I went to clinic yesterday after 10 days of IVs and I sort of wish I didn't bother to go because it was one huge disappointment. My weight is down to 118lbs. At 5'4" this isn't horrendous, but for me it is pretty bad. I usually weight 125lbs so the drop was pretty significant. I will admit that several days went by while I was sick in bed that I didn't eat anything. At all. So I knew my weight would be low, but I still hate seeing any numbers below 120.
My PFTs are down by 7% which is pretty bad after 10 days of IVs and because I don't feel like at this point I have a lot to spare. I never got my PFTs done while in the middle of the flu, but I am curious what they would have been...I have a feeling I would have been horrified if I had seen those numbers. I was pretty terrified that my doc would come in and admit me to the hospital since everything looked so grim. When he came in he asked me how things were going. I explained that I was sick in bed for 2 weeks straight (which he knew). That I hadn't been eating, exercising (not even walking because I had no energy), and felt as if my lungs were full to the brim, BUT after 10 days of IVs my mucus was getting lighter and it was getting much easier to clear out. I also told him that I knew my body wasn't ready to stop IVs based both on my numbers and how I felt. He said that swimming prior to getting the flu probably helped me more than I can know even though I feel disappointed with my numbers and slow recovery. He wants me back to exercising as soon as I can. We decided to do one more week of IVs and then we will reassess. So no hospital admission for me yet which was a huge relief.
I feel a lot of pressure to get my PFTs as high as I can in the next 6 days because I am terrified of what will happen if I don't. I know very little of my recovery is in my control at this point which makes it much harder to deal with. I am doing all my treatments, doing all my meds, and even have IVs so there seems to be very little more I can add on to my daily health care. I feel this intense pressure to do better, get healthier, raise my PFTs, but I also feel like I have no idea how. I need to find something I can do to feel like I can control. I have decided to gain weight since this is somewhat in my control. I know my lung function is always higher when my weight is good. I am also going to try to exercise as much as my low energy will let me. The weather should be beautiful this week, in the high 70's, so I am thinking I can manage a walk everyday for the next 6 days. I find this disease can make you feel defeated very easily. I think back to 3 weeks ago when I swam a mile with ease and came home to take an hour walk with my daughter. Now the thought of walking up the stairs is overwhelming. It is amazing how quickly life can change. I just hope that things can return to how they were 3 weeks ago.
**EDIT: I should add that my flu symptoms are pretty much gone. I no longer get fevers and I actually get up and get dressed and I even managed to put on makeup yesterday. So I guess it is not bad news all around, just bad news mostly around**
Hi there! I just wanted to offer a little encouragement (I know I can always use a little after a disappointing "sick" visit at clinic). I'm so sorry you're not feeling so great. :/ I TOTALLY understand the sense of defeat that comes from feeling so healthy and active one day, and then after just a week or so of being sick finding yourself close to tears because you left something upstairs and the thought of climbing back up to get it is almost too much. Hang in there!! You are doing lots of good things for your body and lungs right now, plus it sounds like your lung muscles are good and strong from all that pre-illness exercise. I'm currently finishing up an extended week 4 of my IV antibiotics, so I can also sympathize with the frustration of doing everything you're supposed to do but not healing up as quickly as you'd hoped - but remember, you're doing what you need to do, and your body is healing itself, albeit slowly.
ReplyDeleteI hope that you'll be feeling better again now that all those awful flu symptoms are subsiding, and that some good news is on its way! :)
Thank you for the encouragement! I really do need it right now. Sometimes I think the emotional toll can be as rough as the physical. I am sorry you are an extended IV course. It is so frustrating to expect to be done and find yourself with another week (or more) of IVs. Thanks for the reminder that my body IS healing. I guess I need to be a little more patient with it!
DeleteOh my heart breaks for you since I know how frustrating it is to just want to be better already! =\ I think you're right in that this disease makes us feel defeated extremely quickly sometimes-- for sure! You can be doing everything in your power and then some, and still get sick.
ReplyDeleteAfter getting sick for the 3rd time in a short month an a half(after just finishing up 3+weeks of IVS!), and many phone calls back and forth to the CF clinic, they shed light on the fact that this winter has been brutal for everyone at clinic. Apparently in January they flew another adult CF doc in because our clinic was SO overrun with sickness that our 4 adult doctors just couldn't handle all the extra sick visits and inpatients & regular patients!!
I also think this diseases forces us to walk a fine line. How much exercise is beneficial when we're sick, vs. what is 'over-doing it' and set us back? It's so tough to say! We just have to trust that after all this time, we know what we're doing and believe in that fact that even like Breath.Love.Justice said, our bodies are healing themselves, albeit slowly.
I really hope that things start to turn around soon. I am insanely jealous of your upcoming weather. We've been having quite the cold winter on the East coast this year and the thought of mid -70's?? Hopefully you'll be able to get out and enjoy that sunshine and who knows, maybe that boost of extra vit. D will do some good. =D
I am so sorry to hear you have had a rough winter! Ugh, it is so hard being sick after IVs. Talk about frustrating! It is comforting to know that we are not alone in having a tough winter. Can it be summer yet?
DeleteYou are so right about exercise. I want to clear my lungs, but allow my body to heal. Because of my skin reaction swimming is out for a while, but I have been walking which I feel is usually pretty safe as far as energy reserves..
We are spoiled with this weather, but I am worried it is just a huge tease and it will be rainy and cold again next week!
Well IH I can only wish you to get better :) As far as this disease it does send messages to us and most of those messages are negative at times. But I have been in the mindset of finding a positive in everything. I am trying to think of a positive in this situation for you. The fact that you did start swimming has to be a big plus.
ReplyDeleteI think you should another VEST session in there because that may move that mucus out and you can control that. If you just had 10 mins that might help alot.
I know you are a fighter and you will get back to your 100% self. I can only hope and pray that it is going to be soon cyster!! Keep fighting!!!
Thanks. I have been trying to Vest as much as possible, but it sure is hard to chase a little one while vesting! I am also increasing some of my nebs. Hopefully it will all pay off!
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