first time on IVs

[rubyroselee]

Hi all,

Woke up in the middle of the night last Thursday morning coughing up blood. Totally freaked me out. I would have to say that's one of the scariest things about having CF. So called the on-call doctor who said to wait a few hours and talk to my CF doctor since it was almost morning. Since I had been having a lot of symptoms of an exacerbation prior to the hemoptysis, he thought IVs would be the best option for me. I didn't even want to fight it because I felt so sick at that point. So luckily I got a bed within a few hours and started treatments right away. I am on Meropenem and Amikacin for 2 weeks. I was sent home yesterday to finish the IVs at home and a home health nurse is helping with the PICC dressing changes, education, and blood draws.

So needless to say, this has been quite a learning experience for me. I am very thankful that I have not required IVs until now, at age 34. However, it also worries me that this may be the start of a decline. I know it's too early to know what the future holds, but it's gotten me a little depressed. I just don't want to make a habit out of this, but I know it's beyond my control.

The other issue I have is work. I am only allowed to take 10 days of sick time a year, and I've already sucked up 8 between this and my doctor's appointments. So, I went into work today and found that was a poor decision. I only lasted an hour or two and had to come home. I'm just so exhausted and the antibiotics are kicking my butt. Luckily my boss is allowing me to work from home until I feel well enough to come back to the office. And she is also allowing me to work shorter hours in the office so I can get back home to do my IVs on time. I did not tell my boss why I was in the hospital, but I did tell her I have treatments to continue at home for a couple weeks. I'm so hesitant to tell people about my CF and I'm not sure why.

Anyhow, the PICC is driving me a little batty since it's quite uncomfortable. And now my dressing is starting to itch too. I was pretty much confined to my bed today because I felt so incredibly tired, nauseous, and have no appetite. I think the meds are just messing with my system. I also feel quite dehydrated so I've been sucking back the water/drinks. Anyone have experience with those two antibiotics?
(IV)

I am just thankful that my lungs are feeling better because I really didn't realize how sick I was. I had been feeling bad for quite some time and putting off calling the doctor. It's sort of strange to me to be able to take a breath and not hear all sorts of noises and crackles

Well, any advice is appreciated as I go through this!

Thanks all

 

[Aboveallislove]

Hey Leah,
I am so sorry for all of this. I just wanted to send you a hug and two thoughts: First, given that you are ddf508, hopefully in a few months you'll be on Orcambi and even thought the FEV improvement isn't huge, it does reduce excerbations by like 40%, so hopefully that will keep you away from the need for IVs again! Re work: I'm assuming you are full-time and if your employer has 50 or more, then you will be able to get FMLA if an issue, but sounds like your boss is very thoughtful so hopefully you can continue to work with him/her on it. Hugs and prayers,
Love

 

[ethan508]

Sorry you're sick. That 1st round of IVs seems like it would be a steep emotional/mental hill to climb in addition to fighting the infection. It is a hill I'm scared to climb.

Do you have paid time off (vacation days) in addition to the sick days? I know that it sucks to use those when you are sick, but sometimes I think that is a part of dealing with CF. As mentioned FMLA or maybe going on short term disability leave (if available) might be a good way to get the rest you need. Don't spend so much energy trying to figure out how to work than you fail to recover and end up missing even more work.

Depending on the nature of your work and the understanding of your boss (which sound good), it might be good to set very clear and somewhat conservative limitations on your availability and production for the next week or so. Workers that try to be heroic (usually by hoarding tasks/responsibilities rather than load sharing) and fail are harder to deal with than those that commit to more realistic expectations.

 

[TreasureGoddess]

Investigate FMLA for sure, possibly an option to work remotely from home?

Also, please don't think this is a serious decline or the end of all things. I've seen so many posts over the years with those that have been lucky enough to make it years between IV's and worry when they need them. IV's are just a way to get your body back up to fighting shape. Once you're healing and feeling better, there's no reason to think it's the spiral to a horrid future. Most likely it will be more years again before you need IV's. HUGS!

 

[MichaelL]

Leah -- sounds like a very stressful experience for many reasons.

I've been on both of the meds that you're taking. They can really wipe you out, especially if you haven't taken them before as is your case. I often lose my appetite and feel exhausted when I'm on IVs. Amikacin can mess with your hearing and balance, but that's if you're on it for much longer than your two-week course. I think Meropenem is the drug that can make your lips numb, which is kind of freaky.

A lot of companies have short term disability that kicks in after ten consecutive sick days. That may help you in the short term, but not for future doctors appointments. The comments above are probably more helpful on this as I live in Canada. It's good that you have an understanding employer. I never told my co-workers I had CF until I started to have more frequent medical problems. After I finally did, they were quite understanding.

I had my first IV antibiotics at age 36. I didn't have them again for five more years, so I wouldn't worry that your health is now going to have a steep decline. Every case is different, but I wouldn't worry about this creating a pattern.

I hope you can get your job issues taken care of and focus on getting better. It really can be a lot of work on its own.

 

[welshwitch]

Leah, I'm sorry to hear about this. I had a very similar experience this past winter and it scared the crap out of me. I too thought it was the beginning of the end. I can say that it's been 4 and a half months and I feel great. The IV's did some wonderful things for me, even though it was an awful and frightening experience. They got rid of my PA. I got some of my sense of smell back (that has been crappy for years). Most of all I bounced back right away. I am now doing my 4 mile daily runs while still working full time, and have decided to do a 100 mile bike ride next June, just to say F-you to this disease. I am working very hard at planning for the future and not let CF bully me out of life. Stay strong.

 

[rubyroselee]

Thank you all so much. I appreciate the wonderful comments. You all made me cry! I think it's just been a tough week at home on these horrid meds. I spend most of the morning in bed fighting the nausea and fatigue. I know I will only have a few good hours this afternoon before I get sleepy again. I'm trying to stay positive knowing I'm halfway through the treatment. Just trying to take it day by day. I am looking forward to getting disconnected and maybe even starting up running again so I can avoid doing this for a long time! Your stories have helped me feel so much better knowing that I could possibly be very healthy for a long time after this. Thanks again!

 

[beautifulsoul]

Hopefully you're feeling at least a little better by now. That's pretty amazing that you haven't had any IV's until this point in your life! Mother to 2 boys! I hope to have kids one day. I'm still young enough Try not to think too much about the possibility of a downfall. Thinking too much leads to only negative thoughts. I've done plenty of it and it does me no good. I try to stay busy with art projects especially since I don't work. Even if you do start to decline there are so many new treatments out there today. Many more options than what we used to have!

I used to itch so much with the dressing, I had to switch to a different kind of tape. I hated it but I loved dressing changes just to get some air. Amikacin. Ugh. This drug ruined me. I needed a kidney transplant because of it and I became fully deaf because of it ototoxicity. Of course it doesn't happen to everyone but for every time the Dr. says that it happens to me unfortunately.

Hugs to you...