Constant viruses

[Jessface]

Hello there, I've just joined this group. I had my transplant 8 years ago and it's going well so I am very lucky. I do however, get constantly ill. My son is 2 and brings back viruses from nursery that have hospitalised me 6 times this year. I live in London and am wondering whether moving out of the city might help. Does anyone have any experience of how to improve their body's responses to illness and or what they've done to tackle this issue we have with immunosuppression. It's slowly breaking me and I'm not sure how much more illness I can take. Thank you.

[Balap]

Cellcept, Mycophenylate sodium, Azoran(Immuran) can weaken the body's immune system and affects the ability to fight infections. Adjusting the dosage of immuno medicines might help. what is your dosage?

[Jessface in reply to Balap]

I'm only in 3/2 tacrolimus so quite a minimal dose. I can talk to the team about charging meds if that might help?

[Karan6789]

Please take your flu shot every year.It will protect you from viral infections.

For bacterial infections you need to take precautions as we all are prone to bacterial infections because of immunosuppressive medication

[Jessface in reply to Karan6789]

I take all the vaccines I can get my hands on! 😂

[Karan6789 in reply to Jessface]

😁😁whats your dosage for immunosuppressants?

[Jessface in reply to Karan6789]

I'm only in 3/2 if tacrolimus so it's not high at all.

[Eyak1971]

My doctor has had me on SMZ the past 3 years since my transplant. Take it twice a week.

[Jessface in reply to Eyak1971]

What's SMZ please?

[Eyak1971 in reply to Jessface]

Antibiotic. Sometimes called bactrium.

[Okiksaints1955]

I knew transplant will require a ton of preventive maintenance in place. Here is what I put in placeAt home;

1. All entrances have cleansing stations. It's just a basket with sanitizer or alchohol spray and sanitizing wipes and a foot rig (sprayed with alchohol). Everyone (family and visitors) who comes in goes thru the cleansing process (2-3 minutes). I explained to them and they understand.

2. Shoes are left at the door. Slippers are worn inside the house

3. Coming from outside, all clothes goes straight to the laundry box (at the entrances).

If it will be re-used, we spray it with Fabreeze.

4. We sanitize the house every week. Toilets are daily (body fluids contain lits of germs). Takes less than half an hour for a 5 bedroom house

A lot of cheap sanitizing machines online.

Outside home:

1. I wear masks everywhere, except when eating. It helps that I live in Asia where masks are worn long before covid. I avoid crowded places or stay there max of 15 minutes.

2. I carry sanitizer (alchohol spray) everywhere. I used it generously.

3. When travelling and will stay in a hotel, we bring along Lysol or Dettol spray. The room is sanitized before we come in.

4. When eating outside, we sanitize the table, chairs, etc.

More......

Sometimes, people still stare (even if we are already in Asia). But I don't care - I protect myself as best possible. My family helps me keep safe by being careful also.

Lot of discipline but I/we already got used to it. It now part of my/our routine.

I hope you get the gist of what I am sharing. You too can create a semi-bubble environments that suits you, regardless of where you live.

Hope this helps

[PostivelyJo]

I live in London . I don’t experience this . Do you use bus and tube much ? Talk to your team about drug changes ? Having a small child at school must really open up the chances of exposure , this might well happen in the countryside too as the over sharing of bugs in nursery school is universal .?

You seem to ge having a very tough time of it which must be very tricky with a young child to look after too.

Best of luck .

[Jessface in reply to PostivelyJo]

Yes, all the bugs this year have been bought home by him from nursery. He's ill for a couple of days then I'm struck down seriously. I WFH most of the time and rarely get on transport since the pandemic so it must just be that. I keep thinking it will get better when his immune system builds but it's every month or 2. Thank you, I will speak to the docs about my choices. Changing meds is quite a scary prospect when my transplant itself has been going very well.

[PostivelyJo]

I’ve changed meds twice. I’m 3 years in and it is scary decision .

I am now off Prednisolone and then swapped MMF because of sore stomach first to Ceptava ( Mycrophenolic acid) and then to Azathioprine which has helped.

I’m at Guys and they are hugely supportive of discussions with meds.

Since changing my stomach issues are better my EFGR went up and Creatinine went down. I have no idea where my immune system stands. I did get Covid a month ago but had the infusion of antibodies.

I imagine it’s extremely stressful raising young children after a transplant. Mine are both in their 20s and living away ( most of the time)

Are you looking after your self enough - emotionally . Stress plays a huge part in illness and recovery ? A transplant seems to me to be a subconscious full time job so you have a lot in your plate.

Jo

[PostivelyJo]

are you only on Tacro ? Nothing else ? If so I’d have thought your immune system was pretty good ?

I really think you need some TLC

[Jessface in reply to PostivelyJo]

Thank you. I have plenty of tlc and support around me but I also work way too hard and so I do think a change in lifestyle is needed to get my energy stores to where they should be in order to contend at illness when it comes.

I'm glad to hear you sorted your issues and it's good to know you can change meds without problems. I'll speak to the team about it all and see what they suggest. Thanks for your advice. X

[smmahone in reply to Jessface]

I am almost 4 years in and can't imagine raising a 2 year old. Credit to you. It seems from my own experience everyone has different experiences. I would suggest to focus on your own natural immune system getting rest eating well exercise and enjoy your son

[Capecorp]

So sorry to hear you’ve been hospitalized. This year has been brutal for viruses with so many colds and flu strains, never mind covid still doing the rounds. We have three older children in school (well capable of good hand washing and covering their sneezes) and I can count on one hand the days we have all been well. Toddlers are the best at sharing coughs, colds and tummy bugs and many have a lot of catching up to do after all the isolations and masking etc. of the past couple of years so you’re really in the thick of it right now. It does get much easier as they get bigger.

Talk to your team to see what they suggest. My transplanted husband was advised to take vitamin D daily. If you’re able to take a really good multivitamin supplement that could help. I wish you all the best - hopefully next year will be gentler.

[Jessface in reply to Capecorp]

Thank you for your kind words and advice. X

[Hidden]

Jessface, congratulations on receiving a kidney transplant! I received one 4 months ago. The first 3 months were tough with constant, multiple infections. My Mycophenolate was brought down to 500mg (2x daily), Prednisone to 5mg, and Prograf to 3mg (2x daily). I currently have the BK virus, which is decreasing in number and was told it can take up to a year to get rid of. I am on Acyclovir 400mg (2x daily) and Sulfameth /Trimethoprim 400/80mg once daily. Both serve as prophylactic antibiotics and will be eventually discontinued, I believe. I am now holding my own. Good nutrition, exercise, vitamins, like Vitamins C,D3 and K2 along with Zinc are very valuable. I also use a povidone iodine nasal spray and gargle (Betadine) when I go out, especially. These protect against viruses entering via the nose and mouth or having them replicate in the body. If moving is an option, I would recommend it as long as you are able to receive good care in the new location. Decreasing stress is important for your health and as a mother. If you can establish a healthier lifestyle for you and your family, everyone wins. Best of luck with everything.

[Dna4christ]

Hello there!! I have a four year old boy and that was my biggest concern. He would get sick so often which automatically made me ill as well. I’m no longer worried after receiving this plasmabank gadget from a family friend of ours.. I’m not here to advertise. Just sharing what has helped our family including my parents and several of my friends. We wear this especially when we go outside (even without masks— not encouraging not to wear masks ofc) and I haven’t gotten sick since I have been wearing this. At first, I was very skeptical. It has been almost 7 months and so far so good! Colds and flus have been away and everyone knows I get sick several times especially during winter months. If my son gets a cold, I would wear it at home as well. It has helped us so much!! Im simply sharing what works for me. Hope that helps! Happy New Year!!

Forgot to mention that I used to get the flu 3-4x around this time of the year even with the flu shot, and I tried my best to stay away from sick people and quarantined myself in my room when my boy got sick. My husband would take care of him. Tough times. It’s better now . I feel you. Hang in there.

Back of plasma bank anti virus

[MToQ]

When I had my transplant, my child was 4 yrs old. I was on dialysis before that. In both caes,...It's really hard to fight off infections when you have a little one. Here is what I did when I started dialysis and worked pretty well for me. Have whoever picks him up wash his and their hands properly before leaving the nursery and again when he gets home. I find using touchless soap dispenser easier and they think it's more fun. Liquid vs foam so that it takes a little bit longer to wash off Sing a funny 20 second song or make one up. Anyone that walks into your house should also wash their hands as soon as they come in or at a minimum use sanitizer. Helps if you have some right by the door. Change him out of his clothes and put fresh clean outfit on. Make sure he gets plenty of real fruits, vegetables and water so that he has a healthy immune system. Same for you! When he is sick, if you can, have him wear a mask at the nursery and at home. And you should as well. Same when anyone in your household is sick. I bought funny kids masks and made it like it was part of a costume. I found putting it on a colorful lanyard also helps them from losing it. By all means dress him up in a costume if that helps him wear a mask. Let the nursery know why you are doing this and let/encourage him keep it on. Perhaps leave an extra box of masks there so other kids can "join in on the fun" if they want, even if they are healthy. Also, so that there would be clean fresh ones there if it needs to get changed because it got wet, dropped, dirty, etc. I find that masks also help the kids from unnecessarily touching or putting things their mouths. Adults, too!

Let him know that wearing a mask really helps mommy stay healthy and at home with him verses having to go to the hospital and being away from him. I told my son that some people, like me, tend to catch colds and such more easily and that we need extra help staying healthy and that when we get sick, it takes us a super long time to get over it. Plus, in general, it keeps others healthy, too. Read/show him picture books/youtube videos about hand hygiene, immune systems and fighting germs so he starts to understand. I find that when adults wear masks when they are sick and aren't grumpy about it, then usually the kids won't be either. Be patient. Some kids dislike wearing masks. He might only wear it for a little while at a time but eventually won't be that big of a deal. Fortunately, mine didn't have an issue wearing masks from the get go. Although, I did have to explain and remind him why several times when he asked if he could take it off when he was sick. But he always wanted to help keep me safe and healthy so he was and is pretty good about wearing one.

Wash your hands and his often at home, too. Nothing crazy, just what docs normally suggest for healthy folks; wash before eating, after going to the loo, after the playground/playing outside, before handling food and after blowing your nose. Try to make this a household habit so it's a normal expectation.

If you haven't already, teach him to cough into his elbow and not his hand. It is a hard habit to break for those who were taught to simply cover their mouths with their hands when they coughed. I told my son that if he ever catches me not practicing proper hand hygiene to call me out so that we can help each other be better at it. And that we all forget sometimes but as long as we try, that's what is most important. Plus, he would get a penny each time! Then it went went to a dime. These days it is a quarter

When my son was super young, I carried around soap wipes instead antibacterial ones or hand sanitizer. Better for their tender skin. We still use the soap wipes before eating if we are out and about and no convenient sink around. Oh, definitely ask the nursery to have him wash his hands before snacks and lunch if they don't already.

In general, we do not share utensils nor cups, straws or water bottles. We try not to eat off of each others plates. Definitely not when someone is sick.

Hard but if you can, have someone else take care of him at home when he is sick. Sleep in separate rooms. Keep your mask on when saying good night and good morning to him. Get good HEPA air purifiers for your house. Esp. bedrooms and his play area.

Speaking of play areas...I sanitized my sons toys weekly. I also changed his pillowcase everyday when he was sick since it's basically their hanky at night! And I sanitized his toothbrush more often when he was sick.

Get enough sleep and rest. Easy on the stress. Stress nearly killed me. I dropped from 16% kidney function to 0% in less than 2 years when I was on dialysis. Self care is paramount. Try to ask for help when you need it.

Lastly, try not to kiss each other on the mouth. I give my son tons of kisses but rarely, if ever, on his mouth since he was a baby. Same for anyone else who wanted/wants to kiss him. Grandparents!!

Apologies, this ended up so long. I hope it helps. My son didn't get his first cold until he was a year and a half old and has only had a cold/cough/flu a handful of times He is 8 yrs old now. Although, I did catch several of his colds/flu but not all! Mostly after my transplant. It took me weeks, if not, months to get over them, especially the coughs! You can only just do your best

PS. I live in a big city in the US and in my opinion, I don't think it's necessarily better in the suburbs or the country. In my experience, folks are the same and even less likely to wear masks when sick.

Good luck!