So today I'm letting things get to me.I'm getting a little(or a lot) frustrated with my lack of exercise tolerance and my docs continuing to tell me my tests are normal.I in no way feel normal.I had an exposure and then couldn't breath normally.One and one it's two to me.How can I trust them to get me to transplant and save my life if I can't even get them to see my illness.My gerd and throat inflammation just skews my self diagnosis of early silicosis.And on top of it all they try to treat my anxiety with a Damn clinic doesn't use benzos.sorry for the long post but I'm bout to lose it.

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  • I wanted to chime in with a big HANG IN THERE. I helped my friend through a heart transplant, and I understand the frustration and anxiety brought by pre-transplant changes in health.

    Transplant doctors are great, but not perfect. Never hesitate to discuss results or treatment plans with your doctors or transplant coordinators. We found RNs to be a great "go between" in working through the process. They were usually a little more in tune with patient frustrations, and able to point us in the right direction when things got confusing. For example, aaron (recipient) would become concerned with creatin or white cell results. He learned to express his concerns to his RN's, who would come back and say "A and B aren't really a concern, but if you're worried about C you should set an appointment with this doctor..."

    Hopefully this helps a little. Transplant is a "long haul" and I wish you best luck up to transplant and for years and years beyond.
  • There are a variety of meds, benzodiazapines being one class, that can succesfully treat anxiety. That being said, there are also a host of medical problems that can create the same feeling.If you are pre-kidney transplant, the elevated creatine levels can make you very jittery as well. The physical and emotional stress is enormous. I would seek out a psychiatrist or a psychiatric nurse practisioner to assess what kind of anxiety this is. Antihistamines are a terrible choice and I wouldnt use them. I am a psychiatric nurse myself so I always lean towards proper diagnosis so we arent treating the symptoms associated with an underlying medical condition with psychiatric medicines. You need a good eval.

  • Hi Torie

    I hear your frustration. I would trust your doctors but try and go see them as often as they would see you. Can you halt your GERD with a proper diet? Have you tried a low acidic diet, gluten free products? Are you able to take probiotics. If you are, I love the brand Renew Life.  That is my new favorite.

    For anxiety- you can learn energy medicine.  If you decide to buy a book or video, tell them you heard about them on Transplantbuddies for a discount.

    I will say that Anxiety is the worst feeling and can mask all sorts of diseases.  If you can put off transplant then put it off, learn how to be healthier.

    What do your doctors actually tell you?  Sending you a GIANT sized Healing HUG filled with Empathy.

    My personal experience with anti anxiety pills was not favorable and I would only take paxil if I had to be on a ventilator. I am no longer afraid of anxiety and can deal with it even when I was on oxygen. 

    I wish I could teach you all that I know about Energy Medicine but if you are interested, I will try my best.

    I have learned that to stay well, there are many things that we can do for ourselves, besides taking medications.

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