Time spent vs time gained

D

Dank

Guest
Hi Folks,

I'm going to attempt to be as least-negative as possible with this, in advance I am sorry if this reaches you, and you feel lost or helpless. I'm seeking out some insight to this problem I cannot resolve.

Short version of who I am: 26 years old, male, have an associates with a 4.0gpa, and worked as a Systems Admin previously to being let go during an acquisition so I'm currently unemployed. I have a nice apartment, girlfriend of about 15 months, awesome friends, and a fast car and motorcycle. I like to try to live as much as I can on my own terms.


Trying to get some opinions on how you feel about the time you spend in treatments, vs. the time you get back later in life. I suppose I could do some googling and perhaps find some metrics. I just know later in life I'm going to be spending a whole lot more than just 2-3 hours a day on treatments, and I'm just wondering if it makes sense or how you feel about it.

I've been labeled as something similar to "doesn't follow doctors orders", basically because I refuse to continue on medication without seeing results, or without seeing proof that it's going to be helpful. This mindset has come from several of the CF doctors here (at Johns Hopkins) telling me that the treatments i'm on "may help you later". And this upsets me greatly. I'm a computer guy, and I feel like we should be at a point in our lives where we should be able to efficiently control infections, and with help of nutrition stay out of the hospital. I know our bodies do a lot of work, and I just feel like science isn't keeping us and helping us out enough and it bugs me. I do see a lot of new studies all the time about new medications, but it seems like they are for very specific purposes that may or may not help me at all.

I just feel like I'm not getting ahead, and I'm then wasting the time I have now(being reasonably healthy), when later I'm not going to have the same amount of health and will require much more of my time to maintain. It pains me to think about it, was hoping for some advice from some older folks.

I fully understand the concept here, gain potentially years, slow the decline of the CF and the damage on the lungs, so therefore ideally the 'time' I have with moderate lung function and not severe is longer - that I understand. It's still hard to get behind the concept of "take this, it MAY help you". Does anyone else feel this way? Am I the only one who questions every medication, and questions every doctors orders? It's things like this that cause me to: my IGE level is in the 6000s, and has been since January. and the medication regimen is 30mg of prednisone and voriconizole. This is for ABPA. I'm trying my hardest not to be discouraged, but my IGE isn't dropping, and after doing my own research in addition to listening to my doctors, they don't really have many more options for this. I've been on this medication for going on 4 complete months now, with little to no change. (and full well knowing that the side effects of prednisone are significant over long periods of time)

They have sent me to an allergist to attempt to get me on Xolair, in hopes that by eliminating my bodies ability to get allergic reactions to Aspergillis, I will have an easier time dealing with it, internally. Problem is that I lost my insurance with my job, and so I'm waiting to perhaps see if I can find another job quickly. So anyways - back to my point - my doctors are probably some of the best in the country, and they prescribe medications and I question them everytime. And I have been taking medication when it makes sense or when I'm out of options, but I just don't feel like I'm progressing like i should be. And then I if I miss a day, my negativity feeds even more and I just lack the energy to want to continue taking these medications! I have been consistent over the last 4 months though, in an attempt to give it a try once more, this regimen of medications and treatments. I still don't make time for my HTS though, even now when I'm jobless its hard for me to accept spending an hour a day inhaling it.

Only time will tell... if the other medications and things progress me to feeling better or my IGE going down, or my lung function going up (was 70s in December, got sick and now im tryng to regain that again).

Do you feel like you're getting anywhere with your medications? Do you put full trust in your doctors?

Help me be less negative regarding the time invested, because I see it as time wasted.

I sincerely hope my negativity is not contagious, and there are enough people who read this and provide insight and maybe it can help others who feel this way too.

Thanks in advance,
Dank


 
H

hillthekhore

Guest
As a person with CF who is in medical school, I have to tell you that there is absolutely no way to know if a particular treatment will help you. The medical establishment makes guidelines for treatment based on what works best for people with particular diseases in general, but that does not mean that a particular treatment will always be benefit the individual.

Particularly in mild cases, there are many therapies that have low risk. Prophylactic oral antibiotics, for example, have relatively few side effects and have been shown in many cases to help. Admittedly, CF centers tend to be extremely aggressive in their treatments, mainly because that's how they see the best results.

I can't question your actual regimen of drugs because I'm not knowledgable and don't think it's a great idea to give medical advice to strangers over the Internet, but always question every decision your doctor makes about your treatment. Ask "Why is this treatment indicated?" "What are the other options for treatment?" "What is the intended effect of this medication?" It's the only way to learn more about the disease in general and get more insight into how you differ from other patients.

Do not be discouraged by the label of noncompliance; it's often either a lazy physician's way of avoiding spending time on patient education or an unknowledgable physician's way of hiding his ignorance. It's not a reflection on you, and it's reflective of a paternalistic bias in medicine that is being fought against tooth and nail by incoming medical professionals.

Good luck.
 
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