I really just need general advice on what to do with myself.

[Domv06]

I think giving a long backstory of how I got here will just be a lot of excuses for the situation I put myself, I'm just going to tell you where I'm at now and I am just looking for advice on what to do next.

I'm 24 years old and I have CF. I have put myself in a bad spot. I start a new, very good job today. The problem is I am coughing up blood after being sick for about a week. This typically happens to me as I get healthier, the infection clears, but then the blood comes. I would normally consider going to the hospital, but I do not have insurance, I am starting this job and can't afford to be hospitalized because of timing with me starting, and I do not currently have an established CF doctor in the area (I just moved). I am also running low on medication. Another complication I just encountered which is new for me is fresh blood in my stools after abdomen pain. I have had stomach ulcers but it was 6 years ago and call it an uneducated guess but this feels way lower in my abdomen than my stomach. I also have a family trip on Thursday in which my parents paid to fly me out to Colorado to meet them for 5 days.

Given the information, what the heck should I do with myself?

I feel like I can't afford to be hospitalized because of my new job.

 

[Aboveallislove]

I am so sorry you have so many things to figure out and deal with. These are my thoughts: I'd call your parents and tell them that your health is fragile and you need to go to the doctor and ask if they can fly out instead. They love you more than anything and whether they respond well or with anger or disappointment, they love you more than anything. If you are low on medicines I'd also ask them to help you. If this is the consequence of bad decisions--fess up and make a real commitment to turn your life around. They love you more than anything. Call the CF clinic and ask for an appointment ASAP or go to ER if need be. Maybe you can get admitted now and start IV so you can get home to start you job on Monday. OR call your boss and tell them the situation and that you need to delay your start date 2 weeks. If they respond well you know it is a good fit, if not you know it wouldn't work even if this emergency came up 2 months from now. Does your State have special health "insurance" for CF? The CF clinic's social worker should be able to tell you. Will say some extra prayers for you.

 

[Printer]

In the United States, if you go to the ER and you CANNOT AFFORD THE MEDICAL CARE, it will be paid for you. Find the nearest CF Center and go to the ER at that hospital.

Bill

 

[CrisDopher]

You've got blood coming out of two places it's not supposed to be coming out of, and you don't know if you should go to a hospital? Are you nuts?? GO. You can't do ANYTHING - job or seeing parents - if you're dead.

 

[JennyCoulon]

You can always check into financial assistance to help with the cost of you going to the ER or admission. I would go to the ER right away also as they wont turn you away. Did you tell your new job that you have CF so they are aware about your check ups, etc? Like it was already said this job might be a good one but if they cant work with you than maybe it isnt worth it. You have to remember that ultimately your health is # 1 and if you dont take care of yourself you might not be around to have to worry about a new job and going to see your parents. I know it is kind of harsh but it is the sad reality of a CRers life. Good luck and keep us posted.

 

[welshwitch]

Here's what I would do.

You said this always happens when you're sick. Is this a serious issue? Coughing up blood doesn't sound good, but as we know it's pretty common for CFers. Is it bad enough to warrant hospital time?

If not, I would go to work, but cancel the trip. Not worth it. I would say your priority should be, health, work, vaykay. If you feel like you should be in the hospital, than obviously, go, and don't worry about work or what not. NOT WORTH IT. No job is worth having your health take a hit. If it's not a fit, so be it.

On the other hand, if this is a relatively minor issue that you think you can handle while you get the new job, healthcare, etc. in order, then do that. But it sounds like you've taken on a LOT and need to prioritize. I've been there, believe me.

Also, does your new good job not have health insurance? Good luck!

 

[TarHeelBlue2007]

Domv06: couple things...

(1) my biggest recommendation is to call your OLD CF docs and see what they think over the phone (granted, it's over the phone)...they should be able to find time to chat with you.
(2) not sure if this applies to you, but look into either COBRA insurance or getting onto your parents' insurance. The Affordable Care Act allows you to be on your parents' insurance (assuming they have it) until age 26.
(3) w/ regard to the blood, the biggest issue is how much...I've coughed up blood before, as have many of us. The difference is in how much...a few specks in the sputum are no concern, bloody sputum can be a concern, but cupfuls of blood is a problem. CF can also cause some constipation, which might explain the presence of some blood in your stool. Again, how much will really dictate how it should be approached.

this one is to Printer/Bill: actually, in the US, it works like this (Emergency Medical Treatment and Active Labor Act): an ER is obligated to stabilize you, and cannot turn away an unstablilized patient due to their insurance status. But, contrary to popular belief, they can definitely still bill you, and if you don't pay, they can seek to recover from you. Their requirement is to determine if you have an emergent condition, and if so, to stabilize you.

 

[Printer]

TarHeel:

Actually it is part of the COBRA Law. The hospital is required to stabilize you. They can bill you, however it is better than dying at home, in this case alone.

Bill

 

[JENNYC]

I would for sure if nothing else call your old CF team. If it were my child, I would want HER CF team that already knows her in on something this big along with the new CF team. If you are gonna stay there you should go get to know your new CF team even if you didn't have an issue. But definitely seek the advice from some CF team before you wait too long and damage is done that can't be fixed. Wishing you the best of luck!!! I hope everything works out the way you need it to!! And speaking as a parent, I would want you to get checked out ASAP. No matter how old you are, you are still their baby

 

[NoelA]

I think you should call the old CF center, too. You said you have bloody stools, as well? Lower bleeding (intestinal or colon) is bright red blood on the stool. A gastric bleed is a darker red or can be black. Lots of black is not good, but can be tricky sometimes because of supplements and foods that cause stool discoloration. Personally, the bloody stool and bloody sputum simultaneously would concern. That may be an ulcer upset, may be just the regular CF bloody cough, or it may be a big problem. You're probably going to need to go to a place that can do a sputum and stool sample and you might need an endoscopy. Don't wait and try to diagnose yourself! Please check in with a doc ASAP!

 

[isabella Mendoza]

i really just need general advice

So What happened DOMV06? Did you find a doctor? Did you call your old CF center? My kids both cough up blood every once in a while, especially my 22 y/o who has some liver involvement. Do you have liver problems? They can be treated, not to worry! But you need to know so you can stop the bleeding. Let us know! Isabella w/ w sons in their 20s w/cf living away from home too. (NEB)

 

[Domv06]

Hey guys, great advice and I really would like thank all of you for helping me out. Sorry it took so long for me to respond, between being sick, starting the job, and sorting everything out I have been very busy. To clarify a question the was sort of asked, a bit of "floundering" or "floating" as I like to call it is what led to this. not necessarily and BAD decisions, but maybe some reactive or lazy decisions, procrastinating. I went to work Monday and Tuesday and dealt with the coughing up of blood. There was only blood in my stool the one time and that could be a multitude of things as I have ulcer history, I just changed enzymes and I have just generally been sick. I actually only typically cough up blood once the infection clears most of the way but it is normally quite a bit of blood. My Tobi cycle ended on Monday so I actually haven't coughed up any blood SINCE Monday, but there is definitely still an infection and exacerbation going on. I got ahold of the local clinic and after talking with the coordinator they are having me come into the ER tonight, the timing works out perfect because I was able to cancel the family trip to Colorado so I already have some days off work to get my health straightened out. I will be going to the ER tonight and will probably go on a PICC or at the VERY least oral antibiotics, we'll see what they say.

Thank you again for all the motivation and advice, you guys told me what I already knew, but needed to hear from someone else... thank you a ton everyone!

 

[isabella Mendoza]

Thanks for the update Domv06! Its great to follow what happened to you. Please let us know how the ER visit went too. So, are you saying that the local CF clinic arranged for you to come to the ER so that you can get care, essentially, from the CF team but in the ER? That's awesome! Great problem solving. If the medications turn out to be very costly, send me your private email, you never know who may have extra. just sayin....