Hi, I was diagnosed with FSGS 2.5 years ago. It took 2 years to get the disease under controI and even then it is only in partial remission. I have had psoriasis for over 30 years and just like the chronic kidney disease, developed severe psoriatic arthritis out of the blue (and since the kidney diagnosis). I am on 3 immunosuppressants (myfortic, cosentyx and methotrexate). Despite this, my psoriasis is active and I am having flare-ups with my arthritis. Because of this, my nephorologist has instructed me to not get the covid vaccine. She believes my gfr will drop just as it did with another patient in similar situation as me. So question is: Has anyone else been told not to get vaccine? Did anyone have adverse effects from getting it?
On another note, I can not shake the feeling of impending doom and a sense I haven't got long to live or until complete kidney failure. I see my retirement date in 19 months as a goal to reach so my family can benefit from my government pension. I am selling my possessions that won't be needed when I'm gone like my card and jersey collections. I have lost all interest in the future, goals I can pursue in life, friends, hobbies, travel, music and sports. I have disconnected from my siblings. The future is black. I'm sure covid contributes to this and the fact I was on sick leave for 2 years followed by working from home for the last 6 months. Already on meds for anxiety and depression. I guess I need adjustments.
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dogdayafter12
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You need to find a different rheumatologist. I have both psoriasis and Psa and have been on a combination of drugs for over 12 years. Right now I am on Orencia infusions. My PsA and P are well maintained. One thing about PsA is it can produce high uric acid which can cause kidney stones so be careful with it. Have you uric acid or urate levels checked by labs often. It make an amazing difference once you get that under control too. The drugs, methotextrate is old school and can cause some issues down the line. They start with that as the insurance companies want a failure on a drug before they move you to better drugs. But you can push for something that works better and is not chemotherapy used for cancer.
Having CKD is not the end of the world. Its all about attitude and finding the right health care. I was diagnosed at stage 4, and was told to prepare for dialysis. That was over 3 years ago and I am doing fine. Diet and healthy lifestyle really made all the difference. There is a lot more you can do to control your disease. Hang in there.
And as far as the shot, my rheumatologist and nephrologist both insisted on it. I had no issues with it either and have had both doses.
Be the center of your health care. This is what patient centered care is.
Best of luck and I hope you find a rheumatologist who puts you first.
Hi, remission is not a word I'd use for CKD. The C stands for chronic. It never goes away. The best you can do is slow the progression.I received my two COVID shots back in March. No reaction either time, either at the injection site or in labs that followed.
As Bassettmommer suggested get a second opinion.
Perhaps you should seek assistance from a knowledgeable psychologist who can help you get over the "impending doom" feeling. Why sell off your valuable possessions? Wouldn't your family benefit from those items when you do pass?
Stick to your kidney-friendly meal plan, your exercise regimen, and keep up with your medications and make your family wait another 30+ years before you leave them.
Friends and families are the best part of our lives, don't allow yourself to lose that resource that can see you through life's ups and downs.
My GFR average over the past 4 years was 52. It recently went down to 50 due to an unrelated issue.
Stress can be a limiting factor as you know and family and friends are a huge help.
I've got surgery coming up next month and another medical procedure after that and without family and friends, I'd be lost.
Re the shot, that must always be a personal choice which I believe is based on a personal risk profile. As suggested, a 2nd opinion may be worthwhile but ultimately it's your decision.
Re adverse effects, the thyroid section of this forum has a separate section for those that have experienced them and have thyroid issues. I'm unaware of one for kidney disease section?
Hi dogdayafter12 welcome to the community. I am worried about your mood and one of the best thing you can do is to find someone to talk about it. A close relative or a friend, or a community like this one. If nothing works don't be ashamed to ask for professional help, not someone to prescribe you drugs but someone to help you challenge your thoughts or perhaps give you a little push and help you see the positive. Perhaps all that you need is to talk to a social worker, someone that could help you be accountable (i.e. commit to try relaxation/meditation or else). My nutritionist certainly serve this purpose with my food journal.
Perhaps getting a proper financial plan will help you reduce some of the stress. You don't have an expiration date and should plan accordingly. I am looking at an earlier retirement and everything will be less cozy but certainly livable. If you fear is to be on social welfare at some point then educate yourself about it and plan accordingly. It won't be the end and could probably take financial decision to get to this point later rather than sooner.
Looking back at my past year I think I was depressed and I am certainly less motivated than I used to be. I felt anger, I was angry. The more I was digging the more I was finding negativity (lower life expectancy, ~69% had lower income, co-morbidity, protein restrictions and lots of unknown regarding CKD in general). My co-workers think that all I need to do is to drink more water and call me Dr. One of my family member is more frustrated than me about the fact that I am keeping my food in check and keeping my meat intake in moderate quantity while avoiding processed meats. And another non-sense that I prefer not to talk about.
I could fill my entire day with negativity without trying. But something that this book taught me (10 minute mental toughness - amazon.com/10-Minute-Toughn... ) was to be solution-focused and all it made me do was to fill a journal and write down 3 things that went well and pick only 1 that didn't and 2 things that would improve it. I was extremely skeptical and first time I did this it probably took me 45 minutes and I had no health issues at the time! After a few weeks it started to pay off.
I am not a titan nor a saint, I still had my up and down and my performance in the last 6 months have been far from perfect. What matters most is that I am decided embrace this new reality to eat, sleep and exercise to manage my disease. My motivation is low by my determination is stronger. If need be I'll hire a life coach to give me a kick in the a**. Just about everything I have tried have been much harder and much slower than I expected. Oh well, something else to improve.
I think it's important for you to embrace the reality and still be yourself. What will you do about it. One that struck me the most is that the co-morbidity are worse than the disease. You are more likely to die from a heart attack than CKD, diabetes and high blood pressure is likely to do more damage to your kidneys than the disease itself.
Find ways to relax, ways to improve your nutrition and your sleep. Exercise is the only drug that has no side effects, use it and do what you can. I had my shares of setbacks and feel like I need to balance my electrolytes like an Olympic athlete and let me tell you, the struggle is totally worth it. Sauna, warm bath and massages help me relax. I should probably add meditation to the list. Don't be afraid to try something new, it's worth it.
To answer your question I am currently in stage 3a and received 2 doses of Moderna. All that I know is that side effects (include pain at the injection site) are most common on the 2nd dose. First dose I felt a bit weak and took the week-end off. The 2nd dose felt like a placebo at first and started to kick-in as I was going to bed and had chills that make me feel like a child again. Nothing horrible really.
I can't quite tell whether the vaccine lowered my GFR as my hydronephrosis does not appear to have been resolved and all symptoms I am experiencing are pointing to those issues, not the vaccine.
I live in Canada and I believe that at some point they were not recommended for immunosuppressed individuals but the latest guidance appear to be quite similar to the one from the CDC. Obviously none of that overrule the opinion and judgement of a doctor and you are entitled to a 2nd opinion. I believe that this CDC guidance could serve as a good starting point (I don't know the US system very well they are likely other documents that are relevant or supersede this one).
I am 66 years old. I still work (from home in the last 2 years). I was diagnosed with CKD +30 years ago. Prior to that, I had HBP, high cholesterol, tachycardia, gout, vertigo and a few more that exasperated my CKD. I had probably spent the equivalent of $S500K thru all these (I started saving when I was in my 30. Am still saving at least 50% of my take home pay). I had a living kidney transplant this year. I run marathons (42k) until 5 years ago. I still jog/walk 6-8K 5 tunes a week. I keep busy
The key to everything is research, prevention, preparation, knowing my options, and acceptance. Not doing this- my mind wonders and goes all over. An idle mind results to depression
I have a one year plan, a 3 year plan and a bucket list. A year after my transplant, I will start running again - one in my bucket list is to run one final marathon at 70. Finish my DIY book in 3 years, be an advocate and help others, see my grand children graduate, etc.
Life is too precious to waste, so I enjoy it day by day. I don't worry for things I cannot control. And I have a good family support.
And most of all, I always pray:
"Lord, grant me the serenity to accept the things I cannot change, courage to change the things I can and the wisdom yo know the difference".
Hi Dogday My daughter is on immunomodulatory drugs for a chronic rheumatic disorder and her rheumatologist strongly recommended she get the vaccine because of the potential severity of symptoms should she get COVID. Apparently cytoxan and rituximab can cause COVID-19 vaccines and others to be less effective but getting vaccinated can give at least some protection. She had her first Pfizer vaccine and had no side effects and is scheduled for her second. Her blood labs didn't show any adverse consequences. I'm so sorry you're feeling so down. I consulted a nutritionist ( had to pay for it as our medical insurance didn't cover it) and by following a strict kidney diet was able to get my GFR up by >20 points and that has helped my outlook. I'd despaired at one point and made poor financial decisions also based on a sense of impending doom. Now I have a slight sense of control over my future which has really helped a lot. I wish you all the best going forward.
Dogday: it sounds as if you've given control of your life over to your medical team. Bad idea. While you can take their advice under advisement, you have to evaluate it yourself. Get some control back. Get a second opinion. Get a different medical team if your current one is not helping. I had to get a whole new medical team two years ago when I realized I was getting the wrong help. My first nephrologist insisted I continue with the medication he prescribed and even doubled the dose even though I was having a bad reaction to it. My head thought he must be right, but my gut said this is crazy. I went with my gut, found a new nephrologist who has been wonderful. Even since then the new doctor shared advice with me and allowed me to make decisions. Mostly. when I said this isnt working, he listened!!! Be so advised.
I was advised by doctors to get the vaccine as soon as possible. Got 1st shot in January and had only a sore injection site for a few hours. With the second shot, I felt tired and napped all day. No other side effects.
I've been a psychologist for forty plus years. Trust me, Meds for anxiety and depression work only IF you work them. Unfortunately, there's no miracle cure. These meds may give you a little boost, but you have to do the rest. You have to talk to others about your feelings, to ask your family and friends for help, you have to watch your diet, you have to follow your exercise plan, and mostly you have to find the right medical team that will listen to you and help you. Hey, it's not easy and we will all attest to that but you got to do it. And, I know you can. Underneath all your sadness and despair. I hear some determination. One step at a time. I'd start by asking your doctors why their treatment is not working. Best and keep us posted. We care.
Thank you everyone who took the time to reply, for the advice and the encouragement. It means a lot.
While my nephorologist does not have a great "bedside manner" and explains things to me like I have a medical degree, she is an excellent doctor with a great reputation. I feel I am in good hands and trust her. She frequently calls me after the blood results (even at 8 in the evening) and replies to emails. She ran every possible test to try to determine why my kidneys are under attack. The first year, I was having blood work almost every single week. The second year, every week or second week. The tests relaxed this year but are ramping up monthly again due to the psoriasis not being under control. It is for that reason she does not want me to get the vaccine.
I'm on my second rheumatologist. The first, the head of rheumatology at a local hospital was terrible. I won't go into it, but he actually forgot to xray my knees! At least he got me fast tracked to cosentyx. The new one seems competent and I like him. As the kidneys take priority he seems more careful and constricted on how he deals with the meds. I see him in a week and will ask him to consult with the kidney specialist.
While I do have a bleak perspective of my future, I do have a good life. Wonderful wife and kids, and a job I love. Dogs to brighten every moment. I had a burn out about 10 years ago and I learned I have had chronic depression at least since my teens. Plus generalized anxiety disorder since who knows when. Had a psychiatrist for 2 years who tried every med, and saw a psychologist weekly for a year. Basically through all these years it has made my mood flat but I'm stable. That's the price I have paid for these happy pills.
I was quite sick for 2 years with kidneys out of whack and all those meds (cyclosporine particularly). Inactivity hasn't helped. When the arthritis isn't flaring I do renovations to the house to keep mind active. Of course, little negative voice says "good to get that done before you are gone." Damn brain.
Anxiety driven question (maybe): Those of you working with the public; are you concerned with studies saying you may not be well protected against the virus? I am an elementary school teacher. In the fall I will be going back when (if) I get the vaccine. Where I live, this is where new cases of the variant from India are showing up.
I will follow the advice you guys have given me. Thanks again!
You should ask that question as a separate post because we are not notified of that comment, it's just the way this platform works. It's a great question and I am certain that you can get great answers and perhaps great links to resources that can further help you.
It might be my own personal perception but while it can be a very useful skill to identify where those thoughts/questions are coming from (e.g. fear, anxiety, anger) you don't need to label yourself that way, AFAIK it's a normal emotion in itself. According to this website (medicalnewstoday.com/articl... it only becomes a problem when it gets out of control; your professional health team know what you should do and not do, I don't. Again, it's a very good question. Paralysis by analysis would be a problem, looking at different options, experiences, opinions and perspectives certainly isn't. I am going through that process right now and the intent is to be better prepared to different outcomes. (edit: It's not what you are asking directly but I do believe that it imply the possibility of a career change.)
While I am not immunosuppressed I hope that my personal perspective/analysis can be of some help. First you say you are a teacher and I think it comes with many upsides. You shouldn't be exposed to many chemicals and your work schedule doesn't prevent you from a fixed sleep routine. Your job security -while not absolute- appear to be much better than the average worker and it's worth its share of gold. Having CKD likely impede your ability to climb up the seniority ladder and I suspect that despite this you are still in a better situation than working in a factory.
Don't be afraid to get in touch with your medical team and ask them directly what you should be worried and what you can do about it. Ask the hard and direct question and expect a direct answer. A good doctor should tell you if your job puts your health at risk. Or if changing to job XYZ would makes the risk lower.
Now that you know you have CKD, have a second look at the different career path and what they can offer. You have an insider view of the school system and you should use it to your advantage as the risk of transition (if it's worth it) has a lot less unknown than working somewhere else. Perhaps aiming to be a school principal would suit you better or maybe not. Being the school janitor probably isn't due to the chronic exposure to chemical. Perhaps that going back to school and earn an extra diploma would give you better job opportunities. Or maybe it won't, it doesn't appear to make sense for me. My job security and financial stability far outweigh the risk and energy required to get a university degree. At least for now.
Also don't forget to have a look at part-time opportunities. They might not suit you right now and likely comes with different or greater risks but they may suit you better in the near or far future. Tutoring might also be worth considering and perhaps could serve as a second source or revenue. Worth mentioning, renting a spare bedroom or basement or garage may achieve the same effect.
I also think that being a teacher makes it feasible to work while experiencing arthritic pain, something that would be harder to achieve as a mechanic for example. And thankfully there is a lot that you can do to improve your quality of life in that regard and push the day where the pain is too much well beyond your retirement date. Fat cells are said to be pro-inflammatory (endocrineweb.com/obesity-in.... As I gained weight and prone to gout I can tell you that this look and feel like a vicious circle. Everything got worse and my GFR dropped slightly which appear to have made it worse too. Oddly enough, after my initial nutritional adjustments every times I felt I was about to experience a flare-up I'd simply eats lots of fiber, drink extra water .. and then go for a run. It helped me reduce the amount of flare-up to 0-2/year. Right now I am too heavy to do just that but since I have finally started to break that vicious circle I am starting to feel much better.
And locations, moving inside or outside the State may or may not makes sense at all. Perhaps moving to a warmer climate would be desirable at retirement only.
As for the risk related to Covid, it's nearly impossible to properly assess. Something to confirm with your medical team but I do believe that you are less likely to catch life-threatening disease working with kids than full grown adults. The risk might not be that much higher as you might think and you would more or less work with the same group, a privilege that a salesman wouldn't have. Meat-packing industries and warehouse workers also had Covid outbreak. You don't need to work with the public to be at risk of exposure, what we are told is that school exposures are merely a reflection of the transmission happening for the rest of the population. It's best to assume that this dynamic will change over time, not as something set in stone.
As for the variants, my understanding that those mutations appear randomly across the globe, the so-called "UK" or "Indian" variant may have appeared first in those countries but some or all of the mutation will manifest themselves in new patients across the globe somewhat randomly, AFAIK it happened in patient that have never travelled or exposed to traveler.
Best is to assume that the Delta variant is everywhere. Most countries do not have the resources to genetically sequence every single positive test so it's most likely under-reported.
If you end up going into deeper and deeper analysis and projections, make sure to start concrete action at some point. What may look like an eternal analysis can be much simplified with real-world data.
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