I am having to sit up for an hour as I just took my Actonel. The pharmacist, shortly, upon my arrival here, informed me that I've been taking the Actonel incorrectly. It has to be taken on an empty stomach, I have to be sitting up for at least 1/2 hour preferably a full hour, and drink lots of water with it. Boy am I glad I only take this particular pill once a week. And of course I can't have any calcium at the same time.
Then she later proceeds to tell me that I'm not taking my calcium in an optimum manner. Because I'm on mega doses it needs to be split up through the day to allow the body to absorb it. In case you are wondering what mega doses of calcium are it's 2000+ mg of calcium daily.
Last night I started the voriconazole which is an anti-fungal drug. Dr. Loach said that the CT scan I had done yesterday shows the nodules on my lungs have gotten a littler bigger. These are the nodules that appeared when I relapsed in 2000 that they were unable to get a biopsy of. The CT scan also was still "hazy" meaning I guess that there is still a lot of congestion. He said I would be here until next week at least - they will do another CT scan at that point. They are not sure that I have a fungal infection - but they are not sure what the deal is with the nodules. So Dr. Loach said they would rather overtreat which is why they've started the voriconazole.
At some point they will want to do another bronchosopy to try biopsying the nodes again. However, for the same reason Dr. Chan couldn't fully sedate me last Monday for the bronchosopy he did they will wait because the risk factors with my lungs in such poor shape is too high.
I am having a really hard time staying alert/awake while writing this. Granted it is 7:14 an and I normally would be on a GO train napping on my way into work. But it's a little frustrating to suddenly find myself staring out into space or worse my eyes closed!
It looks like p can come and visit today. I am so looking forward to that. Haven't seen him since he left me at emergency because he's been too sick. So awful that noone there to take care of him.
Leg wound is doing well. And might even start healing a little faster as they dropped the prednisone back to 25 mg. Dr. Chan had increased it before the bronchosopy to try and give some lung function back.
Tuesday, May 12, 2009
Sunday, May 10, 2009
Mother's Day on a Sunday Night at Chez Princess Margaret
Today was a quiet day. B & C visited - it was really nice to have them come. My flute teacher and co flutist from my York days. As B said though, it is much nicer to visit over sushi then a hospital bed!
Things do seem to be improving. Congestion is looser was finally able to give them a sample for testing. Doubt it will come back with anything though.
My oxygen stats were a little low today so my nurse bumped up the oxygen to 4 litres for the afternoon which helped. I'm back down to 2 litres now. Sure dries the heck out of the mucous lining in my nose. Had some longer nosebleeds last night then usual. My nose tends to bleed anyway when it is dry but the oxygen exacerbates it for sure.
My leg is doing well a bright spot in all this murk. But it's been a royal pain because for some reason the mepiplex dressings that have been so awesome are not sticking or something. So everyday there seems to be leaking and then either wrap up the leg with gauze to stop goop going from everywhere or else the dressing gets changed. Really the dressing should be able to last a few days unless there is excessive drainage from the wound. The draining is not excessive - it is just the dressing doesn't seem to want to stick. Though maybe we had a bum batch of dressings so they switched the boxes but it's still happening. Frustrating.
Mum and Dad have been troupers throughout this. They have been down from Barrie pretty much every day. Only days they haven't were because Dad had rehearsals for his King Edward choir rehearsal and tomorrow Mum has an appointment with a nephrologist. I hope that is nothing major. She has helped me with showers and they been making sure I get my hazelnut creme coffee intervention!
Tuesday I had a shower with mum's help and it just about did me in. I was soooo exhausted after I almost felt worse then when I was admitted Sunday night. But I have since had my third shower today and while it still tires me out, I am managing much better.
P has been really sick. It's taking him as long to recuperate as me. I'm not sure when I will get to see him. I haven't seen him since he left me at emergency on Sunday night. I've been really worried about him. And the rub is that noone to help him plus he has all the little guys to take care of. I feel awful about that. It's not that noone has offered - I should qualify that. Sue and Shirley have both offered but peter hasn't taken them up on any of the offers. I guess maybe he's waiting until I am home. And as for that I have no idea what is happening beyond Monday/Tuesday. Dr. Loach said he wants to do a CT scan either day. But I also need to get off oxygen before I can go anywhere. I certainly hope they don't decide to send me home with oxygen. I'm pretty sure that's not in the plans though - at least I hope.
Work is supportive. Feel bad that I've left JM in the lurch. But, my health is the most important thing right now and I am really trying to focus on that and not worry about other stuff.
This is the ward that Oliver Schroerer was on. He was teaching students right up until the last. Very cool. I hate that someone so talented and vital lost his life to this evil disease.
I think Lupe Rodriguez was on this ward too. The ward I am on is the leukemia ward not the transplant ward.
Did I mention that I have been in what they call droplet isolation? The room has full negative isolation capacity but thank god my situation doesn't warrant that. It would mean a shut door and stuffy room at all times for the most part. Instead visitors (depending on the nurse on duty wear all or part of the next list) have to wear goggles, gloves, mask and gown. It's not about my protection - it's to prevent me from spreading the flu virus to them. The none swine variety para-influenza virus that I have.
I've managed to convince Mum & Dad to get a text messaging package. So Dad was all thrilled because it meant he could go and get a new phone! Mum has done really well with it. I love it - I love being able to fire off a quick message. And it's been great for keeping in touch while they are driving here and knowing where they are and asking if I need or want anything and avoiding talking on the phone and long distance charges!!! I've been following Twitter on my phone - although the first few days I was here I turned it off because it was just too much to cope with. For example, tonight they texted me to say they were stopping at the Mandarin for dinner. Because of course today is Mother's Day. What a crappy place for a mother to spend her Mother's Day. In a hospital helping her daughter cope with being ill. To boot she cooked me a mini-dish of scallopped potatoes with gruyere (yum. I'm supposed to be spoiling her not her taking care of me. So not right.
Okay, done for now. See if my pirate connection is still working!
Things do seem to be improving. Congestion is looser was finally able to give them a sample for testing. Doubt it will come back with anything though.
My oxygen stats were a little low today so my nurse bumped up the oxygen to 4 litres for the afternoon which helped. I'm back down to 2 litres now. Sure dries the heck out of the mucous lining in my nose. Had some longer nosebleeds last night then usual. My nose tends to bleed anyway when it is dry but the oxygen exacerbates it for sure.
My leg is doing well a bright spot in all this murk. But it's been a royal pain because for some reason the mepiplex dressings that have been so awesome are not sticking or something. So everyday there seems to be leaking and then either wrap up the leg with gauze to stop goop going from everywhere or else the dressing gets changed. Really the dressing should be able to last a few days unless there is excessive drainage from the wound. The draining is not excessive - it is just the dressing doesn't seem to want to stick. Though maybe we had a bum batch of dressings so they switched the boxes but it's still happening. Frustrating.
Mum and Dad have been troupers throughout this. They have been down from Barrie pretty much every day. Only days they haven't were because Dad had rehearsals for his King Edward choir rehearsal and tomorrow Mum has an appointment with a nephrologist. I hope that is nothing major. She has helped me with showers and they been making sure I get my hazelnut creme coffee intervention!
Tuesday I had a shower with mum's help and it just about did me in. I was soooo exhausted after I almost felt worse then when I was admitted Sunday night. But I have since had my third shower today and while it still tires me out, I am managing much better.
P has been really sick. It's taking him as long to recuperate as me. I'm not sure when I will get to see him. I haven't seen him since he left me at emergency on Sunday night. I've been really worried about him. And the rub is that noone to help him plus he has all the little guys to take care of. I feel awful about that. It's not that noone has offered - I should qualify that. Sue and Shirley have both offered but peter hasn't taken them up on any of the offers. I guess maybe he's waiting until I am home. And as for that I have no idea what is happening beyond Monday/Tuesday. Dr. Loach said he wants to do a CT scan either day. But I also need to get off oxygen before I can go anywhere. I certainly hope they don't decide to send me home with oxygen. I'm pretty sure that's not in the plans though - at least I hope.
Work is supportive. Feel bad that I've left JM in the lurch. But, my health is the most important thing right now and I am really trying to focus on that and not worry about other stuff.
This is the ward that Oliver Schroerer was on. He was teaching students right up until the last. Very cool. I hate that someone so talented and vital lost his life to this evil disease.
I think Lupe Rodriguez was on this ward too. The ward I am on is the leukemia ward not the transplant ward.
Did I mention that I have been in what they call droplet isolation? The room has full negative isolation capacity but thank god my situation doesn't warrant that. It would mean a shut door and stuffy room at all times for the most part. Instead visitors (depending on the nurse on duty wear all or part of the next list) have to wear goggles, gloves, mask and gown. It's not about my protection - it's to prevent me from spreading the flu virus to them. The none swine variety para-influenza virus that I have.
I've managed to convince Mum & Dad to get a text messaging package. So Dad was all thrilled because it meant he could go and get a new phone! Mum has done really well with it. I love it - I love being able to fire off a quick message. And it's been great for keeping in touch while they are driving here and knowing where they are and asking if I need or want anything and avoiding talking on the phone and long distance charges!!! I've been following Twitter on my phone - although the first few days I was here I turned it off because it was just too much to cope with. For example, tonight they texted me to say they were stopping at the Mandarin for dinner. Because of course today is Mother's Day. What a crappy place for a mother to spend her Mother's Day. In a hospital helping her daughter cope with being ill. To boot she cooked me a mini-dish of scallopped potatoes with gruyere (yum. I'm supposed to be spoiling her not her taking care of me. So not right.
Okay, done for now. See if my pirate connection is still working!
Monday, May 04, 2009
The Joys of Low PFTs
So here I am. On the 14A ward at PMH. Spent last night at TGH emergency. Lungs got so bad yesterday had to do something.
A week ago Friday I saw Dr. C and my PFTs were so bad that he scheduled a bronchoscopy for the Monday so he could figure out what we are dealing with before he committed to a treatment. Went back to work Thursday , Friday had to stay home. Couldn't get hold of Dr. C and his admin suggested I try Dr. L who said yes come. I explained what had been happening and he said well I can't leave you without anything at this point. he consulted with the infectious diseases person here who works with immune compromised patients. Because one result from the bronc came back positive for a viral flu - no not the N1H1 variety but at that point they didn't know which one it was other then not swine flu - it was suggested that he prescribe Relazon which is for viral influenzas.
Of course there was most a hitch. Got down to the pharmacy to discover they didn't have any in stock and nor did the other pharmacy that we called. Called the inpatient pharmacy and yes they had some but they were reluctant about parting with any. Plus it turns out that because of the current status of N1H1 pharmacies can't directly order the drug - the ON government has the say in divvying it put. the long and the short - they did give me the first half of the dose.
So I started the puffer on Friday night. By Sunday I was sicker and sicker. To the point that finally P and I looked at each other and said - okay we have to do something. I was sitting in a chair at my computer and not able to breath.
We called the oncall nurse here at PMH who was a little concerned that we wanted to come into TGH emergency because she could hear I was in distress with my breathing as well as emotionally. The long and short was I did not want to go to emergency in Hamilton because we have just not been having good experiences with either Mac or HGH. I could have gone to urgent care at St. Joe's in Stoney Creek but I didn't want to be admitted in Hamilton. It just doesn't make sense - they don't know what to do with me. So we drove to TGH.
We arrived at 7:05 pm. Before 8 pm I was triaged, in a room with the door shut for isolation purposes and on oxygen. By 10 pm they had done an x-ray and bloodwork/blood cultures. P finally left at 2 am - he was so sick. I was so very worried about him having to drive home alone back to Hamilton but what could we do? The animals needed someone and while yes there were any number of people that would have put him up it was better that he go home. The doctor, when he came in, said we are just waiting to see where we have a bed for you. Fortunately, in the morning when they came back it was at PMH. Thank God. And even more fortuitiously, on the 14th floor. So while not in the transplant ward I am across the way and Dr. Loach has been coming in to see me except for the weekend. (I started this post on May 5th and am continuing it May 10th)
So the long and short is that I have a para-influenza virus. The only treatment is rest and in my case oxygen, steroid inhalers and stuff to deal with the coughing fits. I've been here Monday morning till now, Sunday night. Lots of visitors - I am so grateful. It keeps my spirits up. Malcolm and Stella, Barbara and Christine, Becca and Emma, Sue, Nancy, Sherman and Jim. I've probably forgotten someone. And of course my Mum and Dad who have been absolute troupers. Thank god for parents. I just wish my mother's day present wasn't a day at the hospital...
So, we are waiting to do a CT scan and beyond that I don't know what is happening.
I figured I should finish this post though because I realized I left some things out in my next post. And I've probably still missed things.
A week ago Friday I saw Dr. C and my PFTs were so bad that he scheduled a bronchoscopy for the Monday so he could figure out what we are dealing with before he committed to a treatment. Went back to work Thursday , Friday had to stay home. Couldn't get hold of Dr. C and his admin suggested I try Dr. L who said yes come. I explained what had been happening and he said well I can't leave you without anything at this point. he consulted with the infectious diseases person here who works with immune compromised patients. Because one result from the bronc came back positive for a viral flu - no not the N1H1 variety but at that point they didn't know which one it was other then not swine flu - it was suggested that he prescribe Relazon which is for viral influenzas.
Of course there was most a hitch. Got down to the pharmacy to discover they didn't have any in stock and nor did the other pharmacy that we called. Called the inpatient pharmacy and yes they had some but they were reluctant about parting with any. Plus it turns out that because of the current status of N1H1 pharmacies can't directly order the drug - the ON government has the say in divvying it put. the long and the short - they did give me the first half of the dose.
So I started the puffer on Friday night. By Sunday I was sicker and sicker. To the point that finally P and I looked at each other and said - okay we have to do something. I was sitting in a chair at my computer and not able to breath.
We called the oncall nurse here at PMH who was a little concerned that we wanted to come into TGH emergency because she could hear I was in distress with my breathing as well as emotionally. The long and short was I did not want to go to emergency in Hamilton because we have just not been having good experiences with either Mac or HGH. I could have gone to urgent care at St. Joe's in Stoney Creek but I didn't want to be admitted in Hamilton. It just doesn't make sense - they don't know what to do with me. So we drove to TGH.
We arrived at 7:05 pm. Before 8 pm I was triaged, in a room with the door shut for isolation purposes and on oxygen. By 10 pm they had done an x-ray and bloodwork/blood cultures. P finally left at 2 am - he was so sick. I was so very worried about him having to drive home alone back to Hamilton but what could we do? The animals needed someone and while yes there were any number of people that would have put him up it was better that he go home. The doctor, when he came in, said we are just waiting to see where we have a bed for you. Fortunately, in the morning when they came back it was at PMH. Thank God. And even more fortuitiously, on the 14th floor. So while not in the transplant ward I am across the way and Dr. Loach has been coming in to see me except for the weekend. (I started this post on May 5th and am continuing it May 10th)
So the long and short is that I have a para-influenza virus. The only treatment is rest and in my case oxygen, steroid inhalers and stuff to deal with the coughing fits. I've been here Monday morning till now, Sunday night. Lots of visitors - I am so grateful. It keeps my spirits up. Malcolm and Stella, Barbara and Christine, Becca and Emma, Sue, Nancy, Sherman and Jim. I've probably forgotten someone. And of course my Mum and Dad who have been absolute troupers. Thank god for parents. I just wish my mother's day present wasn't a day at the hospital...
So, we are waiting to do a CT scan and beyond that I don't know what is happening.
I figured I should finish this post though because I realized I left some things out in my next post. And I've probably still missed things.
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