Stephanie78
07-22-2011, 10:39 AM
Since we live 3 hours away from Chapel Hill we decided to schedule Johns rheumy appt and his appt with Dr Falk (the kidney dr) on the same day. In the beginning of his treatment at UNC Dr Michael Smith was his main overseeing dr (rheumy) however after the biopsy a couple weeks ago came back showing that there was kidney involvement (Not much but still...) Dr Falk asked to be the main caregiver (dr) for John. Honestly, we felt like we had won the lottery due to the incredible things we have heard and read about this doctor.
The first appt was with his rheumy. John will go to him every 6 months or more IF needed. Since Dr Falk will be the main dr, Dr Smith just basically sat with us for a while and conversated. His main concern was Johns depression. He asked John what he does for "fun". John just looked at him like he was stupid. (I actually giggled on the inside just thinking about what John probably REALLY wanted to say). He asked John things that were going on. The list included
1- Not having motivation
2- being unable to fall asleep easily (even with Ambien)
3- Waking up several times in the middle of the night and not being able to fall back to sleep for a while.
4- Not feeling like eatting, even when his stomach is growling
5- Being extremely emotional (crying for no reason)
With all of this he explained to John that he felt that he was in a pretty deep depression. He explained that it was normal for someone who had just been diagnosed with a disease of this sort and also included that the meds alone were enough to do it. He also explained that it is something that YOU (meaning John) can just get over and that it would take medical help to get thru it. (Things that you all have told me over and over again and things I have passed on to John..Just think he needed a dr that he trusted to say it to him).
So then we went to see the other dr. Apparently there are a lot of people in his office curious about John because they ALL came in to meet him stating that they had read all about him and his case. Anyway the Dr noticed that Johns lips were completly white (Not even able to tell he had lips). Apparently this concerned him enough to want to know his hemoglobin levels. At the highest (In May) they were 12.5 however since June they have been 9. He was concerned that the levels had not changed at all since the 2 Cytoxan treatments. He said that he was afraid that CTX was not going to work for John (He stated that it doesn't work for some people???) He then said he wanted to do the rituxan (Not sure that's how you spell it) He asked if the Rheumy had gone over that option with us. I explained to him that I had heard of it and had also researched it and when we asked the rheumy about it that he was skepital about it due to the fact that it was new and not passed yet. He explained that it was passed in April and that it is a well known treatment. (We actually prefered that treatment in the beginning). He said that he wanted to do the 2 infusion treatment with John starting ASAP. He actually wanted to do it today HOWEVER (Please don't think I'm a horrible person) we requested that we do it next week. We were not prepared to stay and our kids were told we would be back tonight. PLUS I hated just calling into work in the morning with no notice (they are great about it all but still...) Then we asked if they ever did it on the weekends and they said yes. SO we scheduled it for Saturday. He will be admitted on Saturday morning and kept until Sunday (They want to make sure it does well with it since he has had some horrible reactions to other meds) AND the kids will go with us (we will stay in the University Hotel).
Dr. Falk said that he will have two treatments, is being tapered off of the prednisone and best case scenerio...He will go on a maintence drug afterwards and hit remission. Worse case scenerio....He will have to have maybe one more cytoxan treatment after the rituxan infusions.
The good news....He said that the kidney biopsy showed different results then what we were given! He said in the filteration area there are 28 filters (tiny vessells) he said that 5 of them show involvement (disease) Which means 25 of them are PERFECT and he does not see it getting worse. He said that John has a very mild case to the kidneys. He also said that he firmly believes that John will be back at 95 of what he was before. He said he sees remission but also predicts a relasp (He stated that 80% of his patients have it and that he always expects it). But that now that they know he has it, they can treat it fast and know how to treat it.
He said that the numbness and tingling in the feet and hands will never go away, it will get better then it is now but not go away. He said that it is nerve damage and they never know if it is part of the disease of part of the meds. Some patients get it, others don't. He also said that if that is the only thing to show from the disease that he is lucky and can get past it.
They said that his weight loss is 1- part of his depression and 2- due to his metabolic rate being so high from the disease (from his body fighting) and that he lost so much muscle from being in the bed for 2 months.
It was a long day. Productive, but long.
The first appt was with his rheumy. John will go to him every 6 months or more IF needed. Since Dr Falk will be the main dr, Dr Smith just basically sat with us for a while and conversated. His main concern was Johns depression. He asked John what he does for "fun". John just looked at him like he was stupid. (I actually giggled on the inside just thinking about what John probably REALLY wanted to say). He asked John things that were going on. The list included
1- Not having motivation
2- being unable to fall asleep easily (even with Ambien)
3- Waking up several times in the middle of the night and not being able to fall back to sleep for a while.
4- Not feeling like eatting, even when his stomach is growling
5- Being extremely emotional (crying for no reason)
With all of this he explained to John that he felt that he was in a pretty deep depression. He explained that it was normal for someone who had just been diagnosed with a disease of this sort and also included that the meds alone were enough to do it. He also explained that it is something that YOU (meaning John) can just get over and that it would take medical help to get thru it. (Things that you all have told me over and over again and things I have passed on to John..Just think he needed a dr that he trusted to say it to him).
So then we went to see the other dr. Apparently there are a lot of people in his office curious about John because they ALL came in to meet him stating that they had read all about him and his case. Anyway the Dr noticed that Johns lips were completly white (Not even able to tell he had lips). Apparently this concerned him enough to want to know his hemoglobin levels. At the highest (In May) they were 12.5 however since June they have been 9. He was concerned that the levels had not changed at all since the 2 Cytoxan treatments. He said that he was afraid that CTX was not going to work for John (He stated that it doesn't work for some people???) He then said he wanted to do the rituxan (Not sure that's how you spell it) He asked if the Rheumy had gone over that option with us. I explained to him that I had heard of it and had also researched it and when we asked the rheumy about it that he was skepital about it due to the fact that it was new and not passed yet. He explained that it was passed in April and that it is a well known treatment. (We actually prefered that treatment in the beginning). He said that he wanted to do the 2 infusion treatment with John starting ASAP. He actually wanted to do it today HOWEVER (Please don't think I'm a horrible person) we requested that we do it next week. We were not prepared to stay and our kids were told we would be back tonight. PLUS I hated just calling into work in the morning with no notice (they are great about it all but still...) Then we asked if they ever did it on the weekends and they said yes. SO we scheduled it for Saturday. He will be admitted on Saturday morning and kept until Sunday (They want to make sure it does well with it since he has had some horrible reactions to other meds) AND the kids will go with us (we will stay in the University Hotel).
Dr. Falk said that he will have two treatments, is being tapered off of the prednisone and best case scenerio...He will go on a maintence drug afterwards and hit remission. Worse case scenerio....He will have to have maybe one more cytoxan treatment after the rituxan infusions.
The good news....He said that the kidney biopsy showed different results then what we were given! He said in the filteration area there are 28 filters (tiny vessells) he said that 5 of them show involvement (disease) Which means 25 of them are PERFECT and he does not see it getting worse. He said that John has a very mild case to the kidneys. He also said that he firmly believes that John will be back at 95 of what he was before. He said he sees remission but also predicts a relasp (He stated that 80% of his patients have it and that he always expects it). But that now that they know he has it, they can treat it fast and know how to treat it.
He said that the numbness and tingling in the feet and hands will never go away, it will get better then it is now but not go away. He said that it is nerve damage and they never know if it is part of the disease of part of the meds. Some patients get it, others don't. He also said that if that is the only thing to show from the disease that he is lucky and can get past it.
They said that his weight loss is 1- part of his depression and 2- due to his metabolic rate being so high from the disease (from his body fighting) and that he lost so much muscle from being in the bed for 2 months.
It was a long day. Productive, but long.