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Will You Take the COVID Vaccination When It Is Available?
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@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!”.
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@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!
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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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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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Hi@jenc – 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.
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@jenc I will definitely update on our progress, Wednesday can’t come soon enough!
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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.
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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?
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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.
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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.
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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
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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
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@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.
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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.
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@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.
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@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?
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@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!
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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.
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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.
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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?
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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.
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Thank you Carol.
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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.
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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?
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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.
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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.
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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.
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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.
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@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.
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@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.
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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!
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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
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@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.
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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.
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Hi@cathyhayes 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?
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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
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@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?
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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.
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@jimi just checking-in to see how you are doing. Have you been able to receive the vaccination yet?
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@jimi we haven’t heard from you in a while so I just want to check-in and see how you are doing. Have you been able to receive the Covid vaccination yet?
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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!
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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.
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