Time is Relative
Twenty five years is a long time. A long time to do, see and feel. A long time to live.
This week I was told that my kidney, Dave's kidney, our kidney, is showing signs of "wear and tear." Apparently, the progression began last year, but it was not bad enough to discuss. This year...well, this year it was worth discussing and prescribing a medicine to hopefully slow the progression. This year is when life changes, yet again.
Luckily, I am very good at this...figuring out what is next, how to deal, how to survive. I am good at "being sick."
The only difference is that this time I am older, much more of a mess and very much alone. This time, I know that I must plan for the worse, and plan now. This time the world and I are different.
According to Einstein's Special theory of relatively, time is relative. Time depends on the reference frame of the observer. If one observer moves with the speed of light them the time will slow down for them....My goal...to learn how to move with the speed of light...
This week I was told that my kidney, Dave's kidney, our kidney, is showing signs of "wear and tear." Apparently, the progression began last year, but it was not bad enough to discuss. This year...well, this year it was worth discussing and prescribing a medicine to hopefully slow the progression. This year is when life changes, yet again.
Luckily, I am very good at this...figuring out what is next, how to deal, how to survive. I am good at "being sick."
The only difference is that this time I am older, much more of a mess and very much alone. This time, I know that I must plan for the worse, and plan now. This time the world and I are different.
According to Einstein's Special theory of relatively, time is relative. Time depends on the reference frame of the observer. If one observer moves with the speed of light them the time will slow down for them....My goal...to learn how to move with the speed of light...
Medically Necessary!
To the insurance people who just decided that my Transplant Team is not "Medically Necessary" - Screw you.
You have changed the course of my life because I was forced to go on my work insurance which is so expensive that I may now have to decide on what meds to get, and if I can go to the Dr when needed. You have no right to say that I should just go to another hospital because the current hospital (yes, the entire hospital) no longer takes my old insurance. You obviously have no clue how that works...it doesn't. When you have had the same team for ten years, you do not just pick up and start over again somewhere else for no reason...
You have changed the course of my life because I was forced to go on my work insurance which is so expensive that I may now have to decide on what meds to get, and if I can go to the Dr when needed. You have no right to say that I should just go to another hospital because the current hospital (yes, the entire hospital) no longer takes my old insurance. You obviously have no clue how that works...it doesn't. When you have had the same team for ten years, you do not just pick up and start over again somewhere else for no reason...
No Longer Feeling Safe
Today is the first time in my adult life that I am actually scared about being a patient. That's because yesterday I realized the medical world is truly a mess and Drs have truly given up...
I walked into the IV Therapy lab at my local hospital with no real information other than I was going to get an Antibody treatment to help with boosting the COVID vaccine. I was told by three of my Dr's to get it, although all seemed somewhat more vague with the details that I am used to, which struck me as strange.
Before I could begin to ask a few questions about how it worked, the nurse told me to sit in a big chair surrounded by machines and all the usual hospital room items. I did as I was told, trying to get the words out before things proceeded, but not fast enough as she slid an IV into my arm.
When I finally became a little more forceful in my quest for details, she handed me a four page information sheet about the treatment. I had barely enough time to scan it when I saw two large needles coming towards me. Panic set in and I obviously began to show how nervous I was because she told me to calm down, very nicely, but obviously long past the honeymoon stage of her job and dealing with people like me.
Next thing I know I was asked to go to another room so that those two needles could be stuck in both butt-cheeks. I got up and did as I was told, the panic getting worse. There is nothing worse for me than not understanding what is happening, and without the proper time to absorb what is going to happen.
Two minutes later I am back in the chair to sit for an hour in case of allergic reactions...lovely.
Wrapped in a blanket, I read the pages and many things jumped off them that scared me: "Experimental, Not FDA Approved, High Reaction Incidences, especially with the heart, not sure of long-term effects, etc., etc." I saw things that would have made me not proceed with the injections if I had known. I realized that my Dr's did not say anything to me because they either did not know, or did not see any point in telling me because they are supposed to be telling their transplant patients to get them. It's the "thing to do" at the moment and they don't have the time or resources to really have any meaningful appointments with their patients anymore. That is what I was picking up from the three of them before...
I tried to ask the nurse questions as I read, and she answered a few. But, finally she said to me in an annoyed tone, "It's just like the vaccine!"
She then told me to stop shaking, which I was not aware I was doing. Feeling foolish, I shut up and put the pages down.
An hour went by and I felt terrible, but was not sure if it was stress or the injections. But, I wanted to go home, so off I went, pages in hand.
It was a rough night and I feel crappy, but hoping that it is temporary. Also, hoping that whatever was just put in my body does not hurt me in another way, now or later.
I will not be getting another set of injections in six months as it is noted to do. I will get the newest booster, but it will not be for a while. There does not seem to be any correct way to go, or real answers. And I know the Dr's are doing their best these days, but I honestly do not feel safe as a patient as I used to.
I walked into the IV Therapy lab at my local hospital with no real information other than I was going to get an Antibody treatment to help with boosting the COVID vaccine. I was told by three of my Dr's to get it, although all seemed somewhat more vague with the details that I am used to, which struck me as strange.
Before I could begin to ask a few questions about how it worked, the nurse told me to sit in a big chair surrounded by machines and all the usual hospital room items. I did as I was told, trying to get the words out before things proceeded, but not fast enough as she slid an IV into my arm.
When I finally became a little more forceful in my quest for details, she handed me a four page information sheet about the treatment. I had barely enough time to scan it when I saw two large needles coming towards me. Panic set in and I obviously began to show how nervous I was because she told me to calm down, very nicely, but obviously long past the honeymoon stage of her job and dealing with people like me.
Next thing I know I was asked to go to another room so that those two needles could be stuck in both butt-cheeks. I got up and did as I was told, the panic getting worse. There is nothing worse for me than not understanding what is happening, and without the proper time to absorb what is going to happen.
Two minutes later I am back in the chair to sit for an hour in case of allergic reactions...lovely.
Wrapped in a blanket, I read the pages and many things jumped off them that scared me: "Experimental, Not FDA Approved, High Reaction Incidences, especially with the heart, not sure of long-term effects, etc., etc." I saw things that would have made me not proceed with the injections if I had known. I realized that my Dr's did not say anything to me because they either did not know, or did not see any point in telling me because they are supposed to be telling their transplant patients to get them. It's the "thing to do" at the moment and they don't have the time or resources to really have any meaningful appointments with their patients anymore. That is what I was picking up from the three of them before...
I tried to ask the nurse questions as I read, and she answered a few. But, finally she said to me in an annoyed tone, "It's just like the vaccine!"
She then told me to stop shaking, which I was not aware I was doing. Feeling foolish, I shut up and put the pages down.
An hour went by and I felt terrible, but was not sure if it was stress or the injections. But, I wanted to go home, so off I went, pages in hand.
It was a rough night and I feel crappy, but hoping that it is temporary. Also, hoping that whatever was just put in my body does not hurt me in another way, now or later.
I will not be getting another set of injections in six months as it is noted to do. I will get the newest booster, but it will not be for a while. There does not seem to be any correct way to go, or real answers. And I know the Dr's are doing their best these days, but I honestly do not feel safe as a patient as I used to.
Privilege or Curse...
Growing old is a privilege most people say. There are many who do not get the chance, and they would probably have agreed.
For the last year I have been taking care of an elderly dog that belongs to an elderly gentleman who had to move into an assisted living facility within a nursing home. Because he is not able to walk her, she was not able to stay with him unless he had daily help. I was asked, and the timing was right, so I agreed.
Every day I go and walk the cute little girl around the facility. Every day I get to see the nursing home experience. Every day I question what is best - to live short, or to live long and end up in one of these places just waiting to die. Many days we pass frail, white-haired men and women out for a slow, painful walk. Their roller-carts supporting them and the attached seat giving them relief every few feet.
We pass a balcony where on many days a menagerie of people in wheelchairs, or slumped in chairs, are listening to music or being forced to play silly games. Led by a well-meaning staff member who seems overly happy in order to make them feel better. For a second I think that it is pretty nice, and that it may not be too bad to have company of any sort in old age. But, then I see the blank look on their faces and change my mind.
We pass by windows where I see the medical staff standing over beds, giving meds and doing their job. The rooms are dark and sad and I know too well what it feels like to be confined to one. Terrifying to think of that is the way we spend the last few years of life.
Most days her dad sits by himself, watching TV and eating anything and everything. Daily meals with the rest of the facility residents, and an occasional visitor is all he has. When I am there I try to talk with him and help him if he needs it. I ask him how he is and many times he does say "Just waiting to die"...
Getting old is a privilege, but how it ends is important. I won't have to worry about it since I won't live that long...
Growing old is a privilege most people say. There are many who do not get the chance, and they would probably have agreed.
For the last year I have been taking care of an elderly dog that belongs to an elderly gentleman who had to move into an assisted living facility within a nursing home. Because he is not able to walk her, she was not able to stay with him unless he had daily help. I was asked, and the timing was right, so I agreed.
Every day I go and walk the cute little girl around the facility. Every day I get to see the nursing home experience. Every day I question what is best - to live short, or to live long and end up in one of these places just waiting to die. Many days we pass frail, white-haired men and women out for a slow, painful walk. Their roller-carts supporting them and the attached seat giving them relief every few feet.
We pass a balcony where on many days a menagerie of people in wheelchairs, or slumped in chairs, are listening to music or being forced to play silly games. Led by a well-meaning staff member who seems overly happy in order to make them feel better. For a second I think that it is pretty nice, and that it may not be too bad to have company of any sort in old age. But, then I see the blank look on their faces and change my mind.
We pass by windows where I see the medical staff standing over beds, giving meds and doing their job. The rooms are dark and sad and I know too well what it feels like to be confined to one. Terrifying to think of that is the way we spend the last few years of life.
Most days her dad sits by himself, watching TV and eating anything and everything. Daily meals with the rest of the facility residents, and an occasional visitor is all he has. When I am there I try to talk with him and help him if he needs it. I ask him how he is and many times he does say "Just waiting to die"...
Getting old is a privilege, but how it ends is important. I won't have to worry about it since I won't live that long...
Trust and Faith...
So...it's been a few days since I received the J&J vaccine and finally back to feeling like my normal crappy self, which is good I guess.
To be honest, I did not run out and take any vaccine appointment that I found because I had it in my head that I could not, would not, get two vaccine doses. Just too many horror stories and I knew if I had a reaction to the first one I would not get the second one. After all, this really is a mind-over-matter type of situation for us all I think. A mix of faith and trust in the system, faith in people who tell us what to do and faith in the future. I have always done what I need to do in order to survive, but after reading the below article this morning, I have to admit my faith and trust are being tested. If they think I am getting three vaccines, they are crazy!
A recent study found fewer than 20% of solid organ transplant patients mounted detectable antibodies to SARS-CoV-2 following a first dose of COVID-19 vaccine, raising questions about vaccine protection in this population compared to immunocompetent people. In the first part of this exclusive MedPage Today video, Editor-in-Chief Marty Makary, MD, MPH, of Johns Hopkins University in Baltimore, speaks to Dorry Segev, MD, PhD, associate vice chair of surgery at Johns Hopkins University School of Medicine and professor of epidemiology at Bloomberg School of Public Health, who authored the study. They discussed the study's findings, their applicability to those with chronic medical conditions on immunosuppressive therapies, and whether CDC's post-vaccination guidelines should be adjusted for these patients. Following is a transcript of their remarks; note that errors are possible. Makary: Hi, I'm Marty Makary with MedPage Today. I'm here with Dr. Dorry Segev, a professor and transplant surgeon at Johns Hopkins, a good friend and colleague. Dorry released a big study out this week that's making a lot of headlines and I thought we could talk to him about it. Dorry, welcome. Good to see ya. Segev: Thanks Marty. Thanks for having me on. Makary: Let's talk about the study that you have. It's an amazing study, it's on immunocompromised, immunosuppressed patients and you found that their antibody response is far weaker, almost a small fraction of what immunocompetent people have. Can you describe your study for the viewers here? Segev: Yeah. So for context if you look at the big randomized trials, you know, tens of thousands of patients, basically 100% of immunocompetent people after dose one of the two-dose mRNA series already have detectable antibodies. Makary: And how long, how long does that take, Dorry, to form, about a week and a half? Two weeks? Segev: Two to three weeks is when they tested. It may form a little bit earlier, but certainly by two to three weeks after your first dose, nearly 100% of people have detectable antibodies. Obviously it goes up after your second dose, but it's detectable enough for us to consider it positive antibody by that early time period. Now in transplant patients, what we found is that only 17% have detectable antibody after dose one. Only 17%. And I'll just give you a little bit, a little overview of how we did the study. So, we don't have access to vaccine like the big vaccine companies. So we did a post-marketing real world study. The day the first EUA became approved, we announced over social media that we were opening this study and that any transplant patient who was interested in participating can register on our website, transplantvaccine.org, and can send us their pre-vaccine samples, and then as soon as they get vaccinated, we can follow them post vaccine. We have more than 3,000 participants. The first thousand came in like the first week, it was truly amazing. And a lot of the people who participated particularly early are healthcare workers. So, you know, to those watching who are healthcare workers, thank you for always contributing to research, even with your own participation in studies. And so we caught people as early as we possibly could, who had access to the vaccine. And so now we have data on hundreds of people who already got the vaccine, already got dose one, already got dose two, who are immunosuppressed, and we are able to follow what's happening to their antibodies. And so, we know that only 17% get detectable antibodies after dose one and worse, if you're on an antimetabolite like MMF or azathioprine, only 8% of people on an antimetabolite will have antibody after dose one. Which, as you might imagine, is quite scary as a transplant patient. Makary: So your study was published this week in JAMA, and pretty remarkable, by the way, how you've been able to creatively recruit and find these people using social media. Is that recruitment process still open if somebody has transplant patients that they'd like to send your way in terms of the data? Segev: Yeah, our recruitment is ongoing. And a lot of the reason for that is that there are new vaccines. So now the J&J is out, and we're certainly looking for transplant patients who are about to receive the J&J vaccine. But also we're looking at subgroups like people who are transplanted quite recently, people with more rare phenotypes. So basically we're encouraging any transplant patients to go to transplantvaccine.org and register if they want to participate. And we will tell them if we are recruiting people of that phenotype at that time. Makary: What does this mean? You studied organ transplant recipients. What does this mean for say non-organ transplant recipients who are on immunosuppressive medications for other reasons? Segev: So we are studying that. So we have a parallel study, vaccineresponse.org, which covers people with chronic conditions. A lot of which either the condition itself or the medications they take are immunosuppressing. And so we're studying people with autoimmune disease, IBD, cirrhosis, ESRD, HIV, et cetera. We're just starting to get data from that. I'll give you kind of the, the gestalt is that if you are on immunosuppression agents, such as mycophenolate, azathioprine, you will probably have a blunted immune response, no matter what reason [there] is for taking those immunosuppression agents. Makary: And what's your pretest hypothesis in terms of how blunted relative to the significantly blunted response that organ transplant recipients have had? Segev: Pretty blunted. I think that's our pretest hypothesis. I mean, these agents, they work, they blunt the immune response. And part of that is blunting the immune response to a vaccine, which is, it's kind of a catch-22, because I want my transplant patient immunosuppressed so that they don't get a rejection, they don't get development of de novo donor specific antibodies, et cetera. But I also want them to respond to the vaccine. I'll tell you some other interesting things. In transplant patients who had COVID-19, in convalescent transplant patients, we do see an immune response that is actually relatively durable. So we published another paper a couple months ago, looking at people who are three to six months out from getting COVID who were transplant patients. And they actually had detectable antibody. I will say though, that the first thing we do when a transplant patient develops COVID, now they're sick with COVID, we turn off their MMF. And so it could very well be that by dropping their MMF so that they could recover from the disease, we also allowed their immune system to develop a durable, natural immunity to that disease. We're also seeing in people who are convalescent, who then get the vaccine, they also have a very good response to the vaccine. So I think it's some combination of the natural priming from the initial COVID infection, then the vaccine can do some of its work. It could very well be that if we gave transplant patients a third dose, that they may be as responsive to the vaccine as immunocompetent people. But right now we're just not able to do that because that's not how the vaccine rollout is working. Makary: Sounds like a great study to consider for somebody. There's a body of literature on those who may be immune without antibodies. Their T-cells may be activated and elevated, and it may be more common in these European studies, among people who are asymptomatic, they had the infection, but felt great. Any thought about whether or not there may be some immunity, either partial or minimal among people that have been vaccinated, but have no antibodies? Segev: Yeah. I mean, certainly T-cell immunity is really important as we know. There's a reason we have T-cells and they help. And we just don't know in transplant patients. Part of what we're doing in our study is looking at T-cell responses. Now, I call this real science, right? There's measuring antibodies -- I can send somebody and get an antibody test and think I'm doing science, but really to do real science, you have to actually study the repertoire of T-cells, the activation of T-cells and things like that. Real science obviously takes more time. So we're still trying to understand what is happening in the T-cell repertoire of these transplant patients. But it's quite possible that they're getting an immune response that's T-cell mediated that's not antibody mediated. I will tell you though, anecdotally, half of medicine is done through science and half of medicine is done through, "Well, this is what happened to my last patient, so I'm going to change my practice entirely based on this anecdote." You know, anecdotally I have like last week, there were new guidelines released that said that vaccinated individuals can relax their public health measures. And just yesterday, I talked to one of my colleagues in New York who told me about two patients, transplant patients, who completed their vaccine series, read the guidelines last week and said, "Oh, wow, we're great." Went out, got COVID and are now hospitalized with COVID infection. So, you know, there are breakthroughs, there are known breakthroughs through the current vaccination practices. And I would certainly let this be a strong caveat that transplant patients should not assume they have immunity just because they finished vaccination. And I'm worried that people will relax their public health behaviors as that's what the talk is. But if you're immunosuppressed, if you are a transplant patient, that is not a wise thing to do today, without at least checking your antibodies and understanding what kind of immune response you got. Makary: Dorry, roughly how many people in the United States have had an organ transplant and how many more have some degree of immunosuppression, is it about 10 million people that have had some immunosuppression? Segev: Yeah. So the estimates are about half a million people are walking around with an organ transplant who are on some amount of immunosuppression. And there are about 11 million people taking immunosuppression for other conditions like autoimmune conditions. Makary: So your study just published has a lot of implications for the CDC. And one of the reasons I wanted to give you a platform here to say something is that, I would hope that the CDC could modify those guidelines they just put out on what vaccinated people can do based on your study. If you were to modify those guidelines, what do you think the stipulation should be? Segev: Yeah, I mean, you know, in fairness, there is a small fine print caveat in the CDC guidelines that say immunocompromised patients, we don't know what's going to happen with the vaccine. I would love for it to be stronger, for it to cite the JAMA paper that we just published. So we published it two days ago and we've gotten 55,000 views on this paper. And I think all 55,000 have emailed me with questions about it, which is fine. Anyone's welcome to email me. But it may take me some time to get back to them. I would love for the CDC to say much more firmly, if you are taking immunosuppression do not assume you have immunity because you have been vaccinated. I would also love for this country to prioritize the caregivers' immunization, to prioritize vaccines for caregivers of people who are not going to have a good immune response to the vaccine. So transplant patients live with family members who take care of them. They should be vaccinated to protect the transplant patient because the transplant patient can't necessarily mount their own protection. And the third thing I would love to see is some way for transplant patients who, after two doses, have had no immune response, to either get a third dose or to get a different agent. So maybe if the mRNA approach didn't work, get the Johnson and Johnson or something like that, to either cross over to a different system of vaccination or to just get a third dose of the vaccine they've already gotten. And I would love for that to be available to people.
To be honest, I did not run out and take any vaccine appointment that I found because I had it in my head that I could not, would not, get two vaccine doses. Just too many horror stories and I knew if I had a reaction to the first one I would not get the second one. After all, this really is a mind-over-matter type of situation for us all I think. A mix of faith and trust in the system, faith in people who tell us what to do and faith in the future. I have always done what I need to do in order to survive, but after reading the below article this morning, I have to admit my faith and trust are being tested. If they think I am getting three vaccines, they are crazy!
A recent study found fewer than 20% of solid organ transplant patients mounted detectable antibodies to SARS-CoV-2 following a first dose of COVID-19 vaccine, raising questions about vaccine protection in this population compared to immunocompetent people. In the first part of this exclusive MedPage Today video, Editor-in-Chief Marty Makary, MD, MPH, of Johns Hopkins University in Baltimore, speaks to Dorry Segev, MD, PhD, associate vice chair of surgery at Johns Hopkins University School of Medicine and professor of epidemiology at Bloomberg School of Public Health, who authored the study. They discussed the study's findings, their applicability to those with chronic medical conditions on immunosuppressive therapies, and whether CDC's post-vaccination guidelines should be adjusted for these patients. Following is a transcript of their remarks; note that errors are possible. Makary: Hi, I'm Marty Makary with MedPage Today. I'm here with Dr. Dorry Segev, a professor and transplant surgeon at Johns Hopkins, a good friend and colleague. Dorry released a big study out this week that's making a lot of headlines and I thought we could talk to him about it. Dorry, welcome. Good to see ya. Segev: Thanks Marty. Thanks for having me on. Makary: Let's talk about the study that you have. It's an amazing study, it's on immunocompromised, immunosuppressed patients and you found that their antibody response is far weaker, almost a small fraction of what immunocompetent people have. Can you describe your study for the viewers here? Segev: Yeah. So for context if you look at the big randomized trials, you know, tens of thousands of patients, basically 100% of immunocompetent people after dose one of the two-dose mRNA series already have detectable antibodies. Makary: And how long, how long does that take, Dorry, to form, about a week and a half? Two weeks? Segev: Two to three weeks is when they tested. It may form a little bit earlier, but certainly by two to three weeks after your first dose, nearly 100% of people have detectable antibodies. Obviously it goes up after your second dose, but it's detectable enough for us to consider it positive antibody by that early time period. Now in transplant patients, what we found is that only 17% have detectable antibody after dose one. Only 17%. And I'll just give you a little bit, a little overview of how we did the study. So, we don't have access to vaccine like the big vaccine companies. So we did a post-marketing real world study. The day the first EUA became approved, we announced over social media that we were opening this study and that any transplant patient who was interested in participating can register on our website, transplantvaccine.org, and can send us their pre-vaccine samples, and then as soon as they get vaccinated, we can follow them post vaccine. We have more than 3,000 participants. The first thousand came in like the first week, it was truly amazing. And a lot of the people who participated particularly early are healthcare workers. So, you know, to those watching who are healthcare workers, thank you for always contributing to research, even with your own participation in studies. And so we caught people as early as we possibly could, who had access to the vaccine. And so now we have data on hundreds of people who already got the vaccine, already got dose one, already got dose two, who are immunosuppressed, and we are able to follow what's happening to their antibodies. And so, we know that only 17% get detectable antibodies after dose one and worse, if you're on an antimetabolite like MMF or azathioprine, only 8% of people on an antimetabolite will have antibody after dose one. Which, as you might imagine, is quite scary as a transplant patient. Makary: So your study was published this week in JAMA, and pretty remarkable, by the way, how you've been able to creatively recruit and find these people using social media. Is that recruitment process still open if somebody has transplant patients that they'd like to send your way in terms of the data? Segev: Yeah, our recruitment is ongoing. And a lot of the reason for that is that there are new vaccines. So now the J&J is out, and we're certainly looking for transplant patients who are about to receive the J&J vaccine. But also we're looking at subgroups like people who are transplanted quite recently, people with more rare phenotypes. So basically we're encouraging any transplant patients to go to transplantvaccine.org and register if they want to participate. And we will tell them if we are recruiting people of that phenotype at that time. Makary: What does this mean? You studied organ transplant recipients. What does this mean for say non-organ transplant recipients who are on immunosuppressive medications for other reasons? Segev: So we are studying that. So we have a parallel study, vaccineresponse.org, which covers people with chronic conditions. A lot of which either the condition itself or the medications they take are immunosuppressing. And so we're studying people with autoimmune disease, IBD, cirrhosis, ESRD, HIV, et cetera. We're just starting to get data from that. I'll give you kind of the, the gestalt is that if you are on immunosuppression agents, such as mycophenolate, azathioprine, you will probably have a blunted immune response, no matter what reason [there] is for taking those immunosuppression agents. Makary: And what's your pretest hypothesis in terms of how blunted relative to the significantly blunted response that organ transplant recipients have had? Segev: Pretty blunted. I think that's our pretest hypothesis. I mean, these agents, they work, they blunt the immune response. And part of that is blunting the immune response to a vaccine, which is, it's kind of a catch-22, because I want my transplant patient immunosuppressed so that they don't get a rejection, they don't get development of de novo donor specific antibodies, et cetera. But I also want them to respond to the vaccine. I'll tell you some other interesting things. In transplant patients who had COVID-19, in convalescent transplant patients, we do see an immune response that is actually relatively durable. So we published another paper a couple months ago, looking at people who are three to six months out from getting COVID who were transplant patients. And they actually had detectable antibody. I will say though, that the first thing we do when a transplant patient develops COVID, now they're sick with COVID, we turn off their MMF. And so it could very well be that by dropping their MMF so that they could recover from the disease, we also allowed their immune system to develop a durable, natural immunity to that disease. We're also seeing in people who are convalescent, who then get the vaccine, they also have a very good response to the vaccine. So I think it's some combination of the natural priming from the initial COVID infection, then the vaccine can do some of its work. It could very well be that if we gave transplant patients a third dose, that they may be as responsive to the vaccine as immunocompetent people. But right now we're just not able to do that because that's not how the vaccine rollout is working. Makary: Sounds like a great study to consider for somebody. There's a body of literature on those who may be immune without antibodies. Their T-cells may be activated and elevated, and it may be more common in these European studies, among people who are asymptomatic, they had the infection, but felt great. Any thought about whether or not there may be some immunity, either partial or minimal among people that have been vaccinated, but have no antibodies? Segev: Yeah. I mean, certainly T-cell immunity is really important as we know. There's a reason we have T-cells and they help. And we just don't know in transplant patients. Part of what we're doing in our study is looking at T-cell responses. Now, I call this real science, right? There's measuring antibodies -- I can send somebody and get an antibody test and think I'm doing science, but really to do real science, you have to actually study the repertoire of T-cells, the activation of T-cells and things like that. Real science obviously takes more time. So we're still trying to understand what is happening in the T-cell repertoire of these transplant patients. But it's quite possible that they're getting an immune response that's T-cell mediated that's not antibody mediated. I will tell you though, anecdotally, half of medicine is done through science and half of medicine is done through, "Well, this is what happened to my last patient, so I'm going to change my practice entirely based on this anecdote." You know, anecdotally I have like last week, there were new guidelines released that said that vaccinated individuals can relax their public health measures. And just yesterday, I talked to one of my colleagues in New York who told me about two patients, transplant patients, who completed their vaccine series, read the guidelines last week and said, "Oh, wow, we're great." Went out, got COVID and are now hospitalized with COVID infection. So, you know, there are breakthroughs, there are known breakthroughs through the current vaccination practices. And I would certainly let this be a strong caveat that transplant patients should not assume they have immunity just because they finished vaccination. And I'm worried that people will relax their public health behaviors as that's what the talk is. But if you're immunosuppressed, if you are a transplant patient, that is not a wise thing to do today, without at least checking your antibodies and understanding what kind of immune response you got. Makary: Dorry, roughly how many people in the United States have had an organ transplant and how many more have some degree of immunosuppression, is it about 10 million people that have had some immunosuppression? Segev: Yeah. So the estimates are about half a million people are walking around with an organ transplant who are on some amount of immunosuppression. And there are about 11 million people taking immunosuppression for other conditions like autoimmune conditions. Makary: So your study just published has a lot of implications for the CDC. And one of the reasons I wanted to give you a platform here to say something is that, I would hope that the CDC could modify those guidelines they just put out on what vaccinated people can do based on your study. If you were to modify those guidelines, what do you think the stipulation should be? Segev: Yeah, I mean, you know, in fairness, there is a small fine print caveat in the CDC guidelines that say immunocompromised patients, we don't know what's going to happen with the vaccine. I would love for it to be stronger, for it to cite the JAMA paper that we just published. So we published it two days ago and we've gotten 55,000 views on this paper. And I think all 55,000 have emailed me with questions about it, which is fine. Anyone's welcome to email me. But it may take me some time to get back to them. I would love for the CDC to say much more firmly, if you are taking immunosuppression do not assume you have immunity because you have been vaccinated. I would also love for this country to prioritize the caregivers' immunization, to prioritize vaccines for caregivers of people who are not going to have a good immune response to the vaccine. So transplant patients live with family members who take care of them. They should be vaccinated to protect the transplant patient because the transplant patient can't necessarily mount their own protection. And the third thing I would love to see is some way for transplant patients who, after two doses, have had no immune response, to either get a third dose or to get a different agent. So maybe if the mRNA approach didn't work, get the Johnson and Johnson or something like that, to either cross over to a different system of vaccination or to just get a third dose of the vaccine they've already gotten. And I would love for that to be available to people.
Just in Case...
It has occured to me a lot lately that I have become a "fatalist." Not the standard definition of the word, but what one becomes when living a chronically ill life alone. It realized that I have been single for ten years now and I have no family close, no real close friends close. Although there are a few very nice people who have offered to help if needed. That's not how it works in my world though.
It occurs to me as I fill up the cat and dog food before I leave the house, just in case something happens and I don't come home. It occurs to me as I make sure the dishes are done and I know where my keys are before I go to bed, just in case something happens in the middle of the night. It occurs to me as I brush my teeth before taking the dog out very early in the morning, just in case something happens.
Today it bothered me that I think this way so much these days, but I accepted that it is a coping mechanisim and I am sure that the constant stress of the pandemic has magnified these worries. I realized that it is okay to do what you must to feel safe and at ease. And then I forgave myself ...just in case...
It occurs to me as I fill up the cat and dog food before I leave the house, just in case something happens and I don't come home. It occurs to me as I make sure the dishes are done and I know where my keys are before I go to bed, just in case something happens in the middle of the night. It occurs to me as I brush my teeth before taking the dog out very early in the morning, just in case something happens.
Today it bothered me that I think this way so much these days, but I accepted that it is a coping mechanisim and I am sure that the constant stress of the pandemic has magnified these worries. I realized that it is okay to do what you must to feel safe and at ease. And then I forgave myself ...just in case...
Hurry Up and Wait...
You would assume that since many doctor visits are virtual at the moment, that it would be easier for Doctors to be on time. Never assume...
Today appointment was not only virtually late, it was totally ridiculous as I hovered my cell phone all over my body as if I was trying to scan myeslf. The Doctor could not see anything and it was a Doctor appointment which was important to see things. The plan is now to try again in a few months, hopefully in person.
I know everyone is doing the best they can, but it all goes to show that having lots of patience is still required whether sitting in a waiting room or waiting for the phone to ring.
Today appointment was not only virtually late, it was totally ridiculous as I hovered my cell phone all over my body as if I was trying to scan myeslf. The Doctor could not see anything and it was a Doctor appointment which was important to see things. The plan is now to try again in a few months, hopefully in person.
I know everyone is doing the best they can, but it all goes to show that having lots of patience is still required whether sitting in a waiting room or waiting for the phone to ring.
Same Thing Different Thoughts...
Last night was full of worry about how I was going to breathe with a mask on in the MRI machine that I had a date with in the morning. How was I going to pull it away from sticking to my nose when my arms were strapped down? How was I going to breathe in and hold it when I could barely breathe in general with the mask on. It was a long night full of "what-ifs."
Today began with a temperature check and list of pandemic questions as I tried to enter the local hospital's main enterance. After I was given permission to proceed to my appointment, I walked the maze of hallways, quiet other than staff in masks seemingly in their own world.
I finally arrived at the MRI Department and was greeted by another list of questions and handed a clipboard of paperwork to complete and sign. The waiting room was small and there were red and white signs plastered to the floor in front of the two receptionists noting to "stand here," but the chairs right behind the line were definitely not six feet apart...never mind the feeling that it had been years since the fabric had been washed, if that was even possible.
As always in my life, I waited far past my scheduled time, so I sat and watched the people coming and going and wondered how they chose the masks they were wearing, why they were there and other silly things that occupy your mind when hanging out in waiting rooms too long. Two gentleman had the same first name and last name initials, so there was a moment of lightheartedness when both stood up when the name was called. It was 8:30 in the morning, so humor was a little easier to come by.
When my turn finally came, I was led back to the waiting room by a woman in a mask and asked yet another set of the same questions, and asked if I had done this before..."yes, a million times or so,"I replied, which got a smile. Jewelry off, hospital socks on, gown on and bathroom visit...and waited some more. Looking around I noticed there were no magazines or any of the usual entertainment, just a few sterile looking fact-plaques which no one ever reads. Although, now maybe people will if they have to sit around staring at the walls long enough.
When the tech came back to escort me to the room I went to put my mask back on and she told me that I did not have to. Although I had a momentary feeling of panic, I said "Oh, okay," wondering how to ask about the person before me, but I did not have the guts to say anything. I had spent the night before worrying about trying to breathe in the MRI machine with my mask on, and now all of a sudden I was worried about not having it on. Never easy...
In the room I was told to put my keys and glasses in the usual spot which was not cleaned and there was no different protocols than any other time. I got on the little MRI bed and the IV was placed easily which is always nice first thing in the morning. As we were talking I casually asked how many they had done and she told me I was the first of the morning. I internally breathed a sigh of relief, it had been overnight since the last person was lying there without a mask, and hopefully long enough to be somewhat safe. Although I still had the urge to ask for my mask, I did not.
My ears were stuffed with plugs and bulky headphones were clamped to the side of my head. I was covered in a blanket, covered with different sized plates and strapped in. Inside the machine I stared at the top of the cold white metal six inches from my face and thought to myself that from now on I may have to schedule all of my appointments first thing in the morning.
Then the banging began and life went on...
Today began with a temperature check and list of pandemic questions as I tried to enter the local hospital's main enterance. After I was given permission to proceed to my appointment, I walked the maze of hallways, quiet other than staff in masks seemingly in their own world.
I finally arrived at the MRI Department and was greeted by another list of questions and handed a clipboard of paperwork to complete and sign. The waiting room was small and there were red and white signs plastered to the floor in front of the two receptionists noting to "stand here," but the chairs right behind the line were definitely not six feet apart...never mind the feeling that it had been years since the fabric had been washed, if that was even possible.
As always in my life, I waited far past my scheduled time, so I sat and watched the people coming and going and wondered how they chose the masks they were wearing, why they were there and other silly things that occupy your mind when hanging out in waiting rooms too long. Two gentleman had the same first name and last name initials, so there was a moment of lightheartedness when both stood up when the name was called. It was 8:30 in the morning, so humor was a little easier to come by.
When my turn finally came, I was led back to the waiting room by a woman in a mask and asked yet another set of the same questions, and asked if I had done this before..."yes, a million times or so,"I replied, which got a smile. Jewelry off, hospital socks on, gown on and bathroom visit...and waited some more. Looking around I noticed there were no magazines or any of the usual entertainment, just a few sterile looking fact-plaques which no one ever reads. Although, now maybe people will if they have to sit around staring at the walls long enough.
When the tech came back to escort me to the room I went to put my mask back on and she told me that I did not have to. Although I had a momentary feeling of panic, I said "Oh, okay," wondering how to ask about the person before me, but I did not have the guts to say anything. I had spent the night before worrying about trying to breathe in the MRI machine with my mask on, and now all of a sudden I was worried about not having it on. Never easy...
In the room I was told to put my keys and glasses in the usual spot which was not cleaned and there was no different protocols than any other time. I got on the little MRI bed and the IV was placed easily which is always nice first thing in the morning. As we were talking I casually asked how many they had done and she told me I was the first of the morning. I internally breathed a sigh of relief, it had been overnight since the last person was lying there without a mask, and hopefully long enough to be somewhat safe. Although I still had the urge to ask for my mask, I did not.
My ears were stuffed with plugs and bulky headphones were clamped to the side of my head. I was covered in a blanket, covered with different sized plates and strapped in. Inside the machine I stared at the top of the cold white metal six inches from my face and thought to myself that from now on I may have to schedule all of my appointments first thing in the morning.
Then the banging began and life went on...
Thirty Days...
I have spent today like I have the last 30 days...taking things minute by minute and trying to find a way to feel okay with the world. Trying not to worry every time I cough or something else that could be a sign of doom.
It was March 13th, 2020 when we were told that we would be working from home. Things were chaotic and somewhat of a blur now that I look back on that first week. Feels like a life-time ago.
Besides the expected feeling of angst over this mess, one other feeling keeps bothering me...
I was born sick, but have done my best to live a "normal" life in the things that matter. That being that I take care of myself in all ways and expect and rely on nothing from anyone. It's not been a choice, just who I am.
But, I currently find myself having to accept the opposite of who I am and have groceries and medicine delivered to me as I hide in the house like a sick person. It's a very uncomfortable and humbling feeling to ask for and rely on others to help me, even if they are getting paid. I much prefer to be the one who is helping and would be out there doing so if I could.
So, I am treating this experience as a learning one and a way to grow as a person, and if nothing bad happens then it will be worth it. If something does happen, then at least it was a chance to learn and grow anyway...
It was March 13th, 2020 when we were told that we would be working from home. Things were chaotic and somewhat of a blur now that I look back on that first week. Feels like a life-time ago.
Besides the expected feeling of angst over this mess, one other feeling keeps bothering me...
I was born sick, but have done my best to live a "normal" life in the things that matter. That being that I take care of myself in all ways and expect and rely on nothing from anyone. It's not been a choice, just who I am.
But, I currently find myself having to accept the opposite of who I am and have groceries and medicine delivered to me as I hide in the house like a sick person. It's a very uncomfortable and humbling feeling to ask for and rely on others to help me, even if they are getting paid. I much prefer to be the one who is helping and would be out there doing so if I could.
So, I am treating this experience as a learning one and a way to grow as a person, and if nothing bad happens then it will be worth it. If something does happen, then at least it was a chance to learn and grow anyway...
The Today's To Come...
Today I was told that my bones have deteriorated even more in the last year. This is due to the Pred I have now been on for more than 20 years. Enough damage for my Dr to say with a very serious face, and stern voice, as I walked out the door; "Don't fall down." Ha...anyone who knows me, knows I am a complete spaz so good luck with that!
This on top of the now constant UTI's that are only being somewhat suppresed by the last medication available, the Adrenal Insufficiency which is kickin my ass on a daily basis, the constant insane sinus issues and constant fatigue, the eye and skin issues from the Pred...and so on...
Well, you put it all together...
I am unable to get any assistance because I have been working for the last 20 years and am in the "grey area," yet again. Being punished because I was, and have been, too responsible. Responsible because I am, but also because I have never been able get to any assistance when I have tried, so of course I have had to do what I have had to do to pay my bills, medicine and to live. It is scary to know that at some point, even sooner that I had ever thought, I may not be able to walk, may have to spend time in the hospital getting IV's and many other things that come to mind. It is scary to think of not being independent and to know that I have no one to share life with when that does happen.
Yet, in a few days, with any luck, I will turn 52 years old and consider myself incredibly lucky on all levels. I am grateful for the good and for the bad, for the possibilities and opportunities.
I am acutely aware, every day, that tomorrow will bring more bad. But, I am also acutely aware every day that each day is worth it.
Here's to the today's to come...
This on top of the now constant UTI's that are only being somewhat suppresed by the last medication available, the Adrenal Insufficiency which is kickin my ass on a daily basis, the constant insane sinus issues and constant fatigue, the eye and skin issues from the Pred...and so on...
Well, you put it all together...
I am unable to get any assistance because I have been working for the last 20 years and am in the "grey area," yet again. Being punished because I was, and have been, too responsible. Responsible because I am, but also because I have never been able get to any assistance when I have tried, so of course I have had to do what I have had to do to pay my bills, medicine and to live. It is scary to know that at some point, even sooner that I had ever thought, I may not be able to walk, may have to spend time in the hospital getting IV's and many other things that come to mind. It is scary to think of not being independent and to know that I have no one to share life with when that does happen.
Yet, in a few days, with any luck, I will turn 52 years old and consider myself incredibly lucky on all levels. I am grateful for the good and for the bad, for the possibilities and opportunities.
I am acutely aware, every day, that tomorrow will bring more bad. But, I am also acutely aware every day that each day is worth it.
Here's to the today's to come...
Because every day is something new...
People often ask me how I am feeling and I tell them the same thing...it depends on the day.
Today was a bad day, a day where I could barely function, but managed to work almost nine hours and accomplish a lot. My stomach, which has been good the last year amazingly enough, has been bad the last two weeks. Not the bad, so far, that put me in the hospital twice a few years ago. But, bad enough that I have been up every morning around 2am with multiple trips to the bathroom until 5:30 when it is time to get up….and it has been ugly. My abdomen has been horribly swollen and every time I eat it gets worse. Now, of course, I have gotten another UTI, which is not a surprise, but not good. I get UTI’s every week now thanks to the lovely pre-menopause issues raking my already fragile body over the coals. Oh yeah, can’t forget the Adrenal Insufficiency mixed in to make things horrible. The pain in my pelvis area is so intense today I can barely walk. And it is on both sides which worries me more than normal.
Today my temperature hasn’t dropped low as it can these days, but instead is a little above normal. This means that I do have a fever far above that. But, if I went to the ER they would take my temperature and look at me like I am crazy, as so often happens, because so many in the medical world don’t seem to understand what Adrenal Insufficiency does. As usual, I have to teach those who are supposed to be helping me. As a friend of mine once said, “That’s why they call it a medical “practice.” Today my eyes are also incredibly painful and bloody red, another side effect of the Adrenal Insufficiency I think. But then again, I can’t get any doctor to answer this for me. I am pretty sure though because it seems to happen when I am not feeling well these days. That and having constant blood vessels pop in my eyes due to the steroid. My face is somewhat numb, my fingers are tingling on and off, and I really just feel like shit.
As usual, when things are going haywire with my body, I have to analyze why and what I should, or can, do about it. I have gone through the list of things that could possibly have set off my stomach issues. I figure out a few things that it may be, but it could be others as well. Just to be safe I stop eating a few food items that I calculated I ate within the last two weeks, I have bought bottled water instead of using my filter just I case as there is an ongoing septic issue at the place I currently live in. I have wondered if it is the steroid I use catching up with me, or the new powder antibiotic I have used the last year. And I have worried a lot if I will have to give the antibiotic up because it is all I have left to help me. I am resistant to most other antibiotics these days. And I worry about it if is something worse like cancer…. Playing doctor is part of my life since doctors have become so useless, so finding my way through this process is just part of my normal routine.
I have thought about what will happen if I have to go to the hospital. It’s Thursday right now, so if I can get through tomorrow at work then I can go this weekend and not lose any time at work. This has always been important to me and so many times over my life I have worked when most people would not be able to get out of bed…because I have to, and because I need to. I plan out if I will be able to ask someone to take care of my dog and my cat. I worry about how my dog will be if this happens. I worry about how my cat will be if this happens.
I called my gastro doctor today to see if he can see me before my already scheduled appointment in two weeks, but he is booked up for another month. So, as usual, I will see how it goes and most likely end up in the ER because there is no place else to go. It takes a lot for me to go there…
Well, turns out the doctor thinks it may have been some sort of infection, but he was not positive. But, of course, once that cleared up somewhat I started having crazy pains in my chest but I knew they were not heart related since I know what that feels like. Turns out I somehow now have a hiatal hernia. Go figure how that happened.
Today was a bad day, a day where I could barely function, but managed to work almost nine hours and accomplish a lot. My stomach, which has been good the last year amazingly enough, has been bad the last two weeks. Not the bad, so far, that put me in the hospital twice a few years ago. But, bad enough that I have been up every morning around 2am with multiple trips to the bathroom until 5:30 when it is time to get up….and it has been ugly. My abdomen has been horribly swollen and every time I eat it gets worse. Now, of course, I have gotten another UTI, which is not a surprise, but not good. I get UTI’s every week now thanks to the lovely pre-menopause issues raking my already fragile body over the coals. Oh yeah, can’t forget the Adrenal Insufficiency mixed in to make things horrible. The pain in my pelvis area is so intense today I can barely walk. And it is on both sides which worries me more than normal.
Today my temperature hasn’t dropped low as it can these days, but instead is a little above normal. This means that I do have a fever far above that. But, if I went to the ER they would take my temperature and look at me like I am crazy, as so often happens, because so many in the medical world don’t seem to understand what Adrenal Insufficiency does. As usual, I have to teach those who are supposed to be helping me. As a friend of mine once said, “That’s why they call it a medical “practice.” Today my eyes are also incredibly painful and bloody red, another side effect of the Adrenal Insufficiency I think. But then again, I can’t get any doctor to answer this for me. I am pretty sure though because it seems to happen when I am not feeling well these days. That and having constant blood vessels pop in my eyes due to the steroid. My face is somewhat numb, my fingers are tingling on and off, and I really just feel like shit.
As usual, when things are going haywire with my body, I have to analyze why and what I should, or can, do about it. I have gone through the list of things that could possibly have set off my stomach issues. I figure out a few things that it may be, but it could be others as well. Just to be safe I stop eating a few food items that I calculated I ate within the last two weeks, I have bought bottled water instead of using my filter just I case as there is an ongoing septic issue at the place I currently live in. I have wondered if it is the steroid I use catching up with me, or the new powder antibiotic I have used the last year. And I have worried a lot if I will have to give the antibiotic up because it is all I have left to help me. I am resistant to most other antibiotics these days. And I worry about it if is something worse like cancer…. Playing doctor is part of my life since doctors have become so useless, so finding my way through this process is just part of my normal routine.
I have thought about what will happen if I have to go to the hospital. It’s Thursday right now, so if I can get through tomorrow at work then I can go this weekend and not lose any time at work. This has always been important to me and so many times over my life I have worked when most people would not be able to get out of bed…because I have to, and because I need to. I plan out if I will be able to ask someone to take care of my dog and my cat. I worry about how my dog will be if this happens. I worry about how my cat will be if this happens.
I called my gastro doctor today to see if he can see me before my already scheduled appointment in two weeks, but he is booked up for another month. So, as usual, I will see how it goes and most likely end up in the ER because there is no place else to go. It takes a lot for me to go there…
Well, turns out the doctor thinks it may have been some sort of infection, but he was not positive. But, of course, once that cleared up somewhat I started having crazy pains in my chest but I knew they were not heart related since I know what that feels like. Turns out I somehow now have a hiatal hernia. Go figure how that happened.
Eighteen Years!
Today it has been eighteen years since my transplant. I have repeated this to myself a few times since I woke up this morning and it seems difficult to comprehend all that has happened along the way. To this day flashes of memories still pass through my mind’s eye at random times, but they always seem to happen more when this anniversary gets closer. And that of Dave’s birthday. Either he is out there making that happen, or our minds really are more powerful than we really understand. I cannot say I deserve to be here, and still question why I am when others are not any longer. I can say that I go to bed almost every night saying thank you for the good and thank you for the bad…and mean it. I can say that I am definitely not the same person I was then, maybe not better nor worse, but definitely different. I am tired both physically and mentally, yet feel more at peace than I ever have. Perhaps it is a natural progression with age, or perhaps all that I have been through. Either way, I am eternally grateful for the chance to be able to see, feel, do and be every second of these eighteen years. And if I am lucky enough, I will have the chance to continue to find my way for a few more. Thank you Dave.
Desperate Times...
Over the years I have ventured out of the vicious cycle of Western medicine in desperate attempts to get help. It used to be just for help with my urinary tract infections so it seemed like a possibility to explore.
The first attempt was a visit to a Chinese Herbalist who gave me a mystery tea to drink. My stomach, which had been cranky since shortly after the transplant, was very unhappy with that experiment. Then a visit to a Naturopath where I spent hours filling out a questionnaire and another few reviewing the answers with someone, only to be sent home with a tiny vile of small white beads which turned out to be baby placenta. I obviously did not consume them, never mind even open the vile. I did however put it on the table and marvel at the craziness of it for a few days before it went unceremoniously in the trash.
With those two paths not a viable option for salvation, acupuncture has crossed my mind on and off the last few years. You would think with the thousands of needles my body has endured a few tiny ones would be nothing that would scare me. But, alas it did. Funny how things change when issues get more serious and antibiotics are out of reach. Suddenly being scared of tiny needles seems horribly trivial. So, that's how I found myself today lying on a fabric covered table in a small room with eight tiny needles sticking out of my feet and legs and a big bell propped on my stomach to ring in case I freaked out.
It was a very long 15 minutes, but I think I will try it again. After all, desperate times make for desperate measures.
The first attempt was a visit to a Chinese Herbalist who gave me a mystery tea to drink. My stomach, which had been cranky since shortly after the transplant, was very unhappy with that experiment. Then a visit to a Naturopath where I spent hours filling out a questionnaire and another few reviewing the answers with someone, only to be sent home with a tiny vile of small white beads which turned out to be baby placenta. I obviously did not consume them, never mind even open the vile. I did however put it on the table and marvel at the craziness of it for a few days before it went unceremoniously in the trash.
With those two paths not a viable option for salvation, acupuncture has crossed my mind on and off the last few years. You would think with the thousands of needles my body has endured a few tiny ones would be nothing that would scare me. But, alas it did. Funny how things change when issues get more serious and antibiotics are out of reach. Suddenly being scared of tiny needles seems horribly trivial. So, that's how I found myself today lying on a fabric covered table in a small room with eight tiny needles sticking out of my feet and legs and a big bell propped on my stomach to ring in case I freaked out.
It was a very long 15 minutes, but I think I will try it again. After all, desperate times make for desperate measures.
No choice in some choices...
Do I go or do I not? That question used to be easier to answer, but now the answer is no unless I am really, really, really sick. And then the chances of being yelled at and being sent to the "big" hospital are what I can expect.
Today is day number four of feeling pretty horrible on top of a week of feeling somewhat badly. I have done all of my usual self diagnosis and trying to work through the situation. This time it appears I have a bad UTI, the first bad one not controlled by my Monural in a very long time. Then again, I took a chance and travelled long distance a few weeks ago and had to take an extra dose while away, so it may have been brewing. I am just thankful that it did not get this bad while I was gone.
As part of the process I have to think about all of the things that can happen. If I go to the ER they may send me off and that means I will miss work and have no one to care for the animals. Next week is an important week at work and since I took a few days off recently to travel I cannot take any more off or it will look bad, especially if it is because I am sick. I don't want to leave the dog alone again and don't want to ask my neighbor to help again.
If I go to the ER and they keep me there that would be okay, but then again I am resistent or allergic to antibiotics now so the chance that they will is slim to none. And depending on the mood of the ER doctor who is assigned to my room, who knows what can and will happen. Either way it hasn't been good the last few times. Today is Sunday so if I go to the ER today it and they actually do just give me an IV and send me home then it won't impact work, but that's a slim chance.
So, I took an extra dose of my Pred, drank some Pedialyte on top off the water I am guzzling as usual, and have a warm compress on my body.
Will see how the day goes and see what happens.
There is no choice in some choices..
Today is day number four of feeling pretty horrible on top of a week of feeling somewhat badly. I have done all of my usual self diagnosis and trying to work through the situation. This time it appears I have a bad UTI, the first bad one not controlled by my Monural in a very long time. Then again, I took a chance and travelled long distance a few weeks ago and had to take an extra dose while away, so it may have been brewing. I am just thankful that it did not get this bad while I was gone.
As part of the process I have to think about all of the things that can happen. If I go to the ER they may send me off and that means I will miss work and have no one to care for the animals. Next week is an important week at work and since I took a few days off recently to travel I cannot take any more off or it will look bad, especially if it is because I am sick. I don't want to leave the dog alone again and don't want to ask my neighbor to help again.
If I go to the ER and they keep me there that would be okay, but then again I am resistent or allergic to antibiotics now so the chance that they will is slim to none. And depending on the mood of the ER doctor who is assigned to my room, who knows what can and will happen. Either way it hasn't been good the last few times. Today is Sunday so if I go to the ER today it and they actually do just give me an IV and send me home then it won't impact work, but that's a slim chance.
So, I took an extra dose of my Pred, drank some Pedialyte on top off the water I am guzzling as usual, and have a warm compress on my body.
Will see how the day goes and see what happens.
There is no choice in some choices..
This is what it has come to...
My life revolves around my health and definitely my health insurance. And I admit that the health exchange has been somewhat problematic over the last few years, and every year has been weeks of stupidity to ensure that everthing is taken care of.
But, this year has raised the stupidity bar to a whole new level. Today was the sixth day of calls trying desperately to figure things out. I have been transfered at least five times, told to call the "other" organization several times, hung up on by mistake, put on hold multiple times, and told different things depending on who I was speaking with.
It appears that the insurance that I have been on for the last few years is not being offered in 2018 in my area. Oh, wait a minute, it is, but just not the plan I am on. And the letter that I was sent stating in writing that I was automatically transfered to another plan within that insurance? Well, no one could find that anywhere in their system, never mind the letter they sent. No, wait a minute, one person did see it, but still said that the plan is not showing up. No, wait, it is, but without a subsidy even though it is clearly written on the letter. "Please call the other organization because we are not sure and only see two plans for you, and that is not on the list." "No, you are definitely qualified for that plan, we are not sure what they are speaking of."
This went on for days...back and forth, back and forth.
Okay, then, since no one can get their shit together and my life literally depends on having insurance, what are the choices that you say I DO have? Well, the next explanation was that I can get a different plan through the insurance I currently have but it will cost me over $750 a month. Or, there is another one that I qualify for, but my most important transplant doctors at a major hospital do not take it.
I asked for the hundreth time why I was sent a letter that I am ALREADY automatically enrolled in a plan which is neither of those. Once again, no one could explain. No one could or would try to figure it out because in their system it was not there.
So, what do you do when time is limited and you must make a decision based on two really crappy options. Well, there really is no option if you think about it. There is no way I can afford over $700 a month for a premium and that's that.
The good news, if you can call it that, is that after more calls and research I found out that there is a payment plan and if I call the hospital financial department weeks before an appointment with the code and date they will give me a 25% discount. This is better than nothing. But, what happens when, not if, when I am sent to this hospital because no one at the hospital in my area wants to take care of me because I am "too complicated?" The 25% won't do much when the bills are thousands of dollars.
This is what it has come to. Being forced to choose from the lesser of evils and having another thing to worry about. This means I will be unable to do any of the things I was hoping to do next year because the money which is already so tight will have to be there for those payments.
Because it's not if, it's when.
But, this year has raised the stupidity bar to a whole new level. Today was the sixth day of calls trying desperately to figure things out. I have been transfered at least five times, told to call the "other" organization several times, hung up on by mistake, put on hold multiple times, and told different things depending on who I was speaking with.
It appears that the insurance that I have been on for the last few years is not being offered in 2018 in my area. Oh, wait a minute, it is, but just not the plan I am on. And the letter that I was sent stating in writing that I was automatically transfered to another plan within that insurance? Well, no one could find that anywhere in their system, never mind the letter they sent. No, wait a minute, one person did see it, but still said that the plan is not showing up. No, wait, it is, but without a subsidy even though it is clearly written on the letter. "Please call the other organization because we are not sure and only see two plans for you, and that is not on the list." "No, you are definitely qualified for that plan, we are not sure what they are speaking of."
This went on for days...back and forth, back and forth.
Okay, then, since no one can get their shit together and my life literally depends on having insurance, what are the choices that you say I DO have? Well, the next explanation was that I can get a different plan through the insurance I currently have but it will cost me over $750 a month. Or, there is another one that I qualify for, but my most important transplant doctors at a major hospital do not take it.
I asked for the hundreth time why I was sent a letter that I am ALREADY automatically enrolled in a plan which is neither of those. Once again, no one could explain. No one could or would try to figure it out because in their system it was not there.
So, what do you do when time is limited and you must make a decision based on two really crappy options. Well, there really is no option if you think about it. There is no way I can afford over $700 a month for a premium and that's that.
The good news, if you can call it that, is that after more calls and research I found out that there is a payment plan and if I call the hospital financial department weeks before an appointment with the code and date they will give me a 25% discount. This is better than nothing. But, what happens when, not if, when I am sent to this hospital because no one at the hospital in my area wants to take care of me because I am "too complicated?" The 25% won't do much when the bills are thousands of dollars.
This is what it has come to. Being forced to choose from the lesser of evils and having another thing to worry about. This means I will be unable to do any of the things I was hoping to do next year because the money which is already so tight will have to be there for those payments.
Because it's not if, it's when.
The way the blood flows...
My breasts may be small, but they are dense and full of lumps. Crazy, hey. Because of this I have had to get MRI's as well as mammograms over the years.
Thanks to the worry of cancer, I have also had several biopsies over the years, all so far being non-cancerous. Today I received a call post MRI from a very nice woman who spent five minutes telling me that they saw many cysts and all looked good, but....there was one small 4mm spot which was worrisome because of the way the blood flowed. Something I heard when I was diagnosed with cancer in my transplanted kidney.
She told me that it is probably nothing, several times, but I need to have an ultrasound and possible biopsy.
So, it is scheduled for two weeks and, as usual, I will not allow myself to think too much about it until it is time as worrying does not solve anything...right!
Thanks to the worry of cancer, I have also had several biopsies over the years, all so far being non-cancerous. Today I received a call post MRI from a very nice woman who spent five minutes telling me that they saw many cysts and all looked good, but....there was one small 4mm spot which was worrisome because of the way the blood flowed. Something I heard when I was diagnosed with cancer in my transplanted kidney.
She told me that it is probably nothing, several times, but I need to have an ultrasound and possible biopsy.
So, it is scheduled for two weeks and, as usual, I will not allow myself to think too much about it until it is time as worrying does not solve anything...right!
No one will help...
Today sucked, in fact this whole week has sucked. My body is in a war with itself and I am the prisoner. It used to be that my UTI's were simple and I knew my body well. The Adrenal Insufficiency has changed that and now I really have no idea what the hell is going on.
My temp has been so low that it feels like I am dying. At the very same time I am sweating from every pore and can feel all of the symptoms of a fever that will not show itself. My eyes are so painful that it is making me sick to my stomach.
The fact that I am feeling this way and have worked all week in this condition is a testiment to what I do to make things work. It feels like a delirium and I am really not sure if I am all here, even as I write this. It is that stupid temperature drop. It is actually worse than having a real fever I swear.
So, my body is dealing with, fighting with, something. It is a UTI that is not showing in the usual way? I took a dose of my emergency (And last chance) meds last night but did not help. It is the bad sinus infection I have been dealing with? The meds they gave me did not help and I am not willing to risk what little meds I have left in the world as a choice. Is it the menopause issue that was set off because my body thought it was a time of the month to do something...or, is it all of the above or something else? I would go to the doctors, or even the ER, but I know from experience that there is nothing they will do. They will see my temp "looks okay" and if my bloodwork looks okay...they will just send me home with no answers or help. No one understands what Adrenal Insufficiency is, or does to your body. No one will help me. I need help.
I could take a real high dose of Pred, but that will ultimately set off something horrible with my eyes and not sure I can deal with that again.
So, I will just crawl in bed early again and hope tomorrow brings better things..
My temp has been so low that it feels like I am dying. At the very same time I am sweating from every pore and can feel all of the symptoms of a fever that will not show itself. My eyes are so painful that it is making me sick to my stomach.
The fact that I am feeling this way and have worked all week in this condition is a testiment to what I do to make things work. It feels like a delirium and I am really not sure if I am all here, even as I write this. It is that stupid temperature drop. It is actually worse than having a real fever I swear.
So, my body is dealing with, fighting with, something. It is a UTI that is not showing in the usual way? I took a dose of my emergency (And last chance) meds last night but did not help. It is the bad sinus infection I have been dealing with? The meds they gave me did not help and I am not willing to risk what little meds I have left in the world as a choice. Is it the menopause issue that was set off because my body thought it was a time of the month to do something...or, is it all of the above or something else? I would go to the doctors, or even the ER, but I know from experience that there is nothing they will do. They will see my temp "looks okay" and if my bloodwork looks okay...they will just send me home with no answers or help. No one understands what Adrenal Insufficiency is, or does to your body. No one will help me. I need help.
I could take a real high dose of Pred, but that will ultimately set off something horrible with my eyes and not sure I can deal with that again.
So, I will just crawl in bed early again and hope tomorrow brings better things..
French Toast, Anyone!?
So, I may never eat french toast again...but, maybe, who knows.
I would have written this at the time it happened, but unfortunately I was projectile vomitting, had serious diarrhea and a fever of almost 103. All thanks to a brunch of french toast at a so-called respectable restaurant. And, three other people got food poisoning as well from the french toast, but of course, I am the only one who ended up in the hospital.
After spending the whole night screaming in pain and basically making my bathroom an incredible mess, I was so exhausted and sick I could not get out of bed. I was afraid to call the ambulance knowing they would automatically take me to the "big city" hospital rather than the one here, just because I am a transplant patient, so I finally got a ride to the nearest hospital by a knight in shining armor who just happened to be suffering from the same food poisoning. Asking for help in this manner was a big step for me, but the fear of being shipped off with no questions asked is bad enough to make me lower my independence streak once in a while, ha!
Luckily for me I got an ER doctor who had a rational side and ended up admitting me at his hospital. It was close though as he pondered the situation for a while and made me nervous. Nothing like having to stress about stupid things when you are so sick!!
After 24 hours being filled full of antibiotics and IV steroids I was feeling better and sent home. Not until the hospital doctor came in to meet with me and decide whether to discharge me or not as they were freaked out that I had a UTI when I came in which made me laugh...not in a good way. As I explained, I hadn't been able to drink for more than 10 hours, I had serious diarrhea and vomitting and was incredibly dehydrated, so what did they expect!? That concept seemed to be confusing for them...
Being a transplant patient in this town really scares the medical world and that is a shame. But, this time it worked out and I was able to be treated like a "normal" person. I am thankful for that.
Still not eating french toast....I don't think...
I would have written this at the time it happened, but unfortunately I was projectile vomitting, had serious diarrhea and a fever of almost 103. All thanks to a brunch of french toast at a so-called respectable restaurant. And, three other people got food poisoning as well from the french toast, but of course, I am the only one who ended up in the hospital.
After spending the whole night screaming in pain and basically making my bathroom an incredible mess, I was so exhausted and sick I could not get out of bed. I was afraid to call the ambulance knowing they would automatically take me to the "big city" hospital rather than the one here, just because I am a transplant patient, so I finally got a ride to the nearest hospital by a knight in shining armor who just happened to be suffering from the same food poisoning. Asking for help in this manner was a big step for me, but the fear of being shipped off with no questions asked is bad enough to make me lower my independence streak once in a while, ha!
Luckily for me I got an ER doctor who had a rational side and ended up admitting me at his hospital. It was close though as he pondered the situation for a while and made me nervous. Nothing like having to stress about stupid things when you are so sick!!
After 24 hours being filled full of antibiotics and IV steroids I was feeling better and sent home. Not until the hospital doctor came in to meet with me and decide whether to discharge me or not as they were freaked out that I had a UTI when I came in which made me laugh...not in a good way. As I explained, I hadn't been able to drink for more than 10 hours, I had serious diarrhea and vomitting and was incredibly dehydrated, so what did they expect!? That concept seemed to be confusing for them...
Being a transplant patient in this town really scares the medical world and that is a shame. But, this time it worked out and I was able to be treated like a "normal" person. I am thankful for that.
Still not eating french toast....I don't think...
May 9, 2018
Today's, amazing enough, is the ninteen year anniversary of my kidney transplant. It's difficult to express properly what these years have been like. Impossible to convey what has happened, who I have had a chance to become, the things I have been able to do...only because I was given a chance to live by someone else's decision.
Dave died in 2010, and we were together 17 years before then. So, his kidney which resides inside me means even more as I am solely responsible for keeping him alive...as he is keeping me alive...
I am grateful for the good, the bad and everything in between. I am honestly peaceful and do my best to make sure that my gift, all the gifts along the way of my life, are appreciated and that I do my best to be the best person I can be. It's all we can do, and everything we should do!
Knowing Dave is Free in Spirit makes me smile...
Dave died in 2010, and we were together 17 years before then. So, his kidney which resides inside me means even more as I am solely responsible for keeping him alive...as he is keeping me alive...
I am grateful for the good, the bad and everything in between. I am honestly peaceful and do my best to make sure that my gift, all the gifts along the way of my life, are appreciated and that I do my best to be the best person I can be. It's all we can do, and everything we should do!
Knowing Dave is Free in Spirit makes me smile...