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    • #27489
      Colleen Steele

      It’s important that you develop a heathy relationship with your doctor.

      In a recent column I highlighted the important of getting to know your doctor prior to your first appointment. I provided tips on how to do that. Don’t hold back information and don’t lie, was another key point. I strongly encourage patients to respond to questions and ask their own. Introducing a family member or caregiver to your doctor before an emergency happens is also something that I stressed. Last but not least, treat your doctor with kindness and respect. Remember that they are people too.

      Is there something I didn’t mention that you believe is important in creating a healthy relationship with your doctor? Share your thoughts and experience with us.

    • #27503
      Jen Cueva

      Excellent column and tips @colleensteele. It is so very important to do our homework before we choose a doctor. I know so many who go to an appointment and don’t ask any questions. This is not doing much good for them. As you mention, we need to ask questions, too.

      I wrote one of my early columns about this topic, too. I said, “I want to feel comfortable with, as well as confident in, my doctor. My life is in the doctor’s hands. I don’t know about you, but that one factor makes this relationship high-priority.”

      I love that you remind all to “treat doctors with kindness and respect; they are people, too.” Often some forget this and view them as “just a doctor.” This is one of the most important relationships, especially with a chronic condition.

      How is Cullen taking his care in his own hands with such a transition? He seems like such a mature and “old soul,” so I am sure he id doing an excellent job.

    • #27540

      Thanks, Colleen and Jen… very timely topic for me. I am currently in the hospital due to a bout of congestive heart failure. I continue to learn so much about the critical nature of my relationship with my doctors. I’m learning the importance of clearly asking them for what I want, i.e. asking them to confer with one another on an action plan. I’m learning the importance of stating loud and clear what I do not want, i.e. “No, do not order morphine for me. I neither need nor want it”. And I’m learning the real importance of treating them like other vital people in my life… with respect, love, appreciation, and humor.
      Blessings everyone.

    • #27552
      Jen Cueva

      Oh no @sandydenn, I am so sorry to hear that you are in the hospital struggling with CHF. Are they offering you any relief? How long have you been there?

      I am grateful that you are taking your health into your own hands and advocating for yourself. This is so important. I am grateful that Colleen’s column came out just in time. I am proud to hear how you are working with your medical team. I find, at times, that they need our inputs, and most of them appreciate it.

      Hugs and prayers are with you as you improve and get back home. Keep us posted and let us know how we can support you.

    • #27558

      Thanks so much, Jen. Got home this afternoon… grateful. In three days, I dumped 7 pounds of fluid thanks to lasix. I am exhausted but am breathing SO much better. I’m scheduled for an outpatient right heart catheterization on Monday to try to pin down whether my PH is coming from scar tissue in my lungs from scleroderma OR from a stiffening of the right side of my heart that is causing fluid to back up in my lungs. Then hopefully they will know who to better manage my symptoms.
      Any of this sound familiar to any of you?
      And Colleen, still holding your family close.

    • #27564
      Jen Cueva

      Hi @sandydenn, I am so happy to hear that you are back at home. Wow, 7 pounds of fluid, I know that has to be a relief. That extra fluid takes a toll on our breathing, for sure. Were you not on Lasix at home? Or, were you on it but a lower dosage?

      Yes, it sounds like they want to do the RHC yo get those answers. Depending on the cause of your PH, that will determine what treatments they can use to help you best. It sounds like you are in good hands. Prayers that your RHC tomorrow goes well, and you get more information.

      Please let us know how we best support you.

    • #27575
      Colleen Steele

      @sandydenn I am so sorry to hear about your recent battle with congestive heart failure. Isn’t it something how losing that fluid helped you feel much better? Yes, it all sounds familiar to me. For my son it was right heart failure. He eventually was placed on continuous IV milrinone. To believe it or not he attended school with that pump and his Flolan pump. That poor kid had tubes coming out from everywhere under his shirt, but it helped keep him strong until transplant.

      It does sound like you are in good hands. Hopefully your doctor will find the best PH treatment that will help you a great deal and that you are far off from needing milrinone. Please keep us updated.

    • #27679

      Hi everyone and thanks for your good wishes. Home for a week now and finally starting to feel stronger each day – YEAH! I was previously on 80mg of lasix per day which has now been increased to 160mg per day. That dosage, plus the complete elimination of salt in my cooking and eating, seems to be keeping the fluid off. I’ve learned alot about signals from my body through this experience. For example, hind sight shows me that this problem was building over several months as I kept gaining weight without explanation. I am so conditioned to think of myself as obese, which I am, that I was writing the weight gain off to fat rather than fluid . . . never even occurred to me. I was also conditioned to look for fluid retention only in my feet, ankles, and hands, when in fact, the majority of my bloat was in my chest/abdominal region. So it’s been a good learning opportunity even tho’ a very scary one.

      And Colleen, your son has to be one of the bravest little boy turned young men that I’ve read about. I envision him in school with all of that equipment hanging on him and it makes my heart ache. What a journey you and your family have had.

      Hope you two ladies, and all of the rest of our group, are staying safe and feeling glad to be alive. I sure am.

    • #27691
      Jen Cueva

      Hi @sandydenn, thanks for the update! I am happy to hear that you are seeing some results and feeling stronger. I was on that dosage of Lasix for years, and only recently could cut back a little. But I am also on 2 others.

      It sounds like you are learning some new tools and tips that are very important and helpful. My swelling happens most often in my belly first. I also see it in my feet, ankles, and hands, but belly bloat for me is my first clue. Do you also weigh every morning and keep track of this? Learning to read food labels to check for sodium and other items is helpful in so many ways.

      I agree with you about Cullen; Colleen son is such a brave little guy. he has now blossomed into an awesome young man, thank God.

      When do you follow up again with your doctors? Take care, and thanks again for your update and important lessons. Many can learn from this.

    • #27705
      Colleen Steele

      This is such good news @sandydenn. I can hear the relief in your words. And congratulations on staying home sweet home!

      Thank you for your kind words about Cullen. They meant a lot to me.

    • #29169

      Colleen, you must be looking inside my head. So many topics in this category we are thinking alike.
      First I want to say that having a discussion with my R.N. sister and being jacked around by Dr’s. I wanted to get a movement going based on this: When we go to a new Dr. there a whole slew of questions and paper work that must be completed. I say forget that I the patient have a questionnaire that I need the Dr’s answers, before I can make a decision. My sister (R.N.) looked at me like I was totally insane and told me that they would not do that. Don’t even try it. My plan would be to either have a appt. sit down consultation or at very least mail or drop off w/self addressed stamp envelope. They would answer my questions place in outgoing mail. Easy Peasy. I could see it getting laid aside, maybe requiring a reminder call. So ok me trying to get a dr. to do this. I am nuts but what if people can see it for the value it holds. Especially most important if you have had negative Dr. experiences.
      The concept is based on the fact that we are the patients. We are trusting them with the only thing that matters. Our lives, at the very least our health.
      Now about the Resident Dr. thing and how I feel about that… Colleen and anyone else who may be reading this and find some kind of shred of value that would assist you if at all possible try not to have happen to you what you will read in the next post it is probably a great experience for some somewhere. I will be making a separate post to follow this one. And you will see my current experience with a Resident Dr.

    • #29170

      What I need to share so if you are faint of the heart you might want to move on. This is not made up, I have added no extras for dramatical effects. You can’t make this kind of stuff up.
      Colleen, I would like to find out your tips about finding a Dr.. I have a sister who is a R.N. and with the first Dr. I had I learned from you folks that it is important to keep copies of your records etc. etc.. With that Dr. I got records due to corporate bla bla it took close to 4 mos. One day my sister was going over those records and questioned me and came to the conclusion based on how many inhalers I was prescribed I was short a inhaler. The record spoke of 2 inhalers plus the rescue. I was only on 1 plus rescue. Apparently he didn’t realize he had shorted me one. First clue could have been when I complained the inhaler wasn’t working I had sever SOB. His answer was I have COPD it causes SOB. No bother to look at the chart and perhaps he may discover the error.
      I change to another clinic this time in my town. I make my first appointment, This clinic does something called fellows so they advertise to graduating Dr’s who want to specialize in pulmonary and want to resident in Colorado.
      Ok so I get a resident Dr. and because she only is in office one day a week and does clinicals the rest of the time, but it is not a specific day. It took 2 1/2 mos. and umpteen appt. changes before I had my first appt. She gives me the right inhaler combo and I can breathe again. Holy crap she walks on water in my eyes.
      Ok so I remain stable for the next year. When you call for appt. it is made a couple future. soonest to get in. this clinic has done no testing on me except a echo.
      Now we are in the present are you still with me people?
      4–5 mos. ago or maybe you have a better time at the ending of summer when colorado and Cali were burning up and the smoke was so bad. I was out about 3 times rebuilding my garden planters. Without even realizing until I was overcome by smoke. Went into a state of severe SOB. Smoke cleared. I am still severe SOB. So hopefully not to many people know how COpd plays out but every time you have exacerbations and the lungs end up jacked up I could get all medical terminology on you but at this point……..
      So I get a appointment but due to the plague the are only doing phone appts. I call up tell them my breathing is bad if I wait 1 month I can slide in to in office. I wait 3 wks go by I had this feeling I call up they tell me it is phone appt. I flip out. Don’t know who I talked to that set up in office so they ok come in for offc appt.
      She sees me based on my level of SOB she prescribes Orenitram after being on for 2 wks I am to have echo and phone consult w/her. Appts. all cancelled takes 5 1/2 weeks to get Orenitram. Authorizations then she filled out paper work wrong Accredo faxes it back but she wont be back for a week. 5 1/2 wks. later I get Orenitram and it does whatever it is supposed to do to the right heart. I find this out in the consult w/her. Mean time I had done a letter of requesting all kinds of things I need for my case. 3 wks. before consult. I stroke her ego because I am aware with bureaucratic stuff Drs do a lot they don’t get compensated for. I mail it to her. The post office takes 2 weeks to return letter. Ok I messed up I did not complete the address properly. I deliver in person letter 2 days prior to consult.
      Remember you said we were here for support, I gotta tell ya I had to take a break. When I think of how much it is going to take to convey what is happening. So I will now adapt list type explanation to spare us all.
      While all that is going on
      I have to go on Medicare I rep who has a hard time covering pah meds but finds one but they wont cover albuterol she tells me i still have 30 days i need to contact dr. seek info if there is another rescue besides 2 that cant cover.
      I call up dr offc. explain they say they will pass mess. on. Time ticked by and I delivered letter mentioned above med asst. sees me its 22 hrs approx. before my Medicare cut off time. well i already figured I was getting jacked by offc. so I call Medicare to just find the company to cover pah meds I will pay for albuterol price has decreased get one avg 89.00
      I get a representative who states that special pah drugs will be covered by this company she signs me up
      The company rejects medicine requires special appeal special circumstances.
      send copies of denials in dr. letter.
      I start online researching Medicare drug plans.
      Somehow online asks me questions next thing I know says a rep will contact me
      to myself I think ——- that a rep is what got me here I am responsible I can do this on my own if I mess up at least i aint the gvt. employee who has no accountability
      Rep calls next morning says he is not familiar enough with my area. you had my zip code why did he call me i say to myself.
      4 hrs later his boss calls finds me a company to switch to that will cover pah meds.
      meanwhile i am running out of meds the complimentary 30 days the ins. did supply is dwindling
      so up to now I am finding out that in relation to my getting a portable concentrator I get a call from a innogen dealer whom the dr. sent authorization whatever. Play phone tag for a week guy doesn’t accept none of the ins. options i offer him. with a tone of voice that I wasted his time. at this point educate him to the fact that dr”s waste his time not me.
      Inform drs office that the request was supposed to go to my local branch oxygen supplier.
      i call dr offc. request to speak to someone regarding some confusion and issues i am having. Some broad i got her name this time says transferring me to med asst. I state no I don’t want to speak to her. What about the tall Dr. w/gray hair or I know you have a office mgr. she states she is changing my mar 11 appt to an in office appt to talk to my dr. then. I swear on the bible I tell you nothing but the truth the whole truth and nothing but the truth. This is how they treat their patients who are experiencing issues.
      so accredo specialty pharmacy is stuck refilling my meds because they are waiting for dr. to return paperwork to fill orenitran, letaris. I speak to someone at accredo about programs that may offer assistance when insurance wont cover I get a award. the gal has to know about the copays for the meds. I didn’t understand how you have a copay when no insurance has authorized gal says i am complicating it to much this is the time that i shut my mouth when she is done i tell her she is not the first one to tell me that now the award cant finalize until dr gets paperwork back to accredo.
      In the meantime i find out that Medicaid did not roll over with medicare. even though the Medicare book says it does. If you are on Medicaid it joins up with the new medicare. both companies said i had medicaid and put me on plans.
      I have had it as I’m sure you know by now if your still reading. I call up to talk to med asst. I come unglued. then I do apologize but until you have not been able to get air. The Drs offc dont apologize to me.
      I have now been informed how they operate there at ok f—it I will say it Pueblo Pulmonary
      when a dr. is there only one day a week other drs do not cover for issues patients are having with whatever. Dr is on call as of 5 pm but if you have problems they say got to E.R.
      problems with messed up paperwork or deadlines too bad so sad for you
      The straw that broke the camels back came this evening contacted by insurance co. who denied my medication appeal because the dr. didn’t return paperwork and they even tried calling dr. office but was unable to connect with dr. so it is denied. I am melting down at this point i find out that it is not a denial for ever the dr. must fax mack paper work and when I contact them monday there must me a cover sheet in bold letters URGENT.
      Previously sometime i made a appt. to switch to denver place that is superb at all this. reality hit my car is not reliable enough at this time to do a 2 1/2 hr trips and I don’t have the financial means
      to go back and forth.
      I scoped out the other pulmonary clinic in colorado springs I read the reviews cause I am leery. they have numerous negative reviews centered around no return phone calls and piss pore issues around communication.
      ok I call and leave a message on the ext. it said new patient appts are directed to. this is on a saturday I’ve never heard back from them. I am telling you the truth. I decide not to make any more calls because this was a sign. I am already at 1 messed up clinic. why switch to a clinic an hour away and bigger amounts of fuel to get there
      all I have to do is drive 10 min. and use what an ounce of gasoline to get to the messed up clinic I am already at.
      So recently when i have posted telling our members who have spoke about their teams of drs and the communication and testing to determine where you are in your disease process. How lucky you are and how envious I am and I am so glad that there are members out there who get good care. Although this has probably been enough for any die hards who are still with me and who may have had any question about their care, this situation is enough to make you appreciate your care. I know if i just read this i would be hugging a dr. who was at least even somewhat capable.

      • #29191
        Colleen Steele

        @kristine I took my time and read both of your posts. You have really been through the ringer. I’m so sorry! My heart hurts when I hear about PH patients struggling to get good medical care, treatments and quality insurance coverage.

        I’m sharing some links that may or may not be helpful. It wouldn’t hurt to have a look. Maybe you will see some options within the lists. They are from the PH Association. One is regarding Insurance and Treatment Access, the other can help you find a doctor and the next one is about PH care centers.

        Insurance and Treatment Access

        Doctors Who Treat PH

        About PH Care Centers

        Please keep us updated on how you are doing.

    • #29205
      Jen Cueva

      Oh no, @kristine, you have been through hell and back, it seems. I am frustrated with you that you have been dealing with such nonsense. My heart aches when I see a member struggling to get some care and treatment.
      Colleen offers some excellent links that I am hopeful will help you.

      I know it can be overwhelming and exhausting too. So, please try and focus on a few small tasks in one day. I know you will eventually get some answers and a medical team that communicates to you.

      Are you a few hours away from Denver? Do they not have any shuttle services to take you there? I will check in your local area to see if these options are available. You mentioned your car is not dependable. This is something the state or local county office should assist you with appointments.



      Just a few ideas as I am trying to help you find a way to get some much-needed care.

    • #29206

      Colleen, and Jen,
      Thank you so much for the support and the thought process of coming up with various options to assist in ending this madness.

      • #29216
        Jen Cueva

        It is our pleasure to help as much as we can, @kristine. I hope that you will keep us posted as you navigate all of this. It can be overwhelming, for sure.

        Thanks for asking; we are good this week. Last week was not the best, but we did it “off the grid” a few days. I am grateful for our generator and my hubby helping to keep us safe and my oxygen going.

    • #29207

      How are you doing with all the trauma Texas is dealing with?

    • #29212
      Carol Volckmann

      Colleen what a great topic! And what great insight, resources and advice you and Jen gave Kristine.

      It is important when you have a life threatening chronic illness you find the right team. The relationship has to be honest, respectful and open to finding other doctors with expertise that will be shared.

      I had a really tough time in finding the right fit for me, but I did and am so thankful. It took patience and persistence in getting through all the gate keepers.

      Sadly last Sunday I lost my quarter back ( my Internest) who died suddenly in his sleep. The picture of health and gone in a moment at 66 years old.I had been seeing him for over 20 years. He saved my life twice.

      I do have the rest of my team 2 Pulmonolgists, Rhumotologist and Cardiologist. They all communicate with each other and work with me finding the best outcomes that are possible.

      No one is perfect nor have all the answers but they need to be open and honest that and seek out resources that may work.

      So, Kristine don’t give up or give in look at all the resources out there and look for that fit for you. Wishing you all the best.

      • #29224
        Colleen Steele

        @cdvol3gmail-com that is awful news about your doctor! I am so sorry! You must have felt devastated when you heard, not just because you lost an excellent doctor but I’m sure after 20 years he felt like a trust worthy friend. My deepest sympathy.

    • #29217
      Jen Cueva

      I am sorry to hear of the loss of your internist. I am sending you extra hugs from Texas. They become our family, so sorry.

      I know how important it is to find a medical team that you trust your life with. It often takes time, as you mention.

      I am certain that Kris is appreciative of your tips and support. Never give up; I often see several doctors before I find that special connection.

    • #29225
      Carol Volckmann

      Thank you Colleen and Jen. Our doctor aside being a great quarter back he was a very dear friend.

      We still cannot get our heads nor hearts around his death.

      The rest of my medical team is there and has my (and Dick’s) back, but Jeff was the one we would always turn to and get his view.

      Thank you both again with love ❤

      • #29228
        Jen Cueva

        Thinking of you and Dick both, @cdvol3gmail-com. Losing a doctor who cared for you so long is difficult enough; a friendship built with him is even more of a struggle.

        It sounds like this was a surprise, and he was not sick; it just happened as he slept. I am hopeful that he was not suffering.

        My continued thoughts and prayers are with you both and, of course, with Jeff’s family, too.

    • #29232
      Carol Volckmann

      Thank you Jen for your sweet thoughts. Our doctor Jeff was the picture of health, ran every day 15 miles at lunch another 15 after worked, competitive cross country skier and mountain biker and suddenly died in his sleep. His Cardiologist, also a good friend, said Jeff heart did not show any symptoms. Jeff was 66. It just reminds us all how precious each and every moment we have on this earth and to make it the best we can. And to treasure our loved ones and to let them know how much we care and love them. Sending you lots of love and letting you know how much I treasure you and Collen!

    • #29234
      Carol Volckmann

      Sorry Colleen, I really dislike when my Google tries to auto correct and once again misspelled your name! 😊

      • #29237
        Colleen Steele

        @cdvol3gmail-com no worries. I also respond to, “Hey You” or “Cullen and Aidan’s mom”. LOL!

        A former boss I worked with for 5 years consistently spelled my name Colene and pronounced it Clean. It was a running joke in the office and he had no idea he was the brunt of it. So trust me, your auto correct mistake doesn’t compare.

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