My CF likes to keep me on my toes and for no obvious reason my last clinic visit (one week ago) was an utter disaster. Weight was down (just a bit) and my lung function tanked. I had been very short of breath, but I didn't feel sick. I could manage my day to day life and although I was a bit more tired and very breathless I really didn't feel like I had a major exacerbation. And yet my lung function was a pitiful 26%. Yeah, pitiful! A few clinics ago I was on top of the world at 38% so to drop so significantly without having an obvious infection or any kind of virus was pretty shocking. Needless to say, I wasn't going to mess around and I agreed to IVs and a quick stay in ICU for desensitization.
Just like my last desensitization after several days (3 to be exact) of waiting for a bed to open up I was admitted in the evening, but there were no plans to start the process until the next day when the allergists would be in. After a lot of frustrating issues with meds (I really hate being on any floor that isn't a designated CF floor) and a very late start to treatments I was told I was being moved to isolation. When I inquired about isolation I was told something about a potential issue with a nontuberculosis mycobacterium. Not the news I wanted to hear!! NTM is one of those bugs (like MRSA) that I just never wanted to deal with. (Later I looked up my new cultures which included 4 new bugs, but none of them seemed to be a NTM. I did have a few that were labeled "concern of infection control" so maybe that was the issue. I am still not completely clear except that when my doctor found out I was in isolation he was kinda upset and said it was absurd that they have to put me in a negative pressure room due to any of my bugs).
The next day I had my desensitization in my isolation room and by the time I completed the process (which was basically the same as last time) I was released from isolation and was told I would be moved once again as soon as a bed on the CF floor opened up. After more issues with meds including the nurses losing my Orkambi and the nurses refusing to give me more enzymes because I had my prescribed "3 times a day" dose of enzymes already I was finally moved to the CF floor. As I was being wheeled into my regular floor I felt so much relief to be around people that actually understood CF.
By Saturday afternoon I was released to finish my course of IVs at home. I was relieved to be out of the hospital and back in my own environment, but of course as luck would have it, the drama was just about to begin!
Showing posts with label hospitalization. Show all posts
Showing posts with label hospitalization. Show all posts
Friday, March 30, 2018
Sunday, October 1, 2017
Two Years and Counting
This month officially marks TWO years hospital free!! I can't remember the exact date I was admitted so I am sure I am a week or two early, but I am celebrating now anyway. It is also 1 1/4 years IV free!
It has also been a little over 2 years on Orkambi. Coincidence? I think not! I can't wait to see what new meds are around the corner and how much healthier all of us in the CF community can be!!
It has also been a little over 2 years on Orkambi. Coincidence? I think not! I can't wait to see what new meds are around the corner and how much healthier all of us in the CF community can be!!
Thursday, November 10, 2016
Passage Of Time
"Remember when you were in the hospital?" Kaylee says from the backseat of the car.
My grip on the steering wheel tightens and I feel my chest tighten along with it. I take a deep breath, my last hospital stay was a little over a year ago, but the stress and anxiety my absence during the hospital admission caused Kaylee was something that she still brings up from time to time.
"Do you remember how I used to eat all your hospital food?"
I feel relief wash over me. This conversation isn't going to be like so many other conversations she has about the hospital, begging me to promise that I will never go to the hospital again, a promise I can't honestly make.
We share memories about her coming and eating my meals and how I always saved her dessert. We reminisced about how I always ordered an extra dessert so she could have treats when she came to visit. How one time my dinner arrived too late and you had just left when my tray arrived. My floor nurse that day, knowing how much you loved the sorbet, ran down the hall and stopped the elevator door to make sure you got your sorbet before leaving. You mention coloring together in my hospital bed and we bring up all the happy and fun memories we had while I was inpatient.
The car is quiet for a minute when I hear, "I wish daddy would go to the hospital so we could visit him and eat all his food and color." Kaylee is used to daddy working all day so the idea of him being gone felt safer and less scary which is why I am sure she hoped for him to be in the hospital and not me. But the fact that over the last year her memory filtered out the hard parts of the hospital, but retained some of the fun times we had together while I was inpatient, so much so that she wanted to return and relive the good moments made my heart swell.
So often I worry how my disease, especially hospital stays, disrupts Kaylee's happy childhood. I feel an immense amount of guilt over how my life negatively impacts hers. And yet, the very worst part of Cystic Fibrosis to a small child, having it take away your mommy for 8 days, has left her with some happy memories lets me let go of a bit of that mothers guilt that seems to go hand in hand with the disease. I know Cystic Fibrosis will get harder as she gets older and becomes more aware of the long term repercussions of the disease, but for now I am happy to know that together we can make happy memories even in the midst of this hideous disease that is great at leaving destruction and sadness in its wake.
My grip on the steering wheel tightens and I feel my chest tighten along with it. I take a deep breath, my last hospital stay was a little over a year ago, but the stress and anxiety my absence during the hospital admission caused Kaylee was something that she still brings up from time to time.
"Do you remember how I used to eat all your hospital food?"
I feel relief wash over me. This conversation isn't going to be like so many other conversations she has about the hospital, begging me to promise that I will never go to the hospital again, a promise I can't honestly make.
We share memories about her coming and eating my meals and how I always saved her dessert. We reminisced about how I always ordered an extra dessert so she could have treats when she came to visit. How one time my dinner arrived too late and you had just left when my tray arrived. My floor nurse that day, knowing how much you loved the sorbet, ran down the hall and stopped the elevator door to make sure you got your sorbet before leaving. You mention coloring together in my hospital bed and we bring up all the happy and fun memories we had while I was inpatient.
The car is quiet for a minute when I hear, "I wish daddy would go to the hospital so we could visit him and eat all his food and color." Kaylee is used to daddy working all day so the idea of him being gone felt safer and less scary which is why I am sure she hoped for him to be in the hospital and not me. But the fact that over the last year her memory filtered out the hard parts of the hospital, but retained some of the fun times we had together while I was inpatient, so much so that she wanted to return and relive the good moments made my heart swell.
So often I worry how my disease, especially hospital stays, disrupts Kaylee's happy childhood. I feel an immense amount of guilt over how my life negatively impacts hers. And yet, the very worst part of Cystic Fibrosis to a small child, having it take away your mommy for 8 days, has left her with some happy memories lets me let go of a bit of that mothers guilt that seems to go hand in hand with the disease. I know Cystic Fibrosis will get harder as she gets older and becomes more aware of the long term repercussions of the disease, but for now I am happy to know that together we can make happy memories even in the midst of this hideous disease that is great at leaving destruction and sadness in its wake.
Saturday, October 15, 2016
The Hospital Made Me Lazy
Unlike many people, those with CF do not have the luxury of calling into work and sleeping off an illness. Our illness can't be cured with a few days in bed and extra rest. For me, sickness seems to linger for at least a few weeks until antibiotics kick in and even then I still have another week or two of clearing out extra mucus, recovering from side effects and regaining my regular energy levels. If I were to sleep off my sickness I wouldn't leave my bed for a month! Not to mention all that inactivity would mean my mucus would pool at the bottom of my lungs making it virtually impossible to clear out. So like most people with CF, I do what I can to power through. We can't ignore dishes, and laundry, and cooking meals for a month and so through fevers and violent coughing we find a way to keep life from falling apart.
That is unless we are in the hospital.
Hospital stays, as horrendous as they can be, mean no laundry or cooking or much of anything outside of treatments and interrupted sleep. And somehow as much as I despise the hospital when I start to get sick I crave the lazy days the hospital provides. Let's be real, when sickness finds its way into my home all I want to do is lay on the couch and watch TV while someone brings me food and water on demand, doesn't everyone? And if it isn't already obvious I just want to say, I have no desire to be in the hospital (ever), I just want the lazy perks that come with a hospital stay. I guess I want my cake and I want to eat it too! Sure, most people don't want to do chores while sick, but going to the hospital more often these past few years has started to train my mind that sickness = laying in bed all day reading and watching TV.
Unfortunately, my four year old can't cook and I despise the hospital so I guess for now I need to learn to be productive through sickness and push those lazy desires aside.
*I am currently not sick, but we just got through our first school year colds. The cold made me realize how much I now crave being lazy while sick compared to the past*
That is unless we are in the hospital.
Hospital stays, as horrendous as they can be, mean no laundry or cooking or much of anything outside of treatments and interrupted sleep. And somehow as much as I despise the hospital when I start to get sick I crave the lazy days the hospital provides. Let's be real, when sickness finds its way into my home all I want to do is lay on the couch and watch TV while someone brings me food and water on demand, doesn't everyone? And if it isn't already obvious I just want to say, I have no desire to be in the hospital (ever), I just want the lazy perks that come with a hospital stay. I guess I want my cake and I want to eat it too! Sure, most people don't want to do chores while sick, but going to the hospital more often these past few years has started to train my mind that sickness = laying in bed all day reading and watching TV.
Unfortunately, my four year old can't cook and I despise the hospital so I guess for now I need to learn to be productive through sickness and push those lazy desires aside.
*I am currently not sick, but we just got through our first school year colds. The cold made me realize how much I now crave being lazy while sick compared to the past*
Friday, October 23, 2015
Hospital Schedule
I often have family and friends ask what I do in the hospital all day. People often don't realize how busy CFers are when they are in the hospital. Treatments come every 4 hours around the clock and can take 30-40 minutes to administer. Add strange medication schedules, early morning blood draws, staff coming in almost every hour, and we often go home feeling sleep deprived!
6:00am- My nurse brings my acid reducer which I take and promptly try to go back to sleep.
7:30am- breakfast arrives along with my vitamins and meds.
8:00am- treatments. This means if breakfast is late or I decide to asleep in I don't get breakfast until it is ice cold.
11:30am- lunch arrives.
12:00pm- treatments.
2:00pm- I try to hop on the exercise bike for about 30 minutes if I don't have anything else going on such as pfts, x-rays, etc.
4:00pm- treatments
6:00pm- dinner
8:00pm- treatments
9:00pm- After treatments I try to have a snack, take Orkambi relax in the dark. I don't usually bother sleeping yet because the nurse is back by 10 to change my IVs and give me my night meds.
10:00pm- IV bag change and night meds.
10:30pm- Finally time to sleep!
12:00am- Treatments...AGAIN!
4:00am- I am supposed to have another set of treatments, but I usually decline these because I want to get at least 5 hours of sleep.
6:00am- My nurse brings my acid reducer which I take and promptly try to go back to sleep.
7:30am- breakfast arrives along with my vitamins and meds.
8:00am- treatments. This means if breakfast is late or I decide to asleep in I don't get breakfast until it is ice cold.
11:30am- lunch arrives.
12:00pm- treatments.
2:00pm- I try to hop on the exercise bike for about 30 minutes if I don't have anything else going on such as pfts, x-rays, etc.
4:00pm- treatments
6:00pm- dinner
8:00pm- treatments
9:00pm- After treatments I try to have a snack, take Orkambi relax in the dark. I don't usually bother sleeping yet because the nurse is back by 10 to change my IVs and give me my night meds.
10:00pm- IV bag change and night meds.
10:30pm- Finally time to sleep!
12:00am- Treatments...AGAIN!
4:00am- I am supposed to have another set of treatments, but I usually decline these because I want to get at least 5 hours of sleep.
Wednesday, March 4, 2015
Antibiotic Desensitization
I wanted to describe the process of desensitization because before my last admission I was pretty clueless about. It was actually much easier than I anticipated, it but was something I was very nervous about prior to actually going through the process.
This seems to vary by hospital, but my hospital requires a stay in ICU to be desensitized. This means you have heart monitors (5), an oxygen monitor, a constant temp monitor, a blood pressure cuff that takes your blood pressure every 15 minutes, and of course your IV so needless to say you can't move much. The downfall to this is when nature calls you are at the mercy of your nurse. I had to buzz the nurse every time I needed to pee. Once the nurse arrived she/he would have to unhook all my monitors and then pull the potty out from the counter it folder into. I don't know if you can even picture that because until I saw it I would have been like, what? But basically they have a cabinet and when you open it there is a toilet that you can pull out, use, flush and fold back into the cabinet. Although my nurse was the one that had to flush and fold back under the cabinet. Then I would be hooked up to my monitors again until the next time I had to pee. It was not my favorite way of using the bathroom and I tried to avoid going as much as possible. Healthy, I know.
When I got to the hospital I didn't actually start the process or any meds until the next day which made it feel like a super expensive hotel without the perks of a comfortable bed or any privacy. The next morning they started setting up my room for the desensitization. I was totally calm about the whole process until this point. They started to fill my room with "just in case" supplies. It actually made me nervous as more and more supplies started to fill my room in case, oh I don't know, I went into anaphylactic shock and tried to die on them. My heart rate shot up and the alarms on my heart monitor kept going off, which was slightly embarrassing.
A very diluted version of the medicine was given over 15 minutes and then a slightly stronger dose of the drug was given for 15 minutes. This continued for varying times over the course of four hours. The allergist had to stay with me for the entire four hours plus a few more to ensure I didn't react to the drug. The lack of privacy was probably the worst part of the whole process, I doubt he liked that part very much either. Once they knew I was okay I continued the drug like normal.
The next day another allergist came to see how I was doing and explained that the process is hugely successful. I wished she was my allergist the day before because after I talked to her I realized the chances of a severe reaction was pretty slim and I would have been much more relaxed while going through the desensitization.
Unfortunately, desensitization is only good until you stop the drug for 24-48 hours meaning if I ever need this drug (or one of the other four I am allergic to) I will need another trip to ICU. However, besides the toilet issue and the unwanted allergist roommate it is really an easy process.
This seems to vary by hospital, but my hospital requires a stay in ICU to be desensitized. This means you have heart monitors (5), an oxygen monitor, a constant temp monitor, a blood pressure cuff that takes your blood pressure every 15 minutes, and of course your IV so needless to say you can't move much. The downfall to this is when nature calls you are at the mercy of your nurse. I had to buzz the nurse every time I needed to pee. Once the nurse arrived she/he would have to unhook all my monitors and then pull the potty out from the counter it folder into. I don't know if you can even picture that because until I saw it I would have been like, what? But basically they have a cabinet and when you open it there is a toilet that you can pull out, use, flush and fold back into the cabinet. Although my nurse was the one that had to flush and fold back under the cabinet. Then I would be hooked up to my monitors again until the next time I had to pee. It was not my favorite way of using the bathroom and I tried to avoid going as much as possible. Healthy, I know.
When I got to the hospital I didn't actually start the process or any meds until the next day which made it feel like a super expensive hotel without the perks of a comfortable bed or any privacy. The next morning they started setting up my room for the desensitization. I was totally calm about the whole process until this point. They started to fill my room with "just in case" supplies. It actually made me nervous as more and more supplies started to fill my room in case, oh I don't know, I went into anaphylactic shock and tried to die on them. My heart rate shot up and the alarms on my heart monitor kept going off, which was slightly embarrassing.
A very diluted version of the medicine was given over 15 minutes and then a slightly stronger dose of the drug was given for 15 minutes. This continued for varying times over the course of four hours. The allergist had to stay with me for the entire four hours plus a few more to ensure I didn't react to the drug. The lack of privacy was probably the worst part of the whole process, I doubt he liked that part very much either. Once they knew I was okay I continued the drug like normal.
The next day another allergist came to see how I was doing and explained that the process is hugely successful. I wished she was my allergist the day before because after I talked to her I realized the chances of a severe reaction was pretty slim and I would have been much more relaxed while going through the desensitization.
Unfortunately, desensitization is only good until you stop the drug for 24-48 hours meaning if I ever need this drug (or one of the other four I am allergic to) I will need another trip to ICU. However, besides the toilet issue and the unwanted allergist roommate it is really an easy process.
Sunday, January 19, 2014
When 3 turns into 6
After admitting to myself that I really needed to be admitted tot he hospital in order to hopefully end this year of bad health I knew I could not be away from my daughter for a full two weeks. I called my CF nurse and she agreed that I really only needed a few days of intense CPT and then I would be fine to go home and finish home IVs. I was told 3-4 days would be as long as I would have to be in the hospital. Of course, knowing the way hospitals work I told myself that I would be out in 4-5 days tops.
Yeah, so apparently when you are a stay at home mom you don't pay attention to holidays and when you don't pay attention to holidays and you get admitted to the hospital you set yourself up for disaster. On Friday (day 3) I was told I would most likely go home the next day, but I also know weekends can be a little tricky. I figured I would be out by Sunday (day 5) as a worst case scenario. And then someone reminded me that it was a long weekend which suddenly makes setting up my home IVs even more challenging. As of now I am going on day 6(!!!!!!) of my 4 day max stay and am not sure I can get home until Tuesday due to my insurance office not being open. I feel like I might go crazy being away from my heart and soul, my daughter this long. I have officially decided I am never ever going to agree to an admission before thoroughly checking the calendar and making sure there are absolutely no holidays anywhere near my potential release date.
The only thing that is keeping me going is knowing that my daughter is handling the time away from me amazingly well. She visits everyday, often twice and we snuggle, eat snacks, sing songs, and play. She then goes home and has done so well playing with her daddy and grandpa (my dad) who have been caring for her. She loved coming to the hospital and playing with a bear my sister gave me (that K named Roar). Yesterday when she didn't want to leave she decided she would willingly leave if she could take Roar with her. She now sleeps cuddled up to her teddy Roar instead of her mama. I seriously cannot wait until Roar gets the boot and mama can snuggle her baby again.
Saturday, January 18, 2014
Pro and Cons of Hospital Life
We all know being in the hospital is lame. Besides the obvious like being cooped up in a teeny tiny room (especially since it has been sunny and warm in my corner of the world), not having any privacy, control, or loved ones there are other cons that I forgot about since last time I was in the hospital. However, ever the optimist, there are a few perks to the hospital life (and it is not the "free" food). Here is a quick list of my random personal pros and cons to my current hospital stay.
Cons:
Cons:
- Having an audience for treatments: Don't get me wrong I like the RTs, but I always find it awkward to have someone watch me while I cough my brains out, turn red in the face, and spit in a cup.
- Pooping: It happens to all of us, but why oh why does someone always walk in 22 seconds after I go number two? I mean, really?!
- Sleep: Between patients screaming down the hall (dementia patients?) and nurses coming in the room in the middle of the night to the carts being rolled around outside the door I just can't sleep. In fact, I am pretty sure I slept more the few weeks after my daughter was born and I nursed her every 2 hours than I have slept in the past four night.
Pros:
- No Responsibility: I find home IVs somewhat exhausting. Waking through the night to do infusions, setting timers for meds, making time for therapy all while cooking, cleaning, and being a mom. It is nice to have someone else keep track of times and meds and therapy.
- Selfishness: When you become a mother you lose the right to be selfish. You have another human who depends on you 100% so you often come second or third or fourth. The nice part about being in the hospital is that everyone, including yourself, is focused 100% on getting YOUR health back to where it needs to be.
- Improvement: I am finding that I am feeling better much faster than when I do home IVs, but that is probably because I do my Vest 4x/day for 30 minutes plus percussion 4x/day for 20 minutes, and I bike 2-3x/day for 30 minutes. That is about 4 1/2 hours of airway clearance (not including nebs and meds) a day. There is no way I would get that type of therapy at home, but shhhh, don't tell my doc.
Thursday, January 16, 2014
Locked Up
Saturday night I was suddenly jolted awake by a sharp stabbing in my left lung. I frantically was gasping for breath, but it seemed that each breath I took brought on excruciating pain making it difficult to breath at all. I climbed out of bed, crawled to the living room and rolled into a ball and tried to decide what to do next. K was sound asleep in the other room and my husband was at work until 4 in the morning so I felt stuck in the house, but was worried I may have collapsed a lung and needed to go to the ER. I called my parents to come to the house thinking I would be going directly to the ER and needed someone to stay with Kaylee. While I waited I called the on call doctor to get his advice.
As I waited for my parents to arrive the pain started to subside slightly, the panic and fear started to ease and I realized that I recognized this pain. The stabbing, sharp pain that comes with every inhalation, the feeling of being unable to catch your breath, the crazy PAIN all point to my old friend, pleurisy. In order to avoid exposure to the flu I decided to wait until the on call pulmonologist called before going to the ER because Pleurisy is not necessarily an emergency situation.
The pulmonologist never actually called back and I eventually fell asleep so the next morning I decided to try calling again. Thankfully, this doctor called back right away and agreed that my symptoms pointed to pleurisy and told me to go to clinic on Monday to have the CF doc check it out. I have had pleurisy twice before and my doctor always prescribed oral meds, motrin, and increased physio and hydration. I figured this time would be the same.
At clinic, the doctor was very concerned. He told me that he was sure I had plugging which is what was causing the pain. He felt that with how hard my last year has been in addition to this current plugging he really wanted me hospitalized. He explained that in the hospital they could give me more CPT, more hydration, and more rest than I could at home being a mommy. As hard as it was to agree to hospitalization I knew that he was right. My husband can't take 2 weeks off of work to take care of K and there is no way I could possibly do as much at home caring for a toddler as I could if I was trapped in the hospital.
I keep reminding myself 3 or 4 days away from K now will hopefully make me a much better healthier mommy that will be around longer to watch her grow up. I have been in here since Tuesday night and my heart is breaking being away from my daughter, but I understand that sometimes CF pushes its way to the front of our lives, demanding that it get all our attention and care. At this moment in time I need the extra care, I need this time for CPT, I need to get better for her, for us.
As I waited for my parents to arrive the pain started to subside slightly, the panic and fear started to ease and I realized that I recognized this pain. The stabbing, sharp pain that comes with every inhalation, the feeling of being unable to catch your breath, the crazy PAIN all point to my old friend, pleurisy. In order to avoid exposure to the flu I decided to wait until the on call pulmonologist called before going to the ER because Pleurisy is not necessarily an emergency situation.
The pulmonologist never actually called back and I eventually fell asleep so the next morning I decided to try calling again. Thankfully, this doctor called back right away and agreed that my symptoms pointed to pleurisy and told me to go to clinic on Monday to have the CF doc check it out. I have had pleurisy twice before and my doctor always prescribed oral meds, motrin, and increased physio and hydration. I figured this time would be the same.
At clinic, the doctor was very concerned. He told me that he was sure I had plugging which is what was causing the pain. He felt that with how hard my last year has been in addition to this current plugging he really wanted me hospitalized. He explained that in the hospital they could give me more CPT, more hydration, and more rest than I could at home being a mommy. As hard as it was to agree to hospitalization I knew that he was right. My husband can't take 2 weeks off of work to take care of K and there is no way I could possibly do as much at home caring for a toddler as I could if I was trapped in the hospital.
I keep reminding myself 3 or 4 days away from K now will hopefully make me a much better healthier mommy that will be around longer to watch her grow up. I have been in here since Tuesday night and my heart is breaking being away from my daughter, but I understand that sometimes CF pushes its way to the front of our lives, demanding that it get all our attention and care. At this moment in time I need the extra care, I need this time for CPT, I need to get better for her, for us.
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