If it wasn't for bad luck I'd have no luck at all
Cystic fibrosis is one of the most horrible illnesses a person can get. I have seen what it does and I will never forget it. My daughter has it she's 40 years old and we all knew she had it since she was 27 years old. In one sense she's very fortunate that it did not start festering in her until that age
I take her to all her appointments at the cystic fibrosis clinic. It rips me apart to see what she's going through I've already been through it because my wife died from it 13 years ago. Anyone else have a child who's got it?
My heart goes out to you. I can hear how much all of this hurts you; I wish I could give you a big hug. It sounds like you and your daughter are very lucky to have each other, and I'm sure she appreciates your support more than you will ever know. I hope other community members will chime in and share their experiences as caregivers to their children with CF. In the meantime, I wanted to share some information with you. You have taken on a big job as a caregiver and supporting your daughter. Please don't forget to take care of yourself as well and ensure you have support for yourself. Remember, our community is here for you; reach out any time! Sending you strength and support every step of the way. -Beth (Team Member)
https://cystic-fibrosis.com/living/helpful-caregiver-tips
https://cystic-fibrosis.com/living/support-loved-one
And although your daughter is not newly diagnosed, I wanted to share this video with you as well:
https://cystic-fibrosis.com/videos/newly-diagnosed-advicethank you that information was helpful I appreciate it
thank you for your kindess and generosity its nice to have someone to help. It gets overwhelming at times especially when I dwell on whats hapening and whats going to happen, I hit a dead end of horribly painful feelings that I just dont know what to do with....if you can understand what im trying to say. I will check out the links you sent,
How are you doing today? I’m so glad your telehealth appointment went well! Here’s to hoping this is a step in the right direction in getting your health situated so you can be the best version of you for not only yourself but also your daughter & granddaughter. Sending you well wishes, positive thoughts & vibes! -Beth (Team Member) yes the telehealth did go very well it was a pharmacological visit she's prescribed me medication for my ADHD and for sleep I don't recall if I mentioned this before but I have a boatload of health problems that just popped up to April it's like the skies opened up and poured everything down on me. Out of everything the IBS-C is the worst because of the pains and the cramps it brings me to my knees. But they're nothing compared to my daughter's problem. I was over there Christmas Day and her being fresh out of the hospital for pancreatitis a few minutes after she ate some food she became sick it was a nauseous and sick feeling and resulted in vomiting. She said that happens a lot with her when she eats it either goes right down or she gets sick from it. I feel so bad for her her weight is down quite a bit I think she's down 25 lb from her top weight, that's 1/5 of her total body weight, at the doctor she has lost weight for 3 months in a row it's just an awful thing I'm sure many others know exactly what I'm talking about it's just awful, awful to watch this disease peck away at her bit by bit until it has its way and gets what it wants.... total concession.
One fact that I find fascinating is that out of 330 million babies born each year only 1,000 are born with cystic fibrosis it's true.
as of lately things could be a little better than they are. her FEV score is 58% and her FEV /FVC ratio 59% which is in the moderately severe category. She just got out of the hospital for pancreatitis her 6th six episode of it. X-ray over her lungs showed they are full of mucus, from coughing so long and so hard she has become pretty much urinary incontinent, something about it has weakened her pelvic floor muscles so much that she can barely hold in her urine, she's going for a pelvic floor physical therapy, she is now pre-diabetic and just got over having a blocked bile duct in here liver they went through her mouth with an endoscope and they put a wire down there and did something I can't remember right now what they did. reading through your response to Jill & see that you mentioned pancreatitis - my heart broke a little more. I have been battling issues with pancreatitis for almost two years now. I’ve experienced the endoscopes and had stents placed to help the bile ducts as well a few other procedures. If I’m being honest, it’s been the hardest two years. I cannot imagine how your daughter feels having to deal with that on top of battling other health conditions as well. Sending you both tons of hugs & positive vibes! -Beth (Team Member)
I'm sorry that you have to go through this Beth and believe me I feel so bad for you it's one of the most unpleasant things you can have I know because I had it three times in my life and I was hospitalized for each time. When I got it I remember being at the emergency room in absolute agony it's one of the worst pains I could ever describe I was begging the talk to every 2 hours for another injection of pain medication begging him and he gave it to me apparently they were supposed to give it more let's say 4 hours ' then when you go down and then when you get on the ward you they won't feed you you have to have clear liquids. My heart goes out to you.
I was begging the doctor How are you doing today? I know it's been some time since our last chat. My apologies; if I'm honest, I haven't felt that great myself. Knock on wood things are looking up as we move into this new year! How is your daughter doing/feeling?
Going back to our prior chat about good ole pancreatitis...I often refer to it now as the gift that keeps on giving. My initial experience with it sounds very similar to what you have shared. My first go with it resulted from a procedure I had done. I told the doctors and nurses while I was in recovery that I did not feel right, but sadly, they didn't take me seriously. I got discharged, went home for a bit, and was in an ambulance going back to the hospital a few hours later. The ER experience was probably one of the worst experiences I've ever had. Even though I went back by ambulance, I was forced to sit in the waiting room for over 3 hours in that awful pain, running to the bathroom to vomit every few minutes. When they finally took me back, I had a dreadful nurse who jumped to conclusions and wouldn't listen to me. I suffered sitting in the ER for hours before I saw a doctor who finally started me on medications and fluids. They told me I had one of the worst cases of pancreatitis they had seen in years.
I was admitted and spent 15 days in the hospital because my pancreas didn't get the memo to chill out. With no treatment for pancreatitis other than time, managing the pain, and flushing the fluids, it was all a waiting game. And with all the fluids I was getting, I had pseudo cysts form around my pancreas, which caused more problems. The pain was not easily managed, and there were many issues with nurses not keeping up with my meds, so I would fall behind with them not being on time, and the pain would continue to grow. Most of the last 2 years have been nothing but continuous scans and labs, hoping and praying for good results. There were many bumps in the road, and not only second and third opinions but also fourth and fifth opinions, in hopes someone could answer what was causing the continuous issues. Thankfully, it seems like I've finally found a good team, and they're open to thinking outside the box with treatment and have listened to me and my journey. I'd be lying if I said it was easy to keep a positive outlook on things, but I'm trying to be open and hoping for the best possible outcome.
But enough about me. Since we last chatted, I hope you've been able to schedule some additional telehealth appointments with your new doctor. Have you gotten any relief? If you're feeling up to it, please keep us posted!! Sending strength and support your way! -Beth (Team Member)
