckily the dr's DO NOT believe the disease was flaring. They believe it is all secondary and the virus caused a long reaction to the organs that were already damaged from the disease. They also said he has ATN (A kidney thing, I can't remember what it stands for, I know what it is ).
He came home 10 days ago and has been doing well (tired of course). My family was awesome with caring for the kids AND getting the house ready for us while we were at UNC.
That's about it, I mean we can't handle to much excitement so we try to keep it simple (Yeah Right).
John's Creantine levels were still higher then the neuphrologist liked (1.7) however they had remained stable at that number for right at 6 months. In November we adopted a puppy that would play Johns companion during the days while I was at work and the kids were in school. Callie (Our black lab, pit mix) is the SWEETEST dog ever! In January John begin to have Sinus issues again (Just stuffy) He went to the neuphrologist (who is he overseeing dr with the diesase) and they suggested that he go and see his ENT. After seeing the ENT going on a low does of Pred and returning after a week the ENT said that it was allergies (possibly to the new puppy) but that there was NO swelling in the sinus' as there had been before when he was having a flare.
March 10th we had driven to Durham (Actually outside of UNC) to pick up a friend who had flew in from Kansas to visit for the week. We stopped at a resturaunt to have lunch and watch the Carolina/State ball game and then began our ride back home (2 hours). On Friday (the day before) we had closed on our new home and would be working on it the next week so that we could move in by the first of April.
Within a hour and a half into the drive John started complaining of being tired and barely able to keep his eyes open. Neither of us found this odd because as all of you know you wear out eaiser after being dx with WG. After getting home I decided to feel his forehead and he was warm. After checking his temp (it was 100.1) I called UNC and spoke with his neuphrologist. Our oldest (Zac) had been sick with a viral thing earlier that week with a fever (no vomiting just fever and tired). The doctor called him in a antibiotic (NOT beause he thought it was infection but to kinda ward off infection) He too thought it was viral and said as long as we keep it below 101 we were good.
The next morning John woke up feeling better. We went shopping for new flooring for our new home and went to check out the paint job (we hired painters so that he would not be around the fumes due to the lung involvement he had back last summer).
After returning back home he laid down for a nap. I checked his temp again and it was 99.9. His dr had called and checked up on him twice that day. The next morning, he seemed fine. I left for work and called a couple of times to check on him. Never did he sound "sicker". One I returned home I knew something was wrong. He was shaking like he was freezing. I checked his temp and it was 102. I called the hospital at UNC and found that his dr was not on call. (Now don't judge me here but I got aggressive) I DO NOT trust just any "oncall" dr. His neuphrologist gave me his personal cell # and for the first time (he gave it to me in July) I dialed that number terrified of what I was doing. It went to Voice Mail but he returned my call within 60 seconds (Literally). I gave him the update and as he was telling me "You need to bring him into to UNC now" I walked into the room to find John vomitting in the sink. At that point he basically yelled "Get him to the closest ER NOW!"
By the time we arrived at the local ER (Which was filled to the MAX with patients waiting to be seen) they could see how sick he was and got us at the top of the list.
By the time we were settled into a room (In the ER) he had uncontrollable vomit and diareaha. His temp had spiked to 104.9 and his BP was 75/40.
DX was a severe virus accompanied with a severe kidney infection. They admitted him to the hospital.
The next day they could not get his BP up so they admitted him to ICU so they could give him a BP drip to help raise his BP. During the night (before they moved him to ICU he passed out (while in the bathroom) and fell and hit his head/face.
By mid day they decided that he had to be transfered to UNC and were waiting on a room in the CCU. They had him scheduled to be airlifted however by the time UNC had a room the weather had gotten so bad they had to take Vita-Link (A ground transportation which had two actual RN's on the truck)
Long story short (He was there for 2 weeks) John started out with a virus called the "nora virus" Due to the fever and extreme vomiting and diahreha he became dehydrated which is horrible with already compromised kidneys. This caused his kidneys to shut down. This in return caused fluid to build up in his body (around his heart) and... Wait for it... Wait for it... CAUSED HIM TO HAVE A HEART ATTACK! Once at UNC they were doing heart test due to his BP being so low. One of the blood test showed that fluid that leaks out when one has a heart attack (Ta Da.. Now we had a reason for why he fell in the bathroom!)
After a couple of days his kidneys continued to get worse. At the worse his Creantine levels were 7.6. This led to them putting in a port in his neck and him having 3 treatments of dialysis.
By the 3rd day his levels had gone down and they chose to moniter. By Saturday they were back at 2.5 which they were comfortable with. (Last Thursday they were 2.09) Johns kidneys are functioning at 50% which the dr said he can go FOREVER with. However they have decided that they will NOT allow his immune system to build back up for a while longer, meaning when he gets sick (which is easier) this is what we will deal with. They have also informed us that IF his kidneys get to a point where he would need "Long Term" dialysis they will NOT go that route. They will instead opt for a kidney transplant.
Johns heart did take a big hit this time. He goes back to the cardiologist in UNC on Wednesday.
OH he also had pneumonia. While vomiting he had some go into his lungs which caused pneumonia.
Luckily the dr's DO NOT believe the disease was flaring. They believe it is all secondary and the virus caused a long reaction to the organs that were already damaged from the disease. They also said he has ATN (A kidney thing, I can't remember what it stands for, I know what it is ).
He came home 10 days ago and has been doing well (tired of course). My family was awesome with caring for the kids AND getting the house ready for us while we were at UNC.
That's about it, I mean we can't handle to much excitement so we try to keep it simple (Yeah Right).