I had a "flare-up" last night and it was absolutely horrific. At the beginning of it, I was so sure I was going to be hospitalized that I packed my bags of things I would require/desire throughout the duration of a hospital stay. I figured that I may as well do it while I felt like I could still stand and keep composure, because with infections things often go downhill at a rapid/daunting pace.
My temperature started to rise, I had that unmistakable cramping in my legs, redness appeared, and my buttock area was more painful than usual. I mustered up all of my energy and made my way to the downstairs phone to call my dad at work. Using a phone upstairs was out of the question, because I did not want my mom to hear me and get alarmed for potentially no reason. I called my dad, and all of a sudden tears were running rampant down my fatigued face. "I don't want to do this anymore...I don't think I can do this anymore,...I've tried so hard to be healthy...I just can't..." I cried into the phone. My dad tells me he is calling my mom on her cell phone; never one to play around in a potentially serious situation, he did just that. By the time they were finished talking, I was nestled under my blankets in bed, shaking dramatically. I felt so defeated; I only had two more days of my antibiotics, which I had been on for several weeks now. What was it going to take?
My mom came into my room shortly thereafter and we decided to see where things were at in about an hour (without taking Advil and whatnot). I wasn't in a vicious amount of pain yet, or else it would have been a different story and I would have been on my way to the ER immediately. The pain did not progress, and my fever went down. The cramping in my legs slowly but surely dissipated and the fiery red reverted back to a vascular purple.
Don't get me wrong, I still felt "sick". Or rather, I still feel sick. However, those overt symptoms have somewhat disappeared and now I just wait. I wait to turn either one of two ways; perhaps things will get better from here, or maybe they won't. That is part of why this condition is so incredibly psychological, it plays with your brain in unimaginable ways. By the way, flare-ups are not uncommon in the Klippel World. In fact, they are rather common and some patients experience them on a somewhat frequent basis. Last night was a surprise because it has been a while since I have experienced a "flare-up." Generally (at least in recent years), my body just goes all the way and doesn't stop until I am inpatient hooked up to a cocktail of antibiotics.
For now, I can breathe (albeit heavily), but for how much longer?
- A
My temperature started to rise, I had that unmistakable cramping in my legs, redness appeared, and my buttock area was more painful than usual. I mustered up all of my energy and made my way to the downstairs phone to call my dad at work. Using a phone upstairs was out of the question, because I did not want my mom to hear me and get alarmed for potentially no reason. I called my dad, and all of a sudden tears were running rampant down my fatigued face. "I don't want to do this anymore...I don't think I can do this anymore,...I've tried so hard to be healthy...I just can't..." I cried into the phone. My dad tells me he is calling my mom on her cell phone; never one to play around in a potentially serious situation, he did just that. By the time they were finished talking, I was nestled under my blankets in bed, shaking dramatically. I felt so defeated; I only had two more days of my antibiotics, which I had been on for several weeks now. What was it going to take?
My mom came into my room shortly thereafter and we decided to see where things were at in about an hour (without taking Advil and whatnot). I wasn't in a vicious amount of pain yet, or else it would have been a different story and I would have been on my way to the ER immediately. The pain did not progress, and my fever went down. The cramping in my legs slowly but surely dissipated and the fiery red reverted back to a vascular purple.
Don't get me wrong, I still felt "sick". Or rather, I still feel sick. However, those overt symptoms have somewhat disappeared and now I just wait. I wait to turn either one of two ways; perhaps things will get better from here, or maybe they won't. That is part of why this condition is so incredibly psychological, it plays with your brain in unimaginable ways. By the way, flare-ups are not uncommon in the Klippel World. In fact, they are rather common and some patients experience them on a somewhat frequent basis. Last night was a surprise because it has been a while since I have experienced a "flare-up." Generally (at least in recent years), my body just goes all the way and doesn't stop until I am inpatient hooked up to a cocktail of antibiotics.
For now, I can breathe (albeit heavily), but for how much longer?
- A
Hello Arianna,
ReplyDeleteI have KTS as well. Right arm, left leg and my face. Thank you so much for sharing your stories and posting pictures. You are a very beautiful person inside and out and I really appreciate how open you are about yourself. Sending you KT hugs!! Carmina
Girl I feel your pain when my leg starts swelling/hurting and fevers I get so mad and say again because I really do not want to go in and get stuck with IVs and blood tests for a week or 2 then recupe..., I am 47yo and have had yearly multiple infections since I can remember(5yo).
ReplyDeleteUp until about 27yo when I got serious infections(Left limb/buttocks) my immune system was stronger and I could at times just sweat it out at home and recover and others I'd have to get hospitalized, but since then(and a kidney failure due to KTS infections and now take immunosuppressives because I've had a transplant),100% of the time when I get infections I need to go in and get treated with antibiotics and intravenous pain meds because staying home sweating it out does not work for me anymore...I just get more ill until I am sepsis and that only takes a few days to get that bad if I don't go in. So I have to go in as soon as my leg gets red in pain and a fever. But I'm stubborn and I don't always go in promptly and end up sepsis which is my bad and can be deadly if not treated.
I've had about 150 infection episodes(and counting) and out of that 150 I had to be hospitalized over 100 times(and counting). I use to be able to work and out of every year of work I needed to be hospilized 2-3 times and be off work a 2 weeks to a month each episode but now I get sick easily and can't even work a month then get infections. So now I am on perm disability .
I am saying all this to say although having KTS sucks if your episodes are not as frequent you can still do anything you want until you can't. My main downfall I contribute that to my lowered immune system to where if I even sit for 4 or more hours a day my leg gets infected real quick. I am now only able to workout only upper body and up until about 2003 I was able to ride a bike to workout my leg/s but not weights and up until 2000' I did martial arts.
l'm like you I try and be healthy but it still doesn't keep me from getting sick but it does make you feel good in between. KTS is one of those situations you just go with the flow. I had a good infectious disease doctor from the hospital and before he recently retired he wanted to try a drug Sildenafil(aka Viagra), not for that lol. He said he read about that drug help in reducing some swelling condition for the lungs and he wondered if that would help with my leg swelling and it did.
I wonder if I had taken this drug before my leg swelled so much I had to get it debulked if it would have prevented the need for surgery. Maybe someone will try it and will not need a debulking surgery in the future. You don't want that because debulking a large mass is painful and a year process of healing and rehabilitating. And also the bulk will get so big(in my case upper back thigh) and fluids will start draining from it and that in itself is a bad trip.
Ask your Dr. about that it may work for you or anybody else who reads this. Oh yes since I can't walk/stank much anymore now I use a wheelchair to get around/shop and use the wheelchair as my cardio workout doing laps around a lake in Golden Gate Park.
Sorry for all the rambling to whoever reads this I've had 47 years so far with this condition and it's hard to put it in short.
I forgot to mention about the antibiotics, when I was even a kid I use to think why am I taking oral antibiotics after a hospital stay when I felt good and the doctors said I needed it, but in my heart I knew I didn't need it to but I took them because the Docs said so. And with the my Infectious Disease Doctor(only had him the past10 years until he retired).
ReplyDeleteI asked him about that and we did a test, I took his prescribe oral antibiotics after a hospitalization, then we tested me taking nothing after a hospitalization and we determined that there was no difference in the length of time i stayed out of the hospital with post hospital antibiotics and not taking post hospital antibiotics. So now I don't need to take home antibiotics,
I wish I had a smart Doc and one who listened to my concerns when I was kid, it would have saved me from taking tons of post hospital antibiotics and possibly helped with me not getting immune to antibiotics and not continue to go up to the more potent IV antibiotics, because now I am on the 2nd(Meropenem) most powerful antibiotic in the world, one step away from the last and most potent antibiotic and after that there is will be nothing that will fight my infections. But as I said I probably would not be on the 2nd most powerful if I didn't keep taking post hospitalization oral antibiotics. Just my uneducated opinion.
Whoever is also reading this and they keep sending you home with antibiotics...ask your hospital discharge Doctor to do the same test as I did, see if there is or is not a difference in the time you stay out the hospital when or when not taking a post hospital antibiotics.
Thanks for reading!