My husband has double delta f508 mutations but has managed to make it to the age of 30 without having to have IV antibiotics or step foot in a hospital. I think we both prefer to think of him as not being sick. Well, around his 30th birthday when he started orkambi, his numbers did a nose dive and now he is entering the hospital on Wednesday. I am having a bit of a tough time wrapping my head around this and I'm sure he is too. He hasn't even told the people at work he has the CF. So, tell me about hospital visits. They really are a good thing to get his numbers back up? Am I right? They don't like signify the beginning of the end for his health. This can be a good experience, right? 2 week vacation of playing video games? I know he really didn't want to go to the hospital. We have 3 young children (adopted ages 4,6,7). Neither of us have any idea what to expect for the hospital. Help please.
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Husband in the hospital for the first time at age 30.
- Thread starter Pebbles8
- Start date
Aboveallislove
Super Moderator
Just bumping you in case others can give you a play by play of what to expect first time in hospital.
T
The Dot
Guest
I do not see any responses from any CFers, so I will chime in. I am part of the CF medical team - an RT. The goal is to get him on IV antibiotics as soon as possible, then try to isolate the "bug" that is actually causing all his issues. Once this is known, they can fine tune the antibiotics and send him home within a few days, so long as he has a positive response to the antibiotics. While there, he will get a chest x-ray and may do pulmonary function testing close to discharge. At our hospital, CFers are allowed to order as much food as they want and are given "passes" worth $10 each to go to the cafeteria and choose more appetizing foods. If he goes out of the room, he will need to wear a mask. When in his room, all medical personnel should wear gowns and gloves to protect both him and other patients from cross contamination. He will see the RT at least twice daily for the usual regime of respiratory treatments (nebulizers and airway clearance - usually a vest). The RTs here try to reinforce home cleaning habits of the nebulizers by demonstrating with our equipment in the rooms, however some equipment is just disposed of after each use. Hope that helps - and hope others give you more of a patient-centered response.
I've yet to have a hospital stay, but I'll speak of my siblings' experiences for their hospital visit. My oldest brother's first hospitalization was when he was a freshman in High School. In the 25 year since that first visit I believe he had only been re-hospitalized 2-3 times. His visits seem to turn him around pretty well.
My youngest brother had his first hospital stay in 2012 (he was in his mid-twenties). He ended up admitted a couple times throughout that year. Whatever bug he caught wasn't treating him well and it took a few tries to get it all cleared out. Additionally he was burning the candle on the other end trying to finish up college. In the three years following he's done well health wise: no hospital stays, able to work full time, and playing in a rec soccer league.
So this isn't the "beginning of the end" but just a hill to climb. To me the first hospital stay is a fear of the unknown and fear of the social implications of not being able to hide CF. Those fears scare me but two weeks of video games and rest does sound very appealing at times (especially weeks where I just end up completely exhausted from work and life).
My youngest brother had his first hospital stay in 2012 (he was in his mid-twenties). He ended up admitted a couple times throughout that year. Whatever bug he caught wasn't treating him well and it took a few tries to get it all cleared out. Additionally he was burning the candle on the other end trying to finish up college. In the three years following he's done well health wise: no hospital stays, able to work full time, and playing in a rec soccer league.
So this isn't the "beginning of the end" but just a hill to climb. To me the first hospital stay is a fear of the unknown and fear of the social implications of not being able to hide CF. Those fears scare me but two weeks of video games and rest does sound very appealing at times (especially weeks where I just end up completely exhausted from work and life).
I was 36 when I had my first hospital stay. My next hospital stay was five years later, so this isn't necessarily the beginning of a trend. Results vary by person and the type of infection, but hopefully, the treatments will help your husband to get his lung function back up in 10 days to two weeks.
Some programs will let you go home after a week and finish the IV meds there. I much prefer this because it's more comfortable, the food is better, and you have less chance of infection.
In terms of work, I didn't tell my employer about my CF until my first infection. I was fortunate, because they were very understanding.
Make sure your husband has plenty of things to entertain him. The first few days are usually pretty busy, but after that he may have long periods of time. The drugs often make me very sleepy, so I do usually sleep a lot more while in the hospital.
I don't enjoy hospita stays, but they're worth it if I feel better when I come out. I hope his stay goes well.
Some programs will let you go home after a week and finish the IV meds there. I much prefer this because it's more comfortable, the food is better, and you have less chance of infection.
In terms of work, I didn't tell my employer about my CF until my first infection. I was fortunate, because they were very understanding.
Make sure your husband has plenty of things to entertain him. The first few days are usually pretty busy, but after that he may have long periods of time. The drugs often make me very sleepy, so I do usually sleep a lot more while in the hospital.
I don't enjoy hospita stays, but they're worth it if I feel better when I come out. I hope his stay goes well.
My first hospital stay happened when I was 14, about to turn 15. From then on, for four years, I was in the hospital every 3 months. One love of my lung was just extremely infected, and I'd end up coughing up large amounts of blood. After I had that love removed, my hospital stays became more for "maintenance," meaning my lung function had started to decline, and will went in before it could fall too much. That usually happened twice a year. When I started growing MRSA two years ago, my hospital stays really increased because we just couldn't get the infection under control. So it's definitely not the beginning of the end. I consider them road bumps on an extremely long highway.
As for your other questions, I use my hospital time to knit and read. I've been known to finish two books and start a third all in one day. I knit blankets for my family when I'm there. I'm also going to school online right now, so I use the time to get ahead in my schoolwork. I basically use hospital stays as a way to treat myself; I have nearly unlimited time to focus on things I want to do (knitting/reading) and things I need to do (getting healthy) without having anything else to distract me or focus on.
As for your other questions, I use my hospital time to knit and read. I've been known to finish two books and start a third all in one day. I knit blankets for my family when I'm there. I'm also going to school online right now, so I use the time to get ahead in my schoolwork. I basically use hospital stays as a way to treat myself; I have nearly unlimited time to focus on things I want to do (knitting/reading) and things I need to do (getting healthy) without having anything else to distract me or focus on.
My 1st hospitalization was at age 31 -- due to an episode of Hemoptysis (coughing up blood.) Back then adults were still treated at Boston Children's Hospital. My roommate was a 4 year old with Diabetes who was learning to get insulin injections. It was definitely not a restful visit in any sense! My next visit was 2 years later under less harrowing reasons and I got a "double single" because adults were no longer allowed at Children's. Since then, I've had 4 visits at Brigham & Women's where I've always had a private room due to their infection prevention protocols. My visits have all been for 4-5 days while I got my PICC line and they evaluated the drug levels. I'd then be sent home to do the "cleanout" for 2-3 weeks longer. My last treatment was 100% outpatient with the exception of placing the PICC which was done in interventional radiology. The food is always great, and I get a treadmill in my room to keep up my cardio.
Your husband's hospitalization definitely does not indicate a decline. Each of us is different, and tune ups/Cleanouts (whatever your preferred term is) can be really helpful. I usually don't realize how sick I was feeling until I get my IVs and then feel so much better. With that said, I just went for my clinic visit today and am most happy my #s were stable and I do not have a planned treatment in the near future.
Wishing your husband good health!
Your husband's hospitalization definitely does not indicate a decline. Each of us is different, and tune ups/Cleanouts (whatever your preferred term is) can be really helpful. I usually don't realize how sick I was feeling until I get my IVs and then feel so much better. With that said, I just went for my clinic visit today and am most happy my #s were stable and I do not have a planned treatment in the near future.
Wishing your husband good health!
Thank you for all the comments! Kevin entered the hospital Wed mid morning. He actually didn't really think he was doing very badly based upon how he felt. He was getting his fastest 5k times ever (~31 minutes) and felt in great shape. But his numbers had declined from upper 60's to 49 so I'm glad he is getting that taken care of. Although I am afraid of cross contamination between patients. He is in a HUGE single room and raving about the food. I found the room stuffy but he didn't seem to mind. Visitors under the age of 14 aren't generally allowed but they gave him a special pass for our kids to be able to come visit him. So far I have only brought the youngest because the older boys haven't been in the most patient, flexible moods after long days of school. The idea of a PICC line seems so disturbing to me. I am a little concerned about the hosptial care. Kevin has great veins but the PCA has been having trouble sticking him so then I start thinking if she is incompetent at that.... Is she taking hygiene stuff seriously?
Ever since he went on orkambi, he has had post nasal drip and his kisses tasted like mucus. Hopefully this will help with that situation.
Ever since he went on orkambi, he has had post nasal drip and his kisses tasted like mucus. Hopefully this will help with that situation.
Aboveallislove
Super Moderator
I'm wondering f orkambi s cleaning out his sinus? Hav they scanned those lately? Hope it goes well! Prayers
Thank you for all the comments! Kevin entered the hospital Wed mid morning. He actually didn't really think he was doing very badly based upon how he felt. He was getting his fastest 5k times ever (~31 minutes) and felt in great shape. But his numbers had declined from upper 60's to 49 so I'm glad he is getting that taken care of. Although I am afraid of cross contamination between patients. He is in a HUGE single room and raving about the food. I found the room stuffy but he didn't seem to mind. Visitors under the age of 14 aren't generally allowed but they gave him a special pass for our kids to be able to come visit him. So far I have only brought the youngest because the older boys haven't been in the most patient, flexible moods after long days of school. The idea of a PICC line seems so disturbing to me. I am a little concerned about the hosptial care. Kevin has great veins but the PCA has been having trouble sticking him so then I start thinking if she is incompetent at that.... Is she taking hygiene stuff seriously?
Ever since he went on orkambi, he has had post nasal drip and his kisses tasted like mucus. Hopefully this will help with that situation.
My first hospital stay was at around 4-7 (sinus issues), but the first one I really remember was at 16. It was a big scary, I remember crying a bit, but it just turned out to be something I had to deal with. My next one wasn't until late teens (although i prob should of went in sooner) and since then its been between 1-2 a year. I have yet to receive a port but it may be coming. So far so good.
Not being hospitalized until 30 though is quite good. If you're lucky maybe he just caught a pretty bad bug and once they clear it up he will have another 30 years before he has to go in again. So no, it is not the beginning of the end. It is a long road and no sense in really asking what if. Even if his hospital stays become continuous you guys still have a LONG ways to go. Advice I would of given my 16 year old self.
Not being hospitalized until 30 though is quite good. If you're lucky maybe he just caught a pretty bad bug and once they clear it up he will have another 30 years before he has to go in again. So no, it is not the beginning of the end. It is a long road and no sense in really asking what if. Even if his hospital stays become continuous you guys still have a LONG ways to go. Advice I would of given my 16 year old self.
imported_Momto2
New member
wow..........I'd had collapsed lungs and several cases of pneumonia and bronchitis before I even turned 1.
Pebbles8- Orkambi is not for everyone. A significant portion of the ddf508 population has a definite negative reaction to it which reduces lung function. When I reported my difficulties, Vertex stopped calling me and doing followups even though I stayed on the meds for weeks afterwards. They did NOT want to know. Because hey, if you dont know, it doesnt have to be included in the statistics.
Pebbles8- Orkambi is not for everyone. A significant portion of the ddf508 population has a definite negative reaction to it which reduces lung function. When I reported my difficulties, Vertex stopped calling me and doing followups even though I stayed on the meds for weeks afterwards. They did NOT want to know. Because hey, if you dont know, it doesnt have to be included in the statistics.