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    • #34552
      Colleen Steele
      Keymaster

      We are approaching the lazy days of summer, but unfortunately that doesn’t mean we don’t have medical appointments.

      What is on your medical calendar for June? Fill us in on any upcoming procedures, tests, or treatments so we can offer emotional support.

    • #34555
      Colleen Steele
      Keymaster

      Just want to apologize for disappearing for a few days. My youngest is moving to Louisiana and I’ve been busy helping him get ready. He accepted a promotion there for the company he works for. I’m excited for him but it was so hard to see him leave (he left yesterday).

      He is driving so if you wouldn’t mind keeping him in your prayers I will appreciate it. He will be on the road for probably 4 or 5 days.

      That’s my big thing going on this month.

       

      • #34607
        Jen Cueva
        Keymaster

        Hi @colleensteele, I’m happy that he made it there safely and that all is going well. I know it’s never easy to watch our babies leave. Please know you’ve been in my thoughts and prayers, as I know how difficult this can be and your excitement for him. Congrats on his promotion; IDK if I already told you that. Hehe.

        That was a huge event; thanks for sharing, Colleen. No need to apologize. I got you, my superstar, FWW(forum work wife)! You always cover me when I need to be away.

    • #34576
      Vicky Olsen
      Participant

      A referral was sent to the PH Clinic in Edmonton early last week from my family doctor.  Today, I was phoned and told that the team was reviewing my info and will decide what further testing I should have before my initial appointment.

      I live in Calgary (186 miles away).  My Cardiologist in Calgary had delayed my appt. again, so I decided to go directly to the PH Clinic.  My RVSP is 40, 68 yrs old.   From my reading online, 40 may be borderline for PH  at my age.  I have also been on entresto for left sided heart failure for ~5 years and it has just recently been shown to help PH.  …… Waiting

      • #34590
        Colleen Steele
        Keymaster

        Way to advocate for yourself @vicky1437! Yes, a PH specialist is the way to go if you are able. It sounds like they became pro-active right away and fingers crossed they will be to decide quickly on an effective treatment plan for you.

      • #34608
        Jen Cueva
        Keymaster

        Hi @vicky1437, excellent job at self-advocating, like Colleen, says. I hope that continues to be proactive because a PH specialist is best if you can get there. Please keep us updated and keep on being your best advocate!

    • #34591
      Jenney
      Participant

      I have a couple of things on my calendar. I’m having a 6 minute walk test, pulmonary function test and a cardiac MRI. I’ve never had the cardiac MRI before so that one has me a little nervous as I’ve read it can take over an hour. I’m not real claustrophobic but that feels like it would be pushing my limits.

      Although I was diagnosed with PAH in 2018, I didn’t have a pulmonologist knowledgeable in that particular area. I now do (hopefully). I’m only on ambrisenten right now but my new doctor says he will discuss a second med after he sees the results of these tests and possibly another right heart cath. I am also on spironolacton for a  heart condition and breyo inhaler for mild asthema. I was on tadalifil for 3 days and ended up in the hospital struggling to breathe so that one is out, altho it was suggested to me to talk to my new doctor about whether it could have been a wrong dosage.

      I guess I just feel nervous. Although I was left to struggle in the dark about PAH, not pursuing it with a professional gave me the dangerous “luxury” of not dealing with it. Now it’s in my face and I’m having to deal with the diagnosis all over again. I’m so afraid I’ll find out the 4 years of hiding my head in the sand has done so much harm, possibly taking years away from me and my new grandson. I guess we will find out.

      • #34609
        Jen Cueva
        Keymaster

        Hi @jenneyeiklor, it sounds like the PH team is proactive and will find the best treatment to add to your plan after you have these tests. The cardiac MRI is much less invasive than the heart cath, as you know. Do they have an open MRI machine that you can have it done at? That may be a question for them if you think you may struggle with the usually closed one.

        Here is a little more information about a cardiac MRI.

        I can understand that now you will have PH as the main focus. But finding a knowledgeable PH specialist can also make a difference in your overall quality of life. Once they find the best treatment plan for you, you could be here and enjoy that baby grandson longer. Allow yourself a little grace and know that you are now your best advocate by seeing a PH specialist.

        When are your testing and appointments this month? We would love to send you positive thoughts and prayers. You can do this; you are doing what is best for you now; that’s what’s important. Kudos for making this huge step.

        Hugs to you as you struggle to bring your PH front and center.

    • #34610
      Jen Cueva
      Keymaster

      Thanks, @colleensteele; it would be nice to take summer breaks from appointments, right?

      This month, I see a psychiatrist this week after some struggles with anxiety, “funk, almost depression, and continued difficulties with focus and concentration post-COVID. They want to know if it’s that or something else. I wasn’t happy about this one but needed to get it done. I need prayers and positive thoughts for this one; tomorrow afternoon.

      On another note, I also have my sutures removed this week, finally from my oral surgery several weeks ago. I wished they would have used those self-absorbing ones, but it was after a bone graft that was not recommended. I also had a pain management appointment this week, but it was too much at different locations, so I changed that until later this month.

      Labs again in 2 weeks. Fridays were a repeat from the prior week, and thankfully my sodium was a few points higher, enough to keep me at home and try a few solutions. The kidney doc will hold off until next month unless my labs are not improved this next time.

      I think that’s it, for now, anyway.

    • #34611
      Jen Cueva
      Keymaster

      Hi @cdvol3gmail-com, I think you had an appointment you were looking forward to last week on the first. How was that, and how are you feeling this week?

      I know you have a few others coming up this month. How can we best support you?

      • #34613
        Carol Volckmann
        Participant
        • Hey Jen, you are right. Last Friday I finally had the medtronic stimulator removed after having to reschedule several times. This week Thursday I redo the SIBO test and send it back to UW digestive dept of the GI Dept. The following week I see an ENT doc to see what is going on with my voice. I have brought this subject up to so many of doctors in the last year to no avail. Finally someone was listening – my Rheumatologist. So … I will hopefully find out what is wrong.
        • I think you have some labs coming up this week checking on your kidney function. Keep us posted on that sweet woman. Sending lots of love ❤ 😍
        • #34626
          Jen Cueva
          Keymaster

          Hey there @carol-alexander, I’m so happy you finally had that stimulator removed. How are you feeling post-removal besides celebratory? Has the soreness resolved for you yet?

          I know you’ll be happy to be done with that SIBO test again, too, especially the diet you’ve had to adhere to.

          Oh no, your voice, is it hoarseness or something else you’ve been dealing with? I hope your Rheumatologist has some answers for you. I know many of us with PH to have times of hoarseness is why I ask. I’m so sorry this all is nonstop, and your appointments keep you busy. Please keep us posted and stop and do something you enjoy, like read a good book, when you are done with these. Take time to rest, too.

          My labs were done Friday, and a tad improved, thank you. My doctors are good with me waiting another few weeks unless I have any complications to recheck them. It’s a balancing game with my chronic kidney disease, yes, you remember correctly. That’s so thoughtful when you have enough on your plate, my sweet PHriend.

    • #34614
      Becky
      Participant

      I’m new to PH, having just recently been diagnosed with moderate pulmonary hypertension. I have many health issues through the years. My husband says jokingly, add it to your list! He has always been supportive and we both try to keep our spirits up when dealing with such medical issues. For this month, I finally am seeing a pulmonologist that treats PH. This is a group of pulmonologists that are all knowledgeable in PH and are board certified, including critical care. I’ve been trying to get seen by the pulmonologist for for 2 months. I guess because there aren’t all that many in my area that can treat PH.

    • #34615
      Carol Volckmann
      Participant

      So glad to hear Becky that you are going to see a PH Pulmonologist. Hopefully he/she will be in the same hospital as your other doctors so they can work as a team with you and your husband. What are your other health issues? They all may be related. My Scleroderma caused my PAH and many of my health issues. Wishing you the best in hopes this Pulmonologist will be a good fit for you. Sending you positive energy 😊.

      • #34617
        Colleen Steele
        Keymaster

        @rebeccacomer just a forum tip: There is the option to “comment” which is what you used to respond to Carol. It isn’t wrong to do that except it won’t be found under the topic for everyone to read. It’s best to click on the topic (In this case, :What Is On Your Medical Calendar For June”, scroll down to whoever you want to respond to and click on “reply”. I did that for your response to Carol so everyone can see it.


        @cdvol3gmail-com
        , thank you for replying to my comment. I am a 25-year breast cancer survivor, post bilateral mastectomy. I have dealt with chronic pain due to fibromyalgia and widespread osteoarthritis. Also have had several cervical fusions in the past. I had GERD severely due to a large hiatal hernia and underwent an open Nissen fundoplication and pyloroplasty. Since then, I’ve developed a paraesophageal hernia that had been reported as having 50% of my stomach. Recently have become symptomatic (pain and bloating) and seeing my gastroenterologist for more tests before being sent back to my surgeon. One significant factor I have in regards to PH, I have been diagnosed as having Hashimoto’s thyroiditis. My list goes on but don’t need to post it all. I appreciate the positive vibes, Carol.

        • #34618
          Colleen Steele
          Keymaster

          @rebeccacomer oh my gosh you are dealing with a lot! I am so glad you found us because as you can already tell by @cdvol3gmail-com response, we have a great group of people here ready to offer their support and advice based on personal experience.

        • #34620
          Becky
          Participant

          Truthfully, I am sure there’s many others that are having to deal with more than what’s on my plate. I’m still living and feeling fairly good on this day. I count myself as one of the lucky ones.

        • #34619
          Becky
          Participant

          Thank you, Colleen. I’m learning as I go and appreciate all the help I can get. Ever since my husband and I had COVID in early October last year, I have struggle with mental fog. I don’t know if I should attribute it to COVID or my SOB with PH. And then there’s the age factor that I’m sure doesn’t help.

           

        • #34627
          Jen Cueva
          Keymaster

          Hi @rebeccacomer, I’m so sorry you have been through so much with your health. I’m happy you’ve found us and know we are here to support you.

          I have to say that we have some of the most empathetic members who have related in many ways. You do indeed have a ton on your plate. But you also sound like you advocate for yourself, and that’s awesome and critical when trying to manage multiple health conditions. I second the suggestions that @cdvol3gmail-com; it helps to help most if you can’t have all of your specialists in one hospital system so they stay updated and can utilize the same chart system. I’ve found that out the hard way before. But also know at times, it’s nearly impossible when you have so many on your care team.

          How are you doing overall with this all? It can be overwhelming, and my plate is certainly not as full as yours, my PHriend. Hugs, warm thoughts, and prayers, if that’s OK, are with you.

        • #34629
          Colleen Steele
          Keymaster

          @rebeccacomer in case you are interested we have discussed brain fog a number of times on the forums. Below are links to those conversations. Feel free to join the discussion, share or ask questions.

          Finding Humor In “Brain Fog” and other symptoms

          Brain Fog

          And, here are two columns about brain fog by our former forum moderator.

          Learning to Manage Brain Fog

          The Battle of the Brain Fog

           

        • #34685
          Debbie Moore
          Participant

          Hi Becky – I’m right there with you.  Since COVID, I have not been able to remember words in conversation.  Wonder if it is COVID brain or lack of oxygen.  I’ve got the age factor as well.  Welcome to the group!

        • #34693
          Jen Cueva
          Keymaster

          Hi @rebeccacomer and @debbie, I’m with you ladies. I continue to have brain fog and neurological issues post-COVID. I also wonder whether it is low oxygen, long-term-COVID, or age (last). I saw a psychiatrist last week, and she said it was part of my long-term COVID effects.

          It’s frustrating and difficult to distinguish what is causing it when you have multiple health issues. But you’re not alone. It sucks!

        • #34698
          Becky
          Participant

          Jen, you are so right about it being so frustrating and difficult to distinguish what is causing our brain fog. One thing I do know it seemed to be exacerbated by my bout with COVID last October. I haven’t been back on the forum as I have had many doctors’ appointments and tests. The pulmonologist I was waiting to be seen by was able to work me in last Thursday afternoon. I have to have a home sleep study and some type of lung perfusion scan? Those are now set up at the hospital here in Crestview and will go back to go over all of those results at the end of the month. I am also having to see the gastroenterologist and having more tests due to steatorrhea I have been having, along with other symptoms. I may have a celiac disorder. It’s a never-ending saga!

        • #34708
          Becky
          Participant

          Jen, you are so right about it being so frustrating and difficult to distinguish what is causing our brain fog. One thing I do know it seemed to be exacerbated by my bout with COVID last October. I haven’t been back on the forum as I have had many doctors’ appointments and tests. The pulmonologist I was waiting to be seen by was able to work me in last Thursday afternoon. I have to have a home sleep study and some type of lung perfusion scan? Those are now set up at the hospital here in Crestview and will go back to go over all of those results at the end of the month. I am also having to see the gastroenterologist and having more tests due to steatorrhea I have been having, along with other symptoms. I may have a celiac disorder. It’s a never-ending saga!

        • #34712
          Jen Cueva
          Keymaster

          Bless you, @rebeccacomer; you certainly have a ton on your plate. How do you manage my PHreind? I know it is frustrating and challenging to balance appointments while managing multiple health conditions.

          The effects of long-haul COVID are unreal, and it’s still hanging around for me. Thank God, it isn’t anything like I came home with, though. For that, I’m grateful.

          A home sleep study to rule out sleep apnea and a lung perfusion test are standardized tests that many of us have been through. For me, the sleep study was at a sleep center. I probably would have slept better if it was at home. I don’t have sleep apnea, but I do desaturate at night, so I wear oxygen at night and with walking and as needed at home.

          Here are a few posts that you may find helpful.

          Have you had a sleep study?

          Lung Perfusion Scan

          I hope that you are resting in between a busy month of appointments. That too, can be draining. But so grateful that it sounds like they are scheduling things quickly for you. Take care, and please let us know how we can best support you.

        • #34697
          Becky
          Participant

          Debbie, thank you sending me a reply last week and sorry to be so slow in replying. I have been told that brain fog is recognized as a long COVID side effect. I have read that it can also be due to the PH shortness of breath. Guess we could have a double whammy!

        • #34621
          Carol Volckmann
          Participant

          Hi Becky, you really have a full plate! You also have a positive attitude that serves you well. There are so many medical issues going on with PH patients.

          I have also been dealing with GI issues and my Rheumatologist has reconmmend that I have a SIBO test to see if my bloating and pain is due to overgrowth bacteria. SOBO test is the least invasive and a place to start and… can be under control when treated.

          Wishing you good luck, prayers and keeping a strong attitude. Stay well and stay safe 😊❤

    • #34686
      Debbie Moore
      Participant

      I made an appointment with my pulmonologist.  I’ve only telephone met him once.  I am making my list of questions that my first pulmonologist would not answer and more questions since living with this for a year.  This is my only appointment for medical this month!!  Woohoo!!

      • #34694
        Jen Cueva
        Keymaster

        Way to be prepared, @debbie! What day is this face-to-face appointment this month? I would like to send you positive thoughts and prayers.

        Is there anything you need to ask about your anniversary cruise while you’re there?

        Please let us know how we can best support you.

        • #34699
          Debbie Moore
          Participant

          @jenc I meet with the doc next Monday the 20th.  I have a long list of questions and yes, the cruise will be on there as well.  Thanks for the positive vibes!

        • #34713
          Jen Cueva
          Keymaster

          Hi @debbie, I’ll be off to attend a funeral on the 20th but will be thinking of you and sending you positive thoughts and prayers, my Phriend. Please let us know how that in-person appointment goes. I hope that you’ll like this new pulmonary doctor.

      • #34700
        Colleen Steele
        Keymaster

        @debbie your appointment and cruise will be in my thoughts and prayers! May all your questions get answered and the cruise be all that you hoped for!

        • #34703
          Debbie Moore
          Participant

          Thanks @coleensteele!  I’ll keep y’all posted!

    • #34687
      Roger Bliss
      Participant

      I Only had 1 appointment on June 3rd and if nothing goes wrong, I won’t have any appointments till August. I had to meet with an oncologist just to have one available. Mine at UCSD can’t do teleconferencing with me anymore since I am in AK, it is considered practicing medicine without a license. The appointment was a non event. My oncologist at UCSD is calling all the shots (he can work with other doctors) and the one up here is willing to go along with it. I have to do blood work every 2 or 3 months. My June blood test showed everything in the normal range except one thing was 2 tenths low. My lung x-ray showed very little fluid, so don’t need to be drained.

      Still off Tyvaso and doing good. Seems whenever I get off a drug I do better……go figure. I still get short of breath if i do too much or move too fast. They still think I have some form of PH, but not sure which one.

      Haven’t been on here in a while as work is a zoo. Very busy doing 10 + hours a day 6 days a week, then do paper work and working on the truck Sundays. Things are just starting to slow down now. At first I was getting fried working so many hours, but have gotten used to it now. Amazing how much better I feel getting by keeping on the move.

      • #34695
        Jen Cueva
        Keymaster

        Hey @wheeldog, I figured you must have been busy with work since I hadn’t seen you on here lately. It sounds like all is going well with your excess fluid, and no drainage is needed; that’s excellent news!

        I’m happy to hear you’re doing well since stopping Tyvaso. But it certainly sounds like work is keeping you busy as a bee. Please take breaks and time to rest. I know you want to stay busy as long as you can. But it doesn’t sound like you’re even resting on Sunday. Mary Ellen needs to crack that whip and have you relax a little or tie you down in a recliner with your feet up. Hehe. Do you swell in your feet and ankles driving the truck all day?

        Crossing my fingers that you’re free of appointments until August. That’s such a great feeling, right?

        • #34749
          Roger Bliss
          Participant

          Actually, the work is helping me out. I feel much better. My left foot was slightly swelled up, but went back to normal when I started working a lot……go figure.

          I did hire a guy to wash/grease the truck on Sundays, but I have to be there and “point” as he is learning.

        • #34755
          Colleen Steele
          Keymaster

          @wheeldog hmm, that swollen foot could be a sign of a circulation problem and your recent increased activity might have helped it. Even though it has improved I would mention it to your doctor if you haven’t already.

          I bet your pointing skills are “on point”! Ha, I know, don’t quit my day job!

        • #34762
          Jen Cueva
          Keymaster

          Hey @wheeldog, I’m glad that working and moving around is helping your swelling. But I would mention that to your medical team when you see them again.

          It sounds like you’re like me when Manny is doing projects. I’m the pointer, aka supervisor. You know, so he doesn’t miss anything. Hehe.

          I hope you and Mary Ellen have a less busy weekend, and you can fit some fun in there, too.

        • #34763
          Jen Cueva
          Keymaster

          Hey @wheeldog, I’m glad that working and moving around is helping your swelling. But I would mention that to your medical team when you see them again.

          It sounds like you’re like me when Manny is doing projects. I’m the pointer, aka supervisor. You know, so he doesn’t miss anything. Hehe.

          I hope you and Mary Ellen have a less busy weekend, and you can fit some fun in there, too.

      • #34705
        Colleen Steele
        Keymaster

        Geez you have been busy @wheeldog! So work is starting to slow down in time for you to also enjoy time off from appointments? What will you do with all the free time? Anything planned for the summer?

        • #34751
          Roger Bliss
          Participant

          Don’t have a lot of free time, but have some….took today off. It’s always a zoo the first few weeks after road restrictions go off.

          Got LOTS of stuff going on this summer. Grand daughter will be here a week or so the end of June. A friend from AZ will visit for a while in July and 5 of ME’s cousins will be here the end of August. I’ll probably take a day here and there while we have company.

          I haven’t had an appointment with my Pulmonologist since I got back and off Tyvaso. Don’t know if he knows I visited a PH doc at UCSD??? I am going to deliver gravel to his house Sat. and to his office next week. This should be interesting!!!LOL

        • #34753
          Colleen Steele
          Keymaster

          @wheeldog it’s nice to start the summer with some plans in place. It gives you something to look forward to!

          That’s funny that you will be delivering to your pulmonologist. Is he aware it will be you or a surprise? Surprise…it’s me and surprise, I’ve seen someone else! Hehe!

        • #34782
          Roger Bliss
          Participant

          Yeah……he knew it was me. He contacted me to haul to his house. Supposed to haul to his office in a couple weeks.

          I do know he texted back and fourth with the PH Doc at UCSD……..he showed me on his phone. I didn’t take the time to read it though. He was very upset about them putting that tube in me. The PH doc had nothing to do with it. Got it long before I saw her.

          I don’t know how much info they sent him. Or how he knew about the tube?? Apparently they left him out of the loop??? My regular guy (PA) got all the info. He only sent it to the Oncologist, that I know of. He contacted my regular guy to get it sent to him.  I’ll schedule an appointment to figure this out.

          I heard of things getting weird in love triangles. Now I am in a “doctor triangle”…..wonder how weird this is going to get.LOL

           

        • #34784
          Colleen Steele
          Keymaster

          @wheeldog I’m laughing that you mentioned the “love triangle” because in my previous post I thought about asking you if he knows you cheated on him. LOL!

          I’m also laughing (a little) that your doctor, knowing your medical history, hired you to “haul” to his house.

        • #34803
          Jen Cueva
          Keymaster

          Hehe, @wheeldog, that doctor love triangle is too funny! But I hate that he was left out of the loop. But glad he had some of the info from UCSD anyway.

          Too funny that you were his gravel delivery guy!

          That’s awesome that your granddaughter will be 14 and having a birthday party there with you and Mary Ellen. Does she help you around the house and with the gravel company stuff?

          Thanks for sharing your doctor love triangle soap opera with us. Never a dull moment between all of us here, right?

        • #34838
          Roger Bliss
          Participant

          Guess I am in his good graces. Was supposed to haul to his office in a couple weeks. Well that got changed to yesterday. Just supposed to haul a couple loads to make a pad for a connex. One of the landscapers I do business with brought a piece of equipment over to spread it out. We figured an hour or two to get it done.

          Well the job kept growing….can you do this and that. 2 days later we just finished putting in a parking area and a circular drive.  Guess he was happy. Now he wants more stuff done around his office.

          So much for no appointments till August…..got an appointment with him for July 15th. One of the landscapers who has a c-pap machine doesn’t like his present doctor ….he is making an appointment with him.  Weird how things happen.

           

        • #34853
          Colleen Steele
          Keymaster

          @wheeldog like the proverb suggests, “One hand washes the other”. Your doctor supplied you with work and you helped him find a new patient. My dad is a firm believer that everything happens for a reason.

        • #34862
          Jen Cueva
          Keymaster

          I love this old proverb, @colleensteele, and so true. Like your dad, I believe everything happens for a reason. Thanks for this reminder for me to read as I begin the new week.

        • #34764
          Jen Cueva
          Keymaster

          LOL, @wheeldog, that will be a big surprise when you show up with gravel and share your news. I hope that goes well.

          It sounds like you have a busy summer planned between working a busy schedule. That’s exciting to have the granddaughter and your friends come for a visit. How old is your granddaughter now?

        • #34783
          Roger Bliss
          Participant

          The doctor knew I was the delivery guy. He called me to do it. Got quite a soap opera going on here. See my post to Colleen.

          Grand daughter will be 14 July 8th, gonna have a bd party here for her on the 10th.

    • #34709
      Terry
      Participant

      So , I saw my Pulmonologist today for an update and get my results from the cardio echo .
      Pressure has gone from 65 three months ago to 57 as a result of being back on the tadalafil. I’ll take that thank you even though the doc. was hopeful it would be a bit lower. Did another six min. walk and respiratory tests before  I saw him. 498 metres thank you.  I offered to jog the last minute . Thank god the techie said na because I had no hope. The valve leakage has not changed. Doc has given me a nasal spray to use  once a day to ease my nasal congestion caused by the tadalafil. Whats been happening I have been waking up at around three each morning with a totally blocked nose and feeing that I can’t breathe. You all know how that feels hey. Now when I have a blocked nose mate its a big deal. Like I was the only bloke in college who could smoke a fag while standing under the shower and not get it wet. Got the idea ! Hell its cold ,only got to 21c (70f) today and I’m sailing tomorrow brrrr.

       

      • #34714
        Jen Cueva
        Keymaster

        Hi @terry, well, it sounds like a positive repost overall, and like you, we take all improvements. I bet the techie laughed when you offered to jog at the end of your 6MW test, hehe. WTG on smashing that, Mate!

        Ughh, yes, that nasal congestion certainly will impact your breathing. I hope the nasal spray helps. Is it a prescription spray or a saline mist? Let us know how it works for you.

        You always end with a joke, no matter what you’re reporting. It cracks me up every time. Thanks for adding your humor to the forums; I know others can appreciate it, too.

        Enjoy your sailing trip. Think about our lovely @cdvol3gmail-com as she was an avid sailor herself. I know she has been missing that part of her life. I’m grateful that you can continue sailing, Mate. Take care and be safe.

        • #34726
          Terry
          Participant

          The nasal spray is prescription spray ciclesonide .  Seems to be working ok.

        • #34736
          Jen Cueva
          Keymaster

          Hi @terry, I’m happy that your nasal spray seems to be helping. I hope that you had a nice sailing adventure.

          Thanks for sharing your update and the name of your nasal spray, Mate.

      • #34721
        Colleen Steele
        Keymaster

        Hi @terry that is a decent enough report to “sail” away on!

        Too bad the nasal congestion had to join the party. This is bad allergy season for me as the cotton is flying around in WA state. I’ve been getting a lot more headaches lately. Do you get those with the nasal congestion?

        • #34727
          Terry
          Participant

          No headaches thank goodness. Just sneezing all the time and blocked nasal passages. With the flu season just starting and covid one sneeze in public without a mask on and your a marked person.

    • #34728
      Carol Volckmann
      Participant

      A quick June update! FINALLY test results back and I have tested positive for SIBO and now an on 2 antibiotics to knock this overgrowth out and relieve the bloating!!!! Also …. finally was able to reschedule (after 3 times to reschedule) my surgery to have the medtronic stimulator removed- done!,It is out!!! I have been trying to resolve both these issues for nearly a year.I am ready for July!

      Colleen, you’re right allergy season here in WA is really bad this year. I hope you are getting some relief for those headaches  – not fun. Please take care. And Terry, I hope the nasal spray works for you – it does help me. Good luck.

      • #34737
        Jen Cueva
        Keymaster

        Hi @cdvol3gmail-com, I’m so happy you got some much-needed answers for your bloating! Hopefully, the antibiotics will do their job and resolve this for you.

        I know you’re jumping for joy after having these two long-awaited procedures done. I’m sending you extra prayers and hugs that July will be much more relaxing with some relief, my PHriend.


        @colleensteele
        , I hope that your allergies resolve soon. Take care of yourself, too.

        • #34740
          Carol Volckmann
          Participant

          Thank you sweet friend 😘. July is looking hopefull. I will be seeing the ENT doc as my voice is getting worse. Right now I am just happy to have some of my issues known and on meds that will help.

          Hope your week is going okay and you too are getting some answers.

          Sending extra hugs filled with appreciation 🤗 for your reaching out and love ❤  for being who you are! Hugs too for Manny and Sasha. 😊❤🐶

        • #34765
          Jen Cueva
          Keymaster

          Hi @cdvol3gmail-com, I’m so happy that you’ve finally started getting some answers and hopefully some relief soon.

          Let us know what the ENT says about your voice. It sounds like your calendar is looking up, and that’s a positive. Hopefully, you’ll plan something fun once this is done and you can relax and have a nice cool drink, my PHriend.

          Thanks for your love and support; it’s greatly appreciated. This has been a slower week for me with appointments which has been excellent as I adjust to a few new medications.

          I hope you and Dick have a relaxing weekend and maybe enjoy that new home.


          @colleensteele
          , I hope and pray that your migraine relief continues for you. Experiencing a headache or migraines must be annoying and frustrating when you can get no relief. Does Cullen have migraines too? I thought you mentioned that before.

      • #34742
        Colleen Steele
        Keymaster

        @cdvol3gmail-com I hope you are sleeping well at night now knowing that so many things are finally getting addressed for you. It sounds like July is going to be a promising month for several of our forum members.

        Knock wood, I had some relief from the migraines today, maybe because we have had cooler weather the past few days. I’ve otherwise been walking around with a constant headache, nothing seems to help. Oh well, such is life.

        • #34747
          Carol Volckmann
          Participant

          Colleen, I am so sorry to hear that you have migraine headaches. I hope you are able to get some relief – migraine are so debilitating. I thought the medical profession had come up with some new meds that really work – guess not 🤥.

          Please be gentle on yourself and rest whenever you can. Sending you hugs – 🤗.

      • #34744
        Terry
        Participant

        I have to say Carol the spray is pretty good .Restful sleep and only one sneeze in two days . Now Jen suggested I think of you when I went sailing yesterday so I decided I would sing that Neil Sedaka song or perhaps the Neil Diamond one  when I raised the sails . Are you a Carol or Caroline ? Then I decided ‘stuff you’ no one ever sang a song about Terry. Why Not? Terry is a nice name . I remembered Twinkle sang a song called Terry in the 60’s . Not a Sedaka or a Diamond ,not even a Presley but a bloody Twinkle and it got banned FGS.
        Keep smiling mate.

        • #34748
          Carol Volckmann
          Participant

          Hi Terry, actually back in the 50s there was a song “Carol” but it was terrible … Oh Carol, oh Carol, I am but a fool… certainly not sung by Sadaka nor Diamond! But, have to tell you my first boyfriend was Terry and he too was a sailor. I was in the business for years in the Caribbean and Florida selling sailboats. Also loved racing!

          Take good care of yourself and keep enjoying every minute!

           

        • #34756
          Colleen Steele
          Keymaster

          @cdvol3gmail-com “Oh Carol” was sung by Neil Sedaka. I know this because as a kid I loved listening to my mom’s 45’s and she had it. I actually really liked it. Paul Anka also sang it and it sounds very similar to Sedaka. Hey, and don’t forget “Carol” by Chuck Berry!

          Sorry, I just got excited when you mentioned “Oh Carol”, I immediately heard it in my head!

        • #34759
          Carol Volckmann
          Participant

          WOW did you ever make me laugh so out loud!!! That is sooo funny Colleen. Now, I have it in my head! I certainly don’t remember Oh Carol being sung by Sedaka, maybe I will Google it to listen. You really cracked me up! Thanks for a great laugh. 😄❤

        • #34766
          Jen Cueva
          Keymaster

          LOL, @terry, @cdvol3gmail-com, and @colleensteele, you 3 have me cracking up this morning as I read your comments and mention of songs.

          Carol, it sounds like you loved sailing from a young age. I knew you had been in the business for years. But now, your first BF, Terry, was also a sailor. Too cute.

          Now, I’ll google the “Oh Carol” song just to see if I have heard it. Thanks, Colleen.

    • #34792
      Debbie Moore
      Participant

      My appointment went well.  He answered all my questions.  I came away from the appointment feeling like my PH is really mild, and the reason I feel so horrible is due to my weight.  So it is time for diet and exercise.  I’m looking forward to being thin and breathing better.  This could be a win-win!

      • #34800
        Carol Volckmann
        Participant

        Wow Debbie, so glad to hear your appointment went so well with your Pulmonologist – always good to hear the positive news. Are you going to have help with a setting up a regime for diet and excersie? I wish you all positive vibes!! When I lost weight it took a long time as I just started eating less – about 1/2 what I normally ate and yes, excersied. Really happy for you Debbie!

         

      • #34804
        Jen Cueva
        Keymaster

        Hi @debbie, it sounds like your appointment went very well. I’m so happy that you had your questions answered. Overall sounds positive, and I know you’ll take baby steps and work on getting some weight off.

        Hadn’t you started trying walking and eating healthier? It’s tough, especially with a southern root, hehe. I know; I crave my southern comfort foods often.

        But working on reducing fats and sugars and finding healthier meals to eat is key. It takes time and dedication. Take one step at a time. Overall, I’m grateful he thinks your PH is mild. Thanks so much for sharing this update with us.

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