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    • #34968
      Colleen Steele
      Keymaster

      Is your medical calendar for July heating up or cooling off?

      A few mentioned that so far it looks like this will be a less stressful month regarding appointments and other medical-related concerns. But I know that unfortunately, this is not the case for others.

      What tests, procedures, appointments, or new treatments are you anticipating experiencing this month?

      As always, we are here to offer our support through it all.

    • #34993
      Jen Cueva
      Keymaster

      I guess my July is heating up again as last week was a slow week with appointments for me.

      This week I have a pain doctor and psychiatrist appointment. Next week labs and dental appointment. The following week is PH clinic and kidney doctor appointments.

      What about you @colleensteele?

      • #35001
        Colleen Steele
        Keymaster

        @jenc oh you have a busy month ahead of you! Are you concerned about any of the appointments? Dentist again? How is that going?

        Cullen sees his kidney doctor on July 26th.

        Repeat labs in a week or so because one of his transplant meds levels were too high last they were taken.

        He wants to schedule an appointment with Neurology and is considering asking if he can lower his migraine medication. He’s been on it a long time but he thinks it’s starting to affect his concentration and sleep. It will be worrisome if he tries a lower dose and maybe risk migraines returning as a result. I’ll let you know when we get the appointment scheduled.

        • #35006
          Jen Cueva
          Keymaster

          Hi @colleensteele, yep, it is a busy month. But all will work out. I won’t know much about the dental plan until I see the oral surgeon next week.

          Tell Cullen I see my Nephrologist on the 20th. Cheers to both of us having good reports. I certainly hope he can decrease his migraine medication without any trouble.

          Do you have any appointments scheduled for you?

    • #34996
      Debbie Moore
      Participant

      @jenc that is a lot of appointments!  I have an appointment with the beach for a week, then to return to an eye appointment and dental appointment on the same day at the end of the month.  Easy month for me.

      • #35002
        Colleen Steele
        Keymaster

        @debbie I had to re-read! “Did she say she has a beach appointment?” I love that! If you need an advocate for that appointment let me know! Enjoy!

        • #35005
          Jen Cueva
          Keymaster

          LOL, @colleensteele and @debbie, a week-long appointment with the beach, wanna trade? I’ll hopefully get some beach time in this weekend.

          Kudos for making your dental and eye doctor visits on the same day. Do you always schedule them like this, or is this coincidental?

          Wishing you all the best at the beach for a week and then those appointments. When do you head to the beach? Is it Myrtle Beach?

        • #35010
          Debbie Moore
          Participant

          No way @jenc do I want to trade!  I’ll take the beach any day over any kind of doctor.  We leave on Monday for Isle of Palms SC.  We have a time share there.  Had it since it was built.  Feels like a second home, but definitely different than before PH.  No swimming in the ocean or pool .  I saw a little floaty device for an air cylinder, but I did not think about getting it in time.  I’m not sure my oxygen provider would even have the tiny cylinders.  Worried about sand getting in the POC and the heat zaps my energy.  But I still want to go.  I’m originally from Charleston SC.  Only family left there is my husband’s brother and nephew.  I enjoy them.

          My insurance changed so I had to get a new eye doctor and dentist.  I’m two months past my six month check up, so I took first available.  Then the eye doctor didn’t have an opening until November!  I’m having trouble with on of my eyes, so when there was a cancellation I grabbed it.  I don’t like to schedule more than one doctor’s appointment in a week.  Desperation, so what  can I say.

        • #35013
          Jen Cueva
          Keymaster

          And you can order and get it tomorrow. I understand your concerns about the sand in your POC. I take mine out of the bag and clean the filters and the outside with alcohol when I return from the beach; I use a Qtip with a bit of alcohol to get into any small crevices where sands tend to gather.

          Ughh, sorry about your insurance changes and eye problems. Hopefully, you’ll get in and get a new prescription. Do you already use glasses?

          I look forward to hearing about your beach trip once you return. Enjoy as much as you can.

    • #35086
      Jen Cueva
      Keymaster

      @colleensteele, do you have any appointments that you need our support and prayers for this month? Hint hint- maybe next week?

      Let’s ensure you’re taking care of yourself, too, my friend. You’re so busy caring for everyone else.

      • #35101
        Colleen Steele
        Keymaster

        You’re a stinker @jenc but I love you for it!

        Yes, I have an appointment with my internist on Monday to discuss neuropathy in my foot and leg among some other baffling symptoms. So far xrays and labs aren’t providing answers.

        • #35125
          Jen Cueva
          Keymaster

          Hi @colleensteele, I’ll say a few extra prayers for you on Monday, 7/18. I hope and pray that you get some answers, maybe a doppler of your leg, perhaps? Neuropathy can be a big pain and such an odd feeling. I hope you get some relief soon- I love you, too.

        • #35159
          Jen Cueva
          Keymaster

          Thinking of you today and sending you positive thoughts and prayers as you see your Internist today. How’s your eye doing today? Any relief?

        • #35175
          Colleen Steele
          Keymaster

          Thanks @jenc. The doctor prescribed an antibiotic for my eye on Friday and it has helped. She is referring me to a neurologist to have nerve testing done to try and figure out where the neuropathy is stemming from and what can be done about it. She also wants me to have a brain MRI due to that and some other symptoms…just to rule things out.

          I gave her my list of symptoms and before she looked at it she said,
          “Well, you are under a lot of stress so a lot of this is probably anxiety.” Cullen was FURIOUS when I told him she said that. But she did eventually look at the list, dismissed a lot of it to stress but expressed concern about a few things which is why she wants the brain MRI. She also wants me to try a prescription to help get my headaches and migraines under control. It happens to be what Cullen takes so I’m already familiar with it and the side effects, but I’m going to try it.

        • #35181
          Jen Cueva
          Keymaster

          Ughh, @colleensteele, that’s so frustrating when doctors immediately want to dismiss concerns with stress and anxiety. Too often, we hear this; we still need so much education from healthcare providers. I’m grateful for the ones who are concerned. I’m sorry, Colleen.

          But after your list, I’m happy that she rethought this and made suggestions. Which medication is Cullen on again for Migraines? Manny takes sumatriptan (Imitrex).

          Hopefully, you won’t have to wait too long to have the nerve testing done. Is this an EMG, by chance? I’m grateful she ordered the antibiotics, and your eye is improving.

          It sounds like she had a change of heart by the end of the visit and was concerned. I’m surprised she still didn’t order the doppler to check blood flow in your leg.

        • #35193
          Colleen Steele
          Keymaster

          @jenc Cullen is on Topiramate (Topamax). It’s the one his doctor said some people call Dopamax because it can cause significant brain fog. Cullen said he will keep an eye on me and let me know if he notices significant side effects.

        • #35236
          Jen Cueva
          Keymaster

          Hi @colleensteele, hopefully, you won’t need it now that she ordered something for migraines. Please let us know how it goes if you take one. Of course, “Dr. Cullen” will always watch after you and get out his boxing gloves if needed. Hehe.

    • #35112
      Terese Tuohey
      Participant

      Hi, everybody!  I just got back from my follow-up visit with my pulmonologist.  I know another thread had been about nodules in the lung.  I have had those, and I had a CT in July to double check it.  The report from my Dr:  It’s GONE!  Praise the Lord!  apparently these things can come and go.  My Dr. said he’d see me again in Late April or early May, but no more CTs!  Needless to say, I’m delighted.  Brenda, if you are reading this, take heart.  These things DO go away!

      Now to have my annual eye check, and my GYN and I’m DONE with doctors until October.  Yay!

       

      • #35113
        Colleen Steele
        Keymaster

        @tervo that is excellent news! Thank you for sharing the good news with us and perhaps giving @brendad53 some hope!

        May the next 2 appointments bring good news as well then enjoy a long vacation from medical appointments! What ever will you do with your time?!

      • #35117
        Brenda Denzler
        Participant

        Nice to know, Terese! In my case, over the course of 10-13 years, they’ve increased rather than gone away. And unlike your doctor, who has been taking them seriously and watching them, my doctors brush them aside as irrelevant. Any “following” of them has had to be at my request/insistence.

        But it’s nice to think that for some people, sometimes, they do go away. 🙂

        • #35127
          Jen Cueva
          Keymaster

          Ughh, unfortunately, that’s a huge problem, @brendad53, as you know too well. Too many medical professionals do not take their patient’s concerns or tests seriously. I’m grateful that you’re finally finding a few that listen to your concerns. You deserve that!

      • #35126
        Jen Cueva
        Keymaster

        That’s awesome news, @tervo! Thanks for sharing such a positive update and offering hope to Brenda and others who have also had nodules that they are worried about.

        Hoping you continue the positive reports for your eye and GYN appointments. Congrats on getting through a long few months of this medical appointment marathon!

    • #35153
      Roger Bliss
      Participant

      Had an appointment with my pulmonologist here in AK today. Took a x ray and I don’t need a lung draining. He found something in my tests from UCSD he wants to talk to the PH doc down there about. He agreed I can stay off Tyvaso. Hopefully, all the docs will get along.

      I am feeling very good (for me). Got out of breath carrying a suitcase from the pickup into the house and up to the second floor. Other than that I can function fairly normal. Seems like the more I stay away from doctors and their drugs…..the better I feel.

      • #35162
        Jen Cueva
        Keymaster

        Hi @wheeldog, I’m happy to hear that you aren’t retaining that extra fluid that requires draining. I know that’s a relief for you, too; let’s keep this going!

        Interesting, did he say what concerned him in the reports at UCSD, or was he planning to speak with them first? It sounds like you’re doing quite well since stopping Tyvaso.

        I had to laugh at your comment about feeling better as long as you stay off meds and away from doctors, hehe. Take care and take breaks.

        Wow, carry a suitcase from my car inside the house, and I’m short of breath. Adding the stairs is a jump. That’s excellent news!

      • #35176
        Colleen Steele
        Keymaster

        @wheeldog I appreciate your updates because I often wonder how you are doing. Sounds like things keep getting better and I’m hoping that status continues!

    • #35188
      Darla McCollim
      Participant

      Its not just heating up but scorching! My cancer has come back and surgery this time is needed to get rid of a base ball sized mass and of course IPAH adds loads of risks to what otherwise is pretty routine stuff.  The combo is just scary and Pulmonary has the final say about my future.

      • #35191
        Colleen Steele
        Keymaster

        Oh @darlarayne I am so sorry to hear that the cancer has returned. How are you dealing emotionally with everything? Remember we are always here for you even if you just want to vent. Due you have a date for the surgery yet?

        • #35195
          Darla McCollim
          Participant

          I am normally a very take it one day at a time gal and that comes from being a RN for 35 years. This time I am more anxious than ever. I’ve got a great medical team but my body is so medically fragile at the moment.

          No dates yet but it will be soon possibly next week or two. I need to constantly remember the Serenity Prayer. Thanks!

           

        • #35199
          Brenda Denzler
          Participant

          Darla, as a survivor of a very aggressive form of cancer, myself, my heart drops with yours at the news that your cancer has come back. I’m so sorry.

          I want to second what Vicky said. I had a hysterectomy AND, many years later, a modified radical (or radical, depending on who looks at the results) mastectomy. And I had general anesthesia for NEITHER of them. Epidural for the hysterectomy, and paraverbetral block (which amounts to the same thing?) for the mastectomy.

          If this would mean the difference between your being able to get the mass removed or having to let it be and rely on radiation and/or chemo to manage it, by all means, push hard for a non-general-anesthesia option.  It does exist sometimes.

          And please keep us informed. <<hug>>

        • #35206
          Colleen Steele
          Keymaster

          @darlarayne allow yourself the right to feel anxious. You have a lot going on so it is understandable that taking things one day at a time is difficult for you right now.

          The Serenity Prayer is one of my favorites! I wish you serenity, courage and wisdom!

        • #35230
          Jen Cueva
          Keymaster

          Hi @darlarayne, I hate to hear that your cancer is back and you need surgery. It’s only natural to be anxious with all you have going on.

          You’re a nurse, but you’re still human. Right now, you’re the patient. I know it’s never fun; I worked in nursing, too.

          We are here and will walk you through this difficult time. I’m happy that you have a great team taking care of you. The serenity prayer certainly is one I find myself often praying, too. I’ll keep you in my thoughts and prayers.

    • #35196
      Vicky Olsen
      Participant

      Hello @darlarayne So sorry to hear about your upcoming surgery. If your surgery is in your lower abdomen, you could probably have a spinal anaesthetic with a slight sedative instead of a general anesthetic. That would be way easier on your lungs. Take care.

    • #35211
      Carol Volckmann
      Participant

      I just went on the forum this morning to update my recent tests: 6MW really went well and EKG also no change.

      Then I read about your upcoming surgery Darla and my heart goes out to you – you are in my thoughts, prayers and I send you positive energy along with so many others to help get you through this with positive outcomes.

      It sounds like you have a good team working on your side. I think right now it is important for you to let your body rest and get strong and to reach out to those who support you and to ask for their help.

      Again, prayers and loving support are right with you. ❤

      • #35232
        Jen Cueva
        Keymaster

        Hi @cdvol3gmail-com, excellent news about your recent tests. Don’t you love when you are keeping pretty stable on them? My visits this went pretty well, too. I’m grateful.

        Your heartfelt message to @darlarayne makes my heart smile.

        Are you now done with your July appointments?

    • #35245
      Vicky Olsen
      Participant

      Hello, I fainted yesterday and then had severe lower back pain.It turned out that I got a compression fracture in my first lumbar vertebrate. On pain meds for several days. Not what I needed right now. I’m supposed to be at a music festival all weekend. Maybe Saturday…

      • #35246
        Brenda Denzler
        Participant

        So sorry to hear this, Vicky. Any idea why you fainted? It sounds like you fell when you fainted, which is what gave you the fracture.

        If you can tolerate the moving around and have someone to go with you to the festival and help you, perhaps a reclining lawn chair and pain pills and good music will have a healing effect? <<hug>>

      • #35257
        Jen Cueva
        Keymaster

        Oh no, @vicky1437, I’m sorry to hear about your syncope episode and the fall. The fractured vertebra sounds extremely painful. Maybe you can go for part of the day. But it sounds like you need to take a dose of pain medications first. I can imagine that sitting or standing for long would be extremely painful.

        Do you have fainting (syncope) episodes at times with PH? I did but mostly early on before I was on the best treatment plan.

        Here are a few topics that you may relate to:

        30 Days of PH- Terra’s Story

        Fainting

        What type of music festival is it? I enjoy going and listening to live music. Please be careful and try to enjoy the music festival as much as tolerated. Let us know how it goes.

    • #35270
      Vicky Olsen
      Participant

      Still having severe pain today. Taking long acting Tylenol with the hydromorphone. If I keep the pills on time, it is bearable.
      I am missing the first 2 days of the Calgary Folkfest. Music is from around the world and is usually quite good. There is a main stage and 7 smaller ones plus at least a dozen foodtrucks and lots of crafty things for sale.
      My husband has been going. Tomorrow, I will go there too if I feel a bit better and take a cab home when I have to leave.
      I have fainted twice before a couple years ago, before PH. I will call my cardiologist to see if I need to have my meds changed again. #

      • #35272
        Colleen Steele
        Keymaster

        @vicky1437 I feel so disappointed for you! The Calgary Folkfest sounds like a lot of fun. I hope you are able to go tomorrow and don’t experience any medical concerns. I hope you husband has at least been able to bring home a few treats and/or crafts for you?

        Sometimes it’s not a matter of changing medications but changing the dosage. Would you rather that be the case?

        Keep us updated! Let us know if you were able to attend the festival.

      • #35284
        Jen Cueva
        Keymaster

        Oh, No, @vicky1437, I’m so sorry that you missed some of the Calgary Folkfest. I hope that you could go for a bit yesterday. Did you have the opportunity to attend? How are you feeling today? I imagine you are still having some pain after fainting.

        Hopefully, you can call your PH doctor and let them know to see what they may suggest. As @colleensteele said, medicine can sometimes be increased to see if that helps.

        We are here anytime and look forward to an update soon. I hope to hear more about the Folkfest, too.

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