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    • #27285
      Jen Cueva
      Moderator

      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
      Moderator

      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.

    • #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
      Moderator

      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
      Moderator

      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
      Moderator

      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
      Moderator

      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
        Moderator

        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
      Moderator

      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
      Moderator

      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
      Moderator

      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
      Moderator

      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
      Moderator

      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
      Moderator

      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
      Moderator

      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
      Moderator

      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
      Moderator

      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
      Moderator

      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
      Moderator

      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
      Moderator

      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
      Moderator

      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.

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