I Hate Dialysis Message Board
Off-Topic => Off-Topic: Talk about anything you want. => Topic started by: MooseMom on December 12, 2020, 11:40:31 AM
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A/The vaccine is finally here, or is about to be, depending upon where you live. Since we are all in a high risk category, how are you are feeling about the vaccine's efficacy and safety?
My neighbor told me the other day that he was talking to another neighbor who happens to be an RN. He asked he what she thought about the vaccine' s safety, seeing that it seemed so "rushed". She explained that actually making the vaccine was not all that difficult, rather, that what usually makes the rollout of a new vaccine is the red tape that is always long and very sticky. She felt very confident that the vaccine will be safe.
I had my annual post-tx check up yesterday, this year's appointment being via telephone. I asked the neph what she thought about the vaccine, and she told me that they had all had a meeting/lesson about the vaccine and that at first, she was not happy about the fact that it had been rushed. But, she told me, that when she learned how much money had been invested by so many governments (usually, clinical trials are often slowed by lack of funds), and when she learned how many clinical trials actually "overlapped", she felt reassured.
So, have any of you had your renal team say anything to you about the vaccine and if/how you will get it if indeed you want it?
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Getting the vaccine early is somewhat of a gamble but currently leaving my house to go grocery shopping is also a gamble. I think getting the vaccine is safer then trying to avoid the increased number of infected running around. The fact that currently over 3000 patients are dying every day and that number could by some estimates reach 5000 before the pandemic breaks just shows how virulent this damn virus is. I grew up in the late 60’s and the question every on asked how would you like to be the last one killed in viet nam. Now the question is how would you like to be the last victim of COVID. I am 69 almost 70 and my health is not great, if the vaccine may kill me I figure it will be easier than 4 weeks on a ventilator and having to fight for air till I die. I also think if it was dangerous the Biden team would let the public know, in like the last sorry excuse for a president who mentioned in passing drinking bleach may help.
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In our video teleconference with Mayo-regarding us all getting Covid over Thanksgiving-Mayo said that at this time the are NOT recommending their transplant patients to receive the vaccine. The head doc said they want more data points on the safety and effectiveness before giving the green light.
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I think I am way down the list to be vaccinated, to be honest. A UK doc (I'll post a link to his op-ed) said something like he expected transplant patients to be vaccinated by the spring, but I don't think it will affect me that soon at all, to be honest. Oped: https://wtgf.org/wp-content/uploads/2020/12/TransplantWorld-2-2020-WTGF-Journal.pdf (Hit up page 4).
My renal team won't speak about it because I'm a post-tx patient so I have to refer to infectious disease at the tx center. They haven't reached out to me yet (nor has the transplant center in general) so I'll see what happens. Guess I could call, but that seems like really ahead of the game to ask. Just keeping my eyes peeled in case there is a public bulletin posted rather than a direct letter in the post.
The other thing is that I have heard whispers that we could end up with the Moderna vaccine, which hasn't been approved yet, since we don't have the fancy freezer storage facilities in bigger cities with better hospitals. I haven't heard much about the Moderna vaccine once I heard these whispers so I went looking for info and found this: https://asts.org/advocacy/covid-19-resources/asts-covid-19-strike-force/transplant-capacity-in-the-covid-19-era
Long story short, tx patients weren't in the studies, thus little to no data (as mentioned here) thus just hypotheses that all will be good because these sorts of vaccines are well tolerated in the tx population, and data will come. At least from this, I know to avoid the AstraZeneca and Johnson & Johnson vaccines, because they are based off live virus. They might be the ones that end up here too because of their less stringent freezer requirements.
So, I'll see what this region gets in regard to which vaccine and go from there. I'm not a rush to get it, but if it is a requirement to travel internationally (like has been lightly discussed), I'll go from there. But, the big question for me right now is WHICH shot will we have?! And then see the data...
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My nephrologist who is on the transplant team talked in mid November like the assumption is I would get it as soon as it’s offered to me. I hope by my January appointment we will know more. I don’t think there is a rush for me since I’m Virginia the first responders and nursing home folks will cover the supply for a bit.
I read about the side effects this morning and so far it seems like an inconvenience but not worth worry about.
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In our video teleconference with Mayo-regarding us all getting Covid over Thanksgiving-Mayo said that at this time the are NOT recommending their transplant patients to receive the vaccine. The head doc said they want more data points on the safety and effectiveness before giving the green light.
Good to know.
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I've decided that when/if the vaccine is offered to me, I"ll get it. I know that it's not recommended for those who are immunosuppressed, but since I'm no longer a transplant patient, I don't think that will be an issue.
We have two vaccines here on Prince Edward Island, and they've just started vaccinating those who live and work in long term care homes. I don't think they'll get to me until sometime between April and September.
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... I am still wondering about the new vaccine ... and what it is all about ... and ... I have not heard a word from "my" medical team and ... I have been reading, that getting the vaccine seems to be a completely different situation for transplant-patients because of their medication ...
Right now I continue to keep myself totally isolated and as healthy as is possible and I keep my moaning about the hernia-pain as much as is possible to a limit and I also try very hard to keep the pain-killers to an absolute minimum in order to protect my new kidney as much as is possible ... and ... I have already been told that any hernia-operation/repair is out of the question right now since all our hospitals seem to be full-up with covid-patients. :grouphug;
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I had an email from my clinic about the vaccine. They are expecting to offer it to everyone eventually. They referenced a FAQ from the American Society of Transplantation that said, among other things, "Most transplant recipients and candidates will fall under “people at high risk for severe COVID-19 due to underlying medical conditions.” ACIP notes that persons on immunosuppressive medications might be at increased risk for severe COVID-19 and that data are not available at this time to establish vaccine safety and efficacy in these individuals. They recommend that these people may receive COVID-19 vaccine along with counseling that there is unknown vaccine safety and efficacy profiles. In addition, there is a potential for reduced immune responses in those on immunosuppressive therapy."
I have a clinic appointment in March (haven't been there in 2 years!) and hope that maybe I can get the vaccine, all things being equal.
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Thanks so much for your post, SooMK. Let us know when you actually get the vaccine as it seems that we are still in the very early stages of the vaccination roll-out.
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I haven't checked in regularly in a while. I Had my transplant about 13 years ago and was on this site every day I was on dialysis leading up to my transplant. I do check back from time to time, but not often enough. But this time I was checking to see if anyone had any information on the Pfizer Covid vaccine. I will be receiving it Friday January 15th. I will come back and report on any issues or complications I have once I get my first dose. I'm getting it at the Baltimore, Veterans Affairs Hospital.
My transplant is going awesome, and I'm just nervous I'm messing things up by getting the vaccine so early in its stage. However, I want to travel this summer and I'll feel better if I have a vaccine before doing so. The con of losing my transplant or dying are bad, but they are also extremely unlikely. It seems since I was diagnosed with Kidney failure in my 20's, my life as been all about fighting the odds and hoping for the best.
I'll let the group know how it goes Friday!
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Nice to hear from you Jaybird! To be honest I found Michael Murphy’s message convincing enough. Who do I think I am that I can luck this out?
Stay safe please all my dear dear friends :cuddle;
Love, Cas
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Oh wow, 13 years! That's brilliant! Thank you for checking in and letting us know that all is well with you.
I suspect we all feel the same way you do about the vaccine. We've worked so hard and have been through so much to want to take on any extra risk. I worry about the risk of getting covid and having it attack our kidneys (transplanted or not). During my annual post tx check up, this year by phone, my tx neph told me that they've had some tx patients get covid; some they expected to do OK did not, and some they expected to become really ill did not. It's just so random, you know?
I happened to speak with my tx pharmacist today and asked him about the vaccine. He said that it was certainly recommended for all tx patients and that there is no evidence at this point in time that it would be any less safe or less effective than it would be to anyone else who might have a compromised immune system for whatever other reason. However, to be clear, when we discussed "the vaccine", we didn't make a distinction between the ones available.
It would be really great if you could check back in with us after you've had your jab and let us know how you are feeling and what you were told to expect. Thanks so much for offering to do that!
Best wishes to you, Jaybird!! It's fantastic hearing from you again!
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Has anyone read about a test to see if your vaccination is still protecting the patient?
For example they can do a test to insure your hepatitis B vaccination is still protective. (Hopefully I’m right with the hepatitis example.)
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I spoke to my Kidney Transplant specialist this morning and verified they are indeed calling out to Transplant patients to get the vaccine. They were surprised I already had an appointment this Friday though. I'm going to do blood work an hour before the transplant to see what if anything changes after the vaccine.
When you call the VA hospital in Baltimore, they have a prerecorded message about vaccines being rolled out and that they are not many available. But I have a theory that they becoming available to those further down the list because of the amount of people turning them down up the list. I have a few relatives that work in healthcare and they say less than 50% of the hospital staff are taking the vaccines. I'm sure this varies from geographic region to region.
I did a little research on the difference between Pfizer and Moderna vaccines and am glad I am getting the Pfizer one. Its a MUCH smaller dosage and has a 1-2% higher immunity rate. Other than that, they are pretty close in what they do. Supposedly the Pfizer one is for 16+ and the Moderna one is 18+ and also being tested in 12-17 area now. As far as side effects, I heard that the stronger your immune system is the bigger side effects you can expect to feel. This is why younger healthy people have strong vaccine "hangovers" than older people or those on immunosuppressants.
For background, I'm 41yr M, with a 13yr living donor transplant. Besides the transplant, I'm in decent shape (not overweight), no diabetes or anything else to report of. My December creatinine levels were 1.44 (I fluctuate between 1.4-1.7). I'm definitely on board to report any side effects etc... on here after tomorrows appointment. Wish me luck! :beer1;
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Oh, thanks for that, Jaybird. We all really look forward to hearing from you tomorrow and in the days ahead! Good luck!!
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I received the pfizer version this morning. It's 8hrs later and I have localized soreness, I feel fine but was a bit extra tired today. I took a nap when I got home after eating. I will upload some of the documents I recieved when I can. I'll also update any crazy changes if I have them. So far, nothing unexpected.
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Thanks for the update JayBird
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I was hoping you'd post today, Jaybird, so thank you for the update.
I got the two doses of the new Shingrix vaccine when it came out a couple of years ago. Both times my arm got really quite sore and red, and I didn't feel so brilliant, either. But I didn't care; it was worth it to have a modicum of protection from shingles. I would go through the same again if I knew the result would be a better change of surviving covid.
You know, I have not really been all that terribly concerned about covid until now. I've been perfectly happy to stay at home. But now with all of these new variants slashing their way through the world, I'm starting to get quite uneasy. I look at someplace like the UK, a place that values their "freedom" so much that they broke away from the EU, and see how they are embracing lockdowns because of the sheer number of new cases they are seeing there, and I am starting to feel a little panicky.
I worry that since we can't seem to get a good vaccination program rolled out, and also since we don't seem to have the reserves of vaccine we were told we had, we will start to see more variants that will infect more people more quickly. I worry that the result of this will be that the vaccines we do have will prove to be ineffective as more infections result in more mutations, some of which may be more lethal and/or more resistant to our vaccines.
These worries have really drained me the past few days, I had always felt relatively calm and patient, but not anymore.
Anyway, Jaybird, I am very glad that you got your jab!
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I worry that since we can't seem to get a good vaccination program rolled out, and also since we don't seem to have the reserves of vaccine we were told we had, we will start to see more variants that will infect more people more quickly. I worry that the result of this will be that the vaccines we do have will prove to be ineffective as more infections result in more mutations, some of which may be more lethal and/or more resistant to our vaccines.
This.
I'm like you MM in that I am starting to feel uneasy on the whole handling of the entire matter. Heck, vaccines haven't even cross my mind much because it seems like an eternity before they begin to vaccinate the area. The government pretty much said they haven't really given deep thought (yet) about how they will start to move shipments outside the hot zone (south) of the province. The whole initiative is lagging and it seems like only a paltry number of LTC residents and health care workers have been vaccinated. Meanwhile, I've seen transplant patients in the priority group in other countries and already had their first vaccine.
Right now, we've been lucky that the current vaccines can handle the new mutations, but if this keeps to rapidly spread, and people still continue to travel overseas, who knows. Wrap your head about finding a Brazilian variant in Japan!
We'd had a spike of cases locally so our lockdown got extended only to turn into now a full on state or emergency/stay at home orders. Media reports say the governments weren't prepares for the second wave. Just fed up. Our ICUs are above capacity (thank goodness, locally, we have some room) and now we're at the point of doctors deciding who gets a bed. The only factor in my favor is youth. But, if another healthy person in the same age needed a bed versus me, well, we all know who'd the medics would choose.
I'm not one of the people that view the vaccine as the "holy grail" but rather a tool in a multifaceted approach. So, I kind of feel indifferent about it because it is something truly out of my hands. Obviously I will get it when/if offered, but it isn't as if we'll all go immediately back to normal. I'd feel better if more therapeutic drugs were found/approved to be honest.
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I agree that the vaccine is not the holy grail but is instead one more tool in our arsenal, which could use as many weapons as possible. I also agree that it would be preferable to have more therapeutic drugs/treatments available. I'm not really sure exactly what IS available in that regard. All I know is that I'm feeling a lot more skittish than I did just a month ago. These just seem to be particularly perilous times in many ways.
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... There are currently about three (?) different (?) vaccines on the "forefront of the market" and they have been licensed in : 1) the UK (Oxford), 2. in the EU (Pfizer) and 3. in the US (one of the aforementioned or another new one ?).
My question is now : which vaccination is the safest and/or are they all the same and/or how do I go about getting a vaccination for myself with which vaccine as a non-medical person ? Have you all been contacted by your medical team? Or have you just walked into one of the vaccination-places?
Many thanks for your kind answers from Kristina. :grouphug;
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If you scroll up, you can see I posted a link to an American Society of Transplant Surgeons vaccine overview. Here is the link again: https://asts.org/advocacy/covid-19-resources/asts-covid-19-strike-force/transplant-capacity-in-the-covid-19-era
Not that it answers all your questions kristina, but the Oxford-Astra Zeneca and Johnson & Johnson vaccines have not been recommended for transplant patients. Why? Word for word from the document: They are both adenovirus vector vaccines where the coronavirus genetic material is carried into the cell on a live virus. That is subsequently followed up with Historically we have not recommended live viral vector vaccines for transplant patients that take immunosuppressive agents. The safety for the severely ill waitlist population could also have difficulty clearing the viral vector.
So, your best bet will be with the approved Pfizer and Moderna vaccines.
No one from my medical team has spoken to me about vaccination and that is pretty normal for someone in the "general population" for Canada. Not expecting to be vaccinated until autumn. Not sure how quickly the UK is vaccinating its target groups and if vaccines are available to you yet. Perhaps search your public health authorities and see which hospital hubs are offering clinics? As well, your GP probably holds the best answers, so arrange a telephone chat.
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Many thanks UkrainianTracksuit for your quick answer and kind explanation, it is very much appreciated and I shall look forward to find out which of these vaccinations the medics are going to give transplant-patients here ... and ... so far I have not heard a word ...
... I do hope that you and your husband are doing as well as is possible and I have been wondering whether or not it might be a good idea if your husband has one or two more blood-tests taken at an independent place to make sure whether the last blood-test might have been a mistake - or not? What do you think?
Take great care and I send you my kind thoughts and best wishes from Kristina. :grouphug;
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... I do hope that you and your husband are doing as well as is possible and I have been wondering whether or not it might be a good idea if your husband has one or two more blood-tests taken at an independent place to make sure whether the last blood-test might have been a mistake - or not? What do you think?
We have definitely thought about that. Well, not an independent place, but another lab. He has requisitions for more blood work, but he had to book an appointment (lockdown situation) rather than walk-in. The earliest he could get in is the 29th. Hopefully the results come before he gets booked for the biopsy and aspiration. Thank you so much for your concern! :cuddle;
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Scheduled for covid vaccine today 1/20/2021 at 4:15 PM. Got the call yesterday in afternoon. Strangely not from Fresinius where I thought it would come but from Summit Medical Group where all my doctors work.
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Scheduled for covid vaccine today 1/20/2021 at 4:15 PM. Got the call yesterday in afternoon. Strangely not from Fresinius where I thought it would come but from Summit Medical Group where all my doctors work.
Oh, wow! That's tomorrow! I'm very eager to hear about it all, so please let us know. I am hoping you'll fee just fine in the days afterwards.
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Just had a telehealth call with my Pulmonologist. I have Pulmonary Sarcoidosis. He wants me to get the vaccination but since I am on several immunosuppressants, he wants me to wait until I am at least off Prednisone for a week or two. He said that the idea is to actually let my immune system come back enough to recognize the Covid vaccine as the invader and make my body produce the needed anti-bodies...if that makes sense. He also said that in the ICU they are seeing people recover better with the help of anti-inflammatories such as Prednisone. So for me, off the Prednisone and then get the vaccine and then jump back on the Prednisone. Won't be for a while, maybe in a few months.
If my husband's neph wants him to get the vaccine he's on-board with it.
*self edit: Meant to add that my doctor said he/other docs aren't seeing anyone coming into the hospital for any adverse reactions to the vaccination. That's hopeful.
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Went to Medical group was bundled in a 15 person group and lead into a area with 15 chairs socially distant. We sat down and nurses went down the two lines of3 chairs and stuck every one. We were told to sit 15 minutes while the nurses were sticking the next 15 people. Then we were told to go home. Quick fast and sos far painless. In 28 days I go back for second shot.
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I'm back and its been a week. I'm normal.. what is normal anyway? I had trouble getting pictures of the paperwork, but it was standard lingo that stated the shot isn't really approved, but is as an emergency etc... I signed my life away as usual. One good thing, I didn't see Death as a side affect on the shot, its usually a side effect on everything if you read the fine print. Maybe they just hadn't gotten around to adding it below diarrhea.
I'm optimistic about getting my second shot, because the side effects were minimal so far. I feel good, my blood pressure is good, my sleeping is normal. Just fatigue on day one and pain at the injection site for about 24-36hrs. I've had similar responses to the flu shot.
The 2nd shot is supposed to cause more intense side effects from what I've read. I'm expecting to be tired again and possibly feel bad for a day to two, but I'm optimistic about not having worse side effects.
Remember, the shot isn't a cure. It increases your chances of not catching Covid, but it does not eliminate them. The new strains of Covid are bothersome because the protein spike on Covid seems to be changing shape and that is what the vaccine targets. If it changes too much, the vaccine will become ineffective against those strains. So the best idea is to continue washing your hands, avoid drinking/eating after people and wear a mask and keep your distance from crowds as possible. But get out of the house, staying at home forever isn't a life I want to live. I got out MORE when I was on dialysis than I did in 2020. Those are my opinions, if you enjoy staying at home then I'm envious and wish I could feel that way.
Good luck to all, and I'll repost if I have any side effects and after I get my second shot.
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Oh, thanks so much for the update, Jaybird. Lots of good information there; we appreciate it.
I was talking to a neighbor yesterday; he is our neighborhood gossip in that he seems to know what everyone is up to. I was horrified to learn that my next door neighbor tested positive for Covid just before Christmas, and another two families also tested positive. I have not seen my next door neighbor to ask him how he is doing or if he had any symptoms at all, but I do know that one of my other neighbors didn't get TOO sick but was out of action for a while.
This neighbor also told me that the lady who lives across the street from him is an RN (which I knew) and so got both shots. Like you've mentioned, the second left her feeling not so great for about 24 hours, but she is fine now.
I also worry that the speed of contagion is quickening and that with more people becoming infected, the more chance there is of the virus mutating into a form that might be resistant to the vaccines we now have. That said, I did hear Dr. Fauci (I think it was him) say that he believes that vaccines can be tweaked, if necessary, to protect against mutations. If that's the case, it still seems to me that it would result in just more time consumed and into a logistical nightmare.
Please repost after your second shot particularly if you don't have any side effects! Of course, if you DO have some, we want to know that, too! Again, thanks for the update.
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Moosemom, its funny you mention your neighbor. I saw my neighbor (2 houses down) when checking the mail and informed them i just got the shot recently. They then told me their entire family had covid right after New Years. They didn't even realize it until it was almost over. Just a few sniffles. Their daughter had to travel so was tested and that's how they found out. They are about 20+ years older than I am, so I'm very excited they didn't have complications, but I was also really surprised that they had covid so recently and i hadn't a clue living right next to them.
You never know who has this thing, so just use common sense and be vigilant.
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I got the Moderna vaccine 5 days ago in my right arm. I had one day of mild tenderness in my arm and for one day I felt a little tired.
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I got the Moderna vaccine 5 days ago in my right arm. I had one day of mild tenderness in my arm and for one day I felt a little tired.
Oh, I'm glad you got your first shot and that you experienced no bad side effects.
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my brother in law got his first shot last week, he said he felt soreness on his arm and had chills. but it was gone after 24 hours from the time of vaccination.
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my brother in law got his first shot last week, he said he felt soreness on his arm and had chills. but it was gone after 24 hours from the time of vaccination.
Oh, thanks for that!
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My husband is still at the nursing rehab facility. He was given the first shot yesterday of the Pfizer vaccine. As of today, still no side effects. Next shot in three weeks. He's supposed to be discharged to come home later this week so they told him that unless his Fresenius clinic will administer it, he will have to return to the rehab place for the next dose.
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Many thanks for the update, PrimeTimer ... but ... what about your vaccination? Have you been offered the opportunity to have your vaccine? I am asking because of your own health-issues?
Best wishes from Kristina. :grouphug;
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I also want to have the vaccine but I'm really afraid of the side effects... How bad are they?
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I also want to have the vaccine but I'm really afraid of the side effects... How bad are they?
Hallo burford,
I think the side-effects depend on your medical history (and perhaps on the "sort" of vaccine?).
For example I just had my first Pfizer-vaccine and it was not too bad and now I have to wait for my second Pfizer-vaccination and have heard that the second "lot" is a bit "heavier" than the first ...
But if we honestly consider it, I don't think we have any chance but to take the vaccination whatever the side-effects because the alternative is the unthinkable...
Best of luck from Kristina. :grouphug;
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1st Pfiezer yesterday; tired in the afternoon (not sure if cause/effect here); sore arm at night.
2nd dose is identical, however, I have been told to expect more intense side effects.
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Its looking like the wait for me post transplant and under 65k will be until late March or April best case, unless the Feds do some sort of additional mass vaccination site using their own doses.
Virginia and Arlington County specifically seems to be going slow, our county has about 200k people and is only receiving about 3k doses per week. They forecast 92% of the population will want the vaccine. We have a large priority pool here as there are many higher priority employers being based in the county and our county not requiring those employers to provide prioritized lists. I could imagine that the entire corporate staff of the Lidl grocery store chain be invited to be vaccinated because they are "grocery store" employees. Plus we have many federal and defense related offices which might be priority. Right now they are working on 75+ and the critical employees, 65+ will be next, and after that would be the at risk due to condition people like me which they estimate is about 50% off the population.
My wife is stressing about it throughout the day, but I'm trying to not stress too much. At least I'm able to work from home and wait.
I'm looking forward to being vaccinated and being able to go out a bit more and feel less at risk. I'm fairly sure the mask wearing is here to stay for at least another year but it might feel ok to do indoor dining with the spaced out tables, or more crowded spaced out outdoor dining.
PS because how the vaccines are allocated by state/county its looking like I will not be able to get vaccinated via my nephrologist or transplant center which is located in DC. But maybe the rules will change or the feds will step in a build a better distribution system.
PS2 my worry about receiving the vaccination is a first world problem, I worry about the rest of the developing world which will have much longer waits on the order of years for the vaccine...
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100% ^^^^^^^^this
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PS2: Not necessarily. China is always looking for opportunities to increase its influence in Africa and South America. It also has the capacity to ramp up vaccine production to meet a huge demand. India, too, has the expertise to inoculate its own people.
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The world is every ones problem, the longer this pandemic rages the more variants will mutate. Getting vaccine deployed until the planet has herd immunity is the only way to slow or stop the mutations.
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Yesterday I got my 1’ Astra Zeneca jab from my former D clinic who had left over. Feeling like terrible today.
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Yesterday I got my 1’ Astra Zeneca jab from my former D clinic who had left over. Feeling like terrible today.
Oh, no. I'm really sorry to hear you're not feeling well. It's really hard to know who will have side effects and who will not. Once you are feeling better, I'd like to hear more about what exactly you're experiencing. In the meantime, I hope you feel better tomorrow.
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As the West, especially the U.S., struggles with its rollout, Russia is poised to fill the breach with its Sputnik V vaccine.
https://www.bloomberg.com/news/articles/2021-02-06/putin-s-once-scorned-vaccine-is-now-a-favorite-in-pandemic-fight?srnd=premium
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Yesterday I got my 1’ Astra Zeneca jab from my former D clinic who had left over. Feeling like terrible today.
Oh, no. I'm really sorry to hear you're not feeling well. It's really hard to know who will have side effects and who will not. Once you are feeling better, I'd like to hear more about what exactly you're experiencing. In the meantime, I hope you feel better tomorrow.
Hi MM I’m now completely back to feeling ‘normal’. I basically felt like the flu. Raised temp, muscle ache, headache etc. Nothing serious really.
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That's good news, cass! I'm pleased you are feeling better. Thanks for letting us know.
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The hospital that I've said some negative things about just invited me to come in for a vaccine, so all their past transgressions are forgiven.
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The hospital that I've said some negative things about just invited me to come in for a vaccine, so I forgive them for all their past transgressions.
Forgiveness is divine! We expect status reports once you are vaccinated! :2thumbsup;
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The state of Illinois has expanded eligibility for the vaccine to include people under 65 who are immunosuppressed due to solid organ transplantation beginning 25 February. I know it won't be easy to get an appointment, but I'm hoping that by then, there will be more vaccine available (which is why eligibility has been expanded in the first place) which may make it easier to get an appointment somewhere. I am awaiting confirmation from my tx clinic just to make sure this will be OK for me. I am excited and nervous as the same time.
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The process, a fairly large operation in a downtown hospital, was smooth and efficient, with a sense of excitement in the air. Everyone, from givers to recipients, seemed to be in high spirits, and the feeling was contagious. The shot itself was trivial.
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Hello again! It's been a week since i got my second dose of pfizer. I had pain at the injection site, nothing worse than the first shot. I was also tired again for about a day after the shot. The arm pain lasted about 2 days. A week after the shot and I feel completely normal.
On a side note, I did blood work before and after the shots and no change in kidney function. It always varies from test to test, and it actually varied on the good side this last test. So I guess I don't have any complaints thus far. Lets just hope the vaccine works as intended. I'll continue to be careful, but its like I bought a little insurance and now I have a little bit more confidence. Only time will tell.
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The DPRM, in its wisdom, is allowing persons not eligible for the vaccine to get it if they show up as the attendant for someone who is eligible.
I saw the first online ad this morning from a local looking for a 75+ person who they can drive and accompany to the local vaccine clinic.
Sort of like hiring someone in a wheelchair as a Disney temporary family member (Disney used to give front of ride like privileges to the entire family until the practice of hiring a "wheelchair guide" became well known).
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I am post transplant nearly 3 years. I got the Moderna 1st vaccine on January 21st. Had a little soreness at vaccination site for a few days and a little tiredness the day after. I will post again when I get the 2nd shot around the 18th.
Stay safe everyone.
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When the next pandemic arrives, as it inevitably will, facial recognition will be so advanced that those who refuse to wear masks will be the last to receive the shot, and line jumpers like the rich and entitled will be convicted of a felony.
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I am post transplant nearly 3 years. I got the Moderna 1st vaccine on January 21st. Had a little soreness at vaccination site for a few days and a little tiredness the day after. I will post again when I get the 2nd shot around the 18th.
Stay safe everyone.
Thanks for this; it's much appreciated. I look forward to hearing from you after your second shot. Again, thanks.
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Wow! I'm quite impressed that so many vaccinations here are happening! As well, vaccine availability being extended for some of you. This is all good stuff! :cuddle;
With our current time frame, vaccines won't be available to me (though high risk) until August, more like September.
I made a joke that I'd be better served to put my main passport to use, go home, get a Sputnik V shot, but then realized it was a adenoviral vector-based vaccine, so no dice.
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The state of Illinois has expanded eligibility for the vaccine to include people under 65 who are immunosuppressed due to solid organ transplantation beginning 25 February. I know it won't be easy to get an appointment, but I'm hoping that by then, there will be more vaccine available (which is why eligibility has been expanded in the first place) which may make it easier to get an appointment somewhere. I am awaiting confirmation from my tx clinic just to make sure this will be OK for me. I am excited and nervous as the same time.
May I ask a more logistical question? More like a series of dumb questions, but I just would like some better insight into Illinois' decision here. That is, if you can reply!
How will the state know who exactly has a solid organ transplant and will you be expected to show proof for the under-65 crowd? It seems like a basic dumb question, but it has a reason.
I listened to a televised conversation where an infectious diseases specialist in the province replied to view questions. Someone asked about pre-existing conditions. His reply was that it is too difficult and complicated to figure out who has a pre-existing condition and provide proof of it, so it's best to just go by age group.
So, it just got me wondering how other states have actually done something about this and we follow the age group (as well as Indigenous people priority : I have NO ISSUE with this population early do to their unique set of conditions) framework.
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Those aren't dumb questions at all because I have had those same queries ever since the vaccines became available, and you know I only ask smart, well informed questions. :rofl;
I can only speak for Illinois; each state can do its own thing, but I get the impression that most states have expanded eligibility to include those under 65 with certain pre-existing conditions. I get that impression because on just about ever news outlet here in the US, the same issue is being discussed.
People are being encouraged to sign up for information about when vaccines are available in their area. I have signed up with Walgreens, with my county's health department, and with NBC News' "Plan Your Vaccine" website (why not?). My local hospital is part of a major medical system, Northwestern Medicine, and I already use their patient portal, so that will also be a source of information. (My transplant clinic is actually in another state). My local hospital already has in their records that I am a transplant patient.
I can easily provide proof of my age, but I've also wondered how I would prove I was a transplant patient (or diabetic or a cancer patient or whatever the case may be). Despite the fact that Walgreens, my local pharmacy, is not the provider of my transplant meds (I get those from my tx clinic's mail order specialty pharmacy), Walgreens does have those medications on record. They have contact with my GP who could also verify that I've had a solid organ transplant. I imagine that whichever healthcare provider ends up giving me the shot will either specify beforehand what "proof" they require, or else they will already know. So, I don't think it will be the "state" that will know, rather, it will be whoever supplies the shot whenever I get it.
The short answer is really, "I don't know...yet." When I find out, I'll let you know! I am assuming that it was presented that a healthy 65 year old woman should perhaps be at less risk of becoming very ill with covid than a 55 year old who is undergoing chemotherapy.
Does this help? Let me know if you have other questions; I'll answer as best I can.
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Some interesting things here in the DPRM:
Guidelines require two comorbidities (xplant is on the list) to get jabbed at the end of Phase II. We are not yet there yet.
Hospitals are already inviting transplant patients in for vaccination. Yeah!
The governor has decided to stop private sector vaccinations since this should in his wisdom this should be in purview of our betters in government. Hospitals are getting enough allocation to honor existing appointments but not make new ones.
Once we are at phase II the proof will be "self attestation". Yup, rationalize you have two comorbities and check the "dual comorbid" box in the online form, you get a shot. No verification requiried. Ripe for abuse.
Our governor has advised those attending to an over 75 person who is getting a vaccine can also get one. The going rate is reportedly about $200-$300, payable to the senior, to be their designated caretaker to take them in for their puncturing.
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Does this help? Let me know if you have other questions; I'll answer as best I can.
Thank you, your answer has helped a lot actually. :cheer:
It seems like almost "general knowledge" in your case in regards to care providers and pharmacies about your transplant status as it is part of your prescriptions/medical files. Not really much to "prove" because the information is easily accessible. We are just being advised to wait for our "Phase" 1 - 2 or 3 based on vaccine availability. There have been many problems. A lot of LTC residents have not been vaccinated yet. To be honest, it is embarrassing.
I read this last week and it is more apparent. Your real life experience adds to the basic points here.: https://nationalpost.com/opinion/jesse-kline-why-some-american-states-are-so-much-better-at-vaccinations-than-canadian-provinces
As a side note, my hospital has absolutely no idea that I am a transplant patient, even if orders get sent to different departments from nephrology. (Then again, we don't have the best trained staff. When I was completing my cardiac tests, the tech asked why I was having it done, to which I said transplant evaluation, to which she replied: "Oh really? I thought when you needed a kidney, you just went on the list and got one."
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I'm glad I was able to help a bit, You Tea. And, thanks for the link; that was really interesting.
I can believe that your cardiac testing tech made that sweeping assumption. It's astonishing how little general medical knowledge some techs have. Sometimes, it's just sort of scary, really.
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Just thought I'd chime in here on the vaccine discussion. I've been spending a lot of time on the various vaccine sites getting nowhere, filling out the same information over and over again with "no appointments available" or "server too busy". Some days ago I happened to be in Walgreen's and there was no one in the pharmacy line so I asked the tech about the vaccine. She was very matter of fact: Yes, we do them, Monday through Friday, you just have to have an account and you can sign up for notifications (I've seen nothing of these). So that seemed helpful and then I had one other thought and asked her if the vaccine comes in every day or once a week or what. She said it comes in every day and that she recommended that you login a few minutes after midnight to make your appointment. So Sunday night at a few minutes after midnight, I logged in, made my two appointments (first one is this Thursday, second one 3/18), woke my husband up, he made both of his appointments. Done, done and done. Whole thing took maybe 10 minutes. It was like the abracadabra moment. There has been plenty in the local press about the small pharmacies and CVS but I hadn't heard anything about Walgreen's. Sure beats the 2 hour drive that some people have been taking to get their vaccines at the larger venues.
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I just want to add that in addition to CVS and Walgreens, some grocery store pharmacies are starting to give the vaccinations.
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Second Moderna shot this afternoon so far no side effects.
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Just thought I'd chime in here on the vaccine discussion. I've been spending a lot of time on the various vaccine sites getting nowhere, filling out the same information over and over again with "no appointments available" or "server too busy". Some days ago I happened to be in Walgreen's and there was no one in the pharmacy line so I asked the tech about the vaccine. She was very matter of fact: Yes, we do them, Monday through Friday, you just have to have an account and you can sign up for notifications (I've seen nothing of these). So that seemed helpful and then I had one other thought and asked her if the vaccine comes in every day or once a week or what. She said it comes in every day and that she recommended that you login a few minutes after midnight to make your appointment. So Sunday night at a few minutes after midnight, I logged in, made my two appointments (first one is this Thursday, second one 3/18), woke my husband up, he made both of his appointments. Done, done and done. Whole thing took maybe 10 minutes. It was like the abracadabra moment. There has been plenty in the local press about the small pharmacies and CVS but I hadn't heard anything about Walgreen's. Sure beats the 2 hour drive that some people have been taking to get their vaccines at the larger venues.
Oh, thank you! This is really helpful! I already have a Walgreens account and I have already signed up for notifications. I am not eligible for the vaccine until next week, which is when eligibility here in Illinois is being expanded to include people younger than 65 but with certain conditions like organ transplant.
I am thinking that whoever ends up giving me the shot might well want proof that I have a tx, so I've just now asked my tx coordinator to send me a letter in this regard for whenever it comes my turn for the jab. Has anyone else here had to provide "proof"?
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Because of my age (71) I don't need tx proof. However, my transplant clinic proactively sent out an email via the MyChart/Epic portal with customized proof of transplant. Some locations must be asking for proof. The Walgreen's instructions I received just warned to be sure you meet the state's requirements but, aside from a state ID, it didn't specify any other proof. Best of luck!
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Because of my age (71) I don't need tx proof. However, my transplant clinic proactively sent out an email via the MyChart/Epic portal with customized proof of transplant. Some locations must be asking for proof. The Walgreen's instructions I received just warned to be sure you meet the state's requirements but, aside from a state ID, it didn't specify any other proof. Best of luck!
I asked my tx coordinator for a letter of proof, so to speak, and I've just received it via MyChart, so I'm good to go, I hope!
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Second Moderna shot this afternoon so far no side effects.
Fantastic! Thanks for letting us know!
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I think it is really cool how your tx centers proactively send out documents or take care of such matters so quickly! That just seems so... soothing... in a way?
My tx clinic has been MIA during this whole corona health care fiasco. The best they have done is share basic pointers on the website for tx patients.
Ah well, it is what it is. But, still, I think it's cool.
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I think it is really cool how your tx centers proactively send out documents or take care of such matters so quickly! That just seems so... soothing... in a way?
My tx clinic has been MIA during this whole corona health care fiasco. The best they have done is share basic pointers on the website for tx patients.
Ah well, it is what it is. But, still, I think it's cool.
To be clear, You Tea, my tx clinic didn't "proactively" do anything except send out "basic pointers" on their MyChart patient portal.
I follow the Illinois Public Health Department on Facebook and just posed the question of if/whether/how we are to provide "proof" of an underlying illness if we don't necessarily look like we are underlyingly ill. Someone who has various maladies (including renal insufficiency) posted that Walgreens will want a letter from your doctor, which makes sense. My tx clinic has always been really on the ball if I need something, so I messaged them with a request for such a letter, and I had it within an hour. So, that was cool, but I'm the one who had to be proactive, which is the way I prefer it, anyway.
So, I'll be good to go when it is my turn.
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Second day after second shot, just some local tenderness at location of second shot/. I feel great.
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In Arlington County Virginia there is no prioritization within any group, so I would have the same chance at a Virus as compared to an other high risk conditions person in the overweigh category with a BMI of 25+, and that person would have same priority of someone who is severe obesity with a BMI of 40+.
That also meant that the special needs teachers who were teaching daily in class didn't receive vaccination before the teachers who were teaching remotely. It feels like Arlington County didn't want to do any prioritization beyond the broad bands of 75+, 65+ (now being scheduled for shots) and then those with high risk conditions. They are allocating something like 200 doses per week for our free clinic that might be prioritized.
DC is allocating 50% of their doses to residents of the zip codes with highest infection rates which sounds like a good method to get the vaccine to those who would benefit from it most.
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Up date after second shot. Shot last Tuesday. On Thursday I was exhausted slept all day. Wednesday, Friday dialysis days tough to judge since I am having blood pressure problems (coming in low leaving lower). Today Saturday woke at 9:00 AM by noon was getting sleepy slept from 12:00 till 4:00 PM. Weird.
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Up date after second shot. Shot last Tuesday. On Thursday I was exhausted slept all day. Wednesday, Friday dialysis days tough to judge since I am having blood pressure problems (coming in low leaving lower). Today Saturday woke at 9:00 AM by noon was getting sleepy slept from 12:00 till 4:00 PM. Weird.
Oh, that is weird. I've not heard of "excessive sleepiness" being a possible side effect of the vaccine, but who knows? Are you feeling any more energetic today?
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Yes the need for a lot of sleep has passed. All told a minor cost for immunity to covid worst effects,
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Hello Michael, I am very glad for you and hopefully you are well and truly protected from now on! Fingers crossed!
Take good care and best wishes from Kristina. :grouphug;
P.S. I am still waiting for my second vaccination and have been told that my first vaccination already assists a lot, so I can only hope it is true and I can feel a bit calmer about "it" and hopefully it is going to work out ...
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Yes the need for a lot of sleep has passed. All told a minor cost for immunity to covid worst effects,
Oh, that's good to know. Thanks for your post.
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I received the pfizer version this morning. It's 8hrs later and I have localized soreness, I feel fine but was a bit extra tired today. I took a nap when I got home after eating. I will upload some of the documents I recieved when I can. I'll also update any crazy changes if I have them. So far, nothing unexpected.
My sister in law who was vaccinated said it was normal to feel that way, but you will feel better after 24 hours
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Had second Astra Zeneca jab Sunday :cheer: felt flu-like yesterday. Think I’ll be good again when I officially will get up today. Now already a lot better. And ‘protected’ in 2 weeks. We will see how the situation is in Holland by the time we are allowed to travel again. Would love to see my mum.
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Glad to hear that you have positive feedback about the vaccine. Keep us updated. Wishing you the best!
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Had second Astra Zeneca jab Sunday :cheer: felt flu-like yesterday. Think I’ll be good again when I officially will get up today. Now already a lot better. And ‘protected’ in 2 weeks. We will see how the situation is in Holland by the time we are allowed to travel again. Would love to see my mum.
Hello Cassandra,
I am glad about your Astra Zeneca-jab and hopefully it goes alright for you without any side-effects?
... I had "my" two Pfizer-vaccinations and my second jab went much better than the first one ... and I very much hope for you to be able and travel to see your mother again as soon as possible and hopefully Holland is doing alright with the Covid-jabs?
... I always loved to travel to Amsterdam and visit the Van Gogh Museum and the Rijksmuseum with all favourite works by Rembrandt and Vermeer and for art-lovers, a journey to the Rijksmuseum is almost like a pilgrimage to see special paintings again, who, over the years have almost become "old friends" ... and that makes me realise, that I haven't been visiting these "old friends" for such a long while and I really need my urgent operation done as soon as is possible, in order to be able and travel again, when the covid-danger and lock-down are hopefully being "done and over with" a.s.a.p....
Best of luck from Kristina. :grouphug;
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Last week, I received a letter about vaccination info for transplant patients from the transplant hospital. Q & A's sort of thing. Also, an expedited process/registration to get a vaccine! Too bad I live far away and we're under a lockdown.
Same week, it was announced that our public health people will be reaching out directly to transplant recipients rather than a general call for vaccination (based on age or employment or race category).
Today, I got a call from the local hospital asking if I was interested in getting the jab. Yep, I said. As it was explained it to me, they are going to get the numbers of vaccines needed and then make direct appointments with the patients.
Different than what I expected and I am still lost. ??? Still, seems like things are moving behind the scenes. Just waiting for call #2 now.. due in the next few weeks.
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OK, well, that IS progress, I suppose! I certainly never got any direct instructions from my tx hospital!
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Thats good news UkrainianTracksuit.
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Same week, it was announced that our public health people will be reaching out directly to transplant recipients rather than a general call for vaccination (based on age or employment or race category).
Hello UkrainianTracksuit,
Please tell me ... was it explained, how the vaccination could possibly be related to employment and/or race-category?
I am wondering about this, because when I was being "put" on the kidney-transplant waiting-list, I was told, that kidney-transplants are somehow race-related, i.e. I could only receive "my" transplant-kidney from a white-European-type-of-person with a similar set-up like myself (whatever that may mean) and I never could understand it, especially since I asked and no answer was forward-coming...
Could that mean, that there is a medical Apartheid taking place, or could there be real genuine medical reasons in place that must be taken into account? Does anyone know?
Many thanks from Kristina. :grouphug;
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Hi kristina,
Kidney donors/recipients most certainly can come from different races. It is only that one can receive a better match in regard to all the parameters (typically) with one with a similar genetic background. Here's a nice little article that can explain it better than I could ever: https://www.life-source.org/latest/does-my-race-ethnicity-matter-in-organ-donation/
In regard to the Covid vaccine, it is a little different. From the start, the government has focused on vaccinating indigenous peoples as a priority group because many do not have access to health care facilities, they live in communal or multi-generational housing and some of their communities are remote. That is what I meant by race considerations.
This has then transitioned to a focus on local hotspots meaning who have got the sickest more consistently and in larger numbers. Since many of them are essential workers, also living in some sort of multi-generational home, it has come down to socio-economic concerns. (People who cannot afford to stay home from work often work essential worker jobs, so they are exposed, get sick, and take the virus home to family members.) For the most part, this has been identified in racialized communities. So, there has been a push to get these people prioritized for vaccination, at least here in the "dumpster fire" of the country.
I guess a subpoint to this would be that particular groups of people (Black, for instance) had other co-morbidities and were hospitalized at higher rates. So, best to include them in the next general call for vaccination in phase 2.
Still in the line of employment, those that cannot work from home, all the way from farm workers to border inspection officers, are some of the groups included in the upcoming roll-out.
Hope that answers your question somewhat, kristina!
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Hello UkrainianTracksuit and many thanks for your kind explanation, it does make sense and is very much appreciated. It also explains somehow, why my donated kidney came from an 80-year-old white European donor and I was told that it was such very good match and was accepted because of our striking similarities. Mind you, it is a pity that "all that" is so very complicated.
Take great care and many thanks again from Kristina. :grouphug;
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Hello UkrainianTracksuit and many thanks for your kind explanation, it does make sense and is very much appreciated. It also explains somehow, why my donated kidney came from an 80-year-old white European donor and I was told that it was such very good match and was accepted because of our striking similarities. Mind you, it is a pity that "all that" is so very complicated.
Take great care and many thanks again from Kristina. :grouphug;
What did they mean by striking similarities?
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Hello UkrainianTracksuit and many thanks for your kind explanation, it does make sense and is very much appreciated. It also explains somehow, why my donated kidney came from an 80-year-old white European donor and I was told that it was such very good match and was accepted because of our striking similarities. Mind you, it is a pity that "all that" is so very complicated.
Take great care and many thanks again from Kristina. :grouphug;
What did they mean by striking similarities?
Hello Hereware,
... they thought we had striking similarities in terms of blood-group, fitness, I am also very slim and keep myself as well as is possible etc. ...
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... Has anyone heard about the "Indian-Corona-Virus", which seems to be spreading very fast and is supposedly so powerfully deadly, that it makes the effects of the Pfizer-vaccination and any other vaccination null and void?
I do hope it is "only" rumour ... ? Because if it isn't, where do we go from here ... ? :grouphug;
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Hi kristina,
The particular variant of which you speak is indeed real and not a rumor. There are calls for the government here to halt all flights to/from India because of it. I found that this article had a useful Q & A format and traces the history of it: https://nationalpost.com/news/world/theres-a-new-double-mutant-covid-19-variant-in-india-how-worried-should-we-be
It is a bit to early to discount the efficacy of vaccines according to those in countries that have already experienced cases of this variant. For example, in Israel, it was noted that the vaccine was "partially effective." That is better than nothing. As you'll read in the above article, it states Indian authorities are investigating the efficacy of the vaccines registered in the country for use and this current variant.
(And in fact, it seems like the Israeli experience was based on use of Pfizer: https://timesofindia.indiatimes.com/india/covid-19-pfizer-vaccine-partially-effective-against-indian-variant/articleshow/82172657.cms )
That said, research is still ongoing regarding all the new variants of concerns and how the current vaccines can be tinkered with to match these new variants. All hope is not lost quite just yet. Except to see more variants I guess...like the more "sluggish" Siberian one that has been identified.
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Hi kristina,
The particular variant of which you speak is indeed real and not a rumor. There are calls for the government here to halt all flights to/from India because of it. I found that this article had a useful Q & A format and traces the history of it: https://nationalpost.com/news/world/theres-a-new-double-mutant-covid-19-variant-in-india-how-worried-should-we-be
It is a bit to early to discount the efficacy of vaccines according to those in countries that have already experienced cases of this variant. For example, in Israel, it was noted that the vaccine was "partially effective." That is better than nothing. As you'll read in the above article, it states Indian authorities are investigating the efficacy of the vaccines registered in the country for use and this current variant.
(And in fact, it seems like the Israeli experience was based on use of Pfizer: https://timesofindia.indiatimes.com/india/covid-19-pfizer-vaccine-partially-effective-against-indian-variant/articleshow/82172657.cms )
That said, research is still ongoing regarding all the new variants of concerns and how the current vaccines can be tinkered with to match these new variants. All hope is not lost quite just yet. Except to see more variants I guess...like the more "sluggish" Siberian one that has been identified.
Hello UkrainianTracksuit,
Many thanks for your detailed research-results and, on one hand I am so glad to read & mentally digest more about it, but on the other hand this new development is a bit frightening, because I am still eagerly hoping and waiting to receive my most urgent operation to have finally repaired and "put right" the medical errors that happened during "my" kidney-transplant over two and a half years ago... and ... these medical errors have left me in chronic terrible pain ever since...
I am getting very tired of all the errors and everything else that went so awfully wrong, not only during “my” kidney-transplant, but ever since, due to lack of medical assistance and care ...
I also feel awful, because during the last two and a half years it would have been so good, if I would have been given a chance to look after my husband who had to undergo terrible cancer-operations and treatments and instead of being able to look after him, I was extremely miserable myself with chronic terrible pain...
And now we have to put up with such terrible news about new “variations on a theme of Covid-Virus” ... ... what next? :waiting;
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My husband is eligible to get the AstraZeneca vaccine (aged 40+) at the local pharmacies.
Will he get it? No.
He is an educated person even with a background in the natural sciences. It's not as if he is stupid, or even a big believer in the media, but it has been completely tainted in his mind. His body, his choice. :P
This is one of those moments where it isn't worth fighting, but I'm just dismayed all his logic went out the window.
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Sorry UT we visited with a couple a few weeks ago and the highly educated quantitative financial analyst Ukrainian husband had various logical reasons he was not going to get the vaccine. We felt bad for the wife and for you. It didn’t feel like argument would change his views.
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I have a question for you transplant recipients -you lovely people! :P
Have any of your doctors had you taper down and temporarily stop any of your immuno-suppressant drugs prior to getting the vaccine?
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I have a question for you transplant recipients -you lovely people! :P
Have any of your doctors had you taper down and temporarily stop any of your immuno-suppressant drugs prior to getting the vaccine?
Hey Pea Tea, over here, no. They didn't feel there was enough evidence or a clinical protocol just yet.
That said....
I've heard through the grapevine that those with other illnesses are having their prednisone managed differently around vaccine times, such as a delayed dose.
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Finally got my first appointment for the weekend. Yay! The hospital did all the booking for me!
They asked if I had any caregivers and if they lived in the same household. I said yes though I know he's basically done no caregiving for me :P though he is my "caregiver."
Because of his caregiver status, he was eligible to be vaccinated the same day.
It's a Pfizer shot, so he's on board with that.
Well have a very interesting Easter on Sunday then! :2thumbsup;
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Oh, wow! That's great news all around! Be sure to let us know how you are feeling after you get your shot.
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We both got our first shots of Pfizer yesterday.
Sore arms and headaches started last evening, but today we feel awful. My injection site is swollen up BIG. We both feel feverish (thus chills), muscle pain (I have bad, bad, bad bone pain, but that happened the last time I got bombarded with vaccines, so not a worry) and headachey. I have nausea, but nothing has come of it.
Ah, it's Easter, so we can lay in bed.
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I'm sorry you are both feeling unwell, but this is a good reason to just flop around and do absolutely nothing! Feel better soon!
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We both got our first shots of Pfizer yesterday.
Sore arms and headaches started last evening, but today we feel awful. My injection site is swollen up BIG. We both feel feverish (thus chills), muscle pain (I have bad, bad, bad bone pain, but that happened the last time I got bombarded with vaccines, so not a worry) and headachey. I have nausea, but nothing has come of it.
Ah, it's Easter, so we can lay in bed.
Hello UkrainianTracksuit, I am very sorry about your Pfizer-reaction and "it" may continue another few days, as it did with my husband and me. We both also suffered from headaches and lethargy, muscle pain etc., but both our BP was alright, so we could only conclude, that the headaches were a result of the Pfizer-vaccination.
Best wishes, take great care and I also want to send you my Happy Easter-wishes from Kristina. :grouphug;
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Thanks MM and kristina.
I'm completely back to normal. My husband on the other hand...
He has developed some sort of a rash. It's itchy, red, and sore.
He's driving me to the hospital today because I have a small procedure booked and then he's going to swing by the walk-in clinic to see if he can at least get something to soothe it at all.
I'll try to post an update if I learn anything, but we'll see how I feel. The good news in all this is that (and this is generally known, so don't get angry for stating this :P) the antibiotics prescribed (for me) are completely okay after such a short time after the vaccine.
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I just had my first shot 2 weeks ago, I got moderna. Will just wait for the 2nd dose. No side effects at all
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I just had my first shot 2 weeks ago, I got moderna. Will just wait for the 2nd dose. No side effects at all
Good to hear!
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Had tennis elbow surgery so excuse the one hand typing. Lots of antibiotics for such a small procedure. Did not expect this kind of pain.
Husband has shingles. It seems it is a thing that has happened with Pfizer but not related to the vaccine at all. It is question of causality and everyone says it is not cause/effect just coincidence.
He is happy to have gotten vaccinated still but pissed off at the same time. Not about the vaccine, but the level of care. Doctor told him, "oh you were going to have shingles anyway and this came up now" to which he said bullsh--t! He is a relatively healthy man not close to senior citizen years so I understand him on that point. He has not started prednisone either (waiting for time after the vaccine). If they said it was inflammatory disease related - - - OK! - - but no.
Doctor said stress levels then could contribute to it. Husband said eff no (in those full words) cause he has had stress beyond this and his health never suffered. He is not stressed.
Doctor asked if he was vaccinated for shingles. He said how???? He is not of age to have it.
The attending physician had to consult with the local infectious disease doctor. Said it was ok to take Valtrex as it had been a few days after the vaccine but it is not as if there are guidelines on this that he was aware. Still it is safe to give the vaccine after completion of antivirals but who knows if shortly after. He was prescribed gabapentin too.
Husband is staying away from me. I am vaccinated against shingles but not completely sure of efficacy. He is cordoned off in another room.
Like I said my husband is ok to have the vaccine and does not blame it. Who knows how immune systems will react. What he did not like was how the medics just seem to circle the wagons and passed him off as he would be getting shingles in the very near future and it must be stress. Probably has a red flag beside his name now as he dropped f bombs at the doctor. One English word he says great.
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What exactly happens during tennis elbow surgery? I've heard the term all my life but confess to not knowing what is entailed. I hope you feel better soon and that the pain subsides quickly.
Shingles? Boy, that's out of left field! Is your husband badly affected, or is is a relatively mild case? I don't know what triggers it in people, although I supposed as we age, our immune systems start to weaken, enabling a sleepy virus to rear its ugly head. I've been vaccinated against shingles and assumed I'd be protected, but after this covid kerfuffle, I may not have any protection at all.
I hope your husband feels better soon. He's got a lot on his plate right now.
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With just local anesthetic the surgeon cut into the bony side (outer) of the elbow. Then once in there, he cut out the damaged chunk of tendon and then reattached the normal part back to the bone. I am told cause I am high risk for complications (immune status) and worried about blood flow, the doctor took off some chunk of bone too. It may be a short surgery but I was not advised that this would be painful so I did not think much of it. I am an idiot.
My friend even said my small procedures have to sound elite. "Tennis elbow" versus something like a Bible bump.
Thankfully it is just a mild case but it is painful enough. He thought it would be some generic rash and he would get a corticosteroid cream. Apparently he says the burning feeling is the worst. His immune system probably is just angry at him for all sorts of reasons lately.
Like you, I am vaccinated against shingles too, but also like you, with this whole covid thing, I am unsure how much I am protected. I am not taking the risk so he's on his own here. Obviously I leave him food and stuff, leave fresh linen and handle the dirty stuff gloved and masked.
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When my mom called for her appointment, she asked if, since I am a dialysis patient, if I could get my shot at the same time. After asking a few people, the answer came back as no. I was eligible to call and make my own appointment a week later. She got hers on May 4 and I got mine on May 12. Why they couldn't have done us at the same time, I've no idea. Now we are just waiting to hear about our second appointments. We got different vaccines, so we can't have our second doses at the same time either.
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When my mom called for her appointment, she asked if, since I am a dialysis patient, if I could get my shot at the same time. After asking a few people, the answer came back as no. I was eligible to call and make my own appointment a week later. She got hers on May 4 and I got mine on May 12. Why they couldn't have done us at the same time, I've no idea. Now we are just waiting to hear about our second appointments. We got different vaccines, so we can't have our second doses at the same time either.
Hiya, Riki! It's great to "see" you! I hope you and your mom get your second shots soon.
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Already got my first shot of Pfizer last week, so far so good didn't feel any side effects
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Going for a 2nd attempt. As far as immunosuppressants go, I currently take Prednisone and Methotrexate for Sarcoidosis. My doctor wanted me to try to taper the Prednisone down from 20mg/day to 5mg/day and then maybe completely off. I tried tapering down to 10mg of the Pred for 2 weeks but began coughing/choking/sputtering so went back to my usual dose. I suspect the fact that it was allergy season for me is what made it harder. I am going to attempt to taper down again and then hopefully, go completely off the Prednisone. I probably will go back on the Methotrexate.
Since my husband has passed, I've got no choice but to move in with my brother and his wife and 2 teenagers. I will ask but at the moment I do not know if they've had their Covid vaccinations. In an email my brother asked if I had mine, I said no. I didn't hear anything back from him on this but I wonder if he wants me to be vaccinated before moving in. But I think I should get the vaccine. I have been planning on it anyway but having Sarcoidosis makes it difficult. My doctor said I would need to be off these meds 2 weeks prior to each dose. Since they advise that you wait 3 weeks in-between doses, that means 5 weeks of being off my meds. If I'm figuring that right.
Anyways, if not for myself I think it is the right thing to do. I want the vaccination to help protect my brother and his family. So I've begun the taper-down process...hope I succeed this time.
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Oh Pea Tea, I really hope it works this time and you can get vaccinated! Fingers crossed for you! :cheer:
I received my second shot of Pfizer exactly 28 days after the first. Once again, I will called by the powers that be and they arranged it for the next day. Pretty rad.
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I am on Day 3 of my attempt to taper down on the Prednisone. I will skip the Methotrexate this week. Kind of wheezy today but don't necessarily think it's because of the taper down. We'll see. Meanwhile, I made my two appointments for the vaccine. My sis in-law said they've all been vaccinated except for my autistic nephew -he refuses. But they said they would get him vaccinated if I want. I'd hate for him to go thru any trauma. Being autistic he is very sensitive about things. He's a great kid and I love him and would absolutely hate to put him thru this. I do think he should be vaccinated, just for his own safety but I do not want it to be because of me. I don't want that hanging over my head. Hope this isn't too selfish of me. Anyways, he doesn't go out much so he is low risk. I think it's better if I can be vaccinated. Just hope I can do it before I move.
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I am on Day 3 of my attempt to taper down on the Prednisone. I will skip the Methotrexate this week. Kind of wheezy today but don't necessarily think it's because of the taper down. We'll see. Meanwhile, I made my two appointments for the vaccine. My sis in-law said they've all been vaccinated except for my autistic nephew -he refuses. But they said they would get him vaccinated if I want. I'd hate for him to go thru any trauma. Being autistic he is very sensitive about things. He's a great kid and I love him and would absolutely hate to put him thru this. I do think he should be vaccinated, just for his own safety but I do not want it to be because of me. I don't want that hanging over my head. Hope this isn't too selfish of me. Anyways, he doesn't go out much so he is low risk. I think it's better if I can be vaccinated. Just hope I can do it before I move.
Hello PrimeTimer,
I am really glad to "see" you and very much congratulate you on how you approach your future in this difficult and very sad situation ... you are very much admired for this and I can well imagine how hard it is for you right now ... and ... I was just wondering if it would be a good idea to make an appointment for your nephew to see his GP/doctor, who could check-up on his health etc. in this difficult time and perhaps the GP/doctor could also explain to him the importance to get this vaccination in order to protect his life as much as is possible? This action could first of all take away the attention from you as a vulnerable person in a fragile health-situation, but it could also point out to your nephew, that everyone's life is at risk and therefore this vaccination is - as far as we know - the only positive way forward?
I wish you all the best and send you my kind regards from Kristina. :grouphug;
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Anyone have an opinion or experience with the Johnson & Johnson vaccine? Apparently it is a one-time jab. I have attempted twice now to taper down/wean off my meds as my doctor instructed me before being vaccinated but, it ends in disaster and I have to go right back to my usual dosing.
Since my husband has passed away I am having to move in with my brother and his family in another state. They have since all been vaccinated. Every time I taper down tho, I start coughing and choking and my O2 level drops like a rock. I am alone right now and having to exert myself with sorting thru stuff and clean and pack. Cannot do it if I can't breath. So now I am thinking of getting vaccinated after I move, when I can mostly rest and not be exerting myself (thus hoping to avoid the breathing problems and O2 drops). But my SIL would like me to look into getting the one-time jab offered by J&J. However, I am a bit concerned about that because they say some people have ended up with Guillain-Barre' Syndrome from the J&J vaccine. I've enough problems as it is. I do not need anymore. So, I am just wondering if I am doing the right thing by passing on the J & J vaccine. I am not opposed to getting vaccinated, just not really wanting the J & J and as for the others (Pfizer or Moderna) I do think I need to wait until I know that I won't be exerting myself.
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PT on a webinar right now a doctor described the side effects as the type of things that only come out after you have vaccinated hundreds of millions of people.
That is along the lines of what I feel - there are risks that exist - but those risks are very low and compared to other random household risks end up being lower. My personal feeling is that everyone should be vaccinated. And I support the CDC type view of the best vaccine is the one you get.
As a side question does your doctor feel its critical you taper your meds for vaccination? So far in the transplant community they are not recommending med changes in anticipation of vaccination.
She also just mentioned that Guillain-Barre' Syndrome is a side effect of many vaccines, including the flu shot.
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Thanks for responding, iolaire. I definitely want to get vaccinated. When I first read up on Sarcoidosis, it has a person thinking it is no big deal and that only a very small percentage of patients end up with the more severe, chronic form. Well, that is what I have. Stage Four. So when I think of Guillain-Barre' Syndrome as being a "low risk" of the Johnson & Johnson vaccine, I don't know that people like me, who already have a severe health problem, should get that particular one-jab vaccine. True, any vaccination comes with risks but this whole Covid vaccination issue is still relatively new to the world. It is scary.
As for tapering down on my meds, yes, my doctor definitely wants me to do that. He said enough of my immune system needs to come back so it will create anti-bodies from the vaccine. Maybe he says that because Covid attacks/destroys the lungs and the Sarcoidosis has already caused permanent scarring in mine. I am breathing on just 49% lung capacity as it is. You get down to 30% or less and your life expectancy is less than one year.
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I agree - the best vaccine is one you can get.
The thing with the J&J vaccine that gives me pause is that it has a 67% efficacy. So, still good enough, and it will provide some protection, most importantly in the case that *knock wood* you ever get ill.
Is your doctor helping you with a taper down at all? It seems like with your serious condition and playing around with important medications, you kind of need "a hand to hold" or more of a strategy. Are there any suggestions that they could give? They must know your O2 would drop like heck without your pred.
The whole discussion over Guillain-Barre arises at flu shot time every year and yes, it does happen to people. I got a big warning about it when I had to get vaccinated for HPV. Do you know if any family members have had that reaction? Apparently, that is a good indicator of your risks. The doctor at the webinar today said that Guillain-Barre hasn't shown up post-mRNA vaccinations. You're just in such a difficult spot.
Are you trying to taper down to below 20 mg? It is my understanding (side knowledge) that doses below the 20 mg don't particularly affect immunity. Does your doctor have an ideal dose for you to safely get vaccinated and breathe?
Since the efficacy may be in question (again, who knows, you'll be like us), you'll want to practice social distancing, mask wearing, etc, still. The vaccine may trigger other types of protection (it's more than antibodies). Just continue to be as safe as possible.
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Are you trying to taper down to below 20 mg? It is my understanding (side knowledge) that doses below the 20 mg don't particularly affect immunity. Does your doctor have an ideal dose for you to safely get vaccinated and breathe? -Ukrainian Tracksuit
Yes UT, I am trying to get down to at least 5mg. My doctor said if I started having difficulty then to go back to my usual 20mg. Right about 14 days into being down to 10mg is when I have problems. I am thinking tho that after I move and spend time just sitting/resting and not needing to exert myself, that I could maybe try it again. But I'm having (well, trying) to do all kinds of physical things right now to get ready for my move. Not easy, not even at 20mg. At least I am not around anyone. I have food and meds delivered and they leave it at my door and step away. And when I move it will be about a 2 day drive but we don't have to stop and eat indoors anywhere. And where I will be living is far out in the country outside a tiny town -no people or crowds there. I am thinking this will afford me time to try the taper down again without too much risk of contracting Covid. And if I do ever get Covid, I am going to sign a DNR.
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My MD had an interesting experience as a renal fellow. His attending had a patient on 5mg prednisone only, doing well with the transplant, no rejection.
So, they decided he could probably get rid of that "insignificant" 5mg dose. They did and the patient lost the kidney.
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My MD had an interesting experience as a renal fellow. His attending had a patient on 5mg prednisone only, doing well with the transplant, no rejection.
So, they decided he could probably get rid of that "insignificant" 5mg dose. They did and the patient lost the kidney.
And then there are us patients on a prednisone free protocol. I was weaned off the 5 mg maintenance prednisone 6 months (or around there) post-tx and my function has never dipped below 90 eGFR. Not one size fits all.
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I am also on Prednisone free, but take mycophenolate and tacro. The case I referred to was someone on 5mg prednisone only.
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My nephrologist said the studies do show better results for prednisone based treatment so there is no reason to remove it if I didn’t have side effects etc. and with my history of lupus it’s safer to stay on 5 mg.
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I have a specific reason to avoid prednisone (prednisone induced avascular necrosis) but what is interesting is that the prednisone free protocol is standard at the shop I used. Weaned from it before leaving the hospital, finally settled in at 250mg mycophenolate daily and 1mg tacro twice a day, no signs of rejection.
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Anyone have an opinion or experience with the Johnson & Johnson vaccine? Apparently it is a one-time jab. I have attempted twice now to taper down/wean off my meds as my doctor instructed me before being vaccinated but, it ends in disaster and I have to go right back to my usual dosing.
Since my husband has passed away I am having to move in with my brother and his family in another state. They have since all been vaccinated. Every time I taper down tho, I start coughing and choking and my O2 level drops like a rock. I am alone right now and having to exert myself with sorting thru stuff and clean and pack. Cannot do it if I can't breath. So now I am thinking of getting vaccinated after I move, when I can mostly rest and not be exerting myself (thus hoping to avoid the breathing problems and O2 drops). But my SIL would like me to look into getting the one-time jab offered by J&J. However, I am a bit concerned about that because they say some people have ended up with Guillain-Barre' Syndrome from the J&J vaccine. I've enough problems as it is. I do not need anymore. So, I am just wondering if I am doing the right thing by passing on the J & J vaccine. I am not opposed to getting vaccinated, just not really wanting the J & J and as for the others (Pfizer or Moderna) I do think I need to wait until I know that I won't be exerting myself.
So, anyone have experience or an opinion on the one-time jab with Johnson & Johnson? Maybe I ought to just go with any of the vaccines, whether I am still on Prednisone or not. There's nothing worse than the loss of my husband so at this point, I've got nothing to lose from trying any of the vaccines.
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I have a specific reason to avoid prednisone (prednisone induced avascular necrosis) but what is interesting is that the prednisone free protocol is standard at the shop I used. Weaned from it before leaving the hospital, finally settled in at 250mg mycophenolate daily and 1mg tacro twice a day, no signs of rejection.
Hello Simon, I am also on Mycophenolate and Tacro, different dosages, but same medicine ... Do you notice any side-effects ?
P.S. I have not been informed about another Pfizer-vaccination after the two one's I had earlier this year ...
Hello Iolaire, hopefully you are continuing to do well on your Prednisone-prescription for Lupus ... I have only tried Prednisone once - many years ago - but it was discontinued after one week because of an allergy, which was causing me severe side-effects...
Best good-luck-wishes from Kristina. :grouphug;
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I have loose stools, but I think that is a side effect of a different med. I had some tingling in the palm of my right hand when first on Tacro, but that went away. They started me on 1000mg Mycophenolate twice daily and 4mg of Tacro twice daily upon discharge, but tapered that down rather quickly. Myco was lowered becuase I had low WBC at the time, but that has been mostly resolved but they kept the dose since it working for me.
3rd dose vaccine comes from an MD who reads the current medical papers; balanaces risk vs. reward; and thinks it is a good idea. He does not blindly follow "recommendations" as they are waiting for "proof it is effective" rather than evidence of "negligible downside risk". It will be interesting to see if he orders a 3rd does or if just show up and STFU.
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Many thanks Simon for your kind thoughts and information, I do appreciate it very much and it creates for us a fair chance to compare notes about our medicines and side-effects etc. Perhaps this here might not be the perfect topic to mention our anti-rejection-medications, but I am so happy for us to exchange our notes and perhaps some other "transplants" might join in as well?
I also wonder whether specialists "measure" the amount of anti-rejection-meds according to our body-measurements like weight and height etc.? Or perhaps doctors work-out different anti-rejection-medicine-"regimes" in different countries?
For example, at breakfast (~ 7.30am) I take every day 5mg anti-hypertensives plus 30mg Cinacalcet.
Then, from 8am onwards there is no food to be taken at all, in order to give the 10am-meds the best possible chance to "do their anti-rejection-job" properly and at their very best.
Precisely at 10 am I take my first daily dosage of Tacrolimus, which is 2 x 1 mg capsules and nothing is to be eaten for the next two hours either.
Precisely two hours later at ~ 12pm I can prepare and eat some lunch, but never ever before 12pm.
Then again, from 8 pm onwards, there is no food at all to be taken, in order to give the 10pm-meds the best possible chance and continue doing " their anti-rejection-job" properly.
At 10pm I take my second dosage of Tacrolimus, again 2 x 1 mg capsules plus 1 capsule of 250 mg Mycophenolate.
I was told that it is most important to be absolutely precise in terms of time, never miss a dosage and to make absolutely sure that from 8 am and 8 pm there is no food at all to be taken for at least two hours. I also found out that if I ever would become a bit easy going (laissez faire) about the time etc., it would have devastating results.
These very "tight measures" might at first come-over as extremely "regimented", but the good news is, that the body and survival-instinct get very quickly used to it and the more precise "one" goes about it, the easier it is for the body to take these heavy medicines and it is also better in the "long run" because it keeps the transplanted kidney "as sweet as possible", and an easy-go-lucky-attitude (laissez-faire) could really have very quickly devastating results. My usually very artistic mind adapted to it all surprisingly quickly and by now I have a pretty good idea, without looking at the time, whenever it is time for my anti-rejection-medicines to be taken.
I also found by chance some lovely little pill-boxes for home and also for the handbag etc. on Amazon etc. and these lovely little pill-boxes look very beautiful and psychologically very "inviting" and lovely and their beauty assists me psychologically, to adhere to this "regimented" system of pill-taking in a positive way and with a much better attitude.
Good luck and all the best from Kristina. :grouphug;
P.S. I just wonder whether my detailed explanation about my anti-rejection-transplant-medication etc. and when to take it etc. etc. might perhaps have been mentioned at the "wrong" topic and should perhaps be at the Kidney-Transplant-Section instead ? What do you think? :grouphug;
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I was told that it is most important to be absolutely precise in terms of time, never miss a dosage and to make absolutely sure that from 8 am and 8 pm there is no food at all to be taken for at least two hours. I also found out that if I ever would become a bit easy going (laissez faire) about the time etc., it would have devastating results.
Did they allow you to pick your times? I was told to be consistent but have picked my own times, currently 4 am/4 pm so as to have minimal impact on my eating schedule. Pre covid it was 5 am/5 pm as I returned home from work later. I set an alarm for the early morning pills and go back to sleep afterwards.
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I was told that it is most important to be absolutely precise in terms of time, never miss a dosage and to make absolutely sure that from 8 am and 8 pm there is no food at all to be taken for at least two hours. I also found out that if I ever would become a bit easy going (laissez faire) about the time etc., it would have devastating results.
Did they allow you to pick your times? I was told to be consistent but have picked my own times, currently 4 am/4 pm so as to have minimal impact on my eating schedule. Pre covid it was 5 am/5 pm as I returned home from work later. I set an alarm for the early morning pills and go back to sleep afterwards.
Hello again Iolaire, and no, "they" did not advise me to "pick" my own times at all. I was told straight after the transplant, that these times (10 am & 10 pm) were particularly kind/gentle times for my body to take-on these "heavy" anti-rejection-medications and so far (touch wood !!!) I have not had side-effects. Please ask your specialist about it ... just to make sure ...
Best wishes and good luck from Kristina. :grouphug;
P.S. Just out of interest: How did your specialist/s advise you about the timing of taking your anti-rejection-medication etc.? Do you take any other medication as well and does it "clash" as a result of "induced" drug-intolerance, due to "clashes" of medications?
Do all transplant-patients at your Transplant-Clinic take their anti-rejection-medication at the same time?
Are there different dosages of anti-rejection-medications for different patients etc. to take, according to a particular specialist or do all patients in your Clinic all take the same "sort" of anti-rejection-medication?
Is there any communication and perhaps an exchange of experiences etc. taking place at your Transplant-Clinic?
Many thanks again for answering my questions and kind regards from Kristina. :grouphug;
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P.S. Just out of interest: How did your specialist/s advise you about the timing of taking your anti-rejection-medication etc.? Do you take any other medication as well and does it "clash" as a result of "induced" drug-intolerance, due to "clashes" of medications?
Do all transplant-patients at your Transplant-Clinic take their anti-rejection-medication at the same time?
Are there different dosages of anti-rejection-medications for different patients etc. to take, according to a particular specialist or do all patients in your Clinic all take the same "sort" of anti-rejection-medication?
Is there any communication and perhaps an exchange of experiences etc. taking place at your Transplant-Clinic?
Many thanks again for answering my questions and kind regards from Kristina. :grouphug;
I don't recall them mandating specific times. I have two classes of medications, the transplant drugs' twice per day 12 hours apart and then medications which need to be taken with food. Obviously those don't overlap due to the no food two hours before and one hour after. After I was transplanted they tried to get a a support group going but the times didn't work out and the one or two times I showed up no one was there.
I don't recall them having reservations with the medication times changing due to time zones, I know for a fact that I mentioned I thought the levels were slightly off due to getting labs after a trip before I settled back into my time home time zone and they (my transplant/personal nephrologist and his assistant) didn't express concern. I'm interested in hearing other peoples recollection on this.
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My own recollection here...
No, I don't recall any mandated times being advised for efficacy of any medicine. My transplant outpatient booklet offered the tidbit that tx meds be taken at a time patients will remember and it becomes part of the daily schedule. And then, the advice that the meds should be taken every 12 hours. In the section about travel, it stated that patients could move to a time that suits their time zone (such as if it is 7 am in Hong Kong and you like 7 am, use that time for the duration of your trip) OR keep the same time that it was taken domestically, just with the time difference factored in.
The tx floor at the hospital handed out the medications around 8 AM along with breakfast delivery. So, I just adopted the 8 AM and 8 PM (when they handed out the tac dose) times because it worked, it was easy.
And a key point there: breakfast delivery. I've always taken my tx meds with food. Besides the lithograph in the package of Myfortic, no one brought this up to me to have it on an empty stomach 2 hours pre and then 2 hours post. I had the tx-surgeon fellow and tx nephrologists (they weren't following me, so they just came to ask how I was doing, had access to my numbers, said everything looked great, moved on) come into the hospital room during breakfast, with my cereal made in the bowl, and they didn't have an "Egads! what are you doing?!" moment. Not to jinx myself, but my eGFR hasn't dipped below 90% with this regimen, no signs of rejection, and everyone is happy with my progress, so it hasn't been a problem. Not that I eat a heavy breakfast anyway...
Now, for the most part, like 98% of the time, I take everything on time, but there have been times I've been late. Once, like 3.5 hours late - not my fault, just the medical system, and "I'm a tx patient and my medication is due" doesn't move you up in the line - perhaps just at emergency. :P Nothing happened. Another time, I was late, so that meant I definitely went over the half-life of Advagraf, but I was advised it's better to let a stomach settle than vomit it up, retry it, vomit and then hit up the ER. As long as it's in a 4 hr window. OBVIOUSLY take all medications on time, not saying otherwise, but I've been late and still have two new organs continuing to work extremely well. It's more if it becomes a pattern, an everyday thing.
I take one pill (unrelated to tx) as soon as I get up in the morning. An hour after that, I have coffee and whatever. Then my tx meds shortly after. My morning meds are only tx (myco, tac, aspirin, and Septra 3x/wk). Then, myco in the evening. Later, right before bedtime, I pop my tachycardia/"stroke prevention" stuff. I have low blood pressure, so the -prolololololol (trying to be funny there) med is a very low dose.
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Thanks it’s interesting how all of us have unique instructions that are probably center specific. My Envarsus XR (am) and Mycophenolic (am/pm) tablets both have stickers on them saying take on an empty stomach 1 hour before meals or 2-3 hours after a meal unless otherwise directed by your doctor. I’ve been told the meal thing mostly relates to fat as the medicine can bond to fat molecules.
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* I want to correct the word lithograph with monograph. That mistake (I knew I made it right after ::)) niggled at me all night.
Yes, indeed, it is very interesting.
On my box of Myfortic, I have the stickers that say:
"Prolonged or excessive exposure to direct and or any artificial sunlight SHOULD BE AVOIDED while taking this medication."
"SWALLOW WHOLE Do not crush or chew."
"PREGNANCY WARNING. If you are pregnant or considering becoming pregnant you should discuss the use of this medication with your doctor or pharmacist."
My understanding about food is consistency, such as if you take it with food, always take it with food. You're right in that it seems to be center specific. For instance, this info from British Columbia is on the "always take with food to prevent stomach upset" mantra. http://www.transplant.bc.ca/transplant-and-medications/anti-rejection-medication/mycophenolate
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My MD told me that food with Tacro can reduce absorption by up to 50%. Also do not take Mycophenolate at the same time as magnesium supplements.
My tacro and mycophenolate both come with "Hazardous Drug" stickers on the bottle and my wife (RN) is told to wear gloves when administering such drugs.
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My MD told me that food with Tacro can reduce absorption by up to 50%. Also do not take Mycophenolate at the same time as magnesium supplements.
Here the transplant-surgeons talked on similar lines and because of my very small med-dosage, my breakfast takes place from 7am-8am and from then on there is no food to be taken until after 12pm, because of the 10am anti-rejection-meds and, then again supper takes place until 8pm precisely and from then on there is no food to be taken until next morning because of the 10pm anti-rejection-meds. Fortunately so far it has worked for me and hopefully it continues like that ...
Good wishes and best of luck from Kristina. :grouphug;
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I take my meds at 9am and 9pm. Always with food. I've made only a few mistakes in 7+ years. I started off fanatical about taking my meds on time. Now I stay within a half hour. I lost my high anxiety when, on multiple occasions, I sat waiting at the clinic for my labs to be drawn so I could take my meds. If it was really as important as I'd been led to believe, I wouldn't be left waiting so long. I was taught at the hospital to ladder up and down my meds by a half hour each time if I need to change the time. The clinic is over 2 hours away so I have to make an 11am appointment. I start 2 days beforehand moving the time later in the day and then back the other direction after my appointment day.
Kristina--the way you take your meds is the way I thought post-transplant medication would be. But after the first year, it's been pretty minimal for me. I have the pill box set up each week and I have an alert on my phone that I depend on. If I'm going out I will take my other meds before I leave and carry my transplant meds in a tiny plastic bag to take at the appropriate time. There's only 2 these days--1 mg tac and 360 mg Myfortic, twice a day.
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When my mom called for her appointment, she asked if, since I am a dialysis patient, if I could get my shot at the same time. After asking a few people, the answer came back as no. I was eligible to call and make my own appointment a week later. She got hers on May 4 and I got mine on May 12. Why they couldn't have done us at the same time, I've no idea. Now we are just waiting to hear about our second appointments. We got different vaccines, so we can't have our second doses at the same time either.
Hiya, Riki! It's great to "see" you! I hope you and your mom get your second shots soon.
Mom got her second dose (Moderna) on July 10, and I got mine (Pfizer) on July 16. We got our PEI Pass so we can leave the province and come back without self isolating, and I'm waiting on the border to open so that I can visit with my friend Kelly in Washington DC the first week of October.
My lil bro got his first on July 8, his birthday. He had to wait a bit to get it because he was getting his transplant workup done and he had to get a bunch of other vaccines first. They seem to be waiting 12 weeks between doses here, so he'll probably get his second in September or October.