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    • #34474
      Colleen Steele
      Keymaster

      A PH diagnosis is scary, but it can be even more frightening without health insurance. Have you been in this situation or know someone who has?

      A new member, @kakes from Texas, is trying to find help for her recently diagnosed sister. She was sent home with medication but no further options because she does not have health insurance.

      What would you do if you didn’t have health insurance or suddenly lost it?

    • #34480
      Jen Cueva
      Keymaster

      Hi @kakes, again, my heart goes out to you and your family. This has to be overwhelming, stressful, and frightening.

      Have y’all checked with local, state, and federal programs? What area are you in, Texas? I was in the Houston area before relocating last year. But know, Methodist Hospital and other large hospitals in Texas take patients without insurance.

      Most all PH treatments offer copay assistance, too. Please let us know how we can best support you through this difficult time.

      Is there a case manager or social service worker who can help? There are resources out there. Unfortunately, they aren’t easily accessible.

      Here are a few links that you may find helpful.
      Healthcare.gov

      Texas Health and Human Services
      PHA Insurance Resources

      • #34503
        Kali Greathouse
        Participant

        Hi Jen, yes we have check into our states insurance but basically you have to have a child or be 65 years and older, she does not have kids and she is 34 years of age. She Has PAH with a hole in her heart, leaky valve, enlarge right side. she is in heart failure. I have to help her. Its hard bc I have 4 small kids and I’m a single mother and I also take care of her. My soul is crushed and my hurt is deep. I have to help her. we are from Houston but live in El Paso Texas. I have no where to turn I feel as if they sent her home to die. I want to thank all of you on here because of you I have strength to pull myself together and find joy in my day.

        • #34516
          Jen Cueva
          Keymaster

          Hi @kakes, if she is on limited or no income, she should qualify for something locally or federally. It breaks my heart to hear that she has been “sent home to die,” as you mention. Did they send her home with hospice care, then?

          I found these online that may offer some local assistance programs for you both.

          Helping Hands El Paso

          EPSHRM

          It is great to hear that you find this forum a place that offers you strength. I imagine this is challenging to balance with caring for three kinds and scary, to say the least, for you. You’re such a wonderful sister.

        • #34527
          Kali Greathouse
          Participant

          Thank you Jen so Much. I’m so Happy I found this place. all of you have giving me so much stuff to read and go over and apply for from the bottom of my heart THANK YOU ALL.

        • #34533
          Jen Cueva
          Keymaster

          Hi @kakes, I hope and pray some other help is approved for your sister. I’m grateful for the help of the medications. Which medication is she on for PH?

          As far as diet, most PH doctors recommend a heart health low-sodium diet. Check out this topic for more information. I will also tag you in a post about yoga and exercise.

          The El Paso resources seem to offer many free mental health clinics. Is that where you applied for therapy for her?

        • #34584
          Sherryl Leverett
          Participant

          @kakes, Please reach out to me anytime! I have PAH, which is what your sister has, as well as heart failure. PH is a little different that PAH. I struggled mentally and very afraid. I needed therapy and couldn’t afford it. Opsumit is one of the leading prescriptions for PAH. It would cost me over $100k per year! I pay zero! It sounds like your sister would qualify! It has improved my PAH and heart failure! Please let me know if you want more information. Ours if different from PH. I was scared to death! I’m not now!

          Thanks! 🙏🏻🙏🏻🙏🏻🙏🏻

    • #34484
      Debbie Moore
      Participant

      Hi @kakes I had a Christian sharing program when I was diagnosed.  Unfortunately they did not cover my medications, so I had to get insurance because my doctor had informed me my medications would be extremely expensive.  I was able to get Blue Cross Blue Shield not during open enrollment because of some government policy that had been passed.  It is not cheap though.  If your sister’s income falls within the guidelines, several of the PH medications have assistance with them.

      • #34493
        Jen Cueva
        Keymaster

        Thanks, @debbie, for sharing your experiences when you were first diagnosed. I’m sure that @kakes will appreciate everyone’s support at such a frightening and overwhelming time as she helps her sister navigate this season.

      • #34528
        Kali Greathouse
        Participant

        Miss Debbie Thank you for sharing with me your personal story. I hope things have gotten a little easier for you. Your an amazing person remember that. thank once again Debbie

    • #34487
      Jay
      Participant

      Hi, when my mom got diagnosed with PH in 2015 she had no insurance and was just visiting me from India. The hospital social service worker helped me with a lot of resources and also got oxygen supply for a low price. Also they set us up with a doctor for just 50 dollar copay. We were in NJ then and moved to Texas but still she had no insurance but I reached out to the financial depth and social workers and got a lot help. As I was paying out of pocket everything was much lesser. We now buy insurance and everything is good but I know it is not easy. Reach out to the Social Workers and you will get good resource and help for sure. Also you may qualify for many medications if you reach out to the companies with you financial status.

      • #34494
        Jen Cueva
        Keymaster

        Hi @icepick7500, thanks so much for sharing your experiences when your mom was diagnosed. What area are you all located in, Texas? Maybe that matters. When I was a patient at Houston Methodist, I know most hospitals have financial assistance for all types of cases. Sadly, this is not so easily accessible; we have to ask and deep dig and find the right people. But social workers and the billing departments at the medical facilities are usually where this would begin.

        I’m so happy to hear that things worked out pretty well amid an overwhelming time with your mom. Thanks for sharing with @kakes. How are you and your family doing now, Jay?

      • #34530
        Kali Greathouse
        Participant

        Jay, Thank you I’ve got in touch with a social worker. THANK YOU

        I feel a lot better now that I’ve obtained a social worker. Wow you have no idea the relief I feel having a SW.

    • #34488
      Sarah Beth Shingler
      Participant

      I don’t know what medications your sister is on but reach out to the pharmacuetical companies, and the specialty pharmacies.  I was underinsured when I was first diagnosed and they pharmacuetical companies were willing to help me, and that is how I was able to get my medications before I had insurance.  Also reach out to the local hospital where your sister received treatment, to see if they have a program to assist with medical bills.

      • #34495
        Jen Cueva
        Keymaster

        Hi @sarahbeth31819, yeah, so many neglects to learn about the pharmaceutical companies’ copay assistance finds. Again, this isn’t always shared unless asked, and often usually, larger PH Centers do work well to help their patients with any financial aid they are aware of.


        @kakes
        , if you know which medications she needs help with paying for, you can also search it under the Treating PH section. I had shared several when I asked if others have experience with specific treatments. Then the PHA treatment and insurance resources I shared at the beginning of this topic, my first response also offers a ton of links, too. Is her medication coming from Accredo, by chance? They are also excellent at helping with Copay assistance funds.

        Caring voices and many other nonprofits also offer assistance, and few were offering help with insurance and medicare copays at one time, pre-COVID. I’m uncertain how much they are back to the offering, but happy to check into it once you tell us more about what type of help is needed.

        This is a ton of information. Your brain is probably on overload. Take time this holiday weekend to take a break and start fresh on Tuesday morning. Your sister is fortunate to have you on her side. Take care of yourself, too.

        • #34532
          Kali Greathouse
          Participant

          Jen, Yes I have applied for all of the insurance she qualifies for with the help of the links you have sent, I just need to wait to see if she gets approved. fingers are crossed. She has her meds I found Project Vida that offers a program she qualifies for and they give her amazing prices on her medication. We just need help in general. I want to take her to therapy to help with her mental state and the knowing that her life is uncertain. I’ve found a program for that hopefully it goes through and soon.

          Does anyone have and ideas about things I can do at home to help her? what’s the best diet for her?  What are hearth healthy. yoga?

        • #34583
          Carol Volckmann
          Participant

          Hello Kali,

          My heart breaks for you and your sister.

          This forum has been a God sent for so many and I know you have received a great many links to help your sister. Another grant that has helped me is The Assistance Fund. I have to apply each year but they have come through for me.

          You asked what you can do to help your sister at home with diet etc. Certainly Heart Health diet is the number one the medical field recommends. Also, when I was first diagnosed 18 years ago by 2 different Pulmonologists they told me excessive really would not help WRONG!

          When I found the right team I was told that excessive is not only good but will help. The hospital where your Pulmonologist is probably has a heart/Pulmonary rehab. If your sister has to pay for that service she could ask her doctor to lay out an easy exercise for her.

          I was also told by those 1st two I only had 3-5 years to live – WRONG – that was 18 years ago and I still have many more years to look forward to. Don’t let your sister or yourself give up.

          What is also very important is you taking time to take care of yourself – that is so important for a caregiver. Please make sure you take time for yourself.

          Sending loving hugs and positive energy.

    • #34490
      Hall Skåra
      Participant

      Sorry to hear about these insurance issues. I certainly hope it works out well for you.

      I don’t want to start a political discussion, but only want to tell that in Norway we (PH patients) don’t have to deal with insurance companies as Norway has a universal health care system. This means that all PH mediation is covered. (We pay a deductible of maximum 200 dollars yearly. This means that any medication, doctor’s visit, operations, etc which amounts to more than this, is free of charge.)

      • #34496
        Jen Cueva
        Keymaster

        Hi @hall-skara, no political discussion from me. But I am impressed with many health coverages that many other countries offer. That $200 max deductible would be fine with me. Now, are your treatment options limited? I know for some time in Canada, PH patients would not be approved for more than one PH treatment. Again, I do not want a political stir but rather an education on my part. I’m unfamiliar with the terms of health coverage rules for PH patients in Norway.

        How have you been? Thanks for sharing your experience. I could only hope my max deductible was a total of $200 per year. That’s more like some max copays for me.

        • #34501
          Hall Skåra
          Participant

          No, we don’t have any treatment limitation in Norway when it comes to treatment of PH patients. If triple PH treatment is required, then triple treatment is given.

          However, sometimes generic variants are given if they are considered to be equal to the original medication. (E.g. Sildenafil)

          I am fine, thank you. Looking forward to my upcoming trip to the States for the PH conference.

        • #34517
          Jen Cueva
          Keymaster

          That’s awesome, @hall-skara, that a person with PH has access to triple therapy if needed there in Norway.

          I wasn’t able to make the PH Conference this year. Hopefully, you’ll share a recap once you’re back home and rested. Are you speaking this year, by chance?

        • #34526
          Hall Skåra
          Participant

          No, not speaking. I proposed to run a presentation on rehab or my personal survival guide, but I was too late. Program had already been set.

    • #34504
      V.R. Peterson
      Participant

      @kakes, Pulmonary Hypertension Association has a list of many charitable programs, some government, some non-profit: https://phassociation.org/help

      Once your sister knows which medications she’ll be taking, be sure to check out the programs offered by the pharmaceutical companies (also listed on the link above).

      I wish you and your sister much help and luck.

      • #34518
        Jen Cueva
        Keymaster

        Thanks, @mamabear007, for sharing another link from PHA with @kakes. I shared a few and know they offer many resources. I know that Kali and her sister will appreciate all of the resources shared by our supportive members.

    • #34543
      Jen Cueva
      Keymaster

      Hi @leverettsherrylgmail-com, because you didn’t have insurance when you were diagnosed, would you mind sharing some of your experience with @kakes for her sister? I think your story will offer hope for them as they are having such a difficult time with no insurance.

    • #34551
      Sherryl Leverett
      Participant

      Hi Kali,

      Don’t give up hope!  I know it can devastating to learn of a progressive disease.  Luckily, for me, I have a Pulmonologist in the Atlanta area that is one of the best in the southeast.  I got lucky.

      My story:  I have IPAH, Idiopathic, so they don’t know the cause and right side heart failure, too.

      I wasn’t feeling well and went to an Urgent Care close to home because I didn’t have health insurance.  I was between jobs and thought about taking a few months off.  They diagnosed me with pneumonia and did a chest x-ray.  They found I had an enlarged heart with fluid around it.  So, I went to a hospital and they wouldn’t touch me because they didn’t have the experience dealing with a pericardial effusion ( fluid around the heart).  So, they transported me to a hospital right down the road from where I live.  At Piedmont hospital, they ran test and discovered my IPAH and heart failure.  Luckily,  my Pulmonologist is one of the best in the Southeast.  He wanted to take my case because IPAH is rare.

      After draining the pericardial effusion, I had the right sided heart catherization. My hospital bill was insane.  Around $100k.  I am single and had no income coming in, so the hospital wrote off 100% of the bill.  I had to fill out paperwork and show my bank information, and living expenses.

      My doctors only charged me 30% of the normal price to see them.  Find a great Pulmonologist that will work for you and with you!  Mine got me on Opsumit and it has helped me tremendously.  I couldn’t afford it so he got me on a program with the pharmaceutical company .  They did all the paperwork for me.  The second year, I had to go through their patient assistance program and I filled out all the paperwork and was approved again.  I pay $0.00 because I’m not married and had no income.

      A year or so later, my pericardial effusion came back and I had to have a  pericardial window put in the sac of my heart to drain the fluid into my stomach.  My hospital bill again, I paid $0.00, through their patient assistance program.  With both hospital stays and surgeries, it was well over $200k, or more.

      I filed for disability with an attorney and was approved.  It took me over two years, but I got it.  I was approved for another year through Patient Assistance for Opsumit.  I’m been on Opsumit for almost 4 years now.

      I’m single, so I don’t have anyone else’s income to consider.  I have a boyfriend, but his income does not count.

      There are many programs and trials available to you.  You need to ask your Pulmonologist for assistance.  If he/she doesn’t know, find a new doctor!

      I hope this is helpful.  Please let me know if you have any questions.  I don’t know your marital status or work status, but hopefully this is helpful.

      Thanks,

      Sherryl

    • #34553
      Sherryl Leverett
      Participant

      Also, my cardiologist did not work with me like my pulmonologist did.  Keep looking!

      • #34557
        Sherryl Leverett
        Participant

        I didn’t mention the mental health aspect of this illness.  It’s very draining!  Don’t believe everything you Google.  It’s usually worst case scenario.  My boyfriend’s father is a doctor and did his residency at the Mayo Clinic.  He’s the one who told me that!  I haven’t seen a therapist, but I needed to see one very badly!  People have lived up to 20 years with this disease.  So, don’t give up hope!

      • #34558
        Sherryl Leverett
        Participant

        I didn’t mention the mental health aspect of this illness.  It’s very draining!  Don’t believe everything you Google.  It’s usually worst case scenario.  My boyfriend’s father is a doctor and did his residency at the Mayo Clinic.  He’s the one who told me that!  I haven’t seen a therapist, but I needed to see one very badly!  People have lived up to 20 years with this , so don’t give up hope!

    • #34556
      Colleen Steele
      Keymaster

      You are all so amazing. I’ve been away for a few days and return to all of this kind and helpful responses to @kakes situation. Thank you for always being there for each other whether it’s for a long-time forum member or a new one!


      @kakes
      I read that you have a social worker now. I am so happy to hear that! Please keep us updated and we encourage you to ask questions so we can offer support and advice based on personal experience.

    • #34567
      Colleen Steele
      Keymaster

      @kakes I received a message from a woman who says she is a research nurse in PH. A doctor she works with read a thread about your sister’s predicament. They work in Texas and believe they can help your sister get access to care without insurance. In case you are interested, I will direct message you her contact information. Let me know if you receive it ok. If you do contact her let us know if she offered you any hope.

      Everyone, it will be wonderful if this person can help @kakes but always proceed with caution when someone you don’t know offers assistance. I’m hoping for the best with this contact!

    • #34661
      Jen Cueva
      Keymaster

      Hi @kakes, I wanted to check on you and see how you are doing with balancing all on your plate. How are things going?

      How can we best support you at this time? You are not alone, and I’m keeping you, your kids, and your sister in my prayers. Take care of yourself, too.

    • #34779
      Jen Cueva
      Keymaster

      Hey y’all, I want to share an update from @kakes. I heard from her today and actually had a nice phone call with her this afternoon. She has been busy as you can imagine taking care of 4 kids, working, and taking care of her sister, with PH.

      She sounds hopeful and is very much appreciative of all of your support here. Although I know she is eager to get some help for her sister, she is exhausted but pushes through.

      Here is a little of her update:

      “The medication she is taking 1. Sildenafil (heart ❤ and lung)
      2. Clonazepam 3. Naltrexone 4. Mirtazapine
      5. Diclofenac 6. Pantoprazole 7. Bupropion
      8. Propranolol.

      So a little back story my sister Kesia was diagnosed on April 4th, 2022 with. She had become short of breath walking short distances, legs and feet started to swell her tummy was swollen and bloated, she looked pale and sick but when she told me her jaw hurt I knew at that moment it was her heart and I knew it was not good but never did I think she had this many complicating health issues because up until the moment you told me her jaw hurt she was healthy to me she looked healthy. She was the most amazing long distance Runner all throughout High School, she entered in triathlons in El Paso California Santa Fe New Mexico. She trained well she did great. When she heard this she didn’t understand what it meant. I think she had a feeling it was something bad so she was in denial.

      Since then she’s educated herself. It’s hard for her. They’ll be moments when we’re together I still feel like I can never do that again for the rest of my life it’ll hit her. Those are the most devastating moments. I was so desperate to find any glimmer of hope if not for her for myself. I could have never imagined getting on a forms website would have so much support and caring people behind it. Thank you so much for all of this. I had emailed it Jordan the nurse but I had my mom do it because I was slammed with kids and taking care of my sister and work. So it didn’t come from my email. Every day that went by I was a little more devastated not hearing from her. But now I know there’s some kind of mishap in the spelling or maybe you shouldn’t recognize the email address.

      So I wrote her another email and I put my name and my sister’s name as a subject line. I called the phone number today I left Miss Jordan and message and I look forward to hearing from her. It would bring so much hope you just hear her and what she has to say and how they can help my sister”


      @jordinr
      , let me know if you need their contact info, and I’m happy to email you so you can connect with them and see how you can help. Thanks so much for wanting to help.

      She also says if anyone wants to send an encouraging note to her sister, Kesia, her sister would love that. I emailed her and asked if she wanted to join the forums.

      Please, LMK, if you want to send her encouraging words of hope, I can send them in a group email with a ton of your words that may help uplift her spirits as she is awaiting help. I think that would be the safest way to share some encouragement with her if she doesn’t feel like joining. Thoughts?

      Kali, you and your family are in my thoughts and prayers. It was my pleasure to speak with you today and learn a little more about you and your family. Don’t forget to take that “me” time when you can.

    • #34788
      Colleen Steele
      Keymaster

      @kakes I’m keeping my fingers crossed that @jordinr will be able to offer hope to you and your sister. The both of you remain in my thoughts and prayers.


      @jenc
      you can pass on the following message:
      Kesia, a PH diagnosis can be overwhelming and life-changing. If you are feeling discouraged and down, you are not alone. It is common and understandable to feel that way, especially when you are first diagnosed. It’s important to allow yourself time grieve because it is a type of grieving process. Your life has changed but I pray that like so many others in the PH community, you will find a way to embrace the changes and find joy in life again. May you find new activities and hobbies that make you happy and find comfort knowing that there are people like your sister who love you and will be there for you no matter what. The PH community will welcome you with open arms should you decide to join the PH News Forums. I will keep you in my prayers.

    • #34806
      Jen Cueva
      Keymaster

      Hi @colleensteele, your heartfelt words will mean so much to Kali’s sister, I’m sure. Thanks, and I will forward this to her. Please let us know if anyone else had any encouraging words to send her.

      The PH nurse @jordinr was out of the country and was planning to connect with them this week. I’ll keep y’all posted as I learn more. Of course, @kakes is welcome to share anytime, too.

      Kali and her family appreciate the love and support from our forum members. Thanks to you all.

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