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    • #27285
      Jen Cueva
      Keymaster

      I read an article in the New England Journal of Medicine discussing the COVID vaccine. There are so many questions and things to consider when creating a vaccine. Usually, a vaccine takes years. So obviously, the top question that most have is, will it be safe? Effectiveness is undoubtedly also of high importance.

      Of course, those of us in the PH community take precautions each year with the flu and pneumonia shot as needed. We take precautions because our bodies are immuno-compromised.

      If a vaccine was available today against COVID, would you take it? Why or why not? Let’s talk about this.

    • #27288
      Colleen Steele
      Keymaster

      Good topic @jenc. My family has discussed this a lot lately. We are strong believers in vaccinations and flu shots but I think we are going to wait for a while on receiving anything to fight Covid. We are praying that a successful vaccine is found but being among the test subjects (so to speak) is just too risky for Cullen. I think for a while a vaccine will be like trading one unknown for another. What are your thoughts Jen?

    • #27290
      Jen Cueva
      Keymaster

      I agree, @colleensteele. I am grateful that they will have a vaccine. But, I am not going to be one of the first to get it. I am nervous that they will develop this so quickly when others take years. It is difficult, but like you, we would wait a bit after seeing any effectiveness or kinks it may have.

      On the one hand, I understand that technology will help speed things up. I just worry that they may miss a few steps by rushing it. Does that make sense?

    • #27291
      V.R. Peterson
      Participant

      I’m going to wait a good, long while — at least a year or two. I want to make sure that they know about all the possible side effects. I got burned in ’76 when I got the Swine Flu vaccine, and they didn’t realize that the vaccine caused Epstein–Barr virus, which I got shortly after getting the vaccine. I also found out that during times of stress and illness, the virus can reactivate in a person’s body. It reactivated in mine about 10 years ago, and I got sicker than when I originally got the virus, and it lasted much longer than the first time.

      • #28760
        Clyde
        Participant

        The biggest misunderstanding about this vaccine is that it was rushed through and therefore unsafe. The approval process was the same as always. The difference is the wait time. At every step in the process it was sent to the front of the line. At any given time there are hundreds of drugs in the pie line. This vaccine was simply moved ahead. Waiting in line in no way enhances the safety of the drug.

    • #27292

      I took my flu shot today. I’m going to wait before taking the COVID vaccine. This has been developed too hurriedly for me. I want to see how it affects the ones who go first. So I will not line up to take the vaccine for awhile.

    • #27295
      Carol Volckmann
      Participant

      Me too, me too, me too. I will wait for all the reasons above.I feel it is way to risky for the first year. I will get my flu shot and pneumonia booster in October. Stay well and safe everyone! ❤

    • #27297
      Dawn
      Participant

      I agree with the concerns raised in prior posts. I understand the race to get a vaccine asap, but don’t want to be a test subject by getting it before it’s proven safe and effective. I would want my dr’s input as well, but won’t let their suggestions push me before I feel it’s safe. As on top of things as my dr’s seem to be I don’t think that will be an issue.

    • #27298
      anne
      Participant

      I would be right behind the first responders and medical staff. By the time all of those have had the vaccine, if there were problems rising, we would start seeing them. I’m in my mid 70s.

    • #27309
      Jen Cueva
      Keymaster

      Hi @mamabear007, I am sorry to hear that you developed Epstein Barr after the Swine flu vaccine. I did not remember that, but I did not get that one, either. I agree that I want the kinks to be ironed out and need to see that it is safe and will not harm than good. It is often such a debate to get these vaccines or not.

      That is true about Epstein Barr. It stays dormant in your system and can be reactive when high levels of stress or other strain on your body. I have read several articles recently about EBV, saying that most of us will have it at one time or another in pour lives. This is the CDC about EBV because I can’t remember where I read the articles. But, in the last few months, this has been a hot topic among the rare disease community.

      Thanks for sharing your experiences. I am sorry that this happened to you. How are you and the family doing?

    • #27310
      Jen Cueva
      Keymaster

      Hi @vicki-kirkland-walker, great job on getting your flu shot! I agree; I think this will be too fast, so I will be waiting with you. Do you also get the pneumonia boosters? I know many doctors tend to have confusion about how often this one should be done.


      @cdvol3gmail-com
      , I am with you on waiting. How often do you tend to get your pneumonia booster?

    • #27311
      Jen Cueva
      Keymaster

      Hi @dawnt, thanks for bringing up an important factor. We do need to hear our doctors out, but ultimately the decision is ours, and we need to be sure that this is a time when we advocate for ourselves.

    • #27312
      Jen Cueva
      Keymaster

      Hi, @annefox, thanks for sharing your thoughts. We all make decisions based on our own circumstances. I can respect your decision about wanting the vaccine. You and your medical team will make the best decisions for you. I would rather wait a bit before I get one.

      Do you and your husband both get the flu shot each year? What about the pneumonia boosters? How often do your doctors do this?

      How are you feeling this week? I haven’t seen you much. Did you check out the PF forums, too since you have both? Take care.

    • #27320
      Carol Volckmann
      Participant

      Hi Jen, I believe if you are 65 and over and have health issues you should have a pneumonia booster every 5 years so I will get mine this Oct along with a flu shot. I think if you are under 65 but have health issues I would ask my doctor if I should get a booster for pneumonia. Stay safe everyone.

      • #27332
        Jen Cueva
        Keymaster

        Thanks for sharing, @cdvol3gmail-com. One of my doctors thinks that every 10 years is good for a pneumonia booster. Another says every 5 years, so I usually get mine in between 5-10 years. I do know that I did get one about 2 years ago while in the hospital. Isn’t it frustrating when your doctors disagree?

    • #27321
      anne
      Participant

      Yes, we both get our “old peoples” flu shot and we’ve had the pneumonia booster, but probably need to have the pneumonia booster again (forget to ask for it and not given it automatically by the MD)

      I have my on line pulmonary appointment today and am getting a little nervous about it. Will it be different from my other pulmonologist? or enough different for me to be excited. I’ll ask for a breathing test to be included along with my CAT scan to check on my fibrosis. Also, I’ll ask him about pulmonary fibrosis.

      Thank you for your caring.

    • #27322
      V.R. Peterson
      Participant

      Thank you, @jenc. My family and I are doing well. My son is still working in his grocery store’s meat department, and my DIL is now working directly with COVID patients. I have to say that, right now, I’m more worried for her. We *know* she’s being exposed, though she does have PPE. As far as I know, my son isn’t. He stays mostly in the back and the freezer, so he’s not around customers as much as he used to be (thanks to his boss) — plus his store is now requiring customers to wear masks.

      Thank you for the CDC’s link on EBV. I’m learning things that I didn’t previously know. Since I got the flu shot during my college years, I likely didn’t have EBV as a child.

    • #27324
      anne
      Participant

      my new/old pulmonologist read my old CAT scan of 2018 and did not see fibrosis, just infection. He believes I have a lot of fluid in my lungs to cause my breathing problems. I’m due for a CAT scan next week and will see him again in a month. In the mean time, I’m to cut my fluid intake in half and my salt intake. Isn’t this weird?

    • #27325
      Carol Volckmann
      Participant

      Hi Ann, your news that you do not have fibrosis is good news! It is good that they are going to do a CT scan, will your doctor be able to call you with the results rather than wait for a month to see him? Are you taking a diuretic like lasix? As for salt – they(doctors) want less to nearly none in our diets, especially Pulmonologist and Cardiologists! Wishing you the best outcome – sending you positive energy!
      Carol

    • #27327
      Colleen Steele
      Keymaster

      @jenc that makes total sense! I have the same concern. What might even turn out to be small or rare unexpected side-effects could be concerning for medically fragile individuals. I’m all for my family receiving the vaccine – after it’s been around for a while. We will continue to live cautiously until then.

    • #27328
      Colleen Steele
      Keymaster

      @mamabear007 that is awful! What a nightmare experience! I am so sorry that happened to you. I read your comment to my husband because he feels less suspicious of a vaccine they produce for Covid. He suggests we go with whatever Cullen’s doctors tell us to do. We haven’t discussed it with any of them yet but honestly, even if they tell us he should get it, I don’t want him to until it’s been out for a while.

      I appreciate that you shared your personal experienced with a failed vaccine. Your story is an eye-opener.

    • #27329
      Colleen Steele
      Keymaster

      @vicki-kirkland-walker @cdvol3gmail-com @ann-walker and everyone who responded. It sounds like we are all thinking the same – wait out the vaccine and learn the side-effects first. Personally, I think the responsible thing the “deciders” on this vaccine should make, is that medically frail and people over a certain age shouldn’t received the vaccine until it’s been on the market for said amount of time.

    • #27333
      Jen Cueva
      Keymaster

      Hi @mamabear007, I am grateful that you and your family are doing well. It sounds like your son is working less with the public, so that helps. That and the mask mandates. Do most follow this mandate in your area? Here in Texas, they tend not to care as much. I can imagine the concern that you have for your DIL. Working as a nurse with COVID patients, she is exposed daily. I am keeping her and your family in my thoughts and prayers.

      I am happy that you learned a bit more about EBV with the link. Thanks again for sharing your experiences with us all. It certainly can happen, and this is what worries me with the COVID vaccine.

    • #27334
      Jen Cueva
      Keymaster

      Hi, @annefox, I am happy to hear that you do not have pulmonary fibrosis. Like Carol mentions, maybe you can have them do a virtual call after getting the CT results. As far as fluid restrictions and diet changes, this is the “norm” for anyone with heart issues and increased fluid. Are you on any diuretics?

      The extra fluid will undoubtedly impact your breathing. For me, any time I am up over 4 pounds with fluid, I fill it. It often accumulates around my belly, feet, and ankles. Please take care of yourself and keep us posted.

      Did they give you a heart-healthy diet to follow?

    • #27335
      Jen Cueva
      Keymaster

      Thanks, @colleensteele. I will not be first in line, and it may be a while before I feel that it is safe for me. I know that some doctors may suggest it early on. But, we can advocate as we share our concerns with them, too.

      I am grateful that @mamabear007 shared her experience with a vaccine. I think there were other vaccines that some experiences side effects from hanging from seizures and loss of vision. These things are what concern me and many others. We have enough to PHight through already. I hope that when you speak with Cullen, you will let us know his thoughts as a young adult.

    • #27342
      anne
      Participant

      I’m going to wait until I have my CT next week before I say good by to fibrosis. I’ve was told I had Fibrosis about 4 years ago and have lived with it. I was told I have pulmonary hypertension about 2 years ago. I’ll see the cardiologist in 2 months and try to get it confirmed or denied. Strange how things change. I’ve had fluid in and even around my lungs several times– in the lungs last year.

      I’m on two 1 mg bumex a day having been on 4 a day at times. My nephrologist wants me on as low a dose as I can handle. I’ve been on these pills for over 20 years due to lower leg and ankle swelling.

      I’ll keep in touch with my final analysis.

    • #27343
      V.R. Peterson
      Participant

      @jenc, people are finally starting to take COVID seriously, and most are now wearing masks in the stores. There are still a few holdouts, but I think you’ll have that with any situations. In the next town over, the city council passed an ordinance requiring everybody to wear masks in all businesses. Even there, a few people refuse, and the businesses don’t do anything about it. However, most people wear masks everywhere in that city.

    • #27347
      Jen Cueva
      Keymaster

      Hi @annefox, thanks for sharing your updates. I am sure that this all can be frustrating and confusing for you. I hope and pray that you have neither, but if you do, maybe just one is enough. I am happy that you are on diuretics. I understand your kidney doctor’s concerns. I have the same issue. Being on 3 diuretics for 15 years has taken a toll on my kidneys. Less is more when dealing with those. I know it is a careful balancing act between that and CHF.

      I wrote this column last year, that you may relate to. Feel free to give it a read. Take care and stay safe, Anne.

    • #27348
      Jen Cueva
      Keymaster

      Thanks for sharing @mamabear007. Yes, Houston and the surrounding areas have mask mandates in businesses. We still have folks that could care less, and the companies have not done much to stop anyone. So, I am happy to hear things are a bit better there with people taking precautions.

      What are you doing to stay busy this week? You are always doing some craft or hobby.

      Sending hugs from Texas.

    • #27352
      V.R. Peterson
      Participant

      @jenc, believe it or not, I haven’t had anything on my needles for more than a month. I need to do better. To stay busy, I’ve been dealing with a mini crisis. Not with my family, thank goodness!

    • #27354
      Jen Cueva
      Keymaster

      Oh no, @mamabear007, I am sorry to hear about the crisis. Is there anything that we can do to help support you? I hope that whomever it involves, things will improve.

      I am so surprised that you are not doing something crafty. Please don’t forget self-care when helping others.<3

    • #27359
      Lenna Thomas West
      Participant

      I am a former nurse practitioner with PH. I will read the medical data and then I will watch Dr Anthony Fauci. He is the foremost expert on this and vaccines. When he gets in line for his vaccine I am going to be right behind him (figuratively speaking). If I was making this decision for my child I would totally be more cautious. It is important for everyone to decide what is best for them and when their timing is right. I have been totally sequestered during this pandemic because I have so many medical issues. I am hoping there will be a safe option in the beginning of 2021. Stay safe everyone.

    • #27360
      V.R. Peterson
      Participant

      Thank you, @jenc. I’ve taken steps to mitigate damages caused by someone else. Now I wait for the drama to end. I’m confident it will. 😊

    • #27361
      Steve Sallee
      Participant

      Good question. I am now staying in the Seattle area awaiting a lung transplant. I have and will have much at stake. I find myself viewing anyone without a mask as an enemy. All I can do is protect myself as best I can. I have endured quite a lot to get to this point. Not sure if I want to risk it.

    • #27362
      Rebecca Talkie
      Participant

      My husband and I are waiting a while for the Covid vaccine when it comes out. We are about ready to get our “old persons” flu shot. We decided to wait until the end of September because flu season in Ohio isn’t until Jan or Feb. I still need to get my second of two, shingles shot. My Father in law had that and it was awful. My Echocardiogram was yesterday and it appears to be OK. Tomorrow is my right heart cath. I earned another one of those by passing out a few weeks ago. After that I will deal with all these shots.

    • #27364
      Colleen Steele
      Keymaster

      @mamabear007 it sounds like maybe you got wrapped into someone else’s drama? Well, whatever it is I hope there will be an end to it soon.

      I think you might be right. More people are wearing masks without argument now. There are and probably always will be the few that won’t. Sad to say but it seems that those who aren’t wearing them are looking for an argument.

      I worry about my youngest son as you do your daughter-in-law @mamabear007. He has to work every day which I know puts him at risk. He tells me he is alone most of the time but I know he can’t totally avoid people when there.

      Do you have any special projects in mind for the upcoming holiday’s?

    • #27365
      Colleen Steele
      Keymaster

      @annefox I was thinking of you today and wondering how you are feeling since your last update? You mentioned fluid on the lungs and a cardiologist appointment in a few months. Did your doctor give you things to watch for in case you need to be seen sooner?

    • #27366
      Colleen Steele
      Keymaster

      @lenna-thomas-west I also have a few people whose steps I’m going to follow in regard to the vaccine. My son is an adult now but he will always be my “kid” so to speak. When it appears to be safe to receive I would still rather give it a go first before my son does.

    • #27367
      Colleen Steele
      Keymaster

      @exjarhead57730, you mentioned Seattle. If I may ask, are you listed at the UW? My son received his heart and double-lung transplant at Stanford but he just transitioned from to pediatric to adult care at the UW. We were also in the process of double-listing him at the UW when he received the call at Stanford. My son is 6 years post now. Let me know if you have any questions or concerns about transplant that maybe I can help you with.

    • #27368
      Colleen Steele
      Keymaster

      @becca I will be thinking of you tomorrow. I’m sure the cath will go just fine. I hope it provides answers to your passing out episodes and that your doctor figures out the best treatment to help you. Update when you can.

    • #27372
      anne
      Participant

      Jen you wrote, “I wrote this column last year, that you may relate to. Feel free to give it a read. Take care and stay safe, Anne.” How do I get to that column?

      Thank you,
      Anne

    • #27375
      Jen Cueva
      Keymaster

      Hi @lenna-thomas-west, I am with you. I worked in nursing before PH, so I take what Dr. Fauci and his team say seriously. As you also mention, we all must do what we feel is best for us in this situation. Just like any PH treatment, our circumstances and our bodies are different.

      Thanks for sharing your things on this important and hot topic. What area did you work in? I worked in hospice care most of the time. How long have you had PH?

    • #27376
      Jen Cueva
      Keymaster

      I am sending you lots of hugs and positive vibes from Texas. Prayers that you do not have to deal with much drama. This is always such a stressful time when others create drama. Stay safe and take care of yourself. It sounds like you have it all under control; just know that we are here to support you.

    • #27377
      Jen Cueva
      Keymaster

      Hi @annefox, you can click the highlighted phrase that says column in that one, and it will take you there. Let me post it here to see if that may be easier for you to locate. Click on the here area below.

      Click here to read the column.

      Please let me know if this is more helpful, Anne.

    • #27378
      Jen Cueva
      Keymaster

      Hi @becca, thinking of you today as you go through your heart cath. I am hopeful that you will get some answers about why you are passing out so often. The Echo being OK sounds positive, but we know that something is causing these passing out episodes. I know this has to be frustrating and frightening, too.

      Yes, passing out episodes come before the vaccine, for sure.

      Hugs and prayers are with you from Texas- update as you are up to it.

    • #27382
      V.R. Peterson
      Participant

      Yes, @colleensteele. I solved the situation by learning to set boundaries. Now I rest until I decompress from it all. 🙂

    • #27384
      Colleen Steele
      Keymaster

      @mamabear007 it’s often not easy setting boundaries. Good for you for doing it!

    • #27387
      Steve Sallee
      Participant

      Yes, I am listed at UW. This will be done through the VA. UW will do the procedure then after about 2 weeks I will be transferred back to the VA Puget Sound health care system for the rest of my recovery. Thanks for offering to answer my questions as I have many. I almost didn’t go ahead with it because I was told the national average was 5 years and I guess I thought that wasn’t enough to justify it all. But at 6 years your son has already surpassed that. It seems almost everyone I talk with who knows someone who has been transplanted has positive things to say. But I am a realist and I prefer to hear both Pro and Con so I can prepare better. I am a Marine and one of our favorite expressions is “we adapt and overcome”. We need as much info as we can get in order to accomplish this. Luck is what happens when preparation meets opportunity. Thank you again, -Steve.

    • #27389
      Jen Cueva
      Keymaster

      Hi @mamabear007, I agree with Colleen. Setting boundaries can be challenging. I continue to work on this with my therapist. Yes, please do something that you enjoy and decompress. What will that be? Maybe a craft project or reading?

    • #27390
      V.R. Peterson
      Participant

      I think I’m going to start knitting some caps. Christmas is only two months away, and I always knit caps for the delivery people (propane, UPS, FedEx, Schwann’s) as a thank-you for keeping me in the things I need. That hats will be a small enough project that they should reduce the stress level rather than raise it. Hmmmmm….. I can feel the stress leaving my body already. 🙂

    • #27393
      Jen Cueva
      Keymaster

      Haha @mamabear007, you are such a giving lady. I love that you have made masks for those in need; now you are knitting caps for those who serve you. That sounds like a great way to reduce stress and give back. How many will you make? Do you take orders? We can keep you busy, lol.

      Yes, doing this at your own pace and chill a bit. You deserve it! <3

      • #27417
        V.R. Peterson
        Participant

        @jenc, I’ll be making at least 6 caps. Both UPS and FedEx have two regular drivers for my route. I tried taking orders several years ago. Knitting for money was too much like work, and it was no longer enjoyable. So now I just knit for family, friends and myself.

    • #27396
      Colleen Steele
      Keymaster

      @exjarhead57730 yes, 5 years is the national average. All I can offer you is my experience and the opinions I formed around those experiences.

      My son was 14 when he received his heart and double-lung transplant. He had 5 PH friends around his age who received transplants close to when he received his. My son and one young woman are the only survivors left in that group. I’m telling you this not to scare you but actually to give you hope. The patients who passed away and their families never regretted their decision. Transplant still gave them more time than PH would have. And yes, many do not survive past 5 years, but I know a lot of people who have and well past the 6 years that my son is at now. In fact, he has a friend who received a lung transplant at the UW about 7 or 8 years ago and she is doing very well.

      Heads up, there will be bumps in the road. In a way you are trading one disease for another, but you are a Marine, so you can handle it! BTW – my dad was (oops…is) a Marine. Like he always says, “Once a Marine always a Marine!”.

    • #27399
      Colleen Steele
      Keymaster

      @mamabear007 I love how you use your talent to bring joy to others, and bonus…you enjoy doing it! Wishing you stress free days ahead!

    • #27421
      Jen Cueva
      Keymaster

      Hi there @mamabear007. I love that you are so giving and show love as you spread joy all year long. I am sure that your delivery guys and gals are appreciative. I can understand how you would not enjoy it as much when it is “work.” For now, keep it as a “labor of love.”

      Here’s to a new week ahead. Stay safe.

    • #28648
      Jen Cueva
      Keymaster

      Hi y’all, I wanted to share this again as so many are receiving their COVID vaccinations. Have you changed your mind about taking it? If so, why and what are your PH teams suggesting? Keep in mind each of us is different.

    • #28656
      Randolph Reynolds
      Participant

      I had an on line meeting with my PAH doctor a couple of days ago and told him I was going to take the vaccinations. Even though, as many of you are, being in a very high risk situation I see that we have no choice. The problem is when? In our county in Arizona the shots will be given by various pharmacies but they won’t be ready until sometime around the 19th of Jan. This leads to the question are they going to schedule people or will there be extensive waiting in line.

      The local Veterans Hospital has me on the list and will call me to make an appointment. This will take some time. So the questions are how soon and should we continue to take precautions? Probably soon.

      My other question is that for so many people who have PAH that are not 75 what leverage do you have? I would think that a persons doctor could help out there. I hope this will break us out of this pandemic.

      • #28706
        Jen Cueva
        Keymaster

        Hi @ripple76, great to have you chime in. I am happy to hear that you are working with your PH doctor and the VA to get your vaccination. Because I am still recovering from COVID, I will not be getting the vaccination just yet. My medical team will let me know when they feel that my hubby and I can get the vaccine.

        I am under 65 but have several comorbidities, so that helps.

        Please do keep us posted on when you did get yours and how things go.

    • #28667
      Cody Hanson
      Participant

      I am new to this conversation and have skimmed through the comments from the beginning. I am a person like many of you who not only has PH (PAH specially) I also have other rare conditions that I need to take into account for. I also am a caretaker for my parents who are 81 & 83 with their own health concerns. We have been locked down for the year. I am the only one who leaves the house for work only when necessary and to get items from the store that can not be delivered with our normal delivery service. We can not get this vaccine soon enough. While I understand many of your concerns about the timeline of this vaccine and the concern that corners might have been cut to get it out. My understanding and take on the matter is that unlike in the past there has been unprecedented effort by the world to find a answer to this virus. Money was not a issue, finding people to do the studies where not an issue. Normally the things that stand in they way of science breakthroughs are money, and participation. Most studies have to apply for grant after grant after grant hoping to get the necessary funding, plus trying to find enough people who would be willing to participate in each level of the study phase 1-3. Many people stepped up from all over from many different backgrounds and profiles to try and be part of the valiant effort to stop the pandemic. I respect everyones feelings and must do what you think is best for you and your healthcare. My parents are set to get their first dose next week and I hope I am not far behind.

      • This reply was modified 1 month, 2 weeks ago by Cody Hanson.
      • This reply was modified 1 month, 2 weeks ago by Cody Hanson.
      • #28673
        John Alec Briggs
        Participant

        Thank you for a well laid out description of how the approval process worked. No medical steps were skipped. That is crucial for everyone to understand. What was skipped was the bureaucracy that happens between the medical steps. Everyone has experienced the lines at the DMV. Imagine that happening between each and every medical action in a development process. That is why normal approvals take years. That was all skipped. Everything went to the front of every line.

        Now if they can just find a way to do that when we go to the DMV!

        But seriously, I hope you are able to make your appointment soon. Having every state establish separate distribution processes only confused things, making it easier for some and more difficult for others purely based on which side of a state line you live on. In Texas, where I am treated, high risk patients are in group 1B but teachers are not. In Arkansas, where I live, teachers are included in group 1B but high risk patients are not. As a teacher who is also high risk, I had two options! But my teacher friends in Texas are still waiting, as are my high risk friends in Arkansas. I was doubly blessed and able to choose the state moving more rapidly. Meanwhile all those who shared conditions that qualified me are themselves excluded just because of where they live. It results in uneven distribution.

      • #28707
        Jen Cueva
        Keymaster

        Thanks, @codydaman, for sharing your concerns. You certainly do have a ton that should put you in the high-risk category. I hope that once your parents get theirs, you will soon afterward. I would hope that you will update us on the vaccinations for y’all. This is all so new, so sharing our experiences and thoughts is so important.

        You bring up a great point; because of the push, this was done quicker with many volunteers’ help.

    • #28670
      John Alec Briggs
      Participant

      I had my first dose yesterday. UT Southwestern in Dallas, where my PH clinic is located, made the vaccine available to us on January 4th. It took almost two weeks for me to get my appointment and I wept with joy as I received it. I am a teacher and have been confined to my home for 11 months. I need out.

      Even as we begin vaccinations, until we reach herd immunity we cannot all be safe. It is up to all of us to do our part and be vaccinated. My niece served as a test subject for the Moderna vaccine, which was also the version I received. I am grateful for her gift, as a young, healthy person, to me and to all of us who so desperately need protection as this virus ravages our nation. I am now counting the days until I am again able to stand in front of my class and do what I was put on this earth to do. Enough of my life has been stolen by PH. I won’t give one more day to Covid.

      • #28708
        Jen Cueva
        Keymaster

        HI @johnalecbriggs, I bet you are going stir crazy not being in the classroom. I do not know how you teachers are doing it. I am in Texas, too, and have several PHriends who go to UT Dallas. I have heard such great reviews about the team there.

        How are you doing now, a few days later? Thank your niece for us all, so many gracious volunteers.

        • #28789
          John Alec Briggs
          Participant

          [email protected] – It’s been a week and I’ve no side effects at all. My arm was a tiny bit sore the next day, but considering how many of us are on SubQ and what that entails, there was nothing even worth mentioning. I love knowing each day I’m building the resistance that will get me back to teaching. My students have been so supportive and I look forward to being in person with them again.

          And yes, the clinic at UTSouthwestern is incredible. They are so communicative and willing to stop and listen. That is such an important thing to find in caregivers. They are the ones who contacted me to tell me the vaccine was available to me, otherwise I probably wouldn’t have known to check with them.

      • #28723
        Cody Hanson
        Participant

        @jenc I will definitely update on our progress, Wednesday can’t come soon enough!

    • #28688
      Colleen Steele
      Keymaster

      Thank you @jenc for revisiting this topic and thank you @ripple76, @codydaman and @johnalecbriggs for your informative responses.

      I’m embarrassed to say that I remain on the fence about the COVID vaccine. I’ve always been pro-vaccination so this hesitancy is new to me. My main concern is my son Cullen who received a heart and double lung transplant 6 year ago. He has fought so hard and long to stay well and it concerns me about possible unknown future side effects, especially for transplant recipients.

      I admit thought, it appears the majority of people I know want to receive the vaccination and much of what I have researched supports the decision. My husband is all on board and wants to receive it but me and my sons are still concerned.

      We reached out to Cullen’s transplant team and they emailed me some highlights of a letter they are preparing to send out.

      I originally posted the letter here but I have moved it to the lung transplantation forum. I want to make it clear that this came from transplant and not a PH doctor. You can view it there.

      • #28709
        Jen Cueva
        Keymaster

        Thank you, @colleensteele, for sharing that letter from Cullen’s PH team. I also have been on the fence, especially that I am still recovering. My team wants to wait a bit. It is scary, and eventually, we may not have a choice. What if they mandate all to be vaccinated? Do you think that will happen?

      • #28790
        John Alec Briggs
        Participant

        Hi @colleensteele, it really is such a personal choice. We each have to weigh our own unique circumstances. For me the choice was fairly easy. I’m stable on SubQ and, psychologically, being able to return to in-person teaching will do more for me than medicine can. But for others there are factors that make continuing in quarantine the right choice. It helps to hear how each of us are processing our decisions. We have a valuable support source here.

        • #28803
          Colleen Steele
          Keymaster

          Thank you @johnalecbriggs. I have also found this conversation helpful. Everyone has been so great with their responses. Thank you for sharing your perspective and fingers crossed – I hope you can return to teaching and normalcy soon.

    • #28691
      Colleen Steele
      Keymaster

      I have more information in case you are interested. Again…information…but check with your own doctor before receiving the vaccine.

      My roommate from college is the the Vice President, Editorial, Marketing & Communications person for Memorial Sloan Kettering Cancer Center in NY. She shared the following to social media.

      https://www.mskcc.org/coronavirus/8-myths-about-covid-19-vaccines-debunked

      And

      https://www.mskcc.org/coronavirus/what-you-should-know-about-covid-19-vaccines

    • #28694
      carol keilty
      Participant

      Hi Colleen I have been wondering if PH people could get the vaccine because there are quite a few things we can’t have. I am glade you gave all of this information. I haven’t heard what is going on here in New Brunswick yet. I know people are getting the shot in other parts of Canada but we were doing pretty good until the last little while and now they are going to put us to red if we keep getting as many as we have been sense the holidays. Hope this is soon over thank you again for the info. Carol

      • #28701
        Colleen Steele
        Keymaster

        @Carol I have moved the letter I shared to the Lung Transplantation forum. The two articles I shared are for the general population but the letter came from my son’s transplant doctor, not his PH doctor. Just want to make that clear. But I think the letter shares some helpful information for all.

        The other thing to consider is whether a person has PH or is a transplant recipient, there might be co-existing conditions that should be discussed too before receiving the vaccination. I hope everyone talks to their doctors before receiving the COVID vaccination.

    • #28710
      Jen Cueva
      Keymaster

      Thanks, @colleensteele, those two articles are helpful. They are full of information about the vaccine. I am a bit worried about the second dose as I have heard supplies cannot keep us. If the time between the shots is too long, would one need to restart with the first dose? Thoughts?


      @carol
      , I hope that you will talk with your PH team and see what they think. I think that you have PH as well as other health concerns, correct? Your medical team should best direct you. We are here for support. Yes, I hope this is all just a memory before long.

      • #28716
        Colleen Steele
        Keymaster

        @jenc that is a good question about the 2nd dose of the vaccine. I haven’t heard what people are to do if they can’t receive it in a timely manner. I’ll reach out to my friend and see if she has advice.

        I can see them mandating the vaccination but I hope they don’t do that until further out in the future. Actually, it wouldn’t make sense for them to mandate it now when there aren’t enough vaccinations to go around as it is. But who knows.

    • #28719
      Colleen Steele
      Keymaster

      @codydaman this weekend my husband was making the same point as you to our family. People are concerned about how fast the vaccination was release but there are some big differences between how they were developed in the past to how they were for Covid.

      This was an effort made worldwide, not just by a few, and a lot of medical advancements and technology have been developed since the last time we were faced with something like this. Those are good points that have me thinking…still a bit hesitant, but thinking.


      @jenc
      I’m glad you mentioned that you and Manny might eventually get the vaccination. I’ve been concerned and wondering, what if you had Covid but didn’t know it then got the vaccination? Would that be a problem? Hearing that your doctor is considering having you take it eventually gives me the impression that it will be ok whether you already had Covid or not. What do you think?

      • #28724
        Cody Hanson
        Participant

        @colleensteele Your husband sounds like a really smart person 🙂 I can understand the concerns around receiving the vaccine. I personally want everyone that can have it to get it, BUT I respect everyone’s personal choice and I suggest everyone talk with their personal medical doctor/team before hand. I asked my mom (who also has PH due to Pulmonary Fibrosis) to contact her doctor and also my fathers primary care doctor to make sure everyone was on the same page. If there is one thing that I have learned over the years of dealing with medical issues, is that only YOU can and should make the decisions for your health. I hope everyone would get all the proper information and make the best decision for them. As my family knows, I will give you what I know and what my opinion is, but I support you no matter what! I have been very impressed with how these forum discussions have followed this pattern. Lots of love to you all and hopefully we see a light at the end of the long tunnel!

      • #28728
        Jen Cueva
        Keymaster

        Hi @colleensteele, Yes, we will eventually get the vaccine. I have known 2 PH patients that have developed COVID twice. So, I am a tad nervous if I did not eventually receive the vaccine. It also will depend on my next CT and Echo, I am certain. Thanks for your support, and I know it still is not an easy decision.


        @codydaman
        makes an important point. Talk to your medical teams and discuss the best option for you and your family. We are here to share our experiences and learn from one another. I appreciate the kind words about the forums. Please do let us know how we can best support you and your family.

    • #28725
      Steve Sallee
      Participant

      I was going to as soon as they said I could after my transplant (30 days out), not so sure now that I am hearing of allergic reactions, the jury is out for now. I will still have to protect myself whether I get the vaccine or not. Besides, nothing ever works right when politics are involved.

      • #28729
        Jen Cueva
        Keymaster

        Well said, @exjarhead57730. I agree with you on that.

        Please do check with your transplant team and keep us posted on what you decide. How are things going this week?

    • #28744
      Carol Volckmann
      Participant

      Hi Steve, what an uplifting recovery!!! Great news and that you are doing so well. I love it that you are able to tell jokes again – there is no better therapy! Continue getting stronger! You are in my thoughts for the very best and getting back into your work shop.

    • #28745
      Kathleen Grady
      Participant

      I will absolutely get the vaccine when it becomes available. I know of at least 20 people who have gotten both doses and no side effects at all. I would rather take the risk with the vaccine than getting Covid.

      • #28769
        Jen Cueva
        Keymaster

        Thanks,@kgrady69 and @mendo-bruce, for sharing your thoughts on the vaccine. Please do keep us posted as you receive the first doses. It’s more important because this is all new, so sharing our experiences will help others.

        Any idea when you will be receiving yours?

    • #28746
      Mendo Bruce
      Participant

      There have now been nearly 9 million vaccines given. The safety has been well demonstrated. Even the very few who have experienced severe allergic reactions were easily treated with no problems. I will be getting the vaccine as soon as I can.

    • #28747
      Gayle Ward
      Participant

      I am a cancer survivor and have had PAH diagnosed in 2014. This past year has been very difficult being home bound for almost a year. I am getting vaccinated today for COVID. I am a retired nurse and have read all the info on the vaccine. I think it is safe and want to enjoy the time I have left on this earth. Warm wishes to all who are struggling during this pandemic. My prayers are with you.

      • #28770
        Jen Cueva
        Keymaster

        Hi @gward, it has been a little while since I have seen you post. Thank you for sharing your thoughts on the vaccine. I also know your background in nursing helps. Keep us posted as you just received your first dose. I am certain you will do well with it.


        @ripple76
        , it makes me smile as I read your positive thoughts about our conversations. I agree if only social media and the world would communicate and discuss topics with an open mind. I may not agree with someone, but I also respect each of us have different views. I hope that you will get the vaccine soon. Let us know when you do. Until then, stay positive and take care.

    • #28750
      Randolph Reynolds
      Participant

      These have been very special posts. It has been very hard to put up with this pandemic on top of having CEPTH. I am impressed with the positive attitudes that come out. My county in Arizona is just now starting to give the vaccine. I hope my wife and I will be getting the shots soon. Bless you all.

      • #28751
        Colleen Steele
        Keymaster

        @ripple76 I agree, the response to this topic has been so positive and helpful. Thank you everyone for sharing your thoughts and experience. I am feeling more at peace about receiving it but the big question now is, when. Cullen will probably be eligible for it before I will be but he is still a bit nervous. He’s 21 so all I can do is share information from both sides of the coin and pray that whatever he decides will be what is best and safest for him. @exjarhead57730 you are at the UW, correct? That is where my son is treated so that letter I shared you will be receiving too.

    • #28755
      Colleen Steele
      Keymaster

      @codydaman you are such a kind soul. I really appreciate your words of support and understanding, as well as your opinion and experience. I believe it is the peaceful way we have all discussed this topic that has helped me feel not strong armed, but more optimistic about the COVID vaccine. If only the world would discuss things the way we do here in the forums.

    • #28778
      Carol Volckmann
      Participant

      Hey Jen, Dick had his first vaccine shot yesterday. His arm was sore last night but today most of the soreness is gone. His second shot is in 2 weeks. We have been told by our doctors that the 2nd shot can be a bit tough for a few days. For the vaccine to work you must have both shots – the 1st one gets your system ready for the 2nd which is much stronger you need both to protect yourself.

      I will be getting my 1st shot the end of the week. I am ready. What are your doctors recommending? Should you wait till you are stronger? Maybe Manny would be able to get his 1st if he has
      recovered from the virus.

      Please continue to listen to your body so you are able to heal. Sending you lots of love and big hugs from WA.

      Colleen, thank you for all your information it is such a huge help. You continue to amaze me with the wealth of research you do! Thank you. Hugs to you across the Sound!

      • #28783
        Jen Cueva
        Keymaster

        Thanks, @cdvol3gmail-com; I am grateful that Dick did not have any issues with the first dose. I knew it would be sire, so thankful that is all. I hope and pray that the next one will not be too bad, but to is good that you are prepared.

        Let us know when you get your first dose next week.

        My PH team wants to wait a bit longer. Yes, I need to be a bit stronger. Because I already have COVID, it gives me a longer window. Manny will probably take his soon. I will keep y’all posted as we learn more about when this may be.

        Thanks again for your contributions to the forums.

        Hugs from Texas

      • #28800
        Colleen Steele
        Keymaster

        @cdvol3gmail-com @jenc my family just transitioned to a new internist because our former doctor has moved her practice. We really like the new doctor and we have all discussed the COVID vaccine with her. My husband is very anxious to receive it. She took the time to look for loop holes so he could receive it soon but it isn’t looking promising. None of us are in the age bracket and although we are technically Cullen’s caregiver, he is capable of taking care of himself so we don’t really qualify in that regard either.

        Cullen will probably be the first one eligible in our family because of being a transplant recipient. The doctor was so compassionate and understanding towards Cullen’s concerns. She suggested waiting until the spring when the Johnson and Johnson vaccination becomes available. I think she described what is available now as a generic form and she thought Cullen might feel more at ease with the Spring batch.

        I’m happy for you and your husband, Carol that you can receive it sooner than later. Hopefully with patience and perseverance everyone will receive it before the year is over.

    • #28792
      Cathleen Hayes
      Participant

      I am 75 years old and have PH and taking Sildenafil 3x/day – also use Oxygen at night and as needed in the day. I will be getting my COVID vaccination on Feb 3rd. My Pulmonologist at a certified PH center highly recommended that I get the vaccine asap. I simply do not want to suffer through those terrible symptoms from COVID if there is something I can do to prevent it. Good Luck to you all.

      • #28795
        Jen Cueva
        Keymaster

        [email protected] that sounds like a great plan. I am happy to hear that you and your PH team talked about this. This is so important. When you do get the vaccine, please keep us posted.

        I also take Revatio(sildenafil) and have for years. I am also on Uptravi with mine; My medications were planned to be changed soon. I have to have tests to be sure that COVID and pneumonia did not scar my lungs.

        Do you live alone? If not,m will your family receive the vaccine?

    • #28809
      Jimi Mcintosh
      Participant

      I am on the list at 4 different places for the covid vaccine, the wait list is long, available drugs are not being properly. I am somewhat hesitant to take the vaccine, but, I realize t he at I am running out of time and I will eventually get a positive test. After 3 surgeries and numerous covid test it is like “Russian roulette”, a B live round will be chambered.

      I had a covid style 6 minute walk test last week via video and my O2 never went lower than 95 under excretion, I had warned them
      That this has been the norm and I would be gasping for air, but never dropped into the danger zone. So therefore no oxygen changes in my nightly usage.

      HA seems to have been denied it’s total allocation of covid vaccine and we have long lines, wait list and people cutting lines , delaying the administration of vaccine to those on that daily list. It is getting scary, with some people refusing to wear mask, practice distancing and quarantine. I truly hope to get the vaccine soon

      • #28824
        Colleen Steele
        Keymaster

        @jimi what you are going through I have heard the same from others – on multiple lists with no promise of getting the vaccine soon. I’m sorry you are going through this. Praying you make it to the top of a list somewhere.

        I read that in the little town I live in a clinic had thousands of people registered to receive the vaccination and had to be turned away because they ended up only receiving 100 doses. Can you imagine the damage control that clinic had to do?

      • #28881
        Jen Cueva
        Keymaster

        I am grateful that all who have already received their vaccines here are doing well. I am grateful that @cdvol3gmail-com and @ripple76 share their experience with us all.

        I am sorry that some like @jimi and @renee are having to wait. Here in our county, I know they also are running out of supply. But, my PH team is waiting a bit for me, too.

        This is crazy as the states and counties are so different. yesterday that in the rural areas in some Texas areas, the National Guard is doing mobile testing.

        This is such an important topic and nice that we all have each other to talk to. @cynthia-winston, please update as you hear more.

    • #28812
      Carol Volckmann
      Participant

      Hi Jimi, I am so sorry you are having so much difficulty in getting the vaccine. I am glad you are 4 different lists. If possible to call in as much as you can.

      Both my husband and myself had our first shot no problems at all just soreness in the arm. We have appointments for our 2nd shot mine will be 2 days after my husband’s. We have been told by our doctors the 2nd shot can really knock you for a loop – feel really sick for a couple of days. But the good news is that is good news because as that means the vaccine is really working or I should say, your immune system is really working for you. Good luck you will be in my thoughts!

    • #28839
      Randolph Reynolds
      Participant

      Hello to Colleene and Jen: My experience with getting my first Covid Vaccination was good. But like so many people getting ‘scheduled’ was difficult. My wife and I were blessed that a friend contacted us on a Sunday afternoon (24th) with the news that a private medical center not far from our house was taking walk-ins. After an hour in line we got our shots.
      Both of us developed a soreness at the site but not bad. I was expecting to have some reaction since I am on Remodulin but I felt fine. I was relieved because the appointment I had with the VA was on the day (today) we had a snow storm and I didn’t want any other delays besides my wife is not a veteran and she was having trouble getting an appointment.

      For people who have more complicated issues getting scheduled at a place they can reach seems to me to be something their Doctor could arrange. There has to be a better way of defining the need. In Arizona all one has to be is 65. The idea of special health problems sort of slipped away.

      It is a trying time.

    • #28841
      Jennifer Beaty
      Participant

      I think I’m with @colleensteele. My doctors “has me on the list”. But I’m not comfortable enough yet. I think I’ll wait a while.

    • #28849
      Renee Kimberling
      Participant

      I will most definitely take the vaccine. Unfortunately in California we are restricted to immunizations by public health clinics which are set up periodically. One must register with the state on-line after the website for the county shows there are appts. available. When you finally get thru after many try later messages, you fill out all the bloody paperwork and press continue and it tells you all appointments are full! Maddening to say the least. I have decided to wait until I know thee is not such a rush. Hopefully the supply will be better soon. Our county was allocated 285,000 immunizations for all levels. Seniors over 65 are a population of 500,000!

    • #28860
      Cynthia
      Participant

      Hi all,

      I was just saw doctor two days ago, and asked about this vaccination, his words were it attacks your OXYGEN first, meaning you can’t breathe and says it would take me out, due to being on oxygen. Okay, now I’m really afraid. He says it is absolutely safe. Now, mind you I have never had a flu or pneumonia shot and I have done well with my natural chiropractic ways. But, this is next level. So I don’t want to take a chance.

    • #28743
      Steve Sallee
      Participant

      Doing better every day if that is even possible. No oxygen, getting energy back, sleeping better than I remember, I am more cognizant, I can tell jokes and remember how to tell them (Important to me). The swelling around my neck has gone down and I don’t look like Puxatawny Phil anymore. Going for walks around the hotel complex increasing distance each time. Should be able to return to SD in about a month they said. I can’t wait to try out my new lungs in my shop. Purchased a good mask/respirator to protect the new parts. nothing but good here. I consider myself extremely fortunate and I cannot thank the donor and taxpayers enough for this gift.

    • #28766
      Jen Cueva
      Keymaster

      I am so happy for you, @exjarhead57730! Each one of your posts, I can feel the excitement and gratitude that you share. I can’t wait to hear about your first time back in your shop. I am thankful that you already have the masks and things ready to protect your lungs. My late grandfather owned a body shop, and I know how that can be on the lungs.

      We are here along the way, walks and all.

    • #28768
      Jen Cueva
      Keymaster

      Hi @cdvol3gmail-com, thanks, but I think that research was mostly @colleensteele. 😀

      I am happy that WA state has the shots available. Let us know how the first dose goes with your hubby. I had not heard the info about the second one. Can you elaborate on that a bit more? I probably read something and forgot. My CRS kicks in often; it seems, hehe.

      Smart planning to spread you and your hubby out when you do get the second dose. I, too, worry about the mutations. Thanks for sharing. You make a difference!

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