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    • #31985
      Jen Cueva
      Keymaster

      The emotional challenges that we face in the PH community changes at times. Depending on how far along we are after a diagnosis, stability and how we feel at the moment can affect our emotional responses.

      Some emotions may be guilt, fear, anger, shame, and content, and hope.

      Although I was diagnosed over 16 years ago, I continue to go through many changes emotionally. Some days, this can change from hour to hour.

      In the beginning, of course, denial was a massive hurdle for me. I moved past that feeling, but at times it comes back to haunt me.

      For me, contentment is probably the least in the group above. Fear and anger, along with frustration, can happen at any minute. Of course, my emotions are not as strong when I am in pain or having an increase in PH symptoms.

      Today, I’m mainly feeling content, but also guilt and shame pop up. I am in pain, and Manny, my husband, is having eye surgery.

      I need to be strong for him, as he is for me. But fear and worry creep in as I ask myself if I will do a great job as he does for me.

      How about you? What is your most concerning emotional challenge today? Do you find that you bounce back between several emotions throughout the day?

      Let’s talk about it and support each other.

    • #31988
      Colleen Steele
      Keymaster

      @jenc I didn’t know Manny was having eye surgery – or did you tell me and I forgot? I’m so sorry if I did. When it it taking place and what type of surgery is it?

      I think you both worry about the other equally. That’s ok, it’s just a symptom of loving each other so much.

      As you know, Cullen had a transplant and no longer has PH, but transplant comes with many of the same emotional feelings.

      I don’t think this is exactly where you were going with this topic, but today I feel like a medical snob. I know what good care looks and feels like and when I don’t see Cullen getting it I become so agitated.

      The lab at his clinic/hospital keeps messing up his lab work and seem to always struggle to take his blood. Yet the little clinic near our home has him in and out in 10 minutes and have never made a mistake.

      Does anyone else feel a lot of emotions around the level of care you expect to receive?

      • #32008
        Jen Cueva
        Keymaster

        Hi @colleensteele, no worries about Manny’s surgeries. He had a rare form of cataract. Thankfully only on one eye. The surgery went well. We had to go back this morning for a follow-up. He will be home all week and goes back next Thursday to follow-up, too.

        I appreciate your perspective about our love and how much we care for each other.

        Nope, being a medical snob, as you mention, is what I was asking. I don’t think you are a snob. You only want the best care for Cullen. You are advocating for him.

        Interesting that the smaller labs and things often offer better and a smoother process, right?

        Emotional challenges while trying to get the care that we know we need and serve can be frustrating. How is Cullen doing with all of this? Does he also become frustrated or goes with the flow?

        This is my biggest obstacle when I think about relocating.

        • #32012
          Colleen Steele
          Keymaster

          @jenc I’m relieved to hear that Manny’s eye surgery went well. So, has the patient become the caregiver this week? What kind of a patient is Manny? How does he handle taking things easy for a while?

          Cullen has been frustrated with the lab and when he had labs yesterday he expressed this and guess what happened? They messed up the worst yet! We reminded them repeatedly that he was only having the endocrinology labs and NOT lung transplant or anything else.

          I received a call from lung transplant yesterday questioning why Cullen’s transplant med levels were through the roof. They are supposed to be timed labs taken an hour before Cullen takes his morning meds.

          They took his transplant labs around 2PM yesterday after we told them ONLY Endo. labs. Even worse than that, then didn’t take ANY of the endourology labs but labeled the blood work as it being that.

          So today Cullen went to our little clinic at home and had the correct transplant labs taken and the endocrinology and the wonderful woman who always draws his blood there commented that the mix-ups really messed up his labs in the computer. It’s now difficult to figure out what he needs and what he doesn’t. Just great!

          Cullen agrees that unless it’s an emergency, he will only have labs drawn at our little clinic from now on and not at the hospital. Geez!

        • #32024
          Jen Cueva
          Keymaster

          Oh No, @colleensteele, I am so sorry about the issues with the labs. I bet not only Cullen but you, too, were fuming after that mix-up.

          This was huge and could have caused things to go wrong if you and Cullen didn’t realize that happened when the transplant team called. So frustrating, to put it nicely!

          I am happy that he can get his labs all done at the small clinic most of the time.

          Thanks, yes, Manny is not the best patient, LOL. He does not want me to do too much, so that is not helping. But I knew that already.

          But I am trying to be his nurse. He does his eye drops three times per day, so he does that when my med alarms go off.

          But I am cooking, laundry, and driving, mostly.

          But he decided that he could drive to get his truck inspected for registration just now. The doctor did not want him to drive just yet. At least his eyes are not still dilated today.

          Yes, he is incompliant with driving, but so far, compliant with his eye drops and restrictions on lifting and bending over.

          I hope that Cullen does not have any other issues with labs, so frustrating.

    • #32000
      Roger Bliss
      Participant

      I mostly have frustration and anger for not being able to do the things I used to. With me it’s a combination of getting old and PH. I am looking forward to going to UC San Diego and have them check me out, both for cancer and PH. I can’t help but think they can do way for me than they can up here.

      Most have heard of 3rd world countries where things aren’t too up to date. Alaska is Americas 3rd world state. They figure we stay about 5 years behind the rest of the country. I rather enjoy our lifestyle, but wish our medical facilities were more up to date.

      I hope Manny has a successful eye surgery. I am sure he will appreciate whatever support you give him even if you don’t think it matches up to the support he gives you. Don’t beat yourself up and just do the best you can to help him.

      You have had PH for 16 years. How are you doing 16 years later? Are you the same, better or worse? I am just coming up on a year and wonder what the future has in store for me. Will I get better or worse??

      When they put the stent in me…….it really screwed up my breathing. I still can’t breathe as good as I did before the stent. I know I needed the stent as I would have probably had a heart attack if they didn’t put it in………but.

      • #32009
        Jen Cueva
        Keymaster

        Hi @wheeldog, these frustrations and emotions are certainly relatable.

        Grieving the same, you did before also is standard.

        Thanks for the support. Manny’s eye surgery went well. He hates my driving, but that is nothing new; LOL He has me for the week, LOL

        Manny had stents put in several years ago. His breathing, as far as asthma, seemed worse after that, too. Then he had COVID last year when I did, a milder case, but his breathing seems worse after that, too.

        I am doing pretty well at the moment, Roger. For me, stability is vital. COVID left some damage to my lungs, and the PH progressed some. But I am stable at this point for the most part.

        I have ups and downs.

        I have chronic kidney disease and other health issues along with PH. That affects things, too. But I have come a long way. Before my diagnosis, I could not walk 5-10 steps without struggling for air.

        I am looking forward to going back to my pre-COVID oxygen soon. That is my goal by the end of the year.
        Thanks again, and know that you are not alone with your emotional challenges.

        • #32018
          Roger Bliss
          Participant

          Glad everything went well for Manny. Hope he has a speedy recovery. I had my  <b>cataract</b>s removed several years ago. Really freaked me out having someone put sharp objects in my eye. Hope he didn’t freak out like me.LOL

          Glad you are still improving. Hopefully I can too. You have given me something to look forward to. Now for me to keep going for 16 years would put me at 84…..lots of healthy people don’t live that long.LOL  I’ll get lots of improvement Friday when I get my lung drained. I’m in a Yo-Yo type deal now…..breath good, then slowly loose my breath as my lung fills up.

        • #32025
          Jen Cueva
          Keymaster

          Thanks, @wheeldog, you are such an empathetic feller’. I appreciate your support for Manny.

          Well, I couldn’t;t be in the room, but I have a feeling he did freak out until they gave him more meds. They told him that he was coming off the table. I warned them that he needed lots of chill meds while doing this.

          He has difficulty with anything in his eyes. Eye drops, too. Thankfully, so far, he is doing those post-ops as instructed.

          Like you, he is doesn’t like to be down, so as I mentioned to Colleen, he decided that he could drive his truck today.

          I hate to hear about the extra fluid again. I know that always helps to get some of that off.

          Your words are heartfelt, so grateful to offer you some hope. Please keep us posted after they drain your lungs.

          When are you going to SD? Is it UCSD?

        • #32047
          Roger Bliss
          Participant

          The plan is to drive south the end of October or first part of November. I haven’t ,made any appointments yet, but want to get one for the end of November at SD to do tests and drain my lung.

          Got my lung drained Friday. Somehow they tweaked my diaphragm. Talk about a weird feeling……woah!!  It was down to 1.4 liters. It started out a 2, then 1.6 and now 1.4. Hopefully, it will keep going down till it doesn’t fill up anymore.

          I am feeling pretty good…..worked 5 hours today even though I am supposed to wait for 48 hours. I am still feeling good tonight even with the work.

          I’ll get drained again at the end of October, just before we leave.

      • #32013
        Colleen Steele
        Keymaster

        @wheeldog I thought your message to @jenc about caring for her husband was so compassionate and spot on. Thank you for encouraging her that any help Manny received from her is plenty and appreciated.

        You my friend have been through a lot lately too. My heart goes out to you for feeling frustrated and angry at times. It understandable and I think you should allow yourself those moments – just don’t get lost in them.

        I’ll be anxious to hear how your San Diego appointment works out for you. Fingers crossed they will meet your expectations and be able to help you beyond the care you have received so far.

        How disappointing that the stent has effected your breathing so much. Make sure you mention that at the new clinic. Maybe they might have something up their sleeve to help with the decline you have experienced since then.

        • #32019
          Roger Bliss
          Participant

          I have a lot of faith in the folks at San Diego. I am always amazed at how well they have their act together. I am sure they will figure something out.

           

    • #32002
      Susi Steppins
      Participant

      Good morning all.


      @jenc
      there is no doubt in my mind that Manny can feel the love and support you are giving him. I have seen what you have written here about him and felt the emotion behind your words.

      If I can feel it, believe me, he can feel it 10 times more.

      Let us know how he is doing.

      Knowing you have been dealing with PH for so long gives me hope and something to strive for.

      Thank you for being here to offer that.

       


      @colleensteele
      Cullen is very lucky to have you watching out for him.

      It is frustrating when you feel like details are being missed or they aren’t being careful enough to make sure things are being done right.

      It happens to me all of the time with blood work.

      Last time I specifically asked the person drawing the blood if they were checking for my potassium levels because it had been a while and I felt like maybe they were not quite right.

      She assured me that she was testing for that, even looked at the paperwork.

      Got my results and guess what?

      No potassium levels were checked.


      @wheeldog
      living in Alaska must be beautiful.

      It’s great that you have the ability to travel south for medical care.

      I had no idea that the care in Alaska is behind but now that I think about it, I am not surprised.

      Hope all of your check ups bring good news.

       

      My immediate struggle right now is the emotion of guilt.

      It is really difficult for me to not be able to do as much as I once could.

      I have been a very hard worker all of my life and now I can hardly make it to the bathroom without being short of breath.

      My daughter in law is 6 weeks in to a 10 month internship.

      Full time work for zero pay.

      My son has a full time job that pays enough to get them by, but there isn’t any money in the budget for child care.

      I told them I would help the best I could which turned into having the kids 6 hours per day, Monday through Friday 9 to 3.

      I do have the reassurance of my husband working here from home 4 days a week.

      He helps me with stuff like lifting them up for a diaper change or keeping an eye on them while I make lunch or a bottle.

      I have a granddaughter who just turned 3 and a grandson who is 7 months.

      They are a handful.

      Yesterday shortly after they got here Cora started sniffling and her nose turned into a fountain.

      Right now there are so many kids coming down with Covid and I couldn’t take the chance so I called my son and told him he needed to pick them up.

      He completely understood and now she has a fever and a really good cold so it was a good call.

      But I know how much he is struggling with them and trying to work at the same time.

      I hate feeling guilty that I can’t help more.

      If I didn’t have PH I likely would have worked through it and continued to watch them.

      But I know I can’t do that.

      It’s not a good feeling.

      • #32014
        Colleen Steele
        Keymaster

        @s-steppins thank you for your kind and supportive words to all of us. In spite of the difficult topics it’s always a pleasure logging in here and reading the thoughtful and helpful responses we share with each other. Much appreciated!

        I hear so many PHer’s and their caregivers express feelings of guilt. It’s yet another miserable side-effect of this disease. I’m willing to bet your son also feels guilty asking you to help with the kids. But it sounds like you are both very understanding with each other. You understand that you son and daughter-in-law can use your help but they also understand that sometimes it just won’t be possible. I’m sure they would rather not put you at risk of catching something from the kids, so try not to feel guilty. You did do the right thing and send the little one home. Just praying the short time you were with them you didn’t catch it. How are you feeling?

        • #32023
          Susi Steppins
          Participant

          I am feeling fine.

          They did test her for Covid and it came back negative.

          Just need to wait until the cold is gone now.

          Thanks for asking.

        • #32027
          Jen Cueva
          Keymaster

          Hi @s-steppins, I am happy to hear that her COVID test was negative. I hope that she feels better soon.


          @wheeldog
          , you offer such compassion and also some ideas for Susi that make benefit her family. Reminding her that her family is supportive and knows her limitations is essential, too.

          You also made an important point. Mostly having limitations is the cause of many of our emotions. Frustration, anger, guilt, shame can all be from not doing what we could do before.

          Remembering to listen to our body while finding ways to adapt to do things we did before can be beneficial.

    • #32010
      Jen Cueva
      Keymaster

      Hi @s-steppins, my PHriend, my heartaches as I read your response. I, too have been feeling guilty in many ways. I have been working with my therapist for about 2 years trying to work on not feeling guilty.

      You have certainly had a tough plate to balance. I am certain that those grandbabies are precious but also draining, to say the least. I hate that you are feeling so guilty. I am certain that your adult kids know you are doing all you can and then some to help. But, you also need to protect yourself, too. This means rest and taking those precautions when one of the babies are sick.

      By reading this, I know that you are going above and beyond for your children and grandkids. They know that, too. I bet that they also want you to be here a long time, so taking care of yourself is just as important

    • #32020
      Roger Bliss
      Participant

      @s-steppins

      My doctor explained why medicine is behind. Our state population is just over 700,000. Doctors  up here are a jack of all trades and masters of none. There isn’t enough cases of rare diseases for a doctor to specialize in just one. Where someplace like CA there are millions in population and enough people to support more specialized doctors.

      I think we all have some sort of emotion not being able to do things we used to. We just have to accept our limitations and do what we can. Yeah…..I know…..easier said than done. Sounds like your family knows your limitations and understands.

      Maybe there are other ways to help. There might be some government programs that can help people with child care? You could check out social services programs that could help you or your son. Hopefully you can find something that will help.

    • #32032
      Carol Volckmann
      Participant

      WOW, it is a Rollercoaster of emotions we are all going through – Jen, Colleen, Roger, and Susi with sharing what you are going through and the support you have so willingly reached out to each other has really helped me today!

      I have been running the gambit of feeling guilty that I am not doing more, feeling embraced the way I look now, angry at my new PCP who thinks seeing me once a year and just doing lab work is enough etc.

      When I was a consultant working with folks who had lost their jobs from corporations downsizing I kept hearing the phrase “we are all in the same boat…” it hit me no, we may be in the same ocean but each of us has our own boat of emotions, and issues we need to deal with. We are all different but with the support, respect, empathy and love we reach out to each other and embrace those feelings another is going through and listen to each others fears, anxieties, anger and frustrations.

      Thank you for being there, it helps so much! ❤

      • #32037
        Colleen Steele
        Keymaster

        @cdvol3gmail-com I was touched by what you just shared. So well expressed. You have been a compassionate contributor to the forums and we are so grateful for your support to.

        Is there another PCP you can ask for? I was told once that it is ok to ask for a different doctor if your clinic has more than one. I hate the thought of you not receiving the care you deserve.

      • #32052
        Jen Cueva
        Keymaster

        Hi there sweet lady, @cdvol3gmail-com; you are so kind and compassionate. Your words so well describe the feelings that many of us have. Thank you for putting that in words.

        We are all in the same ocean but on different boats. That certainly comes from your career but sums it up so well,

        I would certainly try and find a new PCP. You must have access to many others and know that you deserve to find one that works well with you and for you. My PCP, I see about every 3-5 months, it seems,

        Thank you for your heartfelt words and support always.

        We are here for you, too.

    • #32039
      Carol Volckmann
      Participant

      Thank you Colleen. You always have just the right words and the right touch of support.

      Just thinking about what you had to go through to obtain the correct labs for Cullen, I just cringe to think how many times the medical field do the wrong labs or mix them up with someone else. I am so sad for you having to go through all this. It takes so much energy.

      You are right I do need to think about changing my PCP. There are 3 others in the practice. It is so frustrating to have to confront and self advocate every time – it’s exhausting emotionally. I know you can relate to that.

      I hope you have a relaxing weekend. Looks like the sun will be out! One of these days I would love to take the ferry and meet you and your family! 😊❤

      Carol

       

       

    • #32048
      Carol alexander
      Participant

      My most concerning challenge is doing the things for myself my husband did for me sometimes when I try to do them I start to cry witch makes matters worse. Have doc appointment at Temple Wed my granddaughter will drive me it is with the ph doc having an eco Iam concerned after all the stress. Does stress make things worse with anyone else? My daughter is here also but she lives in Texas and I know she must go home this is not fair to her husband so Iam so wrapped up in grief and worry this is not good

      Carol A

      • #32054
        Jen Cueva
        Keymaster

        Hi @carol-alexander, my heart aches for you, my friend. I hate to hear that during this time of grief, you are also feeling guilty.

        You are not alone, and hopefully, you can find some support there in the area. Does your granddaughter live near you? Or, is she there with your daughter from Texas?

        Stress certainly does add to the mix of PH and everything else that you have on your plate. Right now, please offer yourself a bit of grace. You just lost your husband, your soul mate.

        Taht in itself is stressful while grieving, and then add PH, and those appointments must be a challenge. I am grateful that your granddaughter can take you.

        Did your husband have hospice or palliative care? If so, a social worker and grief counselor should be a part of that program. If not, there are many grief support groups all over that you can join. It may sound like something you don’t need now, but it will help you find others who are grieving, too, and know what you’re going through.

        Would moving to Texas near family be an option to ponder later? Or anywhere that you have family close by?

        I’m sending you extra hugs and wrapping you in my arms with love, my friend. My thoughts and prayers are with you.

    • #32050
      Carol Volckmann
      Participant

      I am so sorry Carol that on top of your grief and trying to take care of yourself the stress of your life right now is at it worst. Stress itself is so harmful. It takes us down emotionally and physically and at times it just puts us in a frozen state where we cannot seem to move or make decisions.

      Carol, is there anyone you can talk to even making an appointment to see a grief counselor or group to help you through this. Maybe your daughter while she is with you may be able to find some help for you knowing you will have some help when she needs to go home.

      Having a chronic illness just adds to our stress: stress making appointments, stress making sure you are taking your meds, stress just to run errands. Stress can make you feel  very alone.

      Please know Carol you are not alone. There are folks out there that can help you.

      Sending you my prayers, positive energy and love.

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